Wednesday 31 May 2017
Nearing the finishing line...
Sad to say goodbye to son #1 and his girlfriend who have been with me over the last few days- but I'll see them again Friday!
I had such a good weekend with lots of the U.K. Family in Derbyshire , sixteen of us house sharing , cycling , walking, cooking , and lots of eating, drinking and laughing. The best medicine .
Back in the mugginess and heat of London and I've struggled a bit to get through this week. I guess it's a combination of a few things, missing the family, dogs , sport and sea air, but ultimately the 'side effects' are becoming more pronounced .
Last Monday I thought my throat was getting a bit sore, and ten days later I am distinctly uncomfortable eating and drinking. Sometimes really difficult and painful to swallow, I have a constant lump in my throat that no matter how much water ( or alcohol !) you drink doesn't go away!
I saw DR AT my consultant at the clinic this afternoon, I said all things considered I felt I was doing well, despite my throat and the red itchy rash covering most of neck. I do use lots of Aloe Vera lotion daily and it does help but knew I couldn't get away without any discomfort.
She did feel my neck and thought that the tumour had shrunk, which is good news, and said she wouldn't have been surprised if it hadn't as that's not always the case. I hadn't realised that the radiotherapy keeps working at least two to three months post treatment, actually retract that, I did know as they warned me last time. It's just brought it home a bit more in the fact you can feel this tumour as opposed to the other one in my abdomen.
However the bad news is my throat and neck will get much worse after the radiotherapy has finished, and continue for at least a couple of weeks, so the worst is yet to come . (I'm not going to mention tiredness / breathlessness as that too appears to have kicked in. )
The good news is , I can still talk !!
We also talked about 'what happens now' and AT will talk to the other parties involved in my care and see when I can start hormone replacement, get me an appointment in Jersey for a bone marrow test, also book a follow up post treatment appointment ( also in Jersey) and maybe a date for a CT scan late summer.
I'm back in Jersey this weekend, but back to London on Monday for the last two sessions and the clinic ....
I've promised myself my first swim in the sea..... And as much sport ( and dog walks) as I can plus our eldest is having a birthday, so lots to pack in. :-)
KBO
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Wednesday 24 May 2017
Jersey to London to Derbyshire
Last weekend in Jersey was brilliant, the weather of course was warm and sunny which always helps!
Played racquetball on Saturday , ( so nice to do some exercise and have a laugh !) walked the dogs, went into town with Bex and then attended a 'black tie' Ball at the Caesarean tennis club- fab day.
On Sunday Bex kindly dropped us off at La Rocque at 8:30am so we could walk to Corbiere , only about 15-17 miles ( part way with the dogs , although poor Jess had had enough by the time we got to St Aubin) , mind you so had Steve!
We used that as a refuelling stop , well he did anyway, and gamely carried on ourselves, leaving Becky once more to collect the dogs and take them home.
It really is lovely to walk those paths and see those spectacular views, even more special when I'd been seeing the grime and dirt of the London streets for the week.
Back in London met up with S LeC for a cup of tea and a chat, can't manage to meet up in Jersey but succeeded in the UK!
Tuesday my BF arrived by train to stay, always so good to see her, even if I did have to remind her that she came to look after me, not the other way around.
Honestly that girl is a liability , clueless on road crossing, ( at one point I walked across a road grabbed her arm to follow me only to be left carrying her cardigan with her standing open mouthed on the kerb).
Last night walking back to the flat after we had seen a show, the couple in front of us stopped suddenly to have a quick snog. Don't ask me how she managed to get tangled up in it, talk about embarrassing . Her , not the couple .
Don't even get me started on the tube journeys, despite me prepping her in case we lost each other, she never knew which way to go, or which station to get off. Bless.
Anyway, I'm over half way through the radiotherapy now, number 12 ticked off, and so far it's going ok. Caught up with the very lovely registrar Dr C at the clinic today. Had bloods taken yesterday with usual reading of low white cell count, rest of it within 'normal' range.
My throat has become sore, feels like I've half swallowed a tablet and it's got stuck, not really painful as such, just a bit uncomfortable .
Not as uncomfortable as I felt however earlier this evening, when the fire alarm went off in the flat as I had just stepped into the shower.....sharply exit the shower grabbing towel.... Alarm goes off, breathe sigh of relief , get back in shower ....alarm goes off....
Less of a jack-in-the -box, more of a jill....
On Friday I am off to Derbyshire to meet up with lots of my UK family , I know they can hardly wait to see me, and I've been given the job of organising everyone, or was it the washing-up? I'm sure it's both and more, but as there are 17 of us house sharing I can always delegate :-)
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Played racquetball on Saturday , ( so nice to do some exercise and have a laugh !) walked the dogs, went into town with Bex and then attended a 'black tie' Ball at the Caesarean tennis club- fab day.
