Husband J Severe D & V

[ElsieG]

Hello, apologies if I get any protocol wrong or write in the wrong place. My husband was diagnosed with Advanced PC with Liver Mets on 26th June this year. Prognosis poor so as he dearly wants to be here to see our Grandchild born on Jan 9th 2016, he opted to try Folfirinox which offered him the best chance of gaining time. He had 1st dose on 28th July and after a good few days after, rapidly went downhill and is currently in hospital with severe D & V, dehydration. He is receiving as good care as we can hope but it is hard, particularly as hospital moved him on Friday 14th at midnight to a room with no toilet only a commode. You can imagine the devastation this has caused as over the weekend he opened his bowels 27 times. Absolute nightmare which endures as no better. Just wanted to 'talk' to people that know what it is like watching a loved one battling this dreadful disease. I have read some good, helpful information on here which has really helped us so just wanted to say thank you

[J_T]

Hi Elsie, welcome to the forum and sorry your husband and you are having to deal with PC.

I remember Ray's first infusion and for a couple of days he was fine and we thought he was going to get away with no side effects, wrong! People have varying degrees of side effects and sound like your husband is having a hard time.

It's difficult but you will learn you have to shout, stamp your feet, and question, question, question everything and everybody. You will have to be a strong advocate for your husband. There is no way he should have been in a room with no loo. I would get on to PALS about it. Tell your GP about it. Keep banging the drum. Write everything down for later.

I hope he gets sorted quickly. Good luck and his symptoms should get less with each treatment.

Julia

[PCUK Nurse Jeni]

Hi Elsie,

Welcome to the forums.

So sorry to hear about your husband and the admission to hospital.

Have they said that the diarrhoea is strictly related to chemo? Because this is an awful lot of diarrhoea - do you know if your husband is taking pancreatic enzyme replacements, such as creon, to help with digestion? Because if he is not, then this could be part of the culprit for diarrhoea?

Please email us on support@pancreaticcancer.org.uk for more information if he is not.

I hope he is feeling better soon.

Kind regards,

Jeni, Support Team.

[ElsieG]

Thank you Julia & Jeni for your kind thoughts & advice. John was taking creons but his appetite has been extremely poor over the last 3 weeks & can't seem to tolerate much at the moment save for Jelly & biscuits. He has seen dietician both in hospital and out and he has excellent care from the palliative community team and the Macmillan Unit at the hospital. The hope is that medication will help to 'stem the flow' - good old codeine and ondansatron. Fingers crossed.

I did complain to PALS as over the weekend we had 4 shells of loose stools and 2 of vomit lining the walls of his room which were not collected for over 2 hours. The logic of moving a chap with this condition from a room with a toilet to one without was also lost on me. We are still waiting for the elusive 'room with a view' but having been visited by everyone from the Director of nursing, consultants, senior sisters, Matron etc since the complaint, we live in hope! The high point of our day is him commentating on the local bowls team playing which he can see from his 'throne' 9 floors up. You've got to see the funny side or go under.

[kittycat]

Hi Elsie, welcome to the forum, I'm sure you'll find a wealth of information and support on here as I and many others have.

I was sorry to hear about your husband's reaction to Folfironox, it really is a very toxic treatment and everyone seems to tolerate the side effects differently. My husband has had 6 cycles and initially suffered badly with sickness although they did manage to control it a little, but now seems to have developed diarrhea and awful fatigue which they are trying to sort out on the next cycle. Eating is also a problem and I don't think my husband has anything that I haven't fortified in order to increase his calorie intake and I do think that creons have helped.

I hope they manage to get some sort of relief to his symptoms soon, that he is enjoying the bowls and can get home soon.

Sue

[Sueoliver]

Hi Elsie,

I am so sorry to read about your husband. I hope they get everything under control. It is funny isn't it how we find a sense of humour even in the darkest of times!

