Roger's Story

[Didge]

Sue, you poor thing. My fella found that enemas were the only thing which worked on constipation! I do hope things become easier for you both soon. xx

[kittycat]

Roger had his 4th round of chemo yesterday and has been OK really. He's only been sick once but has spent pretty well most of the day in bed, but I'm sure things will improve in a few days. As long as the sickness is controlled I think Roger can deal with it, and he is eating OK, a bit less today but generally he has a good appetite. It was good news to learn that although Roger's tumour has grown slightly, is still suitable for Nanoknife and we've rescheduled for next month so fingers crossed everything goes smoothly in the next few weeks.

I feel more in control now and am managing to take one day at a time - I don't make any plans and just enjoy every day that we have together whatever we do. This dreadful disease really does make you appreciate the little things in life and count your blessings.

Sue

[Sueoliver]

Hi Sue I am glad Roger is tolerating the chemo and a rescheduled appointment for nanoknife is something positive to focus on. You certainly sound as if you are more in control and dealing with this awful disease. It is hard as you never know what it is going to throw at you.

Stay strong for Roger you are doing an amazing job.

Sue x

[kittycat]

Chemo has just been so much better this week with practically no sickness and after being in bed practically all Tuesday he hasn't7 needed a nap all week so we both feel much happier about things in that respect. On the down side our beautiful cat of 20 years had to be put to sleep yesterday, my mum was taken into hospital and Roger was accidentally knocked over by two small dogs when we visited family. As Roger is so frail it didn'the take much to send him flying and has hurt his back and slightly grazed his arm - do I need to worry? I've put antiseptic cream on his arm so hopefully it will heal but not sure what else to do. Apart from that it's been a good week and we're hoping that it continues that way.

This board really is a life line, just to read about others and know i'm not alone, even though it'a really lonely place right now. Thank you for listening.

Sur

[sheena]

Hi my lovely I too am feeling lonely ,fills like I'm in limbo unsure what will happen next or even what I'm supposed to be doing .chin up and think of lovely things x

[kittycat]

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]

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

[sheena]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[Guest]

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]

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

[kittycat]

Well, things are not good at the moment. Roger is in hospital for the second time in a fortnight. The first time he had a chest infection and had a dreadful time in hospital. Then last Friday he was in awful pain with his back and pain and discomfort in his stomach but the GP decided he didn't need a visit, just an increase in pain relief! Later that day he was admitted to hospital where they believe he has some sort of blockage (he is going more yellow every day so it could be his stent is blocked), but on Thursday we saw the oncologist who thought that there was something more than the CT scan was showing and that it would be discussed at the end of this week. I think anymore Folfirinox is out of the question because he has had 6 cycles and reacted so badly to all of them that his quality of life has been seriously impaired, but at least we tried. It was suggested that he has no more chemo until there is movement on the tumour and then go for Gemcetabine but I'm conscious that he's just had Nanoknife and that needs chemo to do its job.

In the meantime Roger was in a lot of pain and was constipated too. They x rayed his abdomen to look for a blockage which showed that it was distended and thought that once his bowels were opened things would settle down. He is on a syringe driver for the pain and it is just good to see him pain free at last. Nothing much has happened over the weekend because it just doesn't in hospital does it, but at least he's comfortable at the moment and hopefully we'll have more news soon. He's pretty well wired up with fluids, a catheter, syringe driver and another attachment in his arm for dealing with breakthrough pain but he's not too bad in himself, cheerful most of the time at least. I'm not sure if he's going to come through this or what's going to happen next and its pretty scary and I just down't know how you all cope. I just hope we have some good news today.

Sue

[WilliamS]

Every day is different - this disease really is a rollercoaster. Fingers crossed for better news this week. Best wishes.

[jay]

Massive hugs Sue, thinking of you both. love Jayne

x

[kittycat]

Thank you, Jay, I see you lost your hubby last year - I don't know how you coped. I've spoken to Macmillan this morning and she says to take one day at a time and I try to do this but it's so hard, especially when you see the one you love suffering so. I'm off to the hospital now as I need to be with him as much as I can, for both our sakes, and I'm just hoping there is some better news today.

Sue

[Sueoliver]

Hi Sue,

I know exactly how you feel. Hang on in there! Thinking of you both and I hope things start to get better.

Lots of love,

Sue xxx