On Sunday Bex kindly dropped us off at La Rocque at 8:30am so we could walk to Corbiere , only about 15-17 miles ( part way with the dogs , although poor Jess had had enough by the time we got to St Aubin) , mind you so had Steve!
We used that as a refuelling stop , well he did anyway, and gamely carried on ourselves, leaving Becky once more to collect the dogs and take them home.
It really is lovely to walk those paths and see those spectacular views, even more special when I'd been seeing the grime and dirt of the London streets for the week.
Back in London met up with S LeC for a cup of tea and a chat, can't manage to meet up in Jersey but succeeded in the UK!
Tuesday my BF arrived by train to stay, always so good to see her, even if I did have to remind her that she came to look after me, not the other way around.
Honestly that girl is a liability , clueless on road crossing, ( at one point I walked across a road grabbed her arm to follow me only to be left carrying her cardigan with her standing open mouthed on the kerb).
Last night walking back to the flat after we had seen a show, the couple in front of us stopped suddenly to have a quick snog. Don't ask me how she managed to get tangled up in it, talk about embarrassing . Her , not the couple .
Don't even get me started on the tube journeys, despite me prepping her in case we lost each other, she never knew which way to go, or which station to get off. Bless.
Anyway, I'm over half way through the radiotherapy now, number 12 ticked off, and so far it's going ok. Caught up with the very lovely registrar Dr C at the clinic today. Had bloods taken yesterday with usual reading of low white cell count, rest of it within 'normal' range.
My throat has become sore, feels like I've half swallowed a tablet and it's got stuck, not really painful as such, just a bit uncomfortable .
Not as uncomfortable as I felt however earlier this evening, when the fire alarm went off in the flat as I had just stepped into the shower.....sharply exit the shower grabbing towel.... Alarm goes off, breathe sigh of relief , get back in shower ....alarm goes off....
Less of a jack-in-the -box, more of a jill....
On Friday I am off to Derbyshire to meet up with lots of my UK family , I know they can hardly wait to see me, and I've been given the job of organising everyone, or was it the washing-up? I'm sure it's both and more, but as there are 17 of us house sharing I can always delegate :-)
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Thursday 18 May 2017
Thursday 18th May
Time goes fast when you're enjoying yourself! This week certainly is whizzing by, and despite the ten minutes or so I'm wearing the 'mask', I'm mostly enjoying myself!
It's been lovely to have Jack and Steph over from Monday until Wednesday, and then they swopped with Dan and Baz, who are now with me until we return tomorrow night.
We've had a fairly full daily itinerary and managed to shop, see some shows and visit some tourist attractions . Mostly there's lots of walking.
That's not to say I'm not missing Jersey Life as I am, particularly the fresh air and cleanliness , as well as the obvious , family, dogs and SPORT!
I didn't join the gym that I went to in the Autumn over here as they were doing refurbishment to their pool and I thought it's not worth signing up, but I do miss my classes / teams.
Bumped into my previous consultant / surgeon in the corridor at the hospital today , he was surprised to see me here again, as were the radiologists that were a bit saddened to see my name on the list again so soon.
However I said it was a good thing! Having the opportunity to receive this treatment will hopefully extend my remission time , and I can get on and enjoy the rest of 2017.
You have little time to spend on feeling sorry for yourself at this hospital, there are some people you see sat in the waiting rooms who are in far worse states than yourself, that makes you pull up short and be grateful for the life you've got.
“Piglet noticed that even though he had a Very Small Heart, it could hold a rather large amount of Gratitude.”
― A.A. Milne, Winnie-the-Poo
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Friday 12 May 2017
I am pleased to be able to tick off week one, even though I only ended up having four treatments, at least I've made a start.
I've also had a full week of visitors , FB and AB joined me and helped to make the time pass quickly.
I can't say I'm getting used to that mask, for all those ladies out there of a certain age , imagine having your head stuck sideways in a mammogram and that's pretty much what it's like.
Today I didn't have a student doing the calculations, and whilst everybody has got to learn sometime, and it's not easy finding the 'right candidates ' for them to learn their trade on, I was relieved. It obviously takes a little while longer to line the shield in the correct position and when you have a patient in discomfort and the two other radiologists waiting it is very stressful time for them and me!
Ok, so let me paint the scene.
Siting outside a cafe on Shaftesbury avenue enjoying a cup of tea and a piece of cake, lots of people walking past and the general hustle and bustle that is London. My friend couldn't quite manage all her cake , it was quite rich so she left the end piece. We had finished the drinks and pushed the plates and cups slightly to the middle of the small table.
Mid conversation we were interrupted by a 'gentleman' who spoke and acted in one fluid movement. He asked if we had finished and wether he could take it, indicating the plates, to which my friend replied " yes, of course". Before we could add anything else, he had swooped up the plate with the left over confectionary and made off down the pavement .
