A big thanks to A Betty who successfully delivered me to my destination just south of Peterborough.
Steve and Bex aided and abetted by Satnav located us at the pub and we enjoyed a pub lunch with an old friend Kim, who lived close by.
AB headed off east towards home and we turned west and made our way back towards Northampton and Towcester where we were meeting up with another friend and her lovely family.
BBq supper on the lawn and a tour of the farm with lambs, calves and chickens, a lovely end to a very busy day ( busy talking anyway).
Stayed the night at a very random little B and B in a very pretty village called Blaksley, it was different to say the least, and not the most comfortable, but we coped!
My poor room mates are really going to have had quite enough of me by the end of this week, I'm sick hearing myself cough, it's certainly not getting any easier, but fortunately don't think it's worse. I'm hoping the steroids are helping to control it a bit.
I'm not exactly thrilled with the amount of fluid that's been building up in my left leg/groin , it started at the weekend and now I feel like I have a slowly dripping tap down into my legs that is permanently switched on. I'm guessing it's the same issue I had in November before I started chemo.
Still, we have had a lovely day exploring Warwick castle, and the town, luckily the weather although overcast hasn't rained and we were able to take in all the jousting tournament, bird displays and view the amazing rooms in the castle itself.
It's been very well done and lots of interactive stuff for children and adults alike, we all enjoyed ourselves.
Tomorrow we are heading to Stratford-upon-Avon and then further onto to Oxford.
"Do not follow where the path may lead. Go instead where there is no path and leave a trail ". Ralph Waldo Emerson
- Posted using BlogPress from my iPad
Tuesday 29 May 2018
Monday 28 May 2018
There is a time for everything, and a season for every activity under the heavens:
What an amazingly brilliant uplifting and fantastic weekend I've had.
I think all bases were covered as this extended family consists of a doctor, a vicar, more cooks than you could throw a wooden spoon at, a bbq "King", ( well, he thought he was) and a whole plethora of untold talent often in strange and wonderful guises.
The house that sleeps 16 with huge rooms, a very large hot tub, playgrounds, an orchard and a tennis court, covered all the bases and has ticked all the boxes for us all.
We had a superb day out at Clumber Park, most riding bikes and some walkers, I did manage an 8 mile bike ride, but unlike last year where racing on ahead with the kids was par for the course, this time I was very much the granny going very slowly at the back- still all things considered I was jolly pleased to be a part of it at all.
Most importantly for me it's been an invaluable chance to talk about all those things that on the whole most folks who know they have a limited time left on earth don't get an opportunity to discuss.
I've managed to annoy most of the family members with my coughing, but everyone has been far too polite to tell me to shut up! The kids have inquired after my welfare and I've had some really true heartfelt hugs.
The Thursday before I left to come to the UK I had an appointment at the opticians, to get my introduction to contact lens, and left the shop having been given a five day trial.
Saturday evening I toddled up to bed, and as the lens are 'dailys' I knew I had to remove them. This is an old house, the lighting is not very good and neither surprisingly is my eyesight . I tried removing the lens from the right eye, normally the easiest, but felt it had not worked and slipped sideways, never mind, deep breathing I'll do the left , it worked .
That's fine, just give yourself a few minutes I thought and I'll try again......and again..... And again... 1:30am and still no success.
By this time I am recalling the conversation that I had with Dan, mentioning his friend who spent hours doing something similar, and ended up at Accident and Emergency, to find out the lens was in fact out and he had ripped his eyeball to shreds...
I went to sleep with a throbbing eye, at least it took my mind off all the other physical discomforts I had, 5:30 am I thought I'd come downstairs and try again.
Fortunately after a few more failed attempts a very early morning consultation with Doctor Ruth who had come downstairs and was able to give me a free physical examination decided that there was no lens detected. We therefore concluded that it had unbeknown to me popped out of the eye the previous night.
No need for a trip to a hospital / opticians / supermarket or any other medical facility .
Safer to just stick to the glasses for the next few days I think while the eyeball recovers from the repeated abuse.
Today's plan? I'm hitching a lift with AB as far as Peterborough, and will hopefully rendezvous with Steve and Bex before trying to catch up with an old friend .
- Posted using BlogPress from my iPad
I think all bases were covered as this extended family consists of a doctor, a vicar, more cooks than you could throw a wooden spoon at, a bbq "King", ( well, he thought he was) and a whole plethora of untold talent often in strange and wonderful guises.
The house that sleeps 16 with huge rooms, a very large hot tub, playgrounds, an orchard and a tennis court, covered all the bases and has ticked all the boxes for us all.
We had a superb day out at Clumber Park, most riding bikes and some walkers, I did manage an 8 mile bike ride, but unlike last year where racing on ahead with the kids was par for the course, this time I was very much the granny going very slowly at the back- still all things considered I was jolly pleased to be a part of it at all.
Most importantly for me it's been an invaluable chance to talk about all those things that on the whole most folks who know they have a limited time left on earth don't get an opportunity to discuss.
I've managed to annoy most of the family members with my coughing, but everyone has been far too polite to tell me to shut up! The kids have inquired after my welfare and I've had some really true heartfelt hugs.
The Thursday before I left to come to the UK I had an appointment at the opticians, to get my introduction to contact lens, and left the shop having been given a five day trial.
Saturday evening I toddled up to bed, and as the lens are 'dailys' I knew I had to remove them. This is an old house, the lighting is not very good and neither surprisingly is my eyesight . I tried removing the lens from the right eye, normally the easiest, but felt it had not worked and slipped sideways, never mind, deep breathing I'll do the left , it worked .
That's fine, just give yourself a few minutes I thought and I'll try again......and again..... And again... 1:30am and still no success.
By this time I am recalling the conversation that I had with Dan, mentioning his friend who spent hours doing something similar, and ended up at Accident and Emergency, to find out the lens was in fact out and he had ripped his eyeball to shreds...
I went to sleep with a throbbing eye, at least it took my mind off all the other physical discomforts I had, 5:30 am I thought I'd come downstairs and try again.
Fortunately after a few more failed attempts a very early morning consultation with Doctor Ruth who had come downstairs and was able to give me a free physical examination decided that there was no lens detected. We therefore concluded that it had unbeknown to me popped out of the eye the previous night.
No need for a trip to a hospital / opticians / supermarket or any other medical facility .
Safer to just stick to the glasses for the next few days I think while the eyeball recovers from the repeated abuse.
Today's plan? I'm hitching a lift with AB as far as Peterborough, and will hopefully rendezvous with Steve and Bex before trying to catch up with an old friend .
- Posted using BlogPress from my iPad
Saturday 26 May 2018
This is Me
For anyone who has not seen The Greatest Showman, the above title means nothing, sorry about that!
I'm in England! There was discussion around the table tonight to find out exactly where I am in England, but it appears somewhere on the border between Yorkshire and Nottinghamshire , with a Sheffield postcode.
A small village called Oldcoates apparently, that is the beauty of being so well looked after, I just had to get myself on and off the plane and all the rest was taken care of.
