Our story

[PamW]

I joined this forum in August last year and after reading Fifi's post and others tonight ,thought it was about time I posted as I have learned so much from all your posts and have taken comfort knowing I am not alone in this. Our story briefly... My wonderful husband, S, was diagnosed aged 59 in July 2014 with a 3.4 tumour and pseudo cyst in the tail of his pancreas and several mets to liver - CA19.9 was 21000. Began abraxane and gemcitabine on 22nd August. After 1st cycle spent a week in hospital from side effects so dosage reduced by 20 percent . Finished 3rd cycle in the middle of Nov and CT scan showed pancreas tumour reduced by 15 per cent and largest liver met by 7 per cent and tumour markers down to 340! Did another 3 week cycle but then had severe oedema in legs and couldn't walk so started diuretics and delayed the 5th cycle with dose reduced to 60 per cent to 31 Dec and CA 19.9 has dropped to 69. Finished 5th cycle on 14 Jan but then got a lot of fluid on lungs and has been admitted to hospital again today with high temperature and strong pains in abdomen. Have started antibiotics and taken chest X rays and I have just left him and hopefully he will be able to get some sleep and the antibiotics will start to work. We have insurance but have so far stayed within the NHS as we feel the treatment has been superb and have had lots of support from our GP and the local hospice service have been great.

S was a very strong, active person before all this started and has really struggled to come to terms with being incapacitated. He is very depressed as after one problem has been sorted, something else then comes along ie pain eventually controlled, diarrhoea and sickness controlled, creon led to better eating and weight loss stopped, swelling and leg weaknesses starting to be addressed and now infection. Tonight he felt like giving in and is so tired of dealing with this pain. I know lots of you posting on here have had a lot more to cope with and our results have been so good and I have been quite optimistic about us having some OK times again with a holiday maybe. I struggle sometimes (tonight especially) to find the strength to keep

Positive and supportive and am so in awe of how strong so many of you see to be - any tips appreciated!!

[nikkis]

Hi Pam,

Just wanted to say a quick hello, I am so glad that you decide to post but sorry to hear your husband isn't so great at the moment. i think the fact that you have had the courage to post shows the strength and fight you still have in you!

Best wishes,

Nikki

[rsk1974]

Sorry to hear you are going through this, posting here is so helpful and it shows you are also very strong by being able to post it. It's so hard and noones symptoms seem to be the same as anyone else's. My dad struggled with adema,such a horrible side effect. Stay positive and everyone on here is so supportive.x

[Didge]

Welcome Pam. The is such a roller coaster ride that there are often times when it feels hard to go on - and that is true for the 'carer' as much as the sufferer. Easy to say 'focus on the positives' not always easy to do, but your husband has had great results! To come down from markers of 21,000 to 69 is incredible. Unfortunately infections and any other type of side effect can hit hard (my bf had the prospect of amputation briefly discussed for cellulitis at one point early last year - it didn't happen!) but there is no reason to think he will not bounce back from this and carry on. I've not been very good at planning holidays - all our breaks have been last minute but there are others on here who have planned, and taken, foreign holidays and enjoyed them, so maybe something to look forward to would be a good 'tip' for helping to stay strong and not focus too much on what is going on right this minute.

[sandraW]

Hi Pam,

Welcome to the forum,once you have made that first post its much easier believe me. Poor S he really has had a torrid time of it, my husband, Trevor too had a tumour and cyst on the tail of his pancreas, he was lucky to get surgery in September 2013. Although the surgery was successful and he started chemo 8 weeks later, by January 2014 he had mets in his liver.

We have been incredibly lucky in the respect that T has kept remarkably well so far, but at the moment the tumours are not responding well to the treatment, so we don't know what the future holds.

It is very hard to stay positive, when you have had such a lot of setbacks to cope with, T too was very active and was still working when he was diagnosed at 67, he gets so down as although he is well, he has no stamina now, and after 20 minutes of doing anything he is tired out.