Stay strong,

Love Sue xxx

[ElsieG]

An update to say J is now home after 10 days in hospital. D&V now under control. Still not eating much except Greek yogurt, custard, tomato juice, bananas and chocolate. This is a chap who used to eat a full roast beef lunch with apple pie and custard to follow. It is awful what this disease does to people. Appointment with oncologist on Tues to discuss way forward. One query, J seems to have acquired swollen ankles. Will this be due to being in bed and not doing a lot for the last week? He is getting about as much as he can but it seems a strange thing to have when he is hardly taking in fluids, just in very small amounts. Should we worry or just ignore it?

[WilliamS]

Hello Elsie, your husband's lack of appetite and eating soft food sounds very similar to my Dad. My Dad's feet and ankles got so swollen his shoes wouldn't fit. The G.P. said just to use a footstool to alleviate it. He also got a lot of fluid around the abdomen and had an ascites drain at the beginning of August and feels better for it.

[ElsieG]

Thank you WilliamS. It seems to have gone down a lot now so hopefully not start of ascites but this is all unknown territory so who knows. J eating a bit more variety now and is managing to do a bit more activity wise. I've saved the grass cutting for him and have made a list of 'little jobs' around the house that need doing. (only jesting of course - we have a real struggle keeping him away from his lawnmower & shed)! It is very hard seeing a once very active man spend days lying on his bed or chair dozing and not having any energy. It helps to read and talk on here. Hope everyone has a good weekend. X

[kittycat]

Elsie, I know exactly how you feel. From having an active social life only a few months ago to no routine at all and just seeing the one you love either asleep or sitting in a chair is soul destroying.

Sue

[ElsieG]

Sue,

Thank you for your kind support. It has been difficult for us since J was diagnosed with PC with Liver Mets on 23rd June. J's prognosis was poor, consultant said if no treatment it was approx 6 months. We know that is an average but still a shock when you are told face to face. We are expecting a grandchild on January 9th so J opted for Folfirinox to give him the best chance of still being around when he/she makes an appearance. Has had a bad reaction to first dose so will discuss with consultant where we go from here. Have to keep cheerful. We are plodding on together. Stories on here offer so much info & lets us know we are not alone in the fight. X

[Sueoliver]

Hi Elsie,

My Mum was told 8-12 months in May 2014 and it has been her will and determination that got her to her Granddaughters wedding. I am sure your husband is the same! Sometimes they surprise us! My Mum was in the hospice at Easter time and I didn't think she would be here now but she is! We have had some terrible times and she has been through so much but she always said she would see her Granddaughter married.

Try and stay cheerful but believe me I know how hard it is! I actually feel fed up today but that is probably post wedding blues!

Lots of love ,

Sue xxx

[ElsieG]

Hi, My Husband John appears to be losing weight rapidly now and he is feeling nauseous and having breakthrough pain quite a lot. He is eating so little I wonder how he has the energy to move at all. He is seeing palliative nurse on Thursday. She has been a wonderful support to us both thus far and hope she can help with the pain. J had a CT scan on Friday at the consultants request as I believe she thinks the tumour may have advanced or spread further. J is taking creons and is still taking steroids every day but can't seem to put any weight on at all. Is this normal? He was 13st 9lb on 26th Feb and is now 9st 5lb, having lost most weight over the last 8 weeks. We are so worried about the sudden changes this disease throws at you and not knowing if it means the end is nigh. Sorry to be all doom & gloom. One bright note, we are having our marriage blessed in church this coming Saturday, John's idea, to celebrate our life together and having a 'do' afterwards with family & friends. Should be a wonderful day, Fingers crossed. You have to keep going. X

[Sueoliver]

Hi Elsie,

How lovely having your marriage blessed. I hope the sun shines for you both and you have a wonderful day.

Take care and stay positive.

Love Sue x

[sandraW]

Hi Elsie,

How lovely having your marriage blessed, how many years have you been married? I hope the palliative care nurse can help with John's pain, it can be difficult to get the pain under control. This disease is so scary, and it takes over your life, but as you say all we can do is carry on, and keep going. I hope you have a truly wonderful day on Saturday take care sandrax xx

[ElsieG]

Thank you so much Sandra and Sue for your kind words. We have been married for nearly 23 years and been together for 35 years. I was a child bride of course! We are looking forward to the day very much. Even splashing out on M & S sarnies & party bits. J says he can't take it with him!