I have to say , despite the coughing, ( makes laughing hard, ditto crying) and lack of oxygen it's fantastic to be here and I feel not only very lucky but also cocooned in a huge embrace of love.
Thursday at the hospital was a bit of a trial, but again, fortunately Sue was on hand ( literally ) to help out.
We arrived around 9:30am, and was seen by Dr KG and her friendly helpful doctor who was going to take an oxygen sample from my blood. Simple surely?
So the idea is that in order to get a true reading of the level of oxygen in the blood you need to take it straight out of the artery, I did briefly have a vision of the young doctor lunging at my neck with a large hypodermic needle, ridiculous .
I had already been on the stats machine and was coming out at 93/94% , that is quite good just above borderline, and so they needed a blood oxygen sample to match it.
The best place to obtain a sample is in the wrist, and so being right handed we began with the left wrist.The doctor knelt down at my feet and took my hand, my heart did flutter as no man has ever done that before , (no, not even my husband!) and I was briefly caught up in the moment, a split second later reality struck as he said those infamous four words ... " Just a little scratch".
Within a second I felt a searing pain deep in my hand and up my arm to the shoulder, it was excruciating , in fact although the poor doctor was saying " I'm sorry", and I wanted to reply, "it's fine" I actually couldn't speak. All the poor man could see was a river of tears flowing down my face.
Meanwhile Sue was making light conversation whilst I crushed her hands to the bone. After what seemed an eternity ( a minute?) I said through gritted teeth, " can you take it out?" To which they replied it's been out ages, the pain was still as intense. It seemed we'd hit a nerve.
Two paracetamol, and a little lie down was needed, ( that was me not the doctor) before the realisation dawned that we still needed the sample.
Onto the right wrist, same kneeling down stance , but this time I had my guard up, I wasn't going to be caught out a second time. Sue was in the ready position , and we began again. Far less painful ( for Sue anyway) and palatable relief for the doctor.
Off he went with a decent sample to test, a short time later he was back with a sad faced KG, apparently the sample reading was 78% , not corresponding with the original test. So the chances are that some blood was taken from a vein as well as an artery. Whilst veins do carry oxygen around the body it's a a diluted form compared to arteries .
I'm sorry if this is not totally accurate and true, it's just a lay mans understanding of how the body works, and explains why we just couldn't get a sample straight from Port. ( we asked ).
We still needed a sample.
They were going to try a third time in right wrist, and if it didn't work another young handsome doctor , was on hand ( whoops) to look at it with fresh eyes, and have a go... Is it me?
It didn't work, and neither did the fourth attempt with Dr Fresh Eyes, but I said he'd made Doctor Proposal feel a lot better about himself, and it wasn't just him.
By this stage I needed a coffee, as did Sue who also had to run around outside and move cars before we had tickets, that would have finished the morning off!
Remember that lovely respiratory consultant from last week ? She was also summoned and quietly sat beside me in the day room and said she could have a go if I was up to it , or we could take it from my ear capillary ( told you they wanted to stab my neck ) .
Boosted by the caffeine kick I said gamely , go for it in the wrist, positively blasé about the whole procedure by now.
Thirty seconds later, slightly painful, but completed sample, rushed off down to the Lab, and within five minutes had come back up as showing a reading of 94%.
I wouldn't be given oxygen at that level anyway, and the more we had talked about the logistics of travelling with it on planes plus up hills and down dales around the country, it would have been a bit of a logistical nightmare . I shall just have to manage, and hope the steroids do their bit to help.
The steroids do stop me from sleeping though, but making good use of time writing blogs...
Lastly, a very big thank you to JP for my bouquet of flowers , also the two J's of St Martin for theirs . As if she hasn't had enough going on deep in the radiotherapy suite of Southampton ( I do mean that literally) thank you to PE, for your flowers.
Finally, it was jolly nice to arrive home on Thursday and find a "get well balloon " and supper for 8 freshly delivered . Thank you CJ , and watch out now I'm on steroids .....
Shame I can't post photos , but don't worry I'm taking plenty !!!
KBO Xx
- Posted using BlogPress from my iPad
I'm in England! There was discussion around the table tonight to find out exactly where I am in England, but it appears somewhere on the border between Yorkshire and Nottinghamshire , with a Sheffield postcode.
A small village called Oldcoates apparently, that is the beauty of being so well looked after, I just had to get myself on and off the plane and all the rest was taken care of.
I have to say , despite the coughing, ( makes laughing hard, ditto crying) and lack of oxygen it's fantastic to be here and I feel not only very lucky but also cocooned in a huge embrace of love.
Thursday at the hospital was a bit of a trial, but again, fortunately Sue was on hand ( literally ) to help out.
We arrived around 9:30am, and was seen by Dr KG and her friendly helpful doctor who was going to take an oxygen sample from my blood. Simple surely?
So the idea is that in order to get a true reading of the level of oxygen in the blood you need to take it straight out of the artery, I did briefly have a vision of the young doctor lunging at my neck with a large hypodermic needle, ridiculous .
I had already been on the stats machine and was coming out at 93/94% , that is quite good just above borderline, and so they needed a blood oxygen sample to match it.
The best place to obtain a sample is in the wrist, and so being right handed we began with the left wrist.The doctor knelt down at my feet and took my hand, my heart did flutter as no man has ever done that before , (no, not even my husband!) and I was briefly caught up in the moment, a split second later reality struck as he said those infamous four words ... " Just a little scratch".
Within a second I felt a searing pain deep in my hand and up my arm to the shoulder, it was excruciating , in fact although the poor doctor was saying " I'm sorry", and I wanted to reply, "it's fine" I actually couldn't speak. All the poor man could see was a river of tears flowing down my face.
Meanwhile Sue was making light conversation whilst I crushed her hands to the bone. After what seemed an eternity ( a minute?) I said through gritted teeth, " can you take it out?" To which they replied it's been out ages, the pain was still as intense. It seemed we'd hit a nerve.
Two paracetamol, and a little lie down was needed, ( that was me not the doctor) before the realisation dawned that we still needed the sample.
Onto the right wrist, same kneeling down stance , but this time I had my guard up, I wasn't going to be caught out a second time. Sue was in the ready position , and we began again. Far less painful ( for Sue anyway) and palatable relief for the doctor.
Off he went with a decent sample to test, a short time later he was back with a sad faced KG, apparently the sample reading was 78% , not corresponding with the original test. So the chances are that some blood was taken from a vein as well as an artery. Whilst veins do carry oxygen around the body it's a a diluted form compared to arteries .
I'm sorry if this is not totally accurate and true, it's just a lay mans understanding of how the body works, and explains why we just couldn't get a sample straight from Port. ( we asked ).
We still needed a sample.
They were going to try a third time in right wrist, and if it didn't work another young handsome doctor , was on hand ( whoops) to look at it with fresh eyes, and have a go... Is it me?
