Hi Guys,
Just a very quick update on Tuesday's hospital visit.
Excellent news and the best Christmas present ....my CA125 ( cancer marker levels) are 17, which is more than I could have wished for, anything under 35 is good!
My liver and kidney function are all fine, and other than the usual low white cell and neutrophil count everything else is pretty tickety boo.
If I could get some photos put up you would see a smiling face .
Questions and answers about the BRCA 2 gene have resulted in another meeting being booked for the "Breast" consultant, and my CT scan is on order for sometime next year!
Just want to thank everyone for continuing to support not only me, but the family too, I really DO appreciate you all.
Wishing everyone a very Happy Christmas!!
Thursday 22 December 2016
Friday 16 December 2016
Friday 16th December
Sitting in the departure lounge at Jersey airport ... But that's today's story, firstly lets go back to December the 3rd!
We had an amazing Bingo/ raffle/chopping hair off night at St Clements Parish hall, with over fifty friends and family attending. My boys did me proud, bringing friends and spending money( also if you were Tom, winning raffle prizes !)
Rena had a JustGiving page where she had already raised over £2,000, so that with the £1,300+ we made on the Bingo made for a large sum of money to go towards Ovacome. http://www.ovacome.org.uk/( my chosen charity) .
It is incredibly humbling to know that someone who cares enough about you can organise ( with mums help!) an event where your chopped off hair will go towards The princess's trust - and monies raised go to a very worthy charity that helps women with ovarian cancer in the uk .
I was hoping that by now there would have been a write up in the local paper, as we did have a photographer , but nothing so far, also Ovacome bring out a quarterly magazine and they want to do a piece about Rena and myself, which we are pleased to do of course.
Words are not adequate but for now a very large capital letters THANK YOU , will have to suffice . :-)
Since finishing radiotherapy on the 4th November ( seems a long time ago now) I have had a few side effects. Although I believe I have been more fortunate than most. It wasn't until about ten days after the last dose that the extreme tiredness really hit me- I really couldn't do much at all, except sleep ( and visit the toilet at fairly regular intervals) . Bouts of nausea but no actual sickness thank goodness.
I basically spent a week sofa surfing, unable to even do a gentle(!) dog walk, mind you the weather was appalling so I felt very lucky (!) to be able to be nursed by Dan, sit by the fire and have hot drinks made for me.
Anyway, moving on, I am getting back into the swing of things now, picking up the sporting activities, going on dog walks, gardening, shopping, cleaning etc. Still not 100% but much better than I was, and as hubby pointed out, the radiotherapy is accumulative, it has still been working since finishing the last dose , and as I'm now six weeks further on I should only now be starting to recover.
He's right of course.
Back to today and why I'm at the airport. My friend had to fly back to Southampton for more treatment and I have a feeling she won't be home for Christmas , and so hoping to cheer her up ( although other people would say the opposite!) I thought I'd just fly over for the day. Unfortunately the only direct flights now from Jersey to Southampton are 7 am returning at 7:50pm, so it does make for quite a long day. However it means I can spend longer with my friend.
I have a hospital appointment on Tuesday with my consultant ( in Jersey) , hopefully all is well post radiotherapy and I will find out when my CT scan has been booked.
I also have questions to ask, as I received a letter in the post yesterday from Guys hospital in London as a follow up regarding my genetic testing.
It seems I carry a mutation of the BRCA 2 gene, which gives me a greater risk of getting Ovarian and breast cancer. Some things you wish you'd known earlier! It's probably inherited and passed down from my fathers side of the family , as he had three half sisters who died from Ovarian , a half brother who had bowel cancer, and he himself had a urinary/prostate cancer.
This means that it is worth my siblings getting checked themselves as forewarned is forearmed, and now my own children are aware they can decide if they wish in the future, to be checked.
Had I had this information I would have had a hysterectomy in my forties, as I found out my American half cousin did, but I didn't know about these aunts until two years ago! C'est la vie .
- Posted using BlogPress from my iPad
We had an amazing Bingo/ raffle/chopping hair off night at St Clements Parish hall, with over fifty friends and family attending. My boys did me proud, bringing friends and spending money( also if you were Tom, winning raffle prizes !)
Rena had a JustGiving page where she had already raised over £2,000, so that with the £1,300+ we made on the Bingo made for a large sum of money to go towards Ovacome. http://www.ovacome.org.uk/( my chosen charity) .
It is incredibly humbling to know that someone who cares enough about you can organise ( with mums help!) an event where your chopped off hair will go towards The princess's trust - and monies raised go to a very worthy charity that helps women with ovarian cancer in the uk .
I was hoping that by now there would have been a write up in the local paper, as we did have a photographer , but nothing so far, also Ovacome bring out a quarterly magazine and they want to do a piece about Rena and myself, which we are pleased to do of course.
Words are not adequate but for now a very large capital letters THANK YOU , will have to suffice . :-)
Since finishing radiotherapy on the 4th November ( seems a long time ago now) I have had a few side effects. Although I believe I have been more fortunate than most. It wasn't until about ten days after the last dose that the extreme tiredness really hit me- I really couldn't do much at all, except sleep ( and visit the toilet at fairly regular intervals) . Bouts of nausea but no actual sickness thank goodness.
I basically spent a week sofa surfing, unable to even do a gentle(!) dog walk, mind you the weather was appalling so I felt very lucky (!) to be able to be nursed by Dan, sit by the fire and have hot drinks made for me.
Anyway, moving on, I am getting back into the swing of things now, picking up the sporting activities, going on dog walks, gardening, shopping, cleaning etc. Still not 100% but much better than I was, and as hubby pointed out, the radiotherapy is accumulative, it has still been working since finishing the last dose , and as I'm now six weeks further on I should only now be starting to recover.
He's right of course.
Back to today and why I'm at the airport. My friend had to fly back to Southampton for more treatment and I have a feeling she won't be home for Christmas , and so hoping to cheer her up ( although other people would say the opposite!) I thought I'd just fly over for the day. Unfortunately the only direct flights now from Jersey to Southampton are 7 am returning at 7:50pm, so it does make for quite a long day. However it means I can spend longer with my friend.
I have a hospital appointment on Tuesday with my consultant ( in Jersey) , hopefully all is well post radiotherapy and I will find out when my CT scan has been booked.
I also have questions to ask, as I received a letter in the post yesterday from Guys hospital in London as a follow up regarding my genetic testing.
It seems I carry a mutation of the BRCA 2 gene, which gives me a greater risk of getting Ovarian and breast cancer. Some things you wish you'd known earlier! It's probably inherited and passed down from my fathers side of the family , as he had three half sisters who died from Ovarian , a half brother who had bowel cancer, and he himself had a urinary/prostate cancer.
This means that it is worth my siblings getting checked themselves as forewarned is forearmed, and now my own children are aware they can decide if they wish in the future, to be checked.
Had I had this information I would have had a hysterectomy in my forties, as I found out my American half cousin did, but I didn't know about these aunts until two years ago! C'est la vie .
- Posted using BlogPress from my iPad
Wednesday 14 December 2016
Wednesday December 14th
Hello, I am very sorry that I have been so lax with the blog posts over the last few weeks. As with everybody's lives, it's been a busy time.
There is much to tell and I will be writing all about the various comings and goings in the family unit, and the wider circle of friends and acquaintances .
I have been reprimanded by my hubby ( amongst others ) as folks have been concerned by the lack of publication.
Normal (?) service will be resumed shortly .... :-)
- Posted using BlogPress from my iPad
Location:December 14th 2016
Wednesday 23 November 2016
Moving On....
I do feel SO much better this week, although It took me until Monday before I felt fit enough to take the dogs out for a walk on my own. I am trying to "take it easy" and limit the amount of exercise and "pottering' I do on a daily basis, as there is no way I want to feel that rubbish again for a wee while ( actually if at all!!)
The family ( and friends) have been amazing , if slightly annoying with their constant moaning and nagging, but I actually was so tired that I complied, and "listened to my body" which did need rest and recuperation.
Big thanks to CM and LT for their family food contribution, very gratefully recieved, ( the boys were made up, which doesn't say much for my cooking!!!
Played racquetball this morning, and was pleased to last the hour and manage a fair bit of running, so maybe I will actually be able to go up to netball on Monday and play a six minute half! Crumbs its next Saturday the 3rd December that we have the Bingo/chopping off Rena's hair night. Think Dan has roped at least 10 mates into coming, so for all those ladies making cakes (including me..make lots!!)
Jess has been to the vet today to have a canine removed, it had chipped and was going bad, so needed taking out, she wasn't in any obvious pain, but dogs don't apparently show pain the way we do, mind you I had pain when I saw the bill- that's one of the down sides of being a pet owner. She's worth it though, its her and Beanie that give me the best welcome when I walk in the door- even if its 'cupboard love', as I'm the one that feeds them!!
I have made a Christmas cake ( of sorts- i never quite know how it will turn out... and Tom says don't put much Brandy in.. isn't that the best part?) I've also made a start on the few Christmas cards I send, only because I write letters in some of them- yes, old fashioned I know, but not everyone I know is on the internet!
Talking of the internet, we had quite a laugh around the table the other day. Nowadays when someone queries a date or a fact, its easy to go on line and look it up, and I'm afraid long gone are the days when we 'banned' phones from the table. A sad state, but providing they mostly stay in pockets that's fine. Anyway, Papa was staying for supper and at the end of the meal when folks were clearing up, two of the family were on their mobiles, and Papa not wanting to appear left out announced "I'll just get my phone out", and retrieving his mobile from his pocket starting randomly punching the screen.
Bear in mind, that he has an extremely old, very small Nokia, with no internet access, it was a pretty futile exercise, but one that made us all laugh. He does text ( not predictive so takes quite a while, especially with 'sausage" fingers ( that man has hands as large as shovels, not spades, shovels), and it can make calls, and that's about it, but as he says, just right for what he wants/needs.
I think as he is going to be EIGHTY ONE next week, that's pretty good going!!
Thursday 17 November 2016
Highs and ......
Yes, you've guessed it, I'm now most definitely on a 'low', not unexpected but certainly unwanted!
As usual Steve spins it around and says thank goodness I didnt feel like this in London, either during treatment or over the last weekend when we watched the tennis at the ATP world final in the 02. That really would have been miserable.
We spent two days watching tennis ( and hockey) plus meeting up with friends, and having never been to the 02, that itself was an experience. Arriving back in the Island late Monday night, we were all tired, but come Tuesday morning it was a real struggle to get out of bed.
The dogs dragged me out for a walk, which I found a real effort and by the time I got back home I knew there was no way I'd go to my yoga class. Jack was home and took one look at my little sad tearful face, and sent me off to bed!!
I slept, and slept some more, with Dan bringing me water at regular intervals and checking up on me, getting up early afternoon I managed half a sandwich, but felt quite nauseous and unfortunately what was worse had to visit the toilet fairly frequently. All classic symptoms of radiotherapy.
I slept the afternoon away, and got up again at about 9pm, thinking I need to eat and also I'll never sleep tonight! I made myself porridge which was a mistake because I thought I'd be sick, and promptly took myself back to bed, where, despite my earlier reservations I did more sleeping!
Wednesday I felt pretty much the same, but got up and showered, took an anti sickness pill, which has helped with the nausea, but the toilet trips have not relented, and that in itself is exhausting. I'm trying to drink lots of fluid to compensate.
Out of the blue I had a call from Macmillan to see if I wanted to have some complimentary therapy, as they'd had a cancellation, so i went in at 11am for an hour, but even that was tiring! Back home i didnt really move from the sofa or the well lit fire (courtesy of Nurse Dan), but did stay awake long enough to see Murray play Nishikori on TV in the afternoon!
This morning I thought I felt better, and as my husband bailed on the dog walking ( that was a joke darling) and Dan was still in bed, I'd take the girls to the beach for a run. It was good to be outside in the fresh blowy sea air, and I didn't feel too bad. However by the time I got home I left Dan to sort the dogs out, and I lay down on the sofa and promptly went to sleep- by the time I came around he had lit the fire again and made me a hot drink.
