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Marmalade

Our Journey without chemo

Postby Marmalade » Tue May 10, 2016 9:52 am

Hi everyone,

I have read a great many posts since finding this site a month or so ago but by no means all. My husband is 83 years old so significantly older than most of the partners or parents I have read about and I am grateful for that. I am a lot younger but we have been married for 40 years so being with him has been almost my entire adult life. Whatever disease took him would be hell but as he has heart problems I guess I had not reckoned on it being this. I do feel that given he has had a good and long life I have no real right to be posting on here at all but I am encouraged by responses to occasional posts.

We both knew back in January when a diagnostic CT bowel scan revealed a mass in the pancreas what it was. It took several more scans and a biopsy to confirm the diagnosis in March this year. The cancer is enveloping the blood vessels and veins so there was only ever going to be one outcome and none of his multidisciplinary team have ever encouraged any other view. The oncologist explained that he could have chemo which may extend life by a few months but that given his age and condition, it would probably be a rough journey for marginal gains. My husband had already decided that unless someone was going to say he had a chance of recovery or they would be better able to manage his symptoms, he would not go down the oncology route.

Our daughter, a doctor herself, told us that we would be happier in the palliative care system as my husband was finding all the procedures and waiting and anxiety very upsetting. She could not have been more right. We are not at the end of our journey yet but so far our experience of the local palliative care team has been chalk and cheese when compared with hospital care. As far as we are concerned the hospital multidisciplinary team structure and process did not work for the patient. Communication between the team and attention to reading the files and noting the detail was completely lacking. None of the consultants had read the files before speaking to us and in one case, a consultant ordered the wrong, very dangerous, procedure after an MDT meeting where she was clearly not paying attention. Fortunately, the consultant intervention radiologist refused to do it and immediately referred us to a centre of excellence two hours away. We have an apology for this and other errors and omissions from the MDT team lead but it doesn't help, we are where we are and I doubt our experience is unique.

From the very beginning contact with the palliative care team based at a local hospice has been calm, reassuring, honest and caring. We all fear what we don't know and a team focussed solely on quality of life knows this too. They approach the inevitable with calm reassurance, they discuss what may happen and what can be done by them, the GP, the patient and the carers as part of the same team. They have helped us think about what my husband wants to happen or not happen to him in a kind and compassionate but not patronising way.

Deterioration has been very swift, faster than I was expecting although our daughter did warn me early on to try and get any trips or visits done before the end of May. It seems she may have been slightly optimistic at that because he went almost overnight from having low level pain and a good appetite to complete exhaustion, no appetite and considerable pain. I spoke to the specialist nurse in the afternoon who advised just a milky drink that evening and that he would call me in the morning having spoken to our GP. At 8.30 the next morning the nurse called and told me that a prescription for steroids was waiting for me at the local chemist. They have helped with the stomach pains and given him some appetite albeit smaller than it was but have ramped up his blood sugar, increased thirst and peeing and stopped him sleeping. GP has now cut the dose. I can't fault them all at the moment as the GP and palliative team come very quickly if I call them, offer options for control of symptoms and are open and supportive. We still have a way to go but it is obvious to me that he is losing ground every day. He still washes and dresses but it takes hours, it doesn't matter, he can take as long as he likes and prefers to do things for himself if he can. On good days he walks in the local park for 10 or 15 minutes. He is actually enjoying planning his funeral. I know that sounds macabre but he adores music and the process of finding the very best or favourite recordings of things is actually very enjoyable. We have played lots of old favourites and this of course has brought back many happy or funny memories.

I'm not trying to be overly positive in this long post (sorry) it's just how it is. We cry, sometimes we cry a lot because we are both grieving for what will be lost. A sort of pre grieving. I see this with my son in laws father who is grieving for his wife, she is still alive but has frontal lobe Alzheimer's so she is slowly leaving him. We don't apologise we just let the tears come and eventually they pass. What else can one do?

Sorry about this long post, I just felt the need to put down and share what was in my head with people who know that they don't have to try and say the right thing or offer help they cannot give, people who just quietly understand and who are also on this journey. Thx all

PCUK Nurse Dianne
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: Our Journey without chemo

Postby PCUK Nurse Dianne » Tue May 10, 2016 10:29 am

Dear Marmalade,

Thank you for your lovely post, and such courage to bare your heart as you have. It is so lovely to hear your story and the impact of wonderful palliative care services, and great that you highlight how this journey is different for each individual patient and their families. We do recognise this is so important to 'treat' each patient as individual, and what may be appropriate for one patient may be completely different for others. It is also warming to understand that you feel welcomed and comforted by the wonderful family on this forum who are so very supportive.

We welcome you and hope that you will feel supported and nurtured by others, and of course our support service is available for you at any time you wish to access this confidential service.

Dianne
Pancreatic Cancer Specialist Nurse
Pancreatic Cancer UK Support Service
Support free phone 0808 801 0707
Email: support@pancreaticcancer.org.uk

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

Re: Our Journey without chemo

Postby sandraW » Tue May 10, 2016 11:30 am

Marmalade, as Dianne says what a truly beautiful post. I am sorry you and your poor husband are going through this but it is inspiring to hear how you are handling it. I am sure your post will help others in making the very hard decision of which path to take.
We knew my husband's cancer was very aggressive, and when it came back 4 months after his surgery, I too knew it was only a matter of time, and I think I too started the pre-grieving process, as I knew the inevitable outcome, my husband knew too but he preferred to believe he could beat it, just his way of coping.
I wish you continued strength on this horrible journey and please let us know how you are doing, take care sandrax x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Our Journey without chemo

Postby J_T » Tue May 10, 2016 5:13 pm

Welcome and thank you for sharing your story so far. It's clear that you have a wonderful relationship with your husband and you and your words are so heartfelt.

Your 'chalk and cheese' experiences mirror the ones I had with my husband. Our palliative care team were excellent and I'll be eternally grateful for the support and care. I am pleased to hear you have similar support from your team.

Sending strength and virtual support to you all.

Julia

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Tue May 10, 2016 5:24 pm

Just wanted to thank you for this post. Echoing others, I also think palliative care teams are wonderful. I agree that hospital visits are so stressful. Everyone is doing their best but it takes time and energy. Good wishes to you both.

Fifi

Re: Our Journey without chemo

Postby Fifi » Tue May 10, 2016 8:39 pm

Hi Marmalade,

Thank you for posting, you sound like you have such a loving relationship.

It does not matter how old your husband is. Whether he be 43 or 83, he has a right to life and does not deserve this. Yes, others have been diagnosed much earlier in life, and passed away a lot younger, my own Dad included. I would have still been just as heartbroken if he had lived to 83, and I would still have fought for him, just as hard as I did.
It is a hard decision for you to decide to have no chemo, but does sound like the right decision for him. From what I have read, he does have quality of life, and that is so very important.
My Dad chose chemo, because he had no quality of life. 10 minutes in the park, is so very special, and he should embrace that.
It is good to read your Daughter is on the ball, you need someone like her to fight for you both.
My Dad had very bad anxiety also, and I am so pleased he didn't have to deal with the medical