It didn't work, and neither did the fourth attempt with Dr Fresh Eyes, but I said he'd made Doctor Proposal feel a lot better about himself, and it wasn't just him.
By this stage I needed a coffee, as did Sue who also had to run around outside and move cars before we had tickets, that would have finished the morning off!
Remember that lovely respiratory consultant from last week ? She was also summoned and quietly sat beside me in the day room and said she could have a go if I was up to it , or we could take it from my ear capillary ( told you they wanted to stab my neck ) .
Boosted by the caffeine kick I said gamely , go for it in the wrist, positively blasé about the whole procedure by now.
Thirty seconds later, slightly painful, but completed sample, rushed off down to the Lab, and within five minutes had come back up as showing a reading of 94%.
I wouldn't be given oxygen at that level anyway, and the more we had talked about the logistics of travelling with it on planes plus up hills and down dales around the country, it would have been a bit of a logistical nightmare . I shall just have to manage, and hope the steroids do their bit to help.
The steroids do stop me from sleeping though, but making good use of time writing blogs...
Lastly, a very big thank you to JP for my bouquet of flowers , also the two J's of St Martin for theirs . As if she hasn't had enough going on deep in the radiotherapy suite of Southampton ( I do mean that literally) thank you to PE, for your flowers.
Finally, it was jolly nice to arrive home on Thursday and find a "get well balloon " and supper for 8 freshly delivered . Thank you CJ , and watch out now I'm on steroids .....
Shame I can't post photos , but don't worry I'm taking plenty !!!
KBO Xx
- Posted using BlogPress from my iPad
Wednesday 23 May 2018
Doctor Who???
Doctor Who, as a child I loved it and hated it with equal measure, well not exactly hated it, but it scared the wits out of me.
I've been trying to find a youtube clip of the original series, in particular the theme tune and the Tardis spinning seemingly out of control.
A pretty good simile of how I'm feeling at the minute.
To continue from Monday evening, I stayed at the hospital on oxygen all night, and the next morning Dr KG came to see me before the MDT meeting. We chatted a bit, kind of prepared for bad news.
Dr NB came to see me post meeting, and explained as candidly as he could, that the team at the Marsden had viewed the scans and despite not having the full histology report said it was in fact cancer in the lung lining.
I also believe that in Ovarian cancer it often follows this path, ending up in the lungs. Not exactly lymph nodes but more of a tangle that leaks out cancerous fluid and is impairing my breathing.
They also said that i seemed to be platin (chemo drug) resistant, as i really only had a few weeks from stopping chemo before my CA125 was on the increase at a fairly rapid rate.
Posing more problems with me being BRCA2 and don't forget my bone marrow is suppressed, doesn't make for an easy care pathway. In their own words "I'm running out of options". I've been here before however last Summer, before they decided on weekly chemo of Cisplatin.
They have suggested I start weekly Taxol ( another chemo drug ) I have had it once before, It's a harsh drug, we will start small weekly doses first week of June. Lots of side effects, hair loss just being one of them, probably the least painful/debilitating one.
Ok.
So they left and then Steve came, I told him what they had said, and then we were allowed out of the hospital (good behavior) to grab a coffee in the park, in the sunshine.
Back in the hosptial and hooked up to the oxygen again, Dr KG came back in, and the first reports from histology were through , cancerous fluid in the lungs from pleural Effusions.
A pleural effusion is a buildup of extra fluid in the space between the lungs and the chest wall. ... Common causes of malignant pleural effusion are lymphoma and cancers of the breast, lung, and ovary. Although a malignant pleural effusion is treatable, it can be a serious, potentially life-threatening condition.
Lots of further discussions, treatment plans and how we are going to get me to the UK on Friday. I could do with oxygen at home (you need to be assessed before they will deliver to your home.)
I could do with oxygen on the flight in case i need it.
We left the hospital late afternoon after having picked up some low dosage steroid tablets, which I have started taking, this should help the inflammation. I'm also to carry on with the two lots of antibiotics.
Home, still coughing, maybe not so bad? Breathing , yes still breathing . Walked the girls slowly around the block with Steve, trying to get our heads around it all.
My goal posts have moved considerably closer, and fast. No netball...no tennis....no racquetball. Yoga? Pilates? probably can't at the minute, every organ in my body is having to work harder to compensate.
Things can't be good with me, if I've had to write four blogs in a week!
As I have not heard from the 'Oxygen" dept?? all day today, and am trying to contact flybe (very helpful lady) as you're supposed to apply to take it on flight 48 hours before, its been busy.
Tomorrow back to the hospital for an oxygen assessment ( why didn't they do it whilst I was there!), and fingers crossed all is well that I come home with oxygen.
Getting new oxygen from trees and plants??
I've been trying to find a youtube clip of the original series, in particular the theme tune and the Tardis spinning seemingly out of control.
A pretty good simile of how I'm feeling at the minute.
To continue from Monday evening, I stayed at the hospital on oxygen all night, and the next morning Dr KG came to see me before the MDT meeting. We chatted a bit, kind of prepared for bad news.
Dr NB came to see me post meeting, and explained as candidly as he could, that the team at the Marsden had viewed the scans and despite not having the full histology report said it was in fact cancer in the lung lining.
I also believe that in Ovarian cancer it often follows this path, ending up in the lungs. Not exactly lymph nodes but more of a tangle that leaks out cancerous fluid and is impairing my breathing.
They also said that i seemed to be platin (chemo drug) resistant, as i really only had a few weeks from stopping chemo before my CA125 was on the increase at a fairly rapid rate.
Posing more problems with me being BRCA2 and don't forget my bone marrow is suppressed, doesn't make for an easy care pathway. In their own words "I'm running out of options". I've been here before however last Summer, before they decided on weekly chemo of Cisplatin.
They have suggested I start weekly Taxol ( another chemo drug ) I have had it once before, It's a harsh drug, we will start small weekly doses first week of June. Lots of side effects, hair loss just being one of them, probably the least painful/debilitating one.
Ok.
So they left and then Steve came, I told him what they had said, and then we were allowed out of the hospital (good behavior) to grab a coffee in the park, in the sunshine.
Back in the hosptial and hooked up to the oxygen again, Dr KG came back in, and the first reports from histology were through , cancerous fluid in the lungs from pleural Effusions.
A pleural effusion is a buildup of extra fluid in the space between the lungs and the chest wall. ... Common causes of malignant pleural effusion are lymphoma and cancers of the breast, lung, and ovary. Although a malignant pleural effusion is treatable, it can be a serious, potentially life-threatening condition.
Lots of further discussions, treatment plans and how we are going to get me to the UK on Friday. I could do with oxygen at home (you need to be assessed before they will deliver to your home.)
I could do with oxygen on the flight in case i need it.
We left the hospital late afternoon after having picked up some low dosage steroid tablets, which I have started taking, this should help the inflammation. I'm also to carry on with the two lots of antibiotics.
Home, still coughing, maybe not so bad? Breathing , yes still breathing . Walked the girls slowly around the block with Steve, trying to get our heads around it all.