Now I'm writing the blog, still feeling a bit sorry for myself and a tincy bit frustrated, BUT i should make good use of this enforced confinement and focus on the things i CAN do, and aren't I lucky to have family around to look after me, although I do have to draw the line at Dan's comment as he left the house yesterday afternoon for a meeting.
He gave me stern instructions that I was not allowed to walk the dogs ( I had considered it, but, and this makes me realise how tired I actually am, I dont have the energy), with his parting words still ringing in my ears "If you walk the dogs I'll punch you in the liver....hard". I dont think he actually means it......
If you knew our family well, this is the normal type conversation between the boys on a fairly regular basis, so readers don't be alarmed!!
As you can see still no luck with the photo uploads, I'm sure its fairly simple, but not apparent to me and my radiobrain. 😁
As usual Steve spins it around and says thank goodness I didnt feel like this in London, either during treatment or over the last weekend when we watched the tennis at the ATP world final in the 02. That really would have been miserable.
We spent two days watching tennis ( and hockey) plus meeting up with friends, and having never been to the 02, that itself was an experience. Arriving back in the Island late Monday night, we were all tired, but come Tuesday morning it was a real struggle to get out of bed.
The dogs dragged me out for a walk, which I found a real effort and by the time I got back home I knew there was no way I'd go to my yoga class. Jack was home and took one look at my little sad tearful face, and sent me off to bed!!
I slept, and slept some more, with Dan bringing me water at regular intervals and checking up on me, getting up early afternoon I managed half a sandwich, but felt quite nauseous and unfortunately what was worse had to visit the toilet fairly frequently. All classic symptoms of radiotherapy.
I slept the afternoon away, and got up again at about 9pm, thinking I need to eat and also I'll never sleep tonight! I made myself porridge which was a mistake because I thought I'd be sick, and promptly took myself back to bed, where, despite my earlier reservations I did more sleeping!
Wednesday I felt pretty much the same, but got up and showered, took an anti sickness pill, which has helped with the nausea, but the toilet trips have not relented, and that in itself is exhausting. I'm trying to drink lots of fluid to compensate.
Out of the blue I had a call from Macmillan to see if I wanted to have some complimentary therapy, as they'd had a cancellation, so i went in at 11am for an hour, but even that was tiring! Back home i didnt really move from the sofa or the well lit fire (courtesy of Nurse Dan), but did stay awake long enough to see Murray play Nishikori on TV in the afternoon!
This morning I thought I felt better, and as my husband bailed on the dog walking ( that was a joke darling) and Dan was still in bed, I'd take the girls to the beach for a run. It was good to be outside in the fresh blowy sea air, and I didn't feel too bad. However by the time I got home I left Dan to sort the dogs out, and I lay down on the sofa and promptly went to sleep- by the time I came around he had lit the fire again and made me a hot drink.
Now I'm writing the blog, still feeling a bit sorry for myself and a tincy bit frustrated, BUT i should make good use of this enforced confinement and focus on the things i CAN do, and aren't I lucky to have family around to look after me, although I do have to draw the line at Dan's comment as he left the house yesterday afternoon for a meeting.
He gave me stern instructions that I was not allowed to walk the dogs ( I had considered it, but, and this makes me realise how tired I actually am, I dont have the energy), with his parting words still ringing in my ears "If you walk the dogs I'll punch you in the liver....hard". I dont think he actually means it......
If you knew our family well, this is the normal type conversation between the boys on a fairly regular basis, so readers don't be alarmed!!
As you can see still no luck with the photo uploads, I'm sure its fairly simple, but not apparent to me and my radiobrain. 😁
Thursday 10 November 2016
HOME!
Finally I am taking time out to update this blog, there are so many things happening that I could write about, but to start with I'll just do the basic boring health stuff.
I finished the last fraction (dose) of radiotherapy last Friday 4th November, actually completed my entire treatment as was written in my notes. Amazing as we all know how I 'failed' on the Chemotherapy front....
Dr AT was so lovely, and she seemed very pleased as to how well I tolerated it, but I think so much thought had gone into the planning side. The tumour(s) were enveloped by the pancreas and with the bowel, kidney, and stomach in close proximity it was fine tuning to try and direct the rays(?) into the centre and limit the damage to the other organs.
The team of radiologists were lovely, and I got to know a few of them quite well, even though the actual treatment was only a few minutes, as people know I can pack quite a lot of conversation into a short time frame!
We often discussed which restaurants I'd eaten in, where I'd visited, sights, attractions, sporting activities and of course I gave them West End Show reviews! One of the ladies said "Jill, we are going to miss your..........(struggling to find the right word) energy!"
In a strange way I miss them too, it's a bit like my chemo team over here, you build up relationships with people who look after you, especially when they are giving you life saving treatment.
I also met different folks in the waiting room, passing the time of day as you do, it pained me to see what I considered to be such a young girl also receiving treatment, equally elderly couples who have to be up incredibly early to travel hours to reach hospital whilst feeling very unwell.
The staff were hugely compassionate and caring with each and everyone of us, and it made the whole process so much easier to bear.
While I am thanking people, I need to say a HUGE thank you to all those friends and family who visited me, stayed with me, sent me parcels, letters and helped me throughout.
As regards follow up, I was told that I should get an appointment in Jersey in a few weeks, and in January have a CT scan ( again in Jersey) to see how the land lies, well, actually they didn't say that but I assume it's to see if the treatment has been reasonably successful and the tumour has at least shrunk, and at best been OBLITERATED ! I think that would be too much to ask, but I'm up for belated Christmas presents !
So having dined out on having baby brain for the best part of 30 years, followed by Chemo brain, I feel it's my duty to inform you I'm now suffering with "radiobrain", this is a little known condition which can strike anyone, young and old, at anytime.
The symptoms are varied and random, including forgetfulness, stupidity, verbal diarrhea, and in some extreme cases poor quality sporting skills, but take heart, these will pass in time, although one can never fully recover and mistakenly people use the standard "It's my age" as an excuse. Do not be fooled.
I am hoping that a clever son/daughter can sort me out with photo updates, plus a bit of a blog revamp, its all looking a bit tired, (bit like me) especially when I read other folks blogs, they really are all singing and dancing, as well as informative, funny and well written. I guess though the real reason I started this was because it was a way to get information out to friends and family, as well as being a way that helped me deal with the whole Cancer saga.
As some of you know, my dear friend Rena is having her chopped off in order for it to be made into a wig for a child suffering with Cancer, plus my netball club is putting on a BINGO night. The money raised is going to a charity of my choosing Ovacome ( helping women with ovarian cancer). See the link http://www.ovacome.org.uk/ .
The Bingo is on the 3rd December at St Clements Parish Hall, Doors open at 7pm, Bingo starts at 7:30pm. £10 entrance, cash prizes. Coffee/tea cakes on sale. Excellent raffle prizes. Please put the date in your diary, I'd love to see you!! (Obviously this only applies to Channel Islanders- not those lovely friends/family living abroad!)
Ok, thats it for now, off dog walking/cooking/cleaning....Oh, and afternoon tea with the girls!!
Bonsoir,
noswaith dda
I finished the last fraction (dose) of radiotherapy last Friday 4th November, actually completed my entire treatment as was written in my notes. Amazing as we all know how I 'failed' on the Chemotherapy front....
Dr AT was so lovely, and she seemed very pleased as to how well I tolerated it, but I think so much thought had gone into the planning side. The tumour(s) were enveloped by the pancreas and with the bowel, kidney, and stomach in close proximity it was fine tuning to try and direct the rays(?) into the centre and limit the damage to the other organs.
The team of radiologists were lovely, and I got to know a few of them quite well, even though the actual treatment was only a few minutes, as people know I can pack quite a lot of conversation into a short time frame!
We often discussed which restaurants I'd eaten in, where I'd visited, sights, attractions, sporting activities and of course I gave them West End Show reviews! One of the ladies said "Jill, we are going to miss your..........(struggling to find the right word) energy!"
In a strange way I miss them too, it's a bit like my chemo team over here, you build up relationships with people who look after you, especially when they are giving you life saving treatment.
I also met different folks in the waiting room, passing the time of day as you do, it pained me to see what I considered to be such a young girl also receiving treatment, equally elderly couples who have to be up incredibly early to travel hours to reach hospital whilst feeling very unwell.
The staff were hugely compassionate and caring with each and everyone of us, and it made the whole process so much easier to bear.
While I am thanking people, I need to say a HUGE thank you to all those friends and family who visited me, stayed with me, sent me parcels, letters and helped me throughout.
As regards follow up, I was told that I should get an appointment in Jersey in a few weeks, and in January have a CT scan ( again in Jersey) to see how the land lies, well, actually they didn't say that but I assume it's to see if the treatment has been reasonably successful and the tumour has at least shrunk, and at best been OBLITERATED ! I think that would be too much to ask, but I'm up for belated Christmas presents !
So having dined out on having baby brain for the best part of 30 years, followed by Chemo brain, I feel it's my duty to inform you I'm now suffering with "radiobrain", this is a little known condition which can strike anyone, young and old, at anytime.
The symptoms are varied and random, including forgetfulness, stupidity, verbal diarrhea, and in some extreme cases poor quality sporting skills, but take heart, these will pass in time, although one can never fully recover and mistakenly people use the standard "It's my age" as an excuse. Do not be fooled.
I am hoping that a clever son/daughter can sort me out with photo updates, plus a bit of a blog revamp, its all looking a bit tired, (bit like me) especially when I read other folks blogs, they really are all singing and dancing, as well as informative, funny and well written. I guess though the real reason I started this was because it was a way to get information out to friends and family, as well as being a way that helped me deal with the whole Cancer saga.
As some of you know, my dear friend Rena is having her chopped off in order for it to be made into a wig for a child suffering with Cancer, plus my netball club is putting on a BINGO night. The money raised is going to a charity of my choosing Ovacome ( helping women with ovarian cancer). See the link http://www.ovacome.org.uk/ .
The Bingo is on the 3rd December at St Clements Parish Hall, Doors open at 7pm, Bingo starts at 7:30pm. £10 entrance, cash prizes. Coffee/tea cakes on sale. Excellent raffle prizes. Please put the date in your diary, I'd love to see you!! (Obviously this only applies to Channel Islanders- not those lovely friends/family living abroad!)
Ok, thats it for now, off dog walking/cooking/cleaning....Oh, and afternoon tea with the girls!!
Bonsoir,
noswaith dda
And who knows how those in East Anglia say Good Evening?
The intonation of words in Suffolk is very peculiar. Words have a notable range of rise and fall in pitch and can often sound as if the speaker were asking a question. This is one of the main features that distinguish Suffolk speech from Norfolk, which is characterised by a distinctive 'drawl'.
Wednesday 2 November 2016
Last week I had SW looking after me, although I did have to remind her more than once that I was the "ill" one, not that she bossed me around at all. In fact her cooking and washing up were awesome, not so hot on directions with tubes, trains and streets but between us we muddled through. I believe she is still recovering from her weeks ' holiday' in London!
Visited The Royal Chelsea Hospital and bought our poppies, shopped loads and managed to see two shows , in fact we had a backstage tour of Phantom of the Opera- i didn't realise that the scenery and props were the original ones used for the last thirty years , very heavy solid pieces.
The clinic check up on Wednesday went very well, Dr AT was very pleased with me, and other than feeling a bit sick from time to time, and a little tired, all is going ok.
A busy weekend as always in Jersey, but got to play tennis twice and go to my aerobics class- as well as attempting to teach Beanie how to pass her Gun Dog training next weekend, ( don't hold your breath) .
Fitted in a lovely dog walk on Monday morning- the weather was fabulous - before reluctantly getting on a flight to the UK, fortunately my last week of treatment.
I was also lucky to be able to spend an hour with two of my great nieces, before my sister took them back home.
Sally then came back to the city to spend the next three days with me, this has been brilliant. We've done a fair amount of laughing, usually at each other. And got to see The curious incident of the dog in the night time play last night, it was excellent and I can highly recommend it.
She has had to visit Hyde Park every day and get her "open space green fix" as the city streets are too smelly/dirty/hot/full of people, ( she has a point!)
We met up with our older brother briefly at lunchtime today, and the two of them went off to see Hurley/ Shackleton photo exhibition at the Royal Geographical Society- very good apparently .