Despite my friend calling, "but not the plate!" Too late , cake, plate and man had disappeared, never to be seen again.
Day one of AB arriving and we are walking along the street when two heavily armed policeman passed us, just carrying out their normal foot patrol.
Two paces further along the road and she turned to me saying " It must be awful having to walk along all the time with your hand on your weapon"
There's no answer to that .
So looking forward to seeing the family, and dogs and having a good weekend in beautiful Jersey.
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I've also had a full week of visitors , FB and AB joined me and helped to make the time pass quickly.
I can't say I'm getting used to that mask, for all those ladies out there of a certain age , imagine having your head stuck sideways in a mammogram and that's pretty much what it's like.
Today I didn't have a student doing the calculations, and whilst everybody has got to learn sometime, and it's not easy finding the 'right candidates ' for them to learn their trade on, I was relieved. It obviously takes a little while longer to line the shield in the correct position and when you have a patient in discomfort and the two other radiologists waiting it is very stressful time for them and me!
Ok, so let me paint the scene.
Siting outside a cafe on Shaftesbury avenue enjoying a cup of tea and a piece of cake, lots of people walking past and the general hustle and bustle that is London. My friend couldn't quite manage all her cake , it was quite rich so she left the end piece. We had finished the drinks and pushed the plates and cups slightly to the middle of the small table.
Mid conversation we were interrupted by a 'gentleman' who spoke and acted in one fluid movement. He asked if we had finished and wether he could take it, indicating the plates, to which my friend replied " yes, of course". Before we could add anything else, he had swooped up the plate with the left over confectionary and made off down the pavement .
Despite my friend calling, "but not the plate!" Too late , cake, plate and man had disappeared, never to be seen again.
Day one of AB arriving and we are walking along the street when two heavily armed policeman passed us, just carrying out their normal foot patrol.
Two paces further along the road and she turned to me saying " It must be awful having to walk along all the time with your hand on your weapon"
There's no answer to that .
So looking forward to seeing the family, and dogs and having a good weekend in beautiful Jersey.
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Location:Gatwick Express
Wednesday 10 May 2017
Wednesday 10th May
Despite oversleeping on Monday morning we still caught the 7:20am flight to London, thank goodness. Trains and tubes transport all fine and managed to drop bags into accommodation with time to spare.
Fortunately my friend is with me so the whole business is not so stressful as it could be when travelling on your own.
In fact we had a few hours to spare so jumped on a tube and went to meet my little bro and wife in Covent Garden for a cup of coffee. All good so far.
Back to hospital and the nerves started jangling again, I handed in my treatment plan to the receptionist and exchanged a few pleasantries , especially as it hadn't been that long since I'd seen her.
A few moments later she looked confused, saying " I have you in my system, but not to start until Thursday 11th" .
There was quite a long pause....
Rosie came up from radiology to talk to me, she said don't worry we will sort it out, but the machine will take a few hours to set up ready and we can't really fit it in today. She was apologetic but it certainly wasn't her fault about the mix up, she said she'd ring me as soon as they had talked to the consultant and various bodies and get back to me.
True to her word within the hour she rang me back to say appointment Tuesday morning , and a new timetable of treatments . Obviously the down side is I won't finish now until the 6 th June, but that can't be helped .
The shield /mask whatever you want to call it is not nice , it's claustrophobic covers your whole face, head and neck and is clamped down to the table whilst you're wearing it. Yes, I know it's "only for ten minutes" and all the Jazz but it's still pretty rubbish !
Of course in order to make it all bearable what's a girl to do but get taken out for afternoon tea at The Ivy in Chelsea, followed by watching the film Their Finest at the cinema - ( top notch film if you haven't seen it)
Still, now I've done it once I know what to expect, and I'm just off to hospital now for the second dose.
In the words of Winston Churchill KBO
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Fortunately my friend is with me so the whole business is not so stressful as it could be when travelling on your own.
In fact we had a few hours to spare so jumped on a tube and went to meet my little bro and wife in Covent Garden for a cup of coffee. All good so far.
Back to hospital and the nerves started jangling again, I handed in my treatment plan to the receptionist and exchanged a few pleasantries , especially as it hadn't been that long since I'd seen her.
A few moments later she looked confused, saying " I have you in my system, but not to start until Thursday 11th" .
There was quite a long pause....
Rosie came up from radiology to talk to me, she said don't worry we will sort it out, but the machine will take a few hours to set up ready and we can't really fit it in today. She was apologetic but it certainly wasn't her fault about the mix up, she said she'd ring me as soon as they had talked to the consultant and various bodies and get back to me.
True to her word within the hour she rang me back to say appointment Tuesday morning , and a new timetable of treatments . Obviously the down side is I won't finish now until the 6 th June, but that can't be helped .