My goal posts have moved considerably closer, and fast. No netball...no tennis....no racquetball. Yoga? Pilates? probably can't at the minute, every organ in my body is having to work harder to compensate.
Things can't be good with me, if I've had to write four blogs in a week!
As I have not heard from the 'Oxygen" dept?? all day today, and am trying to contact flybe (very helpful lady) as you're supposed to apply to take it on flight 48 hours before, its been busy.
Tomorrow back to the hospital for an oxygen assessment ( why didn't they do it whilst I was there!), and fingers crossed all is well that I come home with oxygen.
Getting new oxygen from trees and plants??
Monday 21 May 2018
The Basenji dog - the only breed of dog that can't bark.
Deprived of oxygen my poor brain cells are finding it even harder to process information, especially as it's not the sort I want to hear.
As a further update to the last post, I really thought that by the weekend I would be feeling so much better, alas not to be.
On Saturday evening my daughter-in-law came across to take my stats, she was horrified to find my oxygen level so low, and the coughing spasms not brilliant ( actually they were spectacular, but for the wrong reason).
A phone call from my daughter to our friendly St Ouenais paramedic got all the family involved and I was manhandled into the car at 10:30pm on the way to A and E.
Service from the team at the hospital was outstanding, the triage nurse admitted me straight away, oxygen given, bloods taken, chest X-ray followed. Lovely doctor listened to my sorry tale, and said I need to be admitted. I gave her my best beatific smile said thank you very much for the kind offer of a bed, but I'd rather go home.
Further discussions and a game plan of different antibiotics that I should start taking straight away, and promises that I would be coming back into hospital today ..(Monday) .
I can't really describe how lousy I feel , partly antibiotics , partly ten days of coughing and exhaustion.
I have been pottering around, sleeping mostly , and doing odd jobs, trying to get better. This morning I sneaked out to walk the girls , ( I had to sneak, I was banned) when I say walk more of a very slow amble, but the sun was out and it was enjoyable .
Back home there were three way conversations between Dr KG, Jack and myself. Two against one. Steve came home and took me into hospital at lunchtime. Back on the stats machine.
Oxygen level way too low, CA125 way too high. Blood pressure up, everything working too hard. No histology results back as yet, so it's all speculation.
Cancer in the lungs? Maybe drain the lungs. Setting up the fact I may need oxygen at home.
Came to an agreement that I would come back into hospital this evening, go on oxygen tonight, be monitored . See Dr PS from respiratory tomorrow, if need to drain the lungs have it done straight away and stay in again tomorrow night.
Feels like I've been hit by a tsunami.... And then I came home and found two lovely bouquets and had loads of texts and messages ... Makes it a little better, although not really up to chatting or being "positive" about anything at the moment, but that will pass.
You just have to play the cards you're dealt.
Tomorrow morning Marsden have their MDT meeting about me, they have all current scans, tests etc. They probably won't have had histology results by then but may come up with a plan.
It's never good to write a post when you've had bad news, and I'm still trying to deal with it all.
Sorry if this is a bit negative , but I will tell you something that made me laugh, but shouldn't have done.
Sunday lunchtime Tom, Steve and I had just finished eating, and Steve said he'd take the dogs and go in the vegetable garden for a bit ( although we are trying to make it a flower garden - still no great success.... Certainly not Chelsea flower show!)
Anyway half an hour or so later, he reappears but staggering. Rushing to his aid ( no actually I didn't) I enquired what the matter was, slumping into the chair he told us.
He was coming back into the garden and had to pass through the granite archway, bear in mind we've been living here nearly ten years and still had the same arch way.
It seems as if he failed to duck sufficiently through the arch and cracked the top of his head, causing him to stumble backwards and end up flat on his back on the ground. Dazed he lay there for a few minutes ( dogs had already gone on ahead ) until he managed to get to his feet and come in the house.
Of course I was incredibly sympathetic and dressed his wound, double checking he wasn't concussed . No I didn't , Tom and I laughed our heads off, jolly pleased the neighbours hadn't witnessed his antics .
Of course one of my biggest concerns about sleeping tonight is when I have a coughing bout at home, I get my back rubbed until it eases off. It's best I don't talk or move much when lying down as its starts the coughing.
Two nights ago I started coughing , had the back rubs, stopped coughing. A short time later I started coughing again, the back rubs started up again, but by this time I had turned over............ And he hadn't noticed.........And I couldn't say "that is actually not my back" and equally so I couldn't laugh as the coughing spasms would have been far too violent .
It's good to see the funny side of things , even if they are at someone else's expense.
.
- Posted using BlogPress from my iPad
As a further update to the last post, I really thought that by the weekend I would be feeling so much better, alas not to be.
On Saturday evening my daughter-in-law came across to take my stats, she was horrified to find my oxygen level so low, and the coughing spasms not brilliant ( actually they were spectacular, but for the wrong reason).
A phone call from my daughter to our friendly St Ouenais paramedic got all the family involved and I was manhandled into the car at 10:30pm on the way to A and E.
Service from the team at the hospital was outstanding, the triage nurse admitted me straight away, oxygen given, bloods taken, chest X-ray followed. Lovely doctor listened to my sorry tale, and said I need to be admitted. I gave her my best beatific smile said thank you very much for the kind offer of a bed, but I'd rather go home.
Further discussions and a game plan of different antibiotics that I should start taking straight away, and promises that I would be coming back into hospital today ..(Monday) .
I can't really describe how lousy I feel , partly antibiotics , partly ten days of coughing and exhaustion.
I have been pottering around, sleeping mostly , and doing odd jobs, trying to get better. This morning I sneaked out to walk the girls , ( I had to sneak, I was banned) when I say walk more of a very slow amble, but the sun was out and it was enjoyable .
Back home there were three way conversations between Dr KG, Jack and myself. Two against one. Steve came home and took me into hospital at lunchtime. Back on the stats machine.
Oxygen level way too low, CA125 way too high. Blood pressure up, everything working too hard. No histology results back as yet, so it's all speculation.
Cancer in the lungs? Maybe drain the lungs. Setting up the fact I may need oxygen at home.
Came to an agreement that I would come back into hospital this evening, go on oxygen tonight, be monitored . See Dr PS from respiratory tomorrow, if need to drain the lungs have it done straight away and stay in again tomorrow night.
Feels like I've been hit by a tsunami.... And then I came home and found two lovely bouquets and had loads of texts and messages ... Makes it a little better, although not really up to chatting or being "positive" about anything at the moment, but that will pass.
You just have to play the cards you're dealt.
Tomorrow morning Marsden have their MDT meeting about me, they have all current scans, tests etc. They probably won't have had histology results by then but may come up with a plan.
It's never good to write a post when you've had bad news, and I'm still trying to deal with it all.
Sorry if this is a bit negative , but I will tell you something that made me laugh, but shouldn't have done.