Quote of the week....
My sister and I making small talk whilst on the tube coming back from the west end at 10pm, train full of multicoloured race people. She said quite loudly.....
"That's another reason I don't like London..........
too much black".... She must have seen my shocked look as she hurriedly went onto explain that the clothing people wore was so drab and dark, but the damage was done. I hustled her off the next stop before we got lynched!
So,once again all fine at the clinic, my follow up appointment in a couple of weeks and CT scan in three months can all be done in Jersey, which is excellent news.
I have to keep taking one set of tablets as the radiotherapy will carry on working for 2-3 months post treatment . I think I'll probably feel quite a bit worse in the forthcoming weeks ahead, but I'll be glad to be home.
Thank you everyone for the on-going support, love, prayers and best wishes I've had and continue to receive .
- Posted using BlogPress from my iPad
Visited The Royal Chelsea Hospital and bought our poppies, shopped loads and managed to see two shows , in fact we had a backstage tour of Phantom of the Opera- i didn't realise that the scenery and props were the original ones used for the last thirty years , very heavy solid pieces.
The clinic check up on Wednesday went very well, Dr AT was very pleased with me, and other than feeling a bit sick from time to time, and a little tired, all is going ok.
A busy weekend as always in Jersey, but got to play tennis twice and go to my aerobics class- as well as attempting to teach Beanie how to pass her Gun Dog training next weekend, ( don't hold your breath) .
Fitted in a lovely dog walk on Monday morning- the weather was fabulous - before reluctantly getting on a flight to the UK, fortunately my last week of treatment.
I was also lucky to be able to spend an hour with two of my great nieces, before my sister took them back home.
Sally then came back to the city to spend the next three days with me, this has been brilliant. We've done a fair amount of laughing, usually at each other. And got to see The curious incident of the dog in the night time play last night, it was excellent and I can highly recommend it.
She has had to visit Hyde Park every day and get her "open space green fix" as the city streets are too smelly/dirty/hot/full of people, ( she has a point!)
We met up with our older brother briefly at lunchtime today, and the two of them went off to see Hurley/ Shackleton photo exhibition at the Royal Geographical Society- very good apparently .
Quote of the week....
My sister and I making small talk whilst on the tube coming back from the west end at 10pm, train full of multicoloured race people. She said quite loudly.....
"That's another reason I don't like London..........
too much black".... She must have seen my shocked look as she hurriedly went onto explain that the clothing people wore was so drab and dark, but the damage was done. I hustled her off the next stop before we got lynched!
So,once again all fine at the clinic, my follow up appointment in a couple of weeks and CT scan in three months can all be done in Jersey, which is excellent news.
I have to keep taking one set of tablets as the radiotherapy will carry on working for 2-3 months post treatment . I think I'll probably feel quite a bit worse in the forthcoming weeks ahead, but I'll be glad to be home.
Thank you everyone for the on-going support, love, prayers and best wishes I've had and continue to receive .
- Posted using BlogPress from my iPad
Location:2/11/16
Tuesday 25 October 2016
Moving on....
So, a bit more about what is actually going on in London.
Every day I head towards the hospital for radiotherapy, it's only 5-10minutes away so no problem. The times vary each day, I prefer the morning as there's less chance of delays, it also gives me the day to spend as I wish ( not shopping obviously....) .
I had a fabulous time with AB, and as a bonus she left me loads of homemade flapjacks I'm munching my way through. We had a super visit to Kew Gardens, so much to see and learn about.
Wednesday was my 31st wedding anniversary , AB left and husband arrived , just in time for the clinic appointment with my lovely consultant DR Taylor. She seems very pleased with progress so far and my bloods are all good ( amazingly considering my history ) , so that's all positive.
Hubby and I had an excellent day on Thursday , after treatment we went off to visit the Shard, Borough Market, walk along the Thames, The National Portrait gallery ( Picasso exhibition worth seeing) all in that order.
Picked up cheap tickets for The Kinks ( very good show, great music) and had an early supper. Phew.
Friday was just as hectic but for different reasons ...
A trip on a bus, a bit of shopping and then we made our way to the airport. Arriving at Victoria I went through the barrier toward the Gatwick express, hubby's ticket would not work, upon checking with the very busy , hassled assistant he found that he had inadvertently bought a southern trains ticket instead.. I'm on one side of the barrier looking at the express with 3 minutes before departure and he's grumpily looking at me from the other side , I shouted to get the Southern instead and I'd see him at security .
Turning on his heel he stomped off, I rushed into a very busy train full of shrieking teenagers going on holiday to Magaluf - oh Joy.
Texts sent backwards and forwards, he finally found platform 19, and a southern train , jumped aboard and set off, becoming slightly concerned when no mention of Gatwick appeared on any announcement or screen !
Fortunately it was the correct train that stopped at Gatwick, and unbeknown to him I waited for him, only to find out he'd come in and was already on the shuttle!!
We did eventually meet up again at the security gate, where we both saw the funny side, but we weren't laughing when the flight already delayed, meant us swopping planes to then sit on the plane on the runway for two hours waiting for ground staff to load the bags and 'push us off'.
Instead of arriving in Jersey at 6:20pm, we finally landed at 9:20pm, really not funny when after a week in London I just wanted to get HOME!!
All this said, I discovered there were two girls aboard that were surprising their mum for her 60th birthday party, guess they were upset it was so late.
On a different note two weeks ago Jack, Steph and I went to Guys hospital to further my request for genetic testing. Lots of family questions, bloods taken, and more talking. I should have the results by the middle of December .
I think ( it was very complicated !!) that they are testing for BRCA 1 BRCA2 MMR and another gene that can be linked to bowel cancer.
Hopefully I don't have any of them, but if I do, it's useful to have that information for my siblings as well as my children.
A BRCA mutation is a mutation in either of the BRCA1 and BRCA2 genes, which are tumor suppressor genes. Hundreds of different types of mutations in these genes have been identified, some of which have been determined to be harmful, while others have no proven impact. Harmful mutations in these genes may produce a hereditary breast-ovarian cancer syndrome in affected persons. Only 5-10% of breast cancer cases in women are attributed to BRCA1 and BRCA2 mutations (with BRCA1 mutations being slightly more common than BRCA2 mutations), but the impact on women with the gene mutation is more profound.[1] Women with harmful mutations in either BRCA1 or BRCA2 have a risk of breast cancer that is about five times the normal risk, and a risk of ovarian cancer that is about ten to thirty times normal.[2] The risk of breast and ovarian cancer is higher for women with a high-risk BRCA1 mutation than with a BRCA2 mutation. Having a high-risk mutation does not guarantee that the woman will develop any type of cancer, or imply that any cancer that appears was actually caused by the mutation, rather than some other factor.
High-risk mutations, which disable an important error-free DNA repair process (homology directed repair), significantly increase the person's risk of developing breast cancer, ovarian cancer and certain other cancers. Why BRCA1 and BRCA2 mutations lead preferentially to cancers of the breast and ovary is not known, but lack of BRCA1 function seems to lead to non-functional X-chromosome inactivation. Not all mutations are high-risk; some appear to be harmless variations. The cancer risk associated with any given mutation varies significantly and depends on the exact type and location of the mutation and possibly other individual factors.
Mutations can be inherited from either parent and may be passed on to both sons and daughters. Each child of a genetic carrier, regardless of sex, has a 50% chance of inheriting the mutated gene from the parent who carries the mutation. As a result, half of the people with BRCA gene mutations are male, who would then pass the mutation on to 50% of their offspring, male or female. The risk of BRCA-related breast cancers for men with the mutation is higher than for other men, but still low.[3] However, BRCA mutations can increase the risk of other cancers, such as colon cancer, pancreatic cancer, and prostate cancer.
In humans, seven DNA mismatch repair (MMR) proteins (MLH1, MLH3, MSH2, MSH3, MSH6, PMS1 and PMS2) work coordinately in sequential steps to initiate repair of DNA mismatches.[22] In addition, there are Exo1-dependent and Exo1-independent MMR subpathways.
Deficient expression of multiple DNA repair genes is often found in cancers,[8] and may contribute to the thousands of mutations usually found in cancers (see Mutation frequencies in cancers).
If you're still out there reading this, well done, as it's very confusing , and these are only bits I've found on the Internet , but I'm not worrying about it too much, it is what it is.
This week I've got SW with me, so far she's proved very useful, washing up dishes, tidying up , and making sure I'm on time for my appointments ( a rarity ) . She said I'm the only person to go into radiotherapy running, and then shrieking with laughter when I'm there as I find out some of my radiology team were on the TV, and some were hiding from the cameras, and the fact they were ' treating ' a piece of metal on the bed, not a real person !!! Ha, all for the cameras!!!
Last night big bro took us out for supper ( very nice too ) and today we have visited The Chelsea Pensioners Hospital , such a lovely place, and chatted to some of them. ( bought Christmas presents from the shop ) . Met up with JR and MR, as they are over seeng family and enjoying a few days break. Also managed to squeeze into the Natural History museum ( half term, full of small children !) and look at the dinosaur exhibition ... Shame I can't post photos !!
Finally eight more sessions to go... Yippee
- Posted using BlogPress from my iPad
Every day I head towards the hospital for radiotherapy, it's only 5-10minutes away so no problem. The times vary each day, I prefer the morning as there's less chance of delays, it also gives me the day to spend as I wish ( not shopping obviously....) .
I had a fabulous time with AB, and as a bonus she left me loads of homemade flapjacks I'm munching my way through. We had a super visit to Kew Gardens, so much to see and learn about.
Wednesday was my 31st wedding anniversary , AB left and husband arrived , just in time for the clinic appointment with my lovely consultant DR Taylor. She seems very pleased with progress so far and my bloods are all good ( amazingly considering my history ) , so that's all positive.
Hubby and I had an excellent day on Thursday , after treatment we went off to visit the Shard, Borough Market, walk along the Thames, The National Portrait gallery ( Picasso exhibition worth seeing) all in that order.
Picked up cheap tickets for The Kinks ( very good show, great music) and had an early supper. Phew.
Friday was just as hectic but for different reasons ...
A trip on a bus, a bit of shopping and then we made our way to the airport. Arriving at Victoria I went through the barrier toward the Gatwick express, hubby's ticket would not work, upon checking with the very busy , hassled assistant he found that he had inadvertently bought a southern trains ticket instead.. I'm on one side of the barrier looking at the express with 3 minutes before departure and he's grumpily looking at me from the other side , I shouted to get the Southern instead and I'd see him at security .
Turning on his heel he stomped off, I rushed into a very busy train full of shrieking teenagers going on holiday to Magaluf - oh Joy.
Texts sent backwards and forwards, he finally found platform 19, and a southern train , jumped aboard and set off, becoming slightly concerned when no mention of Gatwick appeared on any announcement or screen !
Fortunately it was the correct train that stopped at Gatwick, and unbeknown to him I waited for him, only to find out he'd come in and was already on the shuttle!!
We did eventually meet up again at the security gate, where we both saw the funny side, but we weren't laughing when the flight already delayed, meant us swopping planes to then sit on the plane on the runway for two hours waiting for ground staff to load the bags and 'push us off'.
Instead of arriving in Jersey at 6:20pm, we finally landed at 9:20pm, really not funny when after a week in London I just wanted to get HOME!!
All this said, I discovered there were two girls aboard that were surprising their mum for her 60th birthday party, guess they were upset it was so late.
On a different note two weeks ago Jack, Steph and I went to Guys hospital to further my request for genetic testing. Lots of family questions, bloods taken, and more talking. I should have the results by the middle of December .
I think ( it was very complicated !!) that they are testing for BRCA 1 BRCA2 MMR and another gene that can be linked to bowel cancer.
Hopefully I don't have any of them, but if I do, it's useful to have that information for my siblings as well as my children.