We just live for today, if its a good day we try to get out, if its a bad day, we stay put, and please don't think we are all positive Polly's on here we aren't, and as Nikki says I am sure you have lots of fight left its just hard to keep that brave face on when you too are worn out with worry.

I hope S improves soon, and that you find your positivity again take care sandrax

[wackywacky]

Hi Pam and welcome, im not very good with words unlike some people on this site who know what to say and how to say the right things at the right time, you have your ups and downs all the time you get one thing sorted then the next thing hits you. One thing I will say they are a good bunch of people and they all keep fighting x

[Guest]

Hi Pam. Thank you for posting. I hope it has made you feel less alone.

Sorry to hear S has had a tough time. I really feel for you when you said how fit and healthy he used to be, and that sometimes he feels like giving up. I know how heartbreaking that will be for you to see and hear. My dad often says things like that and it just breaks my heart.

Do you know about Jeni and Dianne, the nurses on here? If you have any questions, anything at all, you can email or call them. They are real people and will be able to offer you and S some advice, how to deal with things, things like that.

Leila xx

[LMD]

Hello Pam

Welcome to the forum... Sorry to hear of S's diagnosis and that you are both going through this. As others have said, try and take one day at a time. I hope S starts to feel better soon and that the antibiotics help.

With love x

[Go green sue]

Hi Pam, I am not good with words but just want to wish you and S the strength to keep going. I had a distal pancreatectomy on 22 August 2014 for an IPMN. It was not malignant but I have my next MRI on 22 February to check it hasn't grown back in the head of the pancreas. My mum and her dad both died of pancreatic cancer so they are being really good with me- but 20 years ago they didn't even offer chemo- so it shows how things have progressed.

I too have private insurance but my consultant actually told me to stick with the NHS as they have more specialised facilities than private.

Stay strong, accept the down times and look forward to the future together. Love Sue H xxxxx

[PamW]

Thank you all so much for your responses. It does really help to know that there are other lovely people out there who truly understand how you feel - though of course I'm sorry that you're in the same boat so to say. I think I'm just worse at the moment as missing Stephen whilst he's in hospital and I've been so used to being with him 24 hours per day since I gave up work last July. At least when he's at home I can see how he is and feel that I'm doing things to help. They are keeping him in to continue the intravenous antibiotics but don't seem too concerned about him or think he has any serious infection and he is on a general ward now. The main worry I have now is about his mental state. Since being on the chemo his thinking has become a little wooly at times but since being in hospital he has deteriorated so much. He cannot remember anything the doctors have said to him and is very very confused. He doesn't want me to stay long when I visit and it seems very taxing for him to speak at all. He says he can no longer read even a newspaper and just sits on his bed watching the goings on in the ward. From my readings I think this may be 'cancer fatigue' and I so hope this is temporary as it feels like being with a stranger. We are due to see his oncologist tomorrow and next chemo, cycle 6, is due on Wednesday but Stephen is saying he doesn't think he will have any more. Maybe once I get him home and he begins to feel more like his old self then he may change his mind but possibly a longer break from the chemo may be a good thing at this stage.

Wishing you all continued strength!

Pam x

[wackywacky]

Hi Pam, we only had 3 weeks on chemo and then had to stop (read my posts if you want) but we have had infection due to a blocked billary stent and had to have a spell in hospital to get it sorted we too were on intravenous antibiotics and my beloved was wooly deteriorated could not remember what doctors had said and was very very confused and also did not want me to stop very long. He was like this for a week and I was thinking the worse. Things did start to improve and they let him home with tablet antibiotics we were on them for 4 week, it did take him a good 2 month to come round, but we are still here. Hope things improve soon love wacky x

[PamW]

Thanks Wacky for your encouraging message. I've read your posts and so glad to hear how relatively well your husband is now compared to the horrors he went through last year - hope he gets his swollen feet sorted soon. Stephen was prescribed diuretics for his swollen feet and legs which seems to have worked. Today he says he doesn't want to have any more chemo and I do think a few months break will be good for him. We're seeing his oncologist tomorrow so will seek his advice then

Take care, pam x