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kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Mon Jul 13, 2015 7:14 pm

Well, I said we were having a good week didn't I. Wrong!!!! As soon as Roger stopped the anti sickness medication, back came the sickness and any weight he had put on he has now lost. Just when we thought things were getting better too. We see the oncologist on Thursday so hopefully she will adjust his medication and he can carry on with the chemo. Sometimes I just think we're fighting a losing battle!

Sue

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Roger's Story

Postby Didge » Mon Jul 13, 2015 8:21 pm

Does he have to stop the anti sickness meds? Hope you get it sorted soon x

sheena
Posts: 173
Joined: Sat Jun 13, 2015 8:42 pm

Re: Roger's Story

Postby sheena » Mon Jul 13, 2015 8:56 pm

Poor Roger and poor you hope all ok today good luck with the oncologist lets hope he can wave a magic wand thinking of you x

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: Roger's Story

Postby knutsford4 » Wed Jul 15, 2015 2:50 am

Stay strong kittycat, you are not alone, I pray your Roger feels better soon, it's true that life is truly a rollercoaster when dealing with this hateful decease x

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Mon Jul 20, 2015 2:12 am

Thank you for all your words of support at this dreadful time. Roger hasn't had too bad a week once he re started the anti sickness meds but then he had dreadful diarrhoea! It seems like it's one thing after another! The oncologist was quite pleased with him and although he has lost a couple of pounds she was happy for him to have the next cycle of chemo today. Unfortunately one of his blood tests isn't right so they'll take it again today and hopefully things can continue as planned. He's had a lovely weekend with few side effects and it seems as if we're now paying for it with his bloods. I try to stay strong but it is so hard! I don't sleep well anymore but won't go to the doctors and just try to do what I can for Roger. Surely it must get better soon.

Sue

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sun Jul 26, 2015 8:44 am

Roger's chemo went ahead as planned and the sickness seems to be under control this time and also his blood sugars when he is on steroids - they were through the roof a couple of months ago but with trial and error we've managed to sort things out. The big problem this time is fatigue - since Wednesday things have been pretty bad - he has a couple of naps during the day and is pretty washed out for the rest of the time. Every day we say it will improve soon and we just hope that it does but I just wondered if it was normal of side effects to be different on each cycle of chemo. I thought that we would get into some sort of routine but this hasn't happened yet and I'm concerned that he won't be well enough for Nanoknife in a couple of weeks. His appetite has always been good but he is off is food at the moment which isn't helping his weight problem and I wondered if anyone had any ideas about if things might improve soon.

Sue

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Tue Jul 28, 2015 8:35 am

Had the most awful day yesterday. Roger was asleep for quite a lot of it and felt pretty dreadful for the rest of the day. He says himself that he can't go on like this but he's just trying to get through the next chemo and then nanoknife but he just feels awful and everyday I think tomorrow will be better and it doesn't seem to be. I just hope that things will change soon because I'm at my wits end and don't know how to help him. Sorry but I just don't know who else to tell.

Sue

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Roger's Story

Postby Didge » Tue Jul 28, 2015 8:53 am

Sue, in my experience there seems to be no pattern. Good days are followed by bad days and vice versa. Folfirinox is known to cause fatigue and weight loss is linked not only to the disease but also the lack of appetite and sometimes absorption problems too (hence the creons which help a lot of people). I am afraid it is impossible to predict when things will improve. All you can do is keep trundling on one day at a time. Xx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Roger's Story

Postby sandraW » Tue Jul 28, 2015 4:08 pm

Hi Sue,
Folfirinox, is a very strong treatment and does cause fatigue, its so difficult,Trevor was very lucky that he felt so well but for 3 days he was always very very tired infact on day 7 he literally slept got up slept had breakfast, slept had lunch slept had tea slept, then about 8 pm he might manage an hour's tv then it was back to bed and a full night's sleep, but he did usually start to feel better by day 8 or 9.
Just keep doing what you are doing,I know how frustrating it is, but just keep plodding on, take care love sandrax xx

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sat Aug 01, 2015 7:53 pm

Hi Sandra, Roger started to feel better yesterday and is still very tired but less so as the days go on. We had some good news on Thursday when we were told that his ca19.9 had gone from 3300 to 2100 and I know that doesn't mean a massive amount, but it did raise our spirits after a difficult week. He has chemo on Monday and we're just hoping that he will react better this time so that he is ok for nanoknife the following week. Hope you are bearing up ok and that you will be able to enjoy your holiday.