A BRCA mutation is a mutation in either of the BRCA1 and BRCA2 genes, which are tumor suppressor genes. Hundreds of different types of mutations in these genes have been identified, some of which have been determined to be harmful, while others have no proven impact. Harmful mutations in these genes may produce a hereditary breast-ovarian cancer syndrome in affected persons. Only 5-10% of breast cancer cases in women are attributed to BRCA1 and BRCA2 mutations (with BRCA1 mutations being slightly more common than BRCA2 mutations), but the impact on women with the gene mutation is more profound.[1] Women with harmful mutations in either BRCA1 or BRCA2 have a risk of breast cancer that is about five times the normal risk, and a risk of ovarian cancer that is about ten to thirty times normal.[2] The risk of breast and ovarian cancer is higher for women with a high-risk BRCA1 mutation than with a BRCA2 mutation. Having a high-risk mutation does not guarantee that the woman will develop any type of cancer, or imply that any cancer that appears was actually caused by the mutation, rather than some other factor.
High-risk mutations, which disable an important error-free DNA repair process (homology directed repair), significantly increase the person's risk of developing breast cancer, ovarian cancer and certain other cancers. Why BRCA1 and BRCA2 mutations lead preferentially to cancers of the breast and ovary is not known, but lack of BRCA1 function seems to lead to non-functional X-chromosome inactivation. Not all mutations are high-risk; some appear to be harmless variations. The cancer risk associated with any given mutation varies significantly and depends on the exact type and location of the mutation and possibly other individual factors.
Mutations can be inherited from either parent and may be passed on to both sons and daughters. Each child of a genetic carrier, regardless of sex, has a 50% chance of inheriting the mutated gene from the parent who carries the mutation. As a result, half of the people with BRCA gene mutations are male, who would then pass the mutation on to 50% of their offspring, male or female. The risk of BRCA-related breast cancers for men with the mutation is higher than for other men, but still low.[3] However, BRCA mutations can increase the risk of other cancers, such as colon cancer, pancreatic cancer, and prostate cancer.
In humans, seven DNA mismatch repair (MMR) proteins (MLH1, MLH3, MSH2, MSH3, MSH6, PMS1 and PMS2) work coordinately in sequential steps to initiate repair of DNA mismatches.[22] In addition, there are Exo1-dependent and Exo1-independent MMR subpathways.
Deficient expression of multiple DNA repair genes is often found in cancers,[8] and may contribute to the thousands of mutations usually found in cancers (see Mutation frequencies in cancers).
If you're still out there reading this, well done, as it's very confusing , and these are only bits I've found on the Internet , but I'm not worrying about it too much, it is what it is.
This week I've got SW with me, so far she's proved very useful, washing up dishes, tidying up , and making sure I'm on time for my appointments ( a rarity ) . She said I'm the only person to go into radiotherapy running, and then shrieking with laughter when I'm there as I find out some of my radiology team were on the TV, and some were hiding from the cameras, and the fact they were ' treating ' a piece of metal on the bed, not a real person !!! Ha, all for the cameras!!!
Last night big bro took us out for supper ( very nice too ) and today we have visited The Chelsea Pensioners Hospital , such a lovely place, and chatted to some of them. ( bought Christmas presents from the shop ) . Met up with JR and MR, as they are over seeng family and enjoying a few days break. Also managed to squeeze into the Natural History museum ( half term, full of small children !) and look at the dinosaur exhibition ... Shame I can't post photos !!
Finally eight more sessions to go... Yippee
- Posted using BlogPress from my iPad
Tuesday 18 October 2016
London Life.
Noise.
Piles of rubbish in the street.
Beautiful buildings.
Ugly buildings.
Homeless.
Snippets of peoples conversation.
Green spaces.
Sad dogs.
Not acknowledging drivers stopping for you on Zebra crossings.. ( I did at the beginning).
Never dark.
Dirty pavements.
Warm, rank air in tube stations.
Grey squirrels.
Brilliant theatre shows.
Cheerful nurses.
Expensive shops.
Traffic.
Oh, and small children whizzing to school on scooters!!
Once again I had a fabulous jam packed weekend. I got let off dog walking duty on Saturday morning so I could play racquetball - and I had SUCH a good session ( thanks ST) . Just what I needed!
Followed that with a trip around Waitrose, but not entirely successful as I can't keep tabs on what's been eaten and what we need, anyway enough food etc bought for the weekend.
Dragged Steve to Acorn Nursery to buy some bedding plants, I can't keep walking up the driveway and seeing the sad, shrivelled leaves left in the summer flowering pots.
After lunch I made him help me clear out the old containers and pot up the new plants ( like he didn't have 100 other things he'd rather be doing! )
I did have tennis planned for the afternoon, but it started to rain really heavily, so we had to cancel. Not wanting to be idle I peeled some apples and made two Eve's puddings, a batch of flapjacks and a a batch of brownies.
We then took the girls ( dogs obviously , we are not running a Boot camp) on a 'training ' session/walk down through the woods.
Papa was home when we got back as we had invited him to help us eat the sole and plaice that Jack and his friend had caught the day before, they were delicious !
Sunday morning was cliff path walk, aerobics with the girls ( love those nutty twins) and then three sets of tennis..... All brilliant fun, and when I got back in the door at 1:45pm Bex had done the ironing! Bonus !
Gun dog training at 3:30pm for an hour, and so when finally back home by 4:45pm I was feeling a little tired, still managed to get a roast chicken in the oven and supper for 7 people. Thank goodness I have daughters and 'daughters-in-law to help, and of course all those MEN in my life!
Finally , good news, no, not the fact that I have my crazy aunt over here ( more of that later) - but I have been told that I do not have to do the last three days of radiotherapy . They have adjusted my dose and are giving me the final concentrated session on the 4th November - yippee .
Only 8% of battery left, so the latest embarrassing antics of the Aunt will have to wait.... One snippet though...
Sat on the tube returning from Kew Gardens, I give her the newspaper crossword to finish so she doesn't keep fretting about the stations and if we are going the right way. (I have had many experiences on how to keep a small child quiet- although not usually with the cryptic crossword in the telegraph ) . Anyway the train stops, she looks up , I ask "What". She replies "I was just seeing if an elderly person needed a seat". We both looked around the carriage, I replied sagely " You , ( pause ) ARE the elderly person" ......
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Location:Two days with Mad Aunt....
Wednesday 12 October 2016
Happy Tuesday....
I thought I would just have to write a post this morning ( Wednesday 12th) as so much happened yesterday and I need to tell someone what a good day I had!!
Not wanting to waste the morning, I headed off to the gym. I managed to get onto a yoga class but as that didn't start until 10:30am I had plenty of time for a long swim.
The yoga class was interesting to say the least, only being a ' beginner' with little room for any improvement I was a tad apprehensive . A mixture of abilities and people in the class, but the instructor was lovely. I did feel the man with only one leg was amazing and STILL better than me !
Met Jack and Steph from the tube station and then raced to hospital for my radiotherapy , they have two machines, one broke last week and is only half mended (!) I don't like to dwell on that too much .. So my appointment tomorrow has been put back to 6:40pm. It's a good job I chose to live close by the hospital I would hate having to travel in every day, especially at early evening time in rush hour.
I also needed blood tests to see how my body is responding to the treatment. Luckily there wasn't too long a wait, and I get results today at the clinic this afternoon.
It was a little disconcerting to be sat in the same room as an 'inmate' and her two guards from the local prison - especially as she was attached by a very long, noisy dangling set of handcuffs.
We all decided that a nice walk across Hyde park and then maybe some shopping in Oxford street was the order of the day. Fortunately for us the sun was shining and it was beautiful. Oxford street was as usual very busy, but Jack did mange to buy some new trainers he needed and as the ones he was wearing were a bit small he changed into them straight away.
Let's not mention that I also bought a new pair of boots ( a girl can never have too many boots- more of that later!!)
Walking and talking it was decided we would see if there were any cheap (er) tickets for a show that we could see that evening, so we made our way towards Leicester square .
Walking down Regent road, you couldn't help but see the barefoot, homeless man crouched over, in a shop doorway, hugging his knees. Jack turned to us and said, I could give him my shoes ( his too small trainers he'd only worn a few times) that he was still carrying.
The mans feet were blistered and sore, and he had no other possessions around him, it was him looking up at Jack and saying "Thank you, thank you so much" that will stay with me for ever.
We got three tickets in the dress circle for Kinky Boots, and as we had time went to eat at a Mexican restaurant .
The meal was lovely, and the musical was very, very good, funny too, I highly recommend it if you get the chance.
Walking along to the embankment tube, we were passed by two police vans and a car, although it wasn't immediately obvious to where they were all racing too, we saw as we entered the station them standing around looking up.
As we also looked up we saw there was a man standing on the edge of the building , looking like he might have wanted to jump onto the train track. Very sad that some people feel so desperate to end their lives.
Must say it was a lovely surprise to be greeted by a huge box full of a lovely bouquet of flowers that was delivered to the flat just now! Thank you Grainville Tennis club!!!! Beautiful 😄 X
All in all a very busy, but really good day in London, and after today's treatment I should be one third of my way through radiotherapy ( according to Mr Statistic Steve Luce) :-)
- Posted using BlogPress from my iPad
Not wanting to waste the morning, I headed off to the gym. I managed to get onto a yoga class but as that didn't start until 10:30am I had plenty of time for a long swim.
The yoga class was interesting to say the least, only being a ' beginner' with little room for any improvement I was a tad apprehensive . A mixture of abilities and people in the class, but the instructor was lovely. I did feel the man with only one leg was amazing and STILL better than me !
Met Jack and Steph from the tube station and then raced to hospital for my radiotherapy , they have two machines, one broke last week and is only half mended (!) I don't like to dwell on that too much .. So my appointment tomorrow has been put back to 6:40pm. It's a good job I chose to live close by the hospital I would hate having to travel in every day, especially at early evening time in rush hour.
I also needed blood tests to see how my body is responding to the treatment. Luckily there wasn't too long a wait, and I get results today at the clinic this afternoon.
It was a little disconcerting to be sat in the same room as an 'inmate' and her two guards from the local prison - especially as she was attached by a very long, noisy dangling set of handcuffs.
We all decided that a nice walk across Hyde park and then maybe some shopping in Oxford street was the order of the day. Fortunately for us the sun was shining and it was beautiful. Oxford street was as usual very busy, but Jack did mange to buy some new trainers he needed and as the ones he was wearing were a bit small he changed into them straight away.
Let's not mention that I also bought a new pair of boots ( a girl can never have too many boots- more of that later!!)
Walking and talking it was decided we would see if there were any cheap (er) tickets for a show that we could see that evening, so we made our way towards Leicester square .
Walking down Regent road, you couldn't help but see the barefoot, homeless man crouched over, in a shop doorway, hugging his knees. Jack turned to us and said, I could give him my shoes ( his too small trainers he'd only worn a few times) that he was still carrying.
The mans feet were blistered and sore, and he had no other possessions around him, it was him looking up at Jack and saying "Thank you, thank you so much" that will stay with me for ever.
We got three tickets in the dress circle for Kinky Boots, and as we had time went to eat at a Mexican restaurant .
The meal was lovely, and the musical was very, very good, funny too, I highly recommend it if you get the chance.
Walking along to the embankment tube, we were passed by two police vans and a car, although it wasn't immediately obvious to where they were all racing too, we saw as we entered the station them standing around looking up.
As we also looked up we saw there was a man standing on the edge of the building , looking like he might have wanted to jump onto the train track. Very sad that some people feel so desperate to end their lives.
Must say it was a lovely surprise to be greeted by a huge box full of a lovely bouquet of flowers that was delivered to the flat just now! Thank you Grainville Tennis club!!!! Beautiful 😄 X
All in all a very busy, but really good day in London, and after today's treatment I should be one third of my way through radiotherapy ( according to Mr Statistic Steve Luce) :-)
- Posted using BlogPress from my iPad
Friday 7 October 2016
Friday night ....
Sat at Gatwick airport in the departure lounge at the gate, and have just heard over the tannoy that the flight is delayed ..... You just don't want to hear that! Guess it could be worse, the flight could have been cancelled , and judging by the amount of people crammed in here, that would have been disastrous .
My fantastic blog post that I wrote in the week, got 'lost', and that too was annoying, especially after the title managed to get posted. So as I now have at least another 40 minutes wait, I thought I'd use this time to do a catch up, even if I can't post until I'm back on the rock.
I'm pleased that this first week has gone ok, I've managed to remember to take my anti - sickness on four out of the five days pre treatment , and now taking another tablet to form a lining in my stomach. As I have been feeling a little queasy at various points throughout the day, this is not a bad idea.