Sunday lunchtime Tom, Steve and I had just finished eating, and Steve said he'd take the dogs and go in the vegetable garden for a bit ( although we are trying to make it a flower garden - still no great success.... Certainly not Chelsea flower show!)
Anyway half an hour or so later, he reappears but staggering. Rushing to his aid ( no actually I didn't) I enquired what the matter was, slumping into the chair he told us.
He was coming back into the garden and had to pass through the granite archway, bear in mind we've been living here nearly ten years and still had the same arch way.
It seems as if he failed to duck sufficiently through the arch and cracked the top of his head, causing him to stumble backwards and end up flat on his back on the ground. Dazed he lay there for a few minutes ( dogs had already gone on ahead ) until he managed to get to his feet and come in the house.
Of course I was incredibly sympathetic and dressed his wound, double checking he wasn't concussed . No I didn't , Tom and I laughed our heads off, jolly pleased the neighbours hadn't witnessed his antics .
Of course one of my biggest concerns about sleeping tonight is when I have a coughing bout at home, I get my back rubbed until it eases off. It's best I don't talk or move much when lying down as its starts the coughing.
Two nights ago I started coughing , had the back rubs, stopped coughing. A short time later I started coughing again, the back rubs started up again, but by this time I had turned over............ And he hadn't noticed.........And I couldn't say "that is actually not my back" and equally so I couldn't laugh as the coughing spasms would have been far too violent .
It's good to see the funny side of things , even if they are at someone else's expense.
.
- Posted using BlogPress from my iPad
Thursday 17 May 2018
6% of battery.....6% of energy
Apparently there's a Monty Pythons sketch that goes something like "I'm sick and tired of being sick and tired"
Had a ct scan yesterday morning, radiologists amusing and compassionate as always, and late yesterday my consultant called to say it looked more infection like than cancerous like, but needed to see respiratory consultant .
She must have chased up folk this morning, got me a "look see" with a lovely Dr PS from respiratory. Had an ultra sound, looked at CT, quick chat etc.
Decided that best thing would be to aspirate some fluid, ( more in one lung than the other) local anaesthetic and needle in the back. Bright yellow fluid... Hmm, not sure about that, no blood in it, a good sign hopefully.
That's been sent away to 'grow' and test etc, and I was given a prescription for some heavy duty never been heard of can make you feel sick don't go in sunlight, antibiotics .
DR KG called again this evening to check up on me, I'd come home and gone to sleep... That's about all I'm good for .... Sleeping , in between coughing bouts.
My daughter in law kindly tells me my oxygen level is very low that's why I'm having trouble thinking/speaking/breathing. I think she's being generous you'll find I'm normally like that ...
We now on wait and see if antibiotics start to make me feel better, and maybe the fluid sample will give a better indication of what infection it is, or worst case it's some kind of cancerous ascites type fluid - in which case ?
Don't ask me anymore questions I don't know anything anymore ...
All I do know is that I'm on a plane next Friday going to see my UK family.... Whatever :-)
2%
NEVER GIVE UP 😜
- Posted using BlogPress from my iPad
Had a ct scan yesterday morning, radiologists amusing and compassionate as always, and late yesterday my consultant called to say it looked more infection like than cancerous like, but needed to see respiratory consultant .
She must have chased up folk this morning, got me a "look see" with a lovely Dr PS from respiratory. Had an ultra sound, looked at CT, quick chat etc.
Decided that best thing would be to aspirate some fluid, ( more in one lung than the other) local anaesthetic and needle in the back. Bright yellow fluid... Hmm, not sure about that, no blood in it, a good sign hopefully.
That's been sent away to 'grow' and test etc, and I was given a prescription for some heavy duty never been heard of can make you feel sick don't go in sunlight, antibiotics .
DR KG called again this evening to check up on me, I'd come home and gone to sleep... That's about all I'm good for .... Sleeping , in between coughing bouts.
My daughter in law kindly tells me my oxygen level is very low that's why I'm having trouble thinking/speaking/breathing. I think she's being generous you'll find I'm normally like that ...
We now on wait and see if antibiotics start to make me feel better, and maybe the fluid sample will give a better indication of what infection it is, or worst case it's some kind of cancerous ascites type fluid - in which case ?
Don't ask me anymore questions I don't know anything anymore ...
All I do know is that I'm on a plane next Friday going to see my UK family.... Whatever :-)
2%
NEVER GIVE UP 😜
- Posted using BlogPress from my iPad
Monday 14 May 2018
Monday 14th.... short update
Adding on to the last posting, I visited the hospital today. I had a blood test booked at 12:30, that went fine as they took it from my arm instead of the cathaport!
It's quite quiet on a Monday, not many folks having chemo etc , but there is clinic in the afternoon. I said I'd wait for the results as I had been feeling so rubbish, I was intrigued to see what the bloods showed up, and also try and catch Dr NB.
I am away next Friday (whoop) catching up with siblings and family in the UK, and although I have a clinic appointment booked for next thursday, I don't want to be away feeling this ill.
Luckily for me Steve had a break from meetings, so I went to the hospital cafe and grabbed a sandwich with him, and then had a call to go back to Oncology.
Dr NB was between patients and kindly squeezed us in.... the good news is that my bloods are all really good (well for me anyway), but that really didn't explain why I was feeling so terrible.
I don't know why I was that surprised, this is a girl who goes in with a neutropenic reading and feels absolutely fine, so looking at a reasonable set of bloods but feeling poorly, would probably be my 'normal'.
Fortunately my consultant and i have built up a bit of a relationship, and he did say "I hear what you're saying", the constant nagging backache could be a trapped nerve, or it could be a tumour from the abdomen. He had a listen to my chest, and asked about the cough and then rang the x ray department and booked in a chest x-ray. We went down and the lovely radiologists whisked me in almost straight away.
Back up to Oncology and a bit more waiting, and then a viewing of last November's x ray and todays, as Dr NB said, "I'm not really very happy with it". We all studied it with our 'grave and serious' faces on, (us pretending to know what we were really looking at .... it's been a little while since looking at those grainy grey negative printouts from the baby scans. At least you could usually make out a head, and possibly some stubby arms, this however was a different kettle of fish) the Doctor talking us through.
He was very complimentary about my large.....lungs, and my neat, long, clearly visible set of ribs, but (there's always a but) there are some discrepancies , sort of cloudy spidery webs on both lungs, that weren't there in November. And some sort of wiggly bit (!) at the bottom of one lung.
The outcome? We can't really be sure, so he has already asked for a CT scan this week, despite it only being 8 weeks since the last one, which will be far more detailed. It could be 101 things, so many different types of infections, or it could be disease. We have decided to hold back on the antibiotics, as we are unsure of what it actually is, a wise decision .
Another wise decision is me not going to play badminton tonight... this also means that I won't be going to the netball tournament tomorrow night. Not that I asked the doctor of course, I just haven't got the energy or cardio to play either.
Least I've been able to walk the dogs albeit slowly, thats me slowly not them obviously, and have a half hearted attempt at aqua aerobics today.