Sue

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Fri Aug 14, 2015 5:04 pm

Just thought I'd update on Rogers over the last week or so. He's suffered so badly with fatigue since his last chemo that he has been given a week off to try to get over it before the next cycle. Diarrhoea has been a bit of an issue too and that hasn't helped his weight problem either but I'm hoping that this next week things will improve and he will be able to eat better. We did manage to get to London for nanoknife (just, as he was so tired), and that went well. The scan by Prof **** showed no increase in size and no spread so that was really good news and hopefully nanoknife, will make the chemo more effective. Roger still has to have a scan here this week as the oncologist wanted one done on the same machine reviewed by the same radiographer so hopefully that will just reconfirm things. Roger is still tired but better than he was so we're just hoping for an improvement this week before his next chemo which will be modified to try to reduce the side effects. Fingers crossed.

Sue

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Roger's Story

Postby WilliamS » Fri Aug 14, 2015 6:14 pm

Good news that Roger was able to have nanoknife. I hope he gets good results from that and that his fatigue lessens. Best wishes.

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Sun Aug 23, 2015 4:50 pm

Well, we're not having a very good time at the moment. Roger had to stop the antibiotics after Nanoknife because of terrible diarrhea and subsequently developed a chest infection. He was admitted to hospital and because the oncology wards were full he was put in a ward the other side of the hospital. He had terrible vomiting and pain and it took 3 hours and 4 times of asking for some relief, only for the tablets to come back up because the nausea had got so bad. It was a nightmare. His picc line needed dressing and I had to collect a dressing from the unit on the other side of the hospital and sit on the side of the bed and show two nurses what needed to be done and then they couldn't flush it and I had to wheel him to the other side of the hospital to get it flushed. They were going to keep him in over the weekend and because he was in the wrong ward no doctor came to see him and it was only once I'd complained that things got moving to get him home (thank goodness). They then gave us the discharge letter and we read that his tumour had grown since the last scan in June (although the one done at ******** ***** said it was unchanged). We are now waiting for an appointment or notification of next steps from the hospital. We are at our wits end. Will they stop the chemo because it doesn't appear to be working. Will there be other chemo's offered as he really needs something to help the Nanoknife to do its work. I just don't know where to turn. Sorry to be all doom and gloom but that's all it seems to be at the moment.

Sue

Fifi

Re: Roger's Story

Postby Fifi » Sun Aug 23, 2015 5:56 pm

Hi Sue,

What a horrible week you have both had. I hope so much that Roger's state of mind is reasonable and that he isn't too down.

Can you learn how to flush the PICC line? It is easy to do and it beats the idiots that can't do it. I flushed Dad's and was happy to do it. It made Dad more comfortable, and that was what was more important. Most nurses can't do it and it only uoset Dad. Once, someone went round and she was scared to flush it, and spilt it everywhere, and then put the plaster on upside down and it stuck to her hands. Dad was so anxious afterwards, which doesn't help with his diarrhoea.
It angers me the poor care you and Roger recieved, it is terrible that they would treat him like this.
As for the chemo, I would say that they will wait until he is fit enough, get the diarrhoea at least managable, the diarrhoea will dehydrate him and drain him so much. and it will start again. When you say it has grown, by how much?
How is Roger's appetite?

Leila xxx

kittycat
Posts: 126
Joined: Tue Mar 31, 2015 6:37 am

Re: Roger's Story

Postby kittycat » Mon Aug 24, 2015 6:39 am

Hi leila, Roger is in really good spirits now he's home and still optimistic. The diarrhoea is controlled and he's eating well again, so all good there. I did ask if I could be instructed on flushing the picc but they said no, the district nurse could do it if I want but we're trying to keep her at arms length for as long as we can. His tumour seems to have grown by 3mm in width which doesn't seem much but it's growth and that causes us much worry. I'm going to ring the oncologist today to see if we can get an early appointment and look at the way forward. What a nightmare. I know there are lots of others out there is a similar position and don't know hope you cope. Everyone thinks I'm a strong woman but they don't know that I'm a wreck underneath!

Sue