I did say to the radiologist on Wednesday that I felt a little tired, to which he nodded sagely and said " I'm afraid that's part of the side effects of the treatment" I didn't like to say I think that actually it's the thirty lengths swim and Pilates class I did this morning!
I turned up at the sports centre yesterday just before 9:30am with the sole idea to maybe have a gentle swim and then go and find the instructor at the gym so he can show me how some of the equipment works. But, the receptionist at the centre who is a lovely lady but of Chinese ethnicity and therefore sometimes a little difficult to understand gabbled at me and before I knew where I was I had signed up for a 'step' class.
I haven't done Step since the 1980's when sweatbands and leg warmers were compulsory . This however, turned out to be a class like no other.
A very toned fit instructor barked out orders over the microphone, doing set pieces, turning around , up, down, and then we had to lie down on the said Step and lift weights above our heads. Tummy tucks, leg raises, then up again , more routines. Suddenly the smoke alarm goes off, a false alarm but it gave us ( me?) a five minute reprieve.
This morning I can certainly feel the effects of the class, and whilst waiting to meet my big bro for a cup of tea ( just before his conference ) I was surreptitiously doing a few calf stretches in the station !
It helped that I had my friend Agi with me on the flight back ( she had decided to come home this weekend as her radiotherapy machine had broken so she couldn't have her treatment, annoying as that day gets tagged onto the end of her six week stint. )
It was so lovely to be greeted by husband and daughter, with the added bonus of supper cooked by them. It's nice to be home ......
- Posted using BlogPress from my iPad
My fantastic blog post that I wrote in the week, got 'lost', and that too was annoying, especially after the title managed to get posted. So as I now have at least another 40 minutes wait, I thought I'd use this time to do a catch up, even if I can't post until I'm back on the rock.
I'm pleased that this first week has gone ok, I've managed to remember to take my anti - sickness on four out of the five days pre treatment , and now taking another tablet to form a lining in my stomach. As I have been feeling a little queasy at various points throughout the day, this is not a bad idea.
I did say to the radiologist on Wednesday that I felt a little tired, to which he nodded sagely and said " I'm afraid that's part of the side effects of the treatment" I didn't like to say I think that actually it's the thirty lengths swim and Pilates class I did this morning!
I turned up at the sports centre yesterday just before 9:30am with the sole idea to maybe have a gentle swim and then go and find the instructor at the gym so he can show me how some of the equipment works. But, the receptionist at the centre who is a lovely lady but of Chinese ethnicity and therefore sometimes a little difficult to understand gabbled at me and before I knew where I was I had signed up for a 'step' class.
I haven't done Step since the 1980's when sweatbands and leg warmers were compulsory . This however, turned out to be a class like no other.
A very toned fit instructor barked out orders over the microphone, doing set pieces, turning around , up, down, and then we had to lie down on the said Step and lift weights above our heads. Tummy tucks, leg raises, then up again , more routines. Suddenly the smoke alarm goes off, a false alarm but it gave us ( me?) a five minute reprieve.
This morning I can certainly feel the effects of the class, and whilst waiting to meet my big bro for a cup of tea ( just before his conference ) I was surreptitiously doing a few calf stretches in the station !
It helped that I had my friend Agi with me on the flight back ( she had decided to come home this weekend as her radiotherapy machine had broken so she couldn't have her treatment, annoying as that day gets tagged onto the end of her six week stint. )
It was so lovely to be greeted by husband and daughter, with the added bonus of supper cooked by them. It's nice to be home ......
- Posted using BlogPress from my iPad
Wednesday 5 October 2016
Sunday 2 October 2016
Sunday night catch up....
Just checking in with a quick post before i actually get a chance to SIT down this weekend ( wouldn't have it any other way)
Disappointed I am still having issues with the photo upload, but there you go, something to work on.
Very successful two days in London last week and all went relatively smoothly, flight a bit delayed on the way back thats all.
It was great having Bex to sort out my WIFI in the flat and get my UK phone connected, plus food shopping etc.
Off again tomorrow morning at 10am, so enough time to walk the girls and possibly get another cheeky sea swim in.. thought id possibly had my last one today, but forecast looks good, so fingers crossed.
In response to the comment on the last post, Guernsey tennis was great fun, but ultimately we got hammered , particularly the men, they were very strong. I was pleased to win one of my ladies games, could have had the second, except my partner had a neck injury and struggled.
Ive had a marvellous weekend, yesterday morning walked the girls, took a small child ( and Dan, a somewhat larger child) to the Merton, swimming and eating the morning away. Dropped her back to St Ouen and then onto AH's house where we had two very close sets of tennis with very good friends.
Back home to a meeting with Jersey Cancer Relief ( a fantastic local charity that help out many, many people in the island).
Time to sort out yet more washing before going to pick up fish and chips and take to our lovely friends in Grouville. Considering she has spent the last two weeks in Southampton, she is looking very bright eyed, so that is good to see.
Today hubby came with me for first walk, and i had a lovely swim ( sea warmer than on land) and then whizzed off to aerobics with the 'girls', have missed their crazy ways, not to mention the exercise.
Followed that up by three sets of very good tennis at A deF's house, just time for a snack and then gun dog training... yes, you did read that correctly.
Beanie, not Jessie... if the main objective is to run off for 25 minutes to an hour chasing pheasants, not paying the slightest bit of attention to anything going on around you, then Beanie will be an A student!
A real treat this evening, supper cooked by Tom, (and washed up), think that i shall be surplus to requirements by the end of my stint in London (yay) ;-)
Bex has had yet another try at the photos..
My lovely radiologists... day one!!
Disappointed I am still having issues with the photo upload, but there you go, something to work on.
Very successful two days in London last week and all went relatively smoothly, flight a bit delayed on the way back thats all.
It was great having Bex to sort out my WIFI in the flat and get my UK phone connected, plus food shopping etc.
Off again tomorrow morning at 10am, so enough time to walk the girls and possibly get another cheeky sea swim in.. thought id possibly had my last one today, but forecast looks good, so fingers crossed.
In response to the comment on the last post, Guernsey tennis was great fun, but ultimately we got hammered , particularly the men, they were very strong. I was pleased to win one of my ladies games, could have had the second, except my partner had a neck injury and struggled.
Ive had a marvellous weekend, yesterday morning walked the girls, took a small child ( and Dan, a somewhat larger child) to the Merton, swimming and eating the morning away. Dropped her back to St Ouen and then onto AH's house where we had two very close sets of tennis with very good friends.
Back home to a meeting with Jersey Cancer Relief ( a fantastic local charity that help out many, many people in the island).
Time to sort out yet more washing before going to pick up fish and chips and take to our lovely friends in Grouville. Considering she has spent the last two weeks in Southampton, she is looking very bright eyed, so that is good to see.
Today hubby came with me for first walk, and i had a lovely swim ( sea warmer than on land) and then whizzed off to aerobics with the 'girls', have missed their crazy ways, not to mention the exercise.
Followed that up by three sets of very good tennis at A deF's house, just time for a snack and then gun dog training... yes, you did read that correctly.
Beanie, not Jessie... if the main objective is to run off for 25 minutes to an hour chasing pheasants, not paying the slightest bit of attention to anything going on around you, then Beanie will be an A student!
A real treat this evening, supper cooked by Tom, (and washed up), think that i shall be surplus to requirements by the end of my stint in London (yay) ;-)
Bex has had yet another try at the photos..
Saturday 1 October 2016
London .... I'm here!
Thursday the 29th September, the day of reckoning (!) We fairly flew through the departures in Jersey, and left early. This looks promising I thought, but lo, despite the early start we were TOO early to land and circled for about 25 minutes - bah.
Anyway, negotiating the airport, shuttles and trains with two large packed suitcase we arrived at the taxi rank to find , no taxis !
Waited diligently in the line, talked to a lady who said roadworks are stopping them come in...
Waited another 5 minutes and then decided that it would have to be the underground after all...I trundled off ( with a very disgruntled daughter in tow) . However on the way to the underground we discovered another taxi rank......with taxis !! Hurrah, especially as it was raining quite hard by then.
A very warm welcome greeted us at Chelsea Cloisters, Sloane Avenue ( room no 133) , the very nice lady I had spoken to earlier in the month has put me in the back of the building (quiet) in a one bed roomed flat with a curved sitting room, allowing plenty of light in. It's tiny, ( cosy? Bijou?) but it's the place I shall make home for the next 6 weeks.
Fact finding mission to make sure I have a UK SIM card in an old phone, and a 'pocket hotspot(!) ' for wifi in the flat.
Food shopping .
Finally at the hospital at 3pm- have to be early for first appointment, and we all know my trend for arriving early for anything! So was quite smug that I was bang on time, but, forgot my tablets. Bah again!
The best thing was seeing my lovely friend waiting for us to arrive ( she had an operation similar to mine, followed by chemotherapy and now is in her second week of radiotherapy , and was delighted to see familiar faces.
Usual preliminarily chats, and lots of drinking water, plus a trip to pharmacy for another batch of tablets ( anti-sickness) needed before the 'treatment'.
I'm actually loathe to call radiotherapy "treatment", as its that word I associate with having a lovely relaxing spa massage, NOT lying on a very hard bed, absolutely still in an uncomfortable position for ten minutes!!
Did I tell you last time I was in London for two days, two people stopped and asked me for directions, I obviously blend in like a local already.
Thank you for all the lovely messages of support, very humbling ..
So, one down only 29 to go!! Bring it on...
Attempting to post some photos from our French trip.
Monday 19 September 2016
Bonjour!
That title pretty much sums up my total repertoire of the french language - duly confirmed when I asked the shop assistant at Le Clerq if she spoke french !! Whoops
It is so lovely here, France I mean, although Center Parcs is fairly good too.
I can see why it's so popular with young families, mine would have had a brilliant time here on holiday ( if they'd had the chance !)
Anyway, we are out and about in the Loire region seeing the sights and sometimes sampling the local fayre, not just staying in the resort, although so far we've 'enjoyed' swimming, the spa, cycling and crazy golf.... And that's just a small taste of what's on offer.
I thought St Martin was quiet, but it's unbelievably quiet here, and since the thunderstorm last week ( knocked out the TV ... English Channel only affected apparently) it's also very DARK, as some street lights affected too. Made for some especially difficult riding on our late night cycle tour as my bike was the only one without lights that worked, ( since remedied by a bike swop).
Checked in once at home, not asking about the 'girls' as best I don't know , but little do the boys know I have a spy in the camp, so they can't get away with their all night parties.
Only two boys at home as the eldest is touring Canada, appears to be in the Rockies now, and only one encounter with a grizzly so far..
Ok, so less holiday frolics and more information.
I am due to start radiotherapy on the 29th September , yes, I know it's a Thursday but they begin whenever there's a slot. They have tried very hard to accommodate me for late Monday and early Friday sessions so I can come back to Jersey for the weekend.
This does mean that mid week ' appointments ' are a bit all over the place , but you have to go with the flow I guess, and be grateful for small mercies.
I actually finish a week later than I thought 9th November, but better that they try to blast IT out of the water so to speak than pussyfoot around.
Bex is flying over with me next Thursday morning so I can take two large suitcases, and I hope that I can get settled into Chelsea Cloisters ( apartment block 7 minutes away from the Marsden ), not a nunnery like some of you may think.
Huge amount of money, that I would rather have spent on a holiday(!) but it is far better that I stay somewhere close to the hospital and is half decent so I can leave stuff there, and friends/ family can stay over on sofa bed if need be .
I have to think that this is far better in the short term to have six weeks of disruption than have six long months of chemo and all the side effects that brings. It will, however be extremely hard to not be near my home ( dogs) and family, when it's all the normality that I crave in day to day life.
The thought of feeling very poorly, with possibly nausea, tummy problems etc etc is playing on my mind, and difficult to get my head around. Plus the fact that it gets worse after treatment has finished!
I mean heaven help me, my netball, badminton, racquetball and tennis will suffer terribly - never mind anything else!!
Oh, and I've signed up for dog gun training classes on a Sunday afternoon... I'm still working on the recall, so a fair bit of work to do just yet.