Dan cooked supper tonight, and I've lay on the sofa, coughed and had hot drinks brought to me.....
Lettuce and geraniums..... perfect companion planting!
It's quite quiet on a Monday, not many folks having chemo etc , but there is clinic in the afternoon. I said I'd wait for the results as I had been feeling so rubbish, I was intrigued to see what the bloods showed up, and also try and catch Dr NB.
I am away next Friday (whoop) catching up with siblings and family in the UK, and although I have a clinic appointment booked for next thursday, I don't want to be away feeling this ill.
Luckily for me Steve had a break from meetings, so I went to the hospital cafe and grabbed a sandwich with him, and then had a call to go back to Oncology.
Dr NB was between patients and kindly squeezed us in.... the good news is that my bloods are all really good (well for me anyway), but that really didn't explain why I was feeling so terrible.
I don't know why I was that surprised, this is a girl who goes in with a neutropenic reading and feels absolutely fine, so looking at a reasonable set of bloods but feeling poorly, would probably be my 'normal'.
Fortunately my consultant and i have built up a bit of a relationship, and he did say "I hear what you're saying", the constant nagging backache could be a trapped nerve, or it could be a tumour from the abdomen. He had a listen to my chest, and asked about the cough and then rang the x ray department and booked in a chest x-ray. We went down and the lovely radiologists whisked me in almost straight away.
Back up to Oncology and a bit more waiting, and then a viewing of last November's x ray and todays, as Dr NB said, "I'm not really very happy with it". We all studied it with our 'grave and serious' faces on, (us pretending to know what we were really looking at .... it's been a little while since looking at those grainy grey negative printouts from the baby scans. At least you could usually make out a head, and possibly some stubby arms, this however was a different kettle of fish) the Doctor talking us through.
He was very complimentary about my large.....lungs, and my neat, long, clearly visible set of ribs, but (there's always a but) there are some discrepancies , sort of cloudy spidery webs on both lungs, that weren't there in November. And some sort of wiggly bit (!) at the bottom of one lung.
The outcome? We can't really be sure, so he has already asked for a CT scan this week, despite it only being 8 weeks since the last one, which will be far more detailed. It could be 101 things, so many different types of infections, or it could be disease. We have decided to hold back on the antibiotics, as we are unsure of what it actually is, a wise decision .
Another wise decision is me not going to play badminton tonight... this also means that I won't be going to the netball tournament tomorrow night. Not that I asked the doctor of course, I just haven't got the energy or cardio to play either.
Least I've been able to walk the dogs albeit slowly, thats me slowly not them obviously, and have a half hearted attempt at aqua aerobics today.
Dan cooked supper tonight, and I've lay on the sofa, coughed and had hot drinks brought to me.....
Lettuce and geraniums..... perfect companion planting!
Saturday 12 May 2018
Pot Pourri Fortnight.
Bank holidays, birthdays, a christening and celebratory Liberation day, it's all been happening over the last two weeks. Weather was amazing for a few days, lifted everyone's spirits, the sea looked so tempting and beautifully calm, I very nearly went for a swim (I know a few friends have already been swimming), that was until I paddled!
Wedding we 'gatecrashed'.....
"Pie man" will always be 'vertically challenged'
Christening!!
In between all this socialising, we have been gardening, hoping to turn our vegetable garden into a flower strewn one... ready for the 'wedding' in July. We are trying to grow as many wildflowers as we can to decorate the marquee.We did plant lots of seeds and 'carpets' of wild flowers about a month ago.
I started quite a lot of seedlings off in the greenhouse (it's only small) but planted out as much as I could. Last week we hardened the ones off outside and that had germinated, and sewed them in the raised beds.. some forget-me-nots I put alongside the geraniums in our planters.
A few days later whilst I was outside pottering, I took a closer look at the growing 'flowers', now bear in mind two things, firstly last week I also went to the opticians, and I am going for a contact lens introduction, and secondly some of the seeds and labels got mixed up.
So scattered in amongst the pansies and petunias we have clumps of mixed lettuce leaves growing very nicely. When I confirmed my suspicions to hubby, he said he thought they looked a little odd, but just thought I must know what I was doing... Oh dear, I've seriously gone down in his estimations!
Moving swiftly on, back to health, or actually the lack of it. Two weeks ago I felt fine, but my back was sore. Thought it was a trapped nerve, maybe twisting in yoga or pilates ( dangerous activity yoga) , I had acupuncture , that's good for lots of reasons, so I've been told... the goal of acupuncture is to promote and restore the balance of energy, which flows throughout the body, the benefits of acupuncture can extend to a wide variety of conditions, from emotional disorders (anxiety, depression) to digestive complaints (nausea, vomiting, irritable bowel syndrome).
I still have the discomfort, and now its down my leg and my suspicions are aroused. Simultaneously a dry little cough , mostly in the mornings, but periodically during the day has appeared and to top it all , I'm really, really tired!! Like everything is effort, and my mood is so low. I hate it! Ask Steve, I'm a terrible patient, so frustrating to feel so rubbish.
Then I see the poppies have come out in the garden, (definitely poppies!) and my dogs are loving the warmer weather and lighter evenings. The family and friends are brilliant as always, I celebrated my daughter's 24th birthday, plus I've got a friend undergoing very difficult treatment in Southampton.....and I count my blessings.
Oh, and I thought to cheer myself up we'd get a new puppy..... meet Max.....
Isn't he lovely, and he comes back when you call.....
Unlike Miss Beanie.....
Ps just joking.... we are helping Jack 'dog sit' for the weekend.... , but i may not give him back!!
"Pie man" will always be 'vertically challenged'
Birthday Lunch !
Liberation Day
I started quite a lot of seedlings off in the greenhouse (it's only small) but planted out as much as I could. Last week we hardened the ones off outside and that had germinated, and sewed them in the raised beds.. some forget-me-nots I put alongside the geraniums in our planters.
A few days later whilst I was outside pottering, I took a closer look at the growing 'flowers', now bear in mind two things, firstly last week I also went to the opticians, and I am going for a contact lens introduction, and secondly some of the seeds and labels got mixed up.
So scattered in amongst the pansies and petunias we have clumps of mixed lettuce leaves growing very nicely. When I confirmed my suspicions to hubby, he said he thought they looked a little odd, but just thought I must know what I was doing... Oh dear, I've seriously gone down in his estimations!
Moving swiftly on, back to health, or actually the lack of it. Two weeks ago I felt fine, but my back was sore. Thought it was a trapped nerve, maybe twisting in yoga or pilates ( dangerous activity yoga) , I had acupuncture , that's good for lots of reasons, so I've been told... the goal of acupuncture is to promote and restore the balance of energy, which flows throughout the body, the benefits of acupuncture can extend to a wide variety of conditions, from emotional disorders (anxiety, depression) to digestive complaints (nausea, vomiting, irritable bowel syndrome).