The shield /mask whatever you want to call it is not nice , it's claustrophobic covers your whole face, head and neck and is clamped down to the table whilst you're wearing it. Yes, I know it's "only for ten minutes" and all the Jazz but it's still pretty rubbish !
Of course in order to make it all bearable what's a girl to do but get taken out for afternoon tea at The Ivy in Chelsea, followed by watching the film Their Finest at the cinema - ( top notch film if you haven't seen it)
Still, now I've done it once I know what to expect, and I'm just off to hospital now for the second dose.
In the words of Winston Churchill KBO
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Saturday 6 May 2017
Saturday 6th May
I don't think the fact that I will be off to London on Monday has actually sunk in yet- it all feels a bit surreal.
It's been quite a lot to organise flights, accommodation etc, but hopefully it's all sorted now. Fortunately I'm staying at the same place I stayed in the Autumn, Chelsea Cloisters. It's close to the hospital and I've got to know the area quite well over the years....
The radiotherapy treatments have all been pre booked and they have done their best to help me out by giving appointments late on Mondays, and early on Fridays, so I can come home at weekends .
The family and I have also been trying to sort out weekly plans for visitors ( which is fab!) and daily dog walkers, thankfully having children with lovely girlfriends is a real bonus!
Talking of dogs , we had a bit of a wildlife walk the other day. Strolling along the cliff paths with Jess and Beanie the latter who prefers to race around at high speed rather than actually 'walk'. I was aware that rather than zooming past me at 100 miles an hour, she was trotting behind me. Upon turning around I saw her proudly carrying a baby rabbit in her mouth, like she'd won first prize in a raffle.
She then hand delivered it to me, accepted her treat and tore off to investigate what else she could find. Ten minutes later I saw her nose in the air, sniffing the wind blowing over from the steep cliff face.
As usual my vocal command fell on deaf ears and she took an almighty jump of about six feet and landed on a pheasant.
I'm not sure if the birds wing was damaged before Beanie landed on her but it appeared to be afterwards.....
I've probably now put off any prospective dog walkers with that last paragraph .
Despite the best efforts of my eldest to sort out some photo uploads, seems like my laptop is just too old... I know how it feels.
I'd just like to send my best wishes to my friend in Australia who is having a tough time with the side effects from chemo, despite the distance between us she has been very supportive to me during the last few years. We are old school friends that used to play netball together, ( she was the best shooter I knew, and never missed a goal!)
I will keep updating this blog on a fairly regular basis, as much as for me than all you lovely family and friends.
PS I see that a woman in Virginia was awarded $110.5 million in a lawsuit case against Johnson & Johnson baby powder. She was diagnosed with Ovarian cancer in 2012, having used talcum based products for 40 years, she was too ill to attend the trial .
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It's been quite a lot to organise flights, accommodation etc, but hopefully it's all sorted now. Fortunately I'm staying at the same place I stayed in the Autumn, Chelsea Cloisters. It's close to the hospital and I've got to know the area quite well over the years....
The radiotherapy treatments have all been pre booked and they have done their best to help me out by giving appointments late on Mondays, and early on Fridays, so I can come home at weekends .
The family and I have also been trying to sort out weekly plans for visitors ( which is fab!) and daily dog walkers, thankfully having children with lovely girlfriends is a real bonus!
Talking of dogs , we had a bit of a wildlife walk the other day. Strolling along the cliff paths with Jess and Beanie the latter who prefers to race around at high speed rather than actually 'walk'. I was aware that rather than zooming past me at 100 miles an hour, she was trotting behind me. Upon turning around I saw her proudly carrying a baby rabbit in her mouth, like she'd won first prize in a raffle.
She then hand delivered it to me, accepted her treat and tore off to investigate what else she could find. Ten minutes later I saw her nose in the air, sniffing the wind blowing over from the steep cliff face.
As usual my vocal command fell on deaf ears and she took an almighty jump of about six feet and landed on a pheasant.
I'm not sure if the birds wing was damaged before Beanie landed on her but it appeared to be afterwards.....
I've probably now put off any prospective dog walkers with that last paragraph .
Despite the best efforts of my eldest to sort out some photo uploads, seems like my laptop is just too old... I know how it feels.
I'd just like to send my best wishes to my friend in Australia who is having a tough time with the side effects from chemo, despite the distance between us she has been very supportive to me during the last few years. We are old school friends that used to play netball together, ( she was the best shooter I knew, and never missed a goal!)
I will keep updating this blog on a fairly regular basis, as much as for me than all you lovely family and friends.
PS I see that a woman in Virginia was awarded $110.5 million in a lawsuit case against Johnson & Johnson baby powder. She was diagnosed with Ovarian cancer in 2012, having used talcum based products for 40 years, she was too ill to attend the trial .
- Posted using BlogPress from my iPad
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