So , not Jersey french tonight but ...
Bonne soirée
- Posted using BlogPress from my iPad
It is so lovely here, France I mean, although Center Parcs is fairly good too.
I can see why it's so popular with young families, mine would have had a brilliant time here on holiday ( if they'd had the chance !)
Anyway, we are out and about in the Loire region seeing the sights and sometimes sampling the local fayre, not just staying in the resort, although so far we've 'enjoyed' swimming, the spa, cycling and crazy golf.... And that's just a small taste of what's on offer.
I thought St Martin was quiet, but it's unbelievably quiet here, and since the thunderstorm last week ( knocked out the TV ... English Channel only affected apparently) it's also very DARK, as some street lights affected too. Made for some especially difficult riding on our late night cycle tour as my bike was the only one without lights that worked, ( since remedied by a bike swop).
Checked in once at home, not asking about the 'girls' as best I don't know , but little do the boys know I have a spy in the camp, so they can't get away with their all night parties.
Only two boys at home as the eldest is touring Canada, appears to be in the Rockies now, and only one encounter with a grizzly so far..
Ok, so less holiday frolics and more information.
I am due to start radiotherapy on the 29th September , yes, I know it's a Thursday but they begin whenever there's a slot. They have tried very hard to accommodate me for late Monday and early Friday sessions so I can come back to Jersey for the weekend.
This does mean that mid week ' appointments ' are a bit all over the place , but you have to go with the flow I guess, and be grateful for small mercies.
I actually finish a week later than I thought 9th November, but better that they try to blast IT out of the water so to speak than pussyfoot around.
Bex is flying over with me next Thursday morning so I can take two large suitcases, and I hope that I can get settled into Chelsea Cloisters ( apartment block 7 minutes away from the Marsden ), not a nunnery like some of you may think.
Huge amount of money, that I would rather have spent on a holiday(!) but it is far better that I stay somewhere close to the hospital and is half decent so I can leave stuff there, and friends/ family can stay over on sofa bed if need be .
I have to think that this is far better in the short term to have six weeks of disruption than have six long months of chemo and all the side effects that brings. It will, however be extremely hard to not be near my home ( dogs) and family, when it's all the normality that I crave in day to day life.
The thought of feeling very poorly, with possibly nausea, tummy problems etc etc is playing on my mind, and difficult to get my head around. Plus the fact that it gets worse after treatment has finished!
I mean heaven help me, my netball, badminton, racquetball and tennis will suffer terribly - never mind anything else!!
Oh, and I've signed up for dog gun training classes on a Sunday afternoon... I'm still working on the recall, so a fair bit of work to do just yet.
So , not Jersey french tonight but ...
Bonne soirée
- Posted using BlogPress from my iPad
Wednesday 14 September 2016
Jersey to London (in one easy step)
Tuesday morning arrives and I'm up by 6:15am, showered, had breakfast and overnight bag packed.
Jessie decides that today is a good day to have one of her 'episodes' of trembling and lethargy.
TH arrives just after 8am, loads two dogs and gibbering middle aged woman into his car.
Arrived at the airport in good time for a 9:55am flight.
No problem through security ( except a toiletries check - that's happened twice now - my air of total calm persona doesn't 'wash' with these guys).
Cash machine worked, another plus, and so I settled down to wait for the gate number to be called.
The screen showed there would be a delay of 15 minutes - not too bad. Gate number came up and we dutifully filed through security and waited again. After twenty minutes we were told that the plane that had just arrived had been hit by lightening and consequently would need a engineer to look at it, and that he was on his way (!) and would take about twenty minutes to arrive.
A later announcement claimed it would take about an hour and we were offered a refreshment voucher back in the departures hall. Again we filed out and queued , fortunately I knew someone on flight and we chatted to pass the time.
Just as we arrived at the desk they called us to the gate again- our flight was ready to board.
Onto the plane and waited for take off slot. Pilot was very apologetic and said we would make good time and be around 40 minutes in the air.
Flight wasn't totally smooth , too many thunderstorms brewing, flew over Brighton and the pilots voice ( once again extremely apologetic) came across the tannoy. Unfortunately there was no slot for us to land , and we would have to hold for 25 minutes!
Back on land I joined a very long queue for a train ticket, to hear that sadly there had been a ' body' on the track and this had caused major delays and disruption to the train network.
Squeezed into the aisle of a packed southern train, made for a pretty unpleasant trip into the city- however I overheard a man say that at least our carriage had air conditioning, unlike the previous one, which was 'baking'.
Worked my way to the underground and two easy tube stops saw me arriving at the hospital two hours late for my clinic appointment.
Husband had called ahead to explain and apologise, saying I was on the delayed flight and would be there as soon as I could.
I had lost the chance of having a CT scan, but had a blood test and saw the registrar and later the consultant - found the facilities desk, collected my key for the accommodation , went to pharmacy and picked up my tablets ( wonder if I'll get them through security this time?).
And so ends the first day.
Thankfully the hospital can fit me in a scan today although 3:30pm makes it tight for time to re trace my journey back to Gatwick, particularly as I have just heard the news that due to staff shortages there is an amended service on the Gatwick express.
Still very hot and humid here, fortunately there is a large fan in the room to push the warm air around, and as I have a walk to the tube station I'd rather it be warm than pouring with rain like some parts of the country . ( yes, I could take a taxi, but I'll have been siting or lying down most of the day !)
Off to the hospital shortly for first set of kidney tests at 9 am- I have to say that despite all the set backs yesterday I was reasonably together last night, even managing to take a walk to find the accommodation I hope to be staying in later this month, and to check in with the local sports centre!
The bit I did have a belated wobble over was signing the consent form. I appreciate that the side effects won't be pleasant , and that I may or may not experience all or just some of them, but it was the more permeant damage that I could end up with, most noticeably the bowel.
There will be damage to the kidney too, and the fact that the tumour is high up will affect the stomach, definitely a good chance of nausea, and possibly ulcers. The tablets I have been issued are the same as I had with chemo (psychologically not good) and they come with side effects too!
Of course bladder and liver are in the firing line as well, and the icing on the cake is a minuscule risk of spinel damage....
Leaving the hospital I just felt cross, cross It was happening to me, and angry that it will be months before I feel well again, and then a high possibility that I will be left with permanent damage.
And then when I'd calmed down and eaten and thought a bit more, why shouldn't it be me? What makes me so very special ? I should be grateful that these amazing people can offer me this medicine as without it my life would be considerably shortened - and so it's just another challenge that life throws at you.
This last paragraph feels particularly poignant as I watch the incredible Paralympics and feel nothing but awe at the adversities so many of them have to overcome on a daily basis.
À la préchaine!!
- Posted using BlogPress from my iPad
Jessie decides that today is a good day to have one of her 'episodes' of trembling and lethargy.
TH arrives just after 8am, loads two dogs and gibbering middle aged woman into his car.
Arrived at the airport in good time for a 9:55am flight.
No problem through security ( except a toiletries check - that's happened twice now - my air of total calm persona doesn't 'wash' with these guys).
Cash machine worked, another plus, and so I settled down to wait for the gate number to be called.
The screen showed there would be a delay of 15 minutes - not too bad. Gate number came up and we dutifully filed through security and waited again. After twenty minutes we were told that the plane that had just arrived had been hit by lightening and consequently would need a engineer to look at it, and that he was on his way (!) and would take about twenty minutes to arrive.
A later announcement claimed it would take about an hour and we were offered a refreshment voucher back in the departures hall. Again we filed out and queued , fortunately I knew someone on flight and we chatted to pass the time.
Just as we arrived at the desk they called us to the gate again- our flight was ready to board.
Onto the plane and waited for take off slot. Pilot was very apologetic and said we would make good time and be around 40 minutes in the air.
Flight wasn't totally smooth , too many thunderstorms brewing, flew over Brighton and the pilots voice ( once again extremely apologetic) came across the tannoy. Unfortunately there was no slot for us to land , and we would have to hold for 25 minutes!
Back on land I joined a very long queue for a train ticket, to hear that sadly there had been a ' body' on the track and this had caused major delays and disruption to the train network.
Squeezed into the aisle of a packed southern train, made for a pretty unpleasant trip into the city- however I overheard a man say that at least our carriage had air conditioning, unlike the previous one, which was 'baking'.
Worked my way to the underground and two easy tube stops saw me arriving at the hospital two hours late for my clinic appointment.
Husband had called ahead to explain and apologise, saying I was on the delayed flight and would be there as soon as I could.
I had lost the chance of having a CT scan, but had a blood test and saw the registrar and later the consultant - found the facilities desk, collected my key for the accommodation , went to pharmacy and picked up my tablets ( wonder if I'll get them through security this time?).
And so ends the first day.
Thankfully the hospital can fit me in a scan today although 3:30pm makes it tight for time to re trace my journey back to Gatwick, particularly as I have just heard the news that due to staff shortages there is an amended service on the Gatwick express.
Still very hot and humid here, fortunately there is a large fan in the room to push the warm air around, and as I have a walk to the tube station I'd rather it be warm than pouring with rain like some parts of the country . ( yes, I could take a taxi, but I'll have been siting or lying down most of the day !)
Off to the hospital shortly for first set of kidney tests at 9 am- I have to say that despite all the set backs yesterday I was reasonably together last night, even managing to take a walk to find the accommodation I hope to be staying in later this month, and to check in with the local sports centre!
The bit I did have a belated wobble over was signing the consent form. I appreciate that the side effects won't be pleasant , and that I may or may not experience all or just some of them, but it was the more permeant damage that I could end up with, most noticeably the bowel.
There will be damage to the kidney too, and the fact that the tumour is high up will affect the stomach, definitely a good chance of nausea, and possibly ulcers. The tablets I have been issued are the same as I had with chemo (psychologically not good) and they come with side effects too!
Of course bladder and liver are in the firing line as well, and the icing on the cake is a minuscule risk of spinel damage....
Leaving the hospital I just felt cross, cross It was happening to me, and angry that it will be months before I feel well again, and then a high possibility that I will be left with permanent damage.
And then when I'd calmed down and eaten and thought a bit more, why shouldn't it be me? What makes me so very special ? I should be grateful that these amazing people can offer me this medicine as without it my life would be considerably shortened - and so it's just another challenge that life throws at you.
This last paragraph feels particularly poignant as I watch the incredible Paralympics and feel nothing but awe at the adversities so many of them have to overcome on a daily basis.
À la préchaine!!
- Posted using BlogPress from my iPad
Thursday 8 September 2016
Thursday 8th September
I know you'll be pleased to find out we finally made it back on the rock Monday afternoon, thank goodness!
A quick update on this weeks events...
I ended up calling the Marsden as I hadn't had a date for the scan next week and I needed to book flights (amongst other things).
Two days and a fair few telephone conversations later and details have at last been finalised.
Flying out Tuesday 13th for a clinic appointment at 12:45pm, to be followed by a CT "planning" scan at 2pm. Staying overnight in London, and then kidney blood test and scan on Wednesday morning, last flight back home Wednesday night.
Ive got masses of pictures I want to post concerning the last few weeks but I'm having real trouble retrieving them from the depths of this PC....
A quick update on this weeks events...
I ended up calling the Marsden as I hadn't had a date for the scan next week and I needed to book flights (amongst other things).
Two days and a fair few telephone conversations later and details have at last been finalised.
Flying out Tuesday 13th for a clinic appointment at 12:45pm, to be followed by a CT "planning" scan at 2pm. Staying overnight in London, and then kidney blood test and scan on Wednesday morning, last flight back home Wednesday night.
Ive got masses of pictures I want to post concerning the last few weeks but I'm having real trouble retrieving them from the depths of this PC....
Monday 5 September 2016
Monday 5th September
Well, after a particularly busy spell over the last week, I have been trying to find time to update this blog, and now the perfect opportunity has just arisen.
We are on our way back to Jersey from a fantastic weekend in Cornwall at my friends daughters wedding. Unfortunately the pilot has made a bit of a 'rookie' error.
We were informed before setting off that there was fog in Guernsey ( where we had to stop en route to Jersey) but that we were going to attempt to land. If however we couldn't we would fly to Jersey and Guernsey folks would have to get a later flight .