I still have the discomfort, and now its down my leg and my suspicions are aroused. Simultaneously a dry little cough , mostly in the mornings, but periodically during the day has appeared and to top it all , I'm really, really tired!! Like everything is effort, and my mood is so low. I hate it! Ask Steve, I'm a terrible patient, so frustrating to feel so rubbish.
Then I see the poppies have come out in the garden, (definitely poppies!) and my dogs are loving the warmer weather and lighter evenings. The family and friends are brilliant as always, I celebrated my daughter's 24th birthday, plus I've got a friend undergoing very difficult treatment in Southampton.....and I count my blessings.
Oh, and I thought to cheer myself up we'd get a new puppy..... meet Max.....
Ps just joking.... we are helping Jack 'dog sit' for the weekend.... , but i may not give him back!!
Thursday 3 May 2018
May 3rd 2018
Firstly let me start this post by thanking everyone who had wished the girls luck in their recent Marathon run, and very kindly donated to their causes. Money is still coming in and I think the total for Baz stands at £3,584.75 and for Steph £4,204.17. Amazing that they raised that amount, and even more incredible is that they not only ran the marathon in sizzlingly heat they FINISHED the race.
Well done girls total respect.
I have been filling in a form this week to apply to 'model' clothes at an Ovacome tea party in London next March. I probably wont get past the first lot of applicants, and it maybe a little ambitious for me health wise, but I thought "nothing ventured, nothing gained".
What it has made me do is go through my whole sorry cancer saga, and I did most of the form filling in whilst sitting in hospital supporting Bex through her recent endoscopy she had this week. Suffice to say that all it did was made me realise how much treatment I have had, and how it has ruled my life to such a degree over the last six years.
Bex is doing ok, she has been having her own troubles to deal with, and between us we have our own demons to face, but thankfully Bex is taking more 'ownership' of her life, and is less anxious than she used to be, all in all its mostly positive, but not without a fair amount of hard work on both sides.
I had bloods taken this week, and had the results today, it seems as though they are all picking up from the chemo knock back and heading in the right direction, I didn't ask about the CA 125, I expect its also on the increase, but I can't do much about that, and "worry will not influence outcome", so best ignore that for couple of weeks before the next test.
Its not been quite four weddings and a funeral, but we have had plenty of birthdays, one wedding, a christening coming up this weekend, and sadly a few funerals.
Last Saturday we took Papa to F.Foots to see if his warranty on his radiogram was still valid after seventy odd years......
Apparently it still works, but I've never heard it!! A family Heirloom...
We celebrated the fact that St Lawrence Netball club has been running for fifty years, obviously we needed a big party!!
A surprise visitor from the UK, we loved seeing you Rosie!
Not to be outdone Super Gill ( dont ask) has to make a speech too.....
Thought you may like to see an extract from the Ovacome form.....
I first visited the doctor in December 2011, I had been experiencing a change in my bowel habits and had a bloated stomach. An ultra scan on January 31st 2012 was quickly followed by a consultant follow up a week later. I was told the news that no one wants to hear. I had a 13cm large tumour on my left ovary. Although at this time they couldn't definitely say that it was cancer it was implied. I just wanted to run away. An operation at the Marsden in March involved 'full debaulking' etc and I was given results of being a stage 3c. It was at this time I began writing a blog, jillyluce@blogspot.com entitled "One day at a time " . I found it was the best way to get news updates to my friends and family whilst writing it down helped me process and deal with what was happening in my topsy turvy world. I began 6 cycles of carb platinum and taxol. In theory I should have been finished by August, but after cycle 4 ( dose every three weeks) , my blood cells refused to pick up. This did not correlate with how I was feeling. I often breezed into oncology after playing tennis ( fortunately I could have my chemo in Jersey) to be told that my blood results showed me bordering neutropenic. Finally after stopping the taxol bit and drip feeding the carbo through the Autumn I finished chemo in December. 2013 was a good year, hair grew back, energy returned etc. January 2014 saw the CA 125 starting to rise again, as the year progressed it continued its upward trend, and a scan showed more tumours had appeared in my abdomen on my paraaortic vein quite close to my left kidney. More discussions followed between the Marsden and Jersey before it was decided that it would be worth attempting a second operation to remove them . Two consultants were assigned the task and I was booked in to the Marsden August 2014. Flights and accommodation sorted, had pre checks and at the eleventh hour it was discovered that my white cells and neutrophils were far too low to recover from any surgery! Back in jersey and more waiting, until finally had the operation in September . It was partially successful. I didn't bounce back from this operation as I had previously , and to add to my misery I was full of lymphatic fluid. It was so bad that upon arrival in Jersey I ended up in Hospital . I couldn't eat, sleep or even walk very well- at one point they were going to operate as they thought I had a bowel obstruction. It turned out I was so chock a block full of ascites, that all my internal organs were squashed! My lovely consultant finally stuck a drain in my swollen abdomen and relief was sweet, I could actually sit down properly! I did however end up in an air ambulance heading back to the Marsden for observation for a week. On top of this the oncology department were desperate to start chemo , which finally started 6 weeks post op. Despite my Jersey oncologists reservations it was decided to give me 100% carbo, predictably it took my body weeks to recover ! I limped through the cycles of carbo ( reduced dose, roughly 3/4/5 weeks apart) aided and abetted by injections of GCS-F to boost my white cells. Oh, and a few blood transfusions to boot. Finished treatments finally in May, and got back to walking the springers and playing all my sports, badminton and tennis were manageable during chemo ( yoga and Pilates very beneficial to recovery from the op) but the higher aerobic ones like Zumba, racquetball and particularly netball were much harder to participate in. I had a huge amount of help from lovely friends who in order for me to enjoy doing the things I love, cooked homemade meals for the family, did my ironing, shopping, housework etc. Bless them all. My Ca125 continued to stay low until January 2016 when once again those numbers were on the incline. A further CT scan showed that the area in my abdomen that had been operated on, was again active. Lots more weeks of discussions and waiting. Radiotherapy was the answer, so scans appointments flights and meetings until September 2016 I began radiation at the Marsden. Accommodation was 7 minutes away from the hospital and Jersey Cancer Relief helped with expenses. Family and friends stayed with me over the five week course, and I made the most of being in the city. We saw shows, ate out, and generally made the most of it. My side effects were minimal and the staff at the hospital were sympathetic , professional and shared my sense of humour! We began the new year in good spirits but a routine blood test in January ( what is it about January's?) showed the marker was still on the increase . It was subsequently discovered I had a large tumour in my neck ! The usual MDT meetings etc resulted in being booked in for further radiotherapy back at the Marsden ! It's fair to say the staff were surprised to see me back so soon ! 4 weeks of treatment , and more credit card spending followed with a trip to Guys hospital in the mix. I was being tested for any genetic mutations, and what do you know, I carry the BRCA2 gene. Siblings informed and of course our four children. Finished radiotherapy in June 2017, and felt OK. November 2017 there was no let up with that inflammation marker, something was amiss. A comprehensive scan showed multiple tumours in my abdomen, chest cavity and groin. Now we had a slight problem. It was discovered during the second round of chemo that I was officially suffering from myelodysplasia (MDS), so having chemo would prove difficult, but it was my only option . December 2017 I had a port fitted and started a baby dose of weekly chemo, cisplatin. Couple of breaks Christmas week and one in January and officially stopped in March as my bone marrow was struggling to produce any half decent blood cells. A transfusion in February helped the Haemoglobin , and did wonders for my energy levels. So here we are in April 2018. My bloods are recovering , but my Ca125 is busy again......
Well done girls total respect.
I have been filling in a form this week to apply to 'model' clothes at an Ovacome tea party in London next March. I probably wont get past the first lot of applicants, and it maybe a little ambitious for me health wise, but I thought "nothing ventured, nothing gained".
What it has made me do is go through my whole sorry cancer saga, and I did most of the form filling in whilst sitting in hospital supporting Bex through her recent endoscopy she had this week. Suffice to say that all it did was made me realise how much treatment I have had, and how it has ruled my life to such a degree over the last six years.
Bex is doing ok, she has been having her own troubles to deal with, and between us we have our own demons to face, but thankfully Bex is taking more 'ownership' of her life, and is less anxious than she used to be, all in all its mostly positive, but not without a fair amount of hard work on both sides.
I had bloods taken this week, and had the results today, it seems as though they are all picking up from the chemo knock back and heading in the right direction, I didn't ask about the CA 125, I expect its also on the increase, but I can't do much about that, and "worry will not influence outcome", so best ignore that for couple of weeks before the next test.
Its not been quite four weddings and a funeral, but we have had plenty of birthdays, one wedding, a christening coming up this weekend, and sadly a few funerals.
Last Saturday we took Papa to F.Foots to see if his warranty on his radiogram was still valid after seventy odd years......
We celebrated the fact that St Lawrence Netball club has been running for fifty years, obviously we needed a big party!!
Our Umpire.... just retired after 20 years!
That pretty much sums up the night!!
Please dont feel you have to read any further, but....
1.
Please tell us as much as you
can about your experience of ovarian cancer including your diagnosis, treatment
and timings.
I first visited the doctor in December 2011, I had been experiencing a change in my bowel habits and had a bloated stomach. An ultra scan on January 31st 2012 was quickly followed by a consultant follow up a week later. I was told the news that no one wants to hear. I had a 13cm large tumour on my left ovary. Although at this time they couldn't definitely say that it was cancer it was implied. I just wanted to run away. An operation at the Marsden in March involved 'full debaulking' etc and I was given results of being a stage 3c. It was at this time I began writing a blog, jillyluce@blogspot.com entitled "One day at a time " . I found it was the best way to get news updates to my friends and family whilst writing it down helped me process and deal with what was happening in my topsy turvy world. I began 6 cycles of carb platinum and taxol. In theory I should have been finished by August, but after cycle 4 ( dose every three weeks) , my blood cells refused to pick up. This did not correlate with how I was feeling. I often breezed into oncology after playing tennis ( fortunately I could have my chemo in Jersey) to be told that my blood results showed me bordering neutropenic. Finally after stopping the taxol bit and drip feeding the carbo through the Autumn I finished chemo in December. 2013 was a good year, hair grew back, energy returned etc. January 2014 saw the CA 125 starting to rise again, as the year progressed it continued its upward trend, and a scan showed more tumours had appeared in my abdomen on my paraaortic vein quite close to my left kidney. More discussions followed between the Marsden and Jersey before it was decided that it would be worth attempting a second operation to remove them . Two consultants were assigned the task and I was booked in to the Marsden August 2014. Flights and accommodation sorted, had pre checks and at the eleventh hour it was discovered that my white cells and neutrophils were far too low to recover from any surgery! Back in jersey and more waiting, until finally had the operation in September . It was partially successful. I didn't bounce back from this operation as I had previously , and to add to my misery I was full of lymphatic fluid. It was so bad that upon arrival in Jersey I ended up in Hospital . I couldn't eat, sleep or even walk very well- at one point they were going to operate as they thought I had a bowel obstruction. It turned out I was so chock a block full of ascites, that all my internal organs were squashed! My lovely consultant finally stuck a drain in my swollen abdomen and relief was sweet, I could actually sit down properly! I did however end up in an air ambulance heading back to the Marsden for observation for a week. On top of this the oncology department were desperate to start chemo , which finally started 6 weeks post op. Despite my Jersey oncologists reservations it was decided to give me 100% carbo, predictably it took my body weeks to recover ! I limped through the cycles of carbo ( reduced dose, roughly 3/4/5 weeks apart) aided and abetted by injections of GCS-F to boost my white cells. Oh, and a few blood transfusions to boot. Finished treatments finally in May, and got back to walking the springers and playing all my sports, badminton and tennis were manageable during chemo ( yoga and Pilates very beneficial to recovery from the op) but the higher aerobic ones like Zumba, racquetball and particularly netball were much harder to participate in. I had a huge amount of help from lovely friends who in order for me to enjoy doing the things I love, cooked homemade meals for the family, did my ironing, shopping, housework etc. Bless them all. My Ca125 continued to stay low until January 2016 when once again those numbers were on the incline. A further CT scan showed that the area in my abdomen that had been operated on, was again active. Lots more weeks of discussions and waiting. Radiotherapy was the answer, so scans appointments flights and meetings until September 2016 I began radiation at the Marsden. Accommodation was 7 minutes away from the hospital and Jersey Cancer Relief helped with expenses. Family and friends stayed with me over the five week course, and I made the most of being in the city. We saw shows, ate out, and generally made the most of it. My side effects were minimal and the staff at the hospital were sympathetic , professional and shared my sense of humour! We began the new year in good spirits but a routine blood test in January ( what is it about January's?) showed the marker was still on the increase . It was subsequently discovered I had a large tumour in my neck ! The usual MDT meetings etc resulted in being booked in for further radiotherapy back at the Marsden ! It's fair to say the staff were surprised to see me back so soon ! 4 weeks of treatment , and more credit card spending followed with a trip to Guys hospital in the mix. I was being tested for any genetic mutations, and what do you know, I carry the BRCA2 gene. Siblings informed and of course our four children. Finished radiotherapy in June 2017, and felt OK. November 2017 there was no let up with that inflammation marker, something was amiss. A comprehensive scan showed multiple tumours in my abdomen, chest cavity and groin. Now we had a slight problem. It was discovered during the second round of chemo that I was officially suffering from myelodysplasia (MDS), so having chemo would prove difficult, but it was my only option . December 2017 I had a port fitted and started a baby dose of weekly chemo, cisplatin. Couple of breaks Christmas week and one in January and officially stopped in March as my bone marrow was struggling to produce any half decent blood cells. A transfusion in February helped the Haemoglobin , and did wonders for my energy levels. So here we are in April 2018. My bloods are recovering , but my Ca125 is busy again......
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