ElsieG x

[sandraW]

Hi Elsie,

I hope you had a lovely day yesterday, and that the weather was kind, I was thinking of you both,

take care love sandrax xx

[ElsieG]

Sandra, thank you so much for thinking of us. We had an absolutely lovely day with all our family and special friends. We live in Somerset and the weather was beautiful. John has been feeling a bit up and down with a lot of breakthrough pain even though his morphine has been increased he is still taking morphine tablets = to 10mls every 3 hours or so. We saw his oncologist today for the results of his ct scan a week last Friday and it was really bad news. It has grown to 12cm on the pancreas and as well as both sides of his liver it has now spread to his kidneys and spleen. There is nothing more that chemo can offer him and we are just to enjoy every day we have left. It is a fast growing very aggressive cancer & she thinks it will be 12 weeks or less. John's oncologist is an amazing woman who has been very supportive throughout and she was in tears herself and the senior nurse & dietician. They did what they could but when diagnosed he was pretty well advanced with it and the only chemo session he had nearly killed him anyway.

So there we have it. Off with the Picc Line and on with the smiles. We intend to enjoy every minute we have left and our first main thing to do is make it to London on 10th October to see John's Grandson Benjamin on the West End stage in the new musical Kinky Boots. It is a matinee so we should be ok, all being well. Little Victories in spite of everything, that is what we aim for. Love & best wishes to you and everyone else battling away at this unwanted intrusion in our lives. Xx

[Sueoliver]

Hi Elsie,

So sorry to read your news. Such a cruel disease. Enjoy every moment of your time together and I hope you enjoy seeing your grandson in Kinky Boots. I loved that film. I hope John is well enough to go out lots of times.

My Mum is seeing the oncologist tomorrow for her scan results. Not looking forward to it at all.

Take care and look after yourself as well.

Love Sue xxx

[ElsieG]

Sue, thank you so much for your kind words. It means so much to us both. I can only give you a cyber hug for tomorrow and sincerely hope that your Mum has better news. She has come across in your posts as a lady with a fighting spirit and lots of guts. You must be so proud of her and of yourself too for supporting Mum every step of the way.

God Bless,

ElsieG xx

[sandraW]

Elsie,

So very sorry to hear your news, but glad you had a lovely weekend, and I hope you enjoy the show. Some of the staff at the hospitals are amazing, our consultants registrar too was in tears when she realised how poorly Trevor was, and quite a few of the nurses in the treatment room teared up when I went back to see them all, sometimes I wonder how they can do the job. I am sure you will make the most of your time together, and I hope John stays a well as he can, take care love sandrax xx

[Guest]

Elsie,

So very sorry to read your news. They are completely devastating words to hear. Just remember, they aren't specific, and of course it could be longer. Enjoy every moment you have. Life is so cruel.

Leila xx

[Sueoliver]

Hi Elsie,

How are you and John? Did you manage to see and enjoy Kinky Boots?

Thinking of you,

Love Sue x

[ElsieG]

Sue,

Thank you for asking after us. John is doing very well at the moment. He is on increased steroids and is having 100mg of zomorph slow release tablets twice a day with morphine 10mg tablets for pen. The last 2 weeks he has been doing odd jobs around the house (recovering kitchen chairs, putting in a new phone) and has been out in his beloved garden making a new bed and planting bulbs for next spring. He has enjoyed the lovely sunshine and has also been cooking lovely meals, even though he still can't eat much.

We know it is the steroids giving him this small window of normalalisation so we are embracing it. I am back at work and work from home 2 days a week but will obviously be at home when things inevitably change. We are seeing Kinky Boots this Saturday so looking forward to that.

I am so pleased your Mum is doing so well Sue, much love and best wishes to you all. X

[Guest]

Hi Elsie,

I know how hard it is for you to see John so poorly, but I read positive things there. If he's up and about, tinkering in the garden, cooking meals, that is so good. Yes, it is things that we would take for granted, but when you are so poorly, they are tasks which are so amzing for him to be doing. I hope we get more nice sunny days so John can spend them in the garden.

Take care

Leila xx