First error made, should have flown straight to Jersey! We circled Guernsey twice, couldn't land , were told we were going to Jersey, took a long time messing around ( technical flying terminology ) again, but of course by this time the weather had worsened there too, so there was nothing for it but to return to Exeter!
Happy days!
Ok, so an update on the recent Marsden visit last Tuesday.
We had a very long chat with the registrar Dr George - can't remember his surname, who explained a lot of what they thought they could do for me.
The PET scan shows that fortunately there only appears to be one area of tumour, and they need another CT scan to work out a radiotherapy plan . There maybe some evidence that the original site is a little larger than before, so rather than a short condensed blast of radiotherapy (ie over one week for five days) they think that 25 fractions ( that's what you call one dose) would be better, and in more of a spray so any surrounding areas are also targeted.
This does mean that overall a better job would be done, but they need a scan to work with, plus a kidney scan. As the tumour is wrapped around my renal vein, there will probably be damage to my kidney, but they will try to minimise that, as I need those kidneys for later chemotherapy ( which is more than likely in the future, but let's not go there yet...)
Therefore I have to go to the Marsden on the week of the 12th for a few days to get these scans done, then it should take two weeks to write up a 'game plan' meaning I hope to start my treatment on the 26th September .
As yet I have no dates other than a clinic appointment on the 13th, I had hoped to have some dates by the end of the week, as plans need to be made, hopefully they'll be in the mail today , and at some point I'll actually get home today!
AB stayed in Jersey looking after naughty dogs, playing tennis ( in the sunshine) with friends and generally slacking on the job front, while we made our way to Cornwall.
Apparently the day we went off to London and left her in charge was an eventful one. It started well enough, her ( and the dogs ) getting a lift from TH to enjoy a gentle cliff path walk, and possibly stopping for light refreshments on the way.
The sun was shining and it was pleasant enough, the dogs charging around and doing what dogs do. A mere ten minutes into the walk, Beanie recognising fields that she had absconded in before, sprinted off into the blue yonder.
Five minutes passed, then ten, twenty, forty five and still only one glimpse of a black and white blur foraging for elusive pheasants in the distance .
So much for the walk, TH and AB fed up ( well, I would have been ) took the two remaining dogs back to the car, and luckily bumped into someone they knew. Explaining the situation to him , he said he would keep an eye out for a small very naughty springer.
To cut a long story short, he did find her and kindly bought her back, although she was in a terrible state, filthy, panting, covered in grass seeds and burs.
Meanwhile AB and TH had been to his mums for some well needed refreshments, it's fair to say I wouldn't be surprised if he never had any further dealings with THAT dog, Jess meanwhile was beautifully behaved , and if she could talk would have apologised profusely for her sisters errant behaviour.
Back home and dogs bathed, the job of unpicking half the field from Beanies fur began , luckily able to go outside as the sun was shining so the girls could dry off at the same time.
Whilst AB was getting stuck in the task of sorting out Beanie, she was suddenly aware of Jess tearing past in the shrubbery chasing a huge rat.
Now whilst AB spent all of her working years dealing with stroppy teenagers in the education system , and has had a fair few challenges to deal with, she doesn't have an over fondness for four legged hairy rodents .
Resignedly she approached the now inert rat , fortunately the dogs were leaving it well alone at this stage - realising the damage had been done, or the fact that they smelt the poison that had been put down a week before to try and sort out the unwanted squatters , which were hiding under our granite trough and feeding on the compost bins .
Gingerly she scooped up the rat , having to use the garden fork , not the spade she had been searching for, making the job a little trickier, and deposited it on top of the nearest compost bin, an ironic gesture.
Mentally exhausted and by now very hot and bothered and in desperate need of a swim she decided to change into her costume, ready to head off in the direction of the sea to cool off and calm down .
Just at that moment Bex arrived home, and AB had to relive her somewhat stressful 'day off'. As they were chatting they heard a shout from the garden . Upon investigation they saw a lady that always stops and says hello to the dogs, and has a particular affinity to Beanie, leaving her biscuits at the gate if she's not around etc, gesticulating wildly while shouting and pointing to another large very dead rodent lying on our garden path.
Apologising and thanking the lady for drawing their attention to it, AB once again said she would deal with it.
Waiting for the lady to go about her business AB, still wearing only her costume picked up the fork ( quite a sight) and while Bex stood in the road checking that no cars were passing she lobbed the rat into the field, or at least she attempted to, but javelin never being her best discipline missed as the rodent fell off the fork...
By this time, Bex was telling her to hurry up, not wanting to be caught with her aunt stood in the road and undecided whether she was more embarrassed by the distinct lack of clothing attire or the mutilated dead rat on the end of a fork.
It's fair to say she had a very long swim in the sea to recover, and Bex went to lay down in a darkened room!
Back to today , and having arrived at our original destination of Exeter we were told to disembark and make our way to arrivals, but before we could we had another announcement to say that actually it looked like it was clearing in Guernsey so we were going to wait, and hopefully try again.
Ten minutes later and despite having refuelled we had the news that the fog had come down again, so we all piled off - and with a various hand signals and whispered covert messages began Operation 'Countdown' .
We had a head start over the other passengers by being first off the plane, the men walked smartly to the departures hall flight desk while we waited for the bags, deals were done, money was passed and hands were shaken.
Giving up on Exeter we jumped in a large taxi and having booked a flight , are making our way to Southampton, where at least there are more flights to chose from and who knows by then the fog may have cleared ....
Watch this space ... 😳
- Posted using BlogPress from my iPad
We are on our way back to Jersey from a fantastic weekend in Cornwall at my friends daughters wedding. Unfortunately the pilot has made a bit of a 'rookie' error.
We were informed before setting off that there was fog in Guernsey ( where we had to stop en route to Jersey) but that we were going to attempt to land. If however we couldn't we would fly to Jersey and Guernsey folks would have to get a later flight .
First error made, should have flown straight to Jersey! We circled Guernsey twice, couldn't land , were told we were going to Jersey, took a long time messing around ( technical flying terminology ) again, but of course by this time the weather had worsened there too, so there was nothing for it but to return to Exeter!
Happy days!
Ok, so an update on the recent Marsden visit last Tuesday.
We had a very long chat with the registrar Dr George - can't remember his surname, who explained a lot of what they thought they could do for me.
The PET scan shows that fortunately there only appears to be one area of tumour, and they need another CT scan to work out a radiotherapy plan . There maybe some evidence that the original site is a little larger than before, so rather than a short condensed blast of radiotherapy (ie over one week for five days) they think that 25 fractions ( that's what you call one dose) would be better, and in more of a spray so any surrounding areas are also targeted.
This does mean that overall a better job would be done, but they need a scan to work with, plus a kidney scan. As the tumour is wrapped around my renal vein, there will probably be damage to my kidney, but they will try to minimise that, as I need those kidneys for later chemotherapy ( which is more than likely in the future, but let's not go there yet...)
Therefore I have to go to the Marsden on the week of the 12th for a few days to get these scans done, then it should take two weeks to write up a 'game plan' meaning I hope to start my treatment on the 26th September .
As yet I have no dates other than a clinic appointment on the 13th, I had hoped to have some dates by the end of the week, as plans need to be made, hopefully they'll be in the mail today , and at some point I'll actually get home today!
AB stayed in Jersey looking after naughty dogs, playing tennis ( in the sunshine) with friends and generally slacking on the job front, while we made our way to Cornwall.
Apparently the day we went off to London and left her in charge was an eventful one. It started well enough, her ( and the dogs ) getting a lift from TH to enjoy a gentle cliff path walk, and possibly stopping for light refreshments on the way.
The sun was shining and it was pleasant enough, the dogs charging around and doing what dogs do. A mere ten minutes into the walk, Beanie recognising fields that she had absconded in before, sprinted off into the blue yonder.
Five minutes passed, then ten, twenty, forty five and still only one glimpse of a black and white blur foraging for elusive pheasants in the distance .
So much for the walk, TH and AB fed up ( well, I would have been ) took the two remaining dogs back to the car, and luckily bumped into someone they knew. Explaining the situation to him , he said he would keep an eye out for a small very naughty springer.
To cut a long story short, he did find her and kindly bought her back, although she was in a terrible state, filthy, panting, covered in grass seeds and burs.
Meanwhile AB and TH had been to his mums for some well needed refreshments, it's fair to say I wouldn't be surprised if he never had any further dealings with THAT dog, Jess meanwhile was beautifully behaved , and if she could talk would have apologised profusely for her sisters errant behaviour.
Back home and dogs bathed, the job of unpicking half the field from Beanies fur began , luckily able to go outside as the sun was shining so the girls could dry off at the same time.
Whilst AB was getting stuck in the task of sorting out Beanie, she was suddenly aware of Jess tearing past in the shrubbery chasing a huge rat.
Now whilst AB spent all of her working years dealing with stroppy teenagers in the education system , and has had a fair few challenges to deal with, she doesn't have an over fondness for four legged hairy rodents .
Resignedly she approached the now inert rat , fortunately the dogs were leaving it well alone at this stage - realising the damage had been done, or the fact that they smelt the poison that had been put down a week before to try and sort out the unwanted squatters , which were hiding under our granite trough and feeding on the compost bins .
Gingerly she scooped up the rat , having to use the garden fork , not the spade she had been searching for, making the job a little trickier, and deposited it on top of the nearest compost bin, an ironic gesture.
Mentally exhausted and by now very hot and bothered and in desperate need of a swim she decided to change into her costume, ready to head off in the direction of the sea to cool off and calm down .
Just at that moment Bex arrived home, and AB had to relive her somewhat stressful 'day off'. As they were chatting they heard a shout from the garden . Upon investigation they saw a lady that always stops and says hello to the dogs, and has a particular affinity to Beanie, leaving her biscuits at the gate if she's not around etc, gesticulating wildly while shouting and pointing to another large very dead rodent lying on our garden path.
Apologising and thanking the lady for drawing their attention to it, AB once again said she would deal with it.
Waiting for the lady to go about her business AB, still wearing only her costume picked up the fork ( quite a sight) and while Bex stood in the road checking that no cars were passing she lobbed the rat into the field, or at least she attempted to, but javelin never being her best discipline missed as the rodent fell off the fork...
By this time, Bex was telling her to hurry up, not wanting to be caught with her aunt stood in the road and undecided whether she was more embarrassed by the distinct lack of clothing attire or the mutilated dead rat on the end of a fork.
It's fair to say she had a very long swim in the sea to recover, and Bex went to lay down in a darkened room!
Back to today , and having arrived at our original destination of Exeter we were told to disembark and make our way to arrivals, but before we could we had another announcement to say that actually it looked like it was clearing in Guernsey so we were going to wait, and hopefully try again.
Ten minutes later and despite having refuelled we had the news that the fog had come down again, so we all piled off - and with a various hand signals and whispered covert messages began Operation 'Countdown' .
We had a head start over the other passengers by being first off the plane, the men walked smartly to the departures hall flight desk while we waited for the bags, deals were done, money was passed and hands were shaken.
Giving up on Exeter we jumped in a large taxi and having booked a flight , are making our way to Southampton, where at least there are more flights to chose from and who knows by then the fog may have cleared ....
Watch this space ... 😳
- Posted using BlogPress from my iPad
Location:Mid flight
Monday 29 August 2016
Bank holiday Monday ...
Off to London again tomorrow, this time for a clinic appointment. Hope to have lots of information on the forthcoming radiotherapy , dates , times etc.
Brother gone back and aunt has arrived - already amassing plenty of photos !
Wondering if I have time to fit in a sea swim before the 7:30am airport run (!) otherwise it may have to be 9 pm !!!
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Brother gone back and aunt has arrived - already amassing plenty of photos !
Wondering if I have time to fit in a sea swim before the 7:30am airport run (!) otherwise it may have to be 9 pm !!!
- Posted using BlogPress from my iPad
Wednesday 24 August 2016
Wednesday 24th August
Starting off this post with a few photos of my crazy little bro and JW ( soon to be JN!!)
(Huge thanks to SW for collecting them from the airport, and to AH for making us a rather special fish supper- it meant I could get a third sea swim in !)
So, now to make sense of the yesterdays hospital appointment.
On the whole it's good news, ( if you take into account the fact I have a cancerous tumour growing as "good news"). The PET scan showed that the rest of me seemed to be clear, and the only tumour was the one that they had had only partially removed in 2014's operation.
The general consensus was to press ahead with radiotherapy, every weekday for five weeks at the Marsden.
I have not particularly looked at radiotherapy in great detail, thought I'd cross that bridge as and when, so I do have lots of questions that need asking, KG is looking to get me back to the Marsden next Tuesday ( their clinic day), in order to have the pre assessment chat.
We have a wedding in Cornwall on the 3rd September, and then a week in France on the 16th... so my plan would be not to start anything until the 26th. KG doesn't think a few weeks will make a lot of difference anyway.
Unsurprisingly my CA125 has risen again to 81, but the rest of the liver/kidney functions seem fine.
As I type these words it all seems a little surreal, the last few days I've enjoyed aqua aerobics, sea swims, racquetball (thanks AB) and badminton (all in one day) and yesterday was fortunate enough to sea swim three times, fit in a yoga class, and have a cracking netball training session in the evening. So talking about treatments and hospitals etc feels very bizarre given my current 'healthy' state. Mind you I'm not complaining, it certainly does a lot for my mental(!) health to be busy and active, and I'm sure being as fit as I can will help me in the long run.
Thanks again to all the positive support our family receive on a daily basis, very humbling .
Thursday 18 August 2016
Royal Marsden
Sitting on the Gatwick express heading for the airport.... Thought I'd have oodles of time to at least formulate the semblance of a blog post, but we had barely sat down in the waiting room before I was called through ... Mind you, it takes concentration to listen for a "Barbara Lucy" name... Especially as the people called before me I would never even been able to pronounce , let alone shout out.
We left home at 7:30am with lots of " good luck" texts/ messages and emails still ringing in my ears and prayed that the fog that was lingering over the west of the island would quickly disperse.
Our plane managed to land in Jersey ok thank goodness though our flight was only delayed by twenty minutes, but this was made up during the flight. Train tickets bought , one stop on the tube, a brisk walk ( is there any other?) and straight into the Marsden, exactly on time- phew.
I was taken into the "radiation" room, asked questions about allergies, drugs , etc, pumped full of ( a trace!) radioactive substance , told not to hang around pregnant women or small children under 5 for the rest of the day, and then left for an hour!
An uncomfortable 30 minutes lying very, very still with my arms over my head, going in and out of a couple of large whirling polo mints and it was all over, the young man told me I had passed. Not of course with distinction but a pass is a pass, as I'm sure lots of young students on A'level results day will be pleased to see.
Steve led me outside to sit on a bench and eat - having not had anything since the night before and it now being 1:45pm, I was in need of nourishment.
Poor Steve, bless him, he thought that there was a possibility that we would get some results today ( I had a joke with my KG that shame they couldn't see me after and plot the next course of action) , but I saw nobody in he consultant capacity today, just young trained nurses doing their important jobs with some very sick people.
A debate followed between us as to what we do for the rest of the day, and walking in the parks, ( away from the shops) and being a tourist seemed like a good option. Luckily for us it was warm but not really sunny, ( otherwise I would have been sad to miss my sea swims!- aren't I lucky ) .
We sought solace, ( and coolness ) in St Martin's in the field Church, where there was not only welcome refreshment but also a very talented orchestra rehearsing for their performance that evening.
So, to bring everyone fully up to date I know already that I have a wretched cancerous tumour growing , so that is going to be very evident on the scan, the question is are there any others? .
If it's only in one place then 'maybe' I can have some radiotherapy to zap it.. If there's a few "hotspots" I don't know what they'll suggest .
I have a hospital appointment on Tuesday next week ( 23rd) and I need a blood test before, KG is trying to get me included on the MDT meeting that morning, so fingers crossed I get results and can move forward.
I'm having a lovely week with my bro and JW, and it's been good to keep busy, ( well, I'm busy he just seems to be lying around sleeping, nothing new there....)
Taking one day at a time, feeling grateful for what I have got , and as always I'll KBO.....
A HUGE thanks to all you readers out there...
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We left home at 7:30am with lots of " good luck" texts/ messages and emails still ringing in my ears and prayed that the fog that was lingering over the west of the island would quickly disperse.
Our plane managed to land in Jersey ok thank goodness though our flight was only delayed by twenty minutes, but this was made up during the flight. Train tickets bought , one stop on the tube, a brisk walk ( is there any other?) and straight into the Marsden, exactly on time- phew.
I was taken into the "radiation" room, asked questions about allergies, drugs , etc, pumped full of ( a trace!) radioactive substance , told not to hang around pregnant women or small children under 5 for the rest of the day, and then left for an hour!
An uncomfortable 30 minutes lying very, very still with my arms over my head, going in and out of a couple of large whirling polo mints and it was all over, the young man told me I had passed. Not of course with distinction but a pass is a pass, as I'm sure lots of young students on A'level results day will be pleased to see.
Steve led me outside to sit on a bench and eat - having not had anything since the night before and it now being 1:45pm, I was in need of nourishment.
Poor Steve, bless him, he thought that there was a possibility that we would get some results today ( I had a joke with my KG that shame they couldn't see me after and plot the next course of action) , but I saw nobody in he consultant capacity today, just young trained nurses doing their important jobs with some very sick people.
A debate followed between us as to what we do for the rest of the day, and walking in the parks, ( away from the shops) and being a tourist seemed like a good option. Luckily for us it was warm but not really sunny, ( otherwise I would have been sad to miss my sea swims!- aren't I lucky ) .
We sought solace, ( and coolness ) in St Martin's in the field Church, where there was not only welcome refreshment but also a very talented orchestra rehearsing for their performance that evening.
So, to bring everyone fully up to date I know already that I have a wretched cancerous tumour growing , so that is going to be very evident on the scan, the question is are there any others? .
If it's only in one place then 'maybe' I can have some radiotherapy to zap it.. If there's a few "hotspots" I don't know what they'll suggest .
I have a hospital appointment on Tuesday next week ( 23rd) and I need a blood test before, KG is trying to get me included on the MDT meeting that morning, so fingers crossed I get results and can move forward.
I'm having a lovely week with my bro and JW, and it's been good to keep busy, ( well, I'm busy he just seems to be lying around sleeping, nothing new there....)
Taking one day at a time, feeling grateful for what I have got , and as always I'll KBO.....
A HUGE thanks to all you readers out there...
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Wednesday 10 August 2016
Wednesday 10th August
Just to update information from last weeks posting... I did finally receive a letter from the Marsden on Monday , for an appointment at 9am on the 17th.
Tuesday morning I called the hospital and inquired as to whether there was a chance to have a slightly later time so I wouldn't have to go over the night before ( I did explain a bit more ) .
The lady was extremely helpful and after a discussion she swopped me a Wednesday appointment to a Thursday one at 11:45am ( 18th) .
Much easier to get a flight out at 9 am and return the same day, slightly less stressful.
Small problem in its actually Gorey Fete and we had an invite to lunch that day, but it can't be helped.
Steve is insisting coming with me, he's says I'll be too dopey to manage on my own ( other folk do I'm sure, but I'll be pleased of the support.) Not drinking or eating anything for 6 hours before will be difficult enough, and I know that the procedure takes at least two hours.
Once again , it's not so much the scan, it'll be the results, my consultant is going to suggest I am given the results straight away, and then they can decided the next course of action.
My best scenario is for the tumour to be slow growing and only found in one area, and then I guess they may suggest radiotherapy .
It's just pants .
I'm feeling ok, and I've been told I look ok too (!) This makes it so hard to know that this is happening and all beyond my control .
Most of the day I stick my head In the sand and ignore it, grateful for days like today when I've played racquetball ( thanks CJ) played tennis ( thanks AH FP and CH) and played badminton with the boys tonight . In between I've had a sea swim, and visited Macmillan for some reiki .
No dog walks today but had to have a trip to the vet with Beanie as she has had a sore eye for a few days. We went on Monday , and was given cream and drops etc , told to come back today . She then had to be taken in, sedated and they removed a small hard grass seed from her third eyelid. She now has to wear a 'collar' and is on ' light duties' only.
This is one sad dog... But can I say she only has herself to blame- if she didn't go tearing off chasing things in dense undergrowth ( typical springer behaviour ) she probably wouldn't be in the state she's in now.
Whilst she's sedated and sleepy it's ok, but I can see the next couple of days being challenging.
I have been thinking of my friends friends up in Scotland , missing seeing them on the beach this year, and wishing them all the best.
I've got lots happening over the next few weeks to keep me busy, my younger , weaker, and athletically challenged brother is coming ( with JW , his fiancé , soon to be JN! ) on Saturday for a week.
I have a few activities lined up , and of course on Thursday he'll have to do dog duties before he sneaks off down to Gorey fete to drink beer.
Three days after he's gone back I've got my older ( weighty, balding and also unable to beat me at racquetball / badminton .. I've let him off tennis and golf ) and my sister in law coming for four days, and they are followed by my mad /crazy/loveable/ kind and funny aunt.
Then we go to Cornwall for a wedding :-)
My sister meanwhile is busy entertaining her grandchildren , and revelling in the delights of the cold North Sea , plus other "northern" attractions .
Bex kindly put a little video clip together of me in a typical day called " a day in the life' for Sally to share with her friends, and all those folks over there whom I've never met but who think/ pray for me on a regular basis.
My good friend once told me of a fisherman's prayer .
"God, please help me, the sea is so big and my boat is so small"
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Sunday 7 August 2016
Sunday 7th August 2016
I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
Maya Angelou
Ten days since my last post, and I still haven't heard anything officially from the Marsden.
I did finally call them on Thursday and had a short chat with the 'appointments' lady, who told me (once I had given her my ref number ) that I was booked in for the PET scan on the 17th August.
I really hoped that the letter would have come through on Friday, then I could have got on with flight booking, but no joy, and we don't have post deliveries on Saturday, I sincerely hope it arrives tomorrow.
It being a birthday week last week , its been a little bit emotional, and I have a continuing minor throat irritation, whether that's due to being a bit stressed or i'm fighting off an infection I don't know, but its a nuisance just the same.
Left in charge of the girls while I go swimming!
Tecumseh
Thursday 28 July 2016
Thursday 28th July
I have still not heard anything from the Marsden and do not have a date for this PET scan....
#notfunny
#gettingcross
#senseofhumourfailure
It'll come tomorrow now!!!
#notfunny
#gettingcross
#senseofhumourfailure
It'll come tomorrow now!!!
Can't stay cross for too long though....
Sunday 24 July 2016
Sunday 24th July
What a whirlwind week, it's no wonder I've got a bad throat ( had it for a week , but talking non-stop hasn't helped!) and now a rotten cold. Must be feeling rubbish as didn't have a sea swim yesterday.
Still, I (we?) thats me and LH have had a fantastic time, she now needs several days to recover.. I'm not sure why she puts herself through it, she must love me?!
My week in pictures..
We started off with a coffee at El tico, on the very warm Tuesday...
Arriving in Sark for our day trip
Her, looking longingly at the horse and carts when I had already told her firmly we were hiring bikes!!
We found the venus pool.... with a 'venus' swimming in it!!!!
Plucking up the courage for a swim after a treacherous rock climb down...
Note the matching blue calf strapping....
We both made it- in and out again!!
Excellent day was had by all....
Followed by a 'fish' foot spa...a bit weird, but one of us had a laugh...
Still, I (we?) thats me and LH have had a fantastic time, she now needs several days to recover.. I'm not sure why she puts herself through it, she must love me?!
My week in pictures..
We started off with a coffee at El tico, on the very warm Tuesday...
Shopping at harbour view, with my friends homemade handbags etc ( Libertyrock)
And we went swimming in the sea at Anneport!
(I won't post the photos of the issue with the changing robe.....)
Arriving in Sark for our day trip
Us at the top of La Coupee
View of Guernsey !
I dont know whats funnier, me scrambling over the rocks to go swimming, or her photography with the man's tummy in the shot!!
A well earned beer at the end... ( that was lunch!!)
I did get a lunch bought on Friday
There comes a point in your life when you realize who really matters, who never did, and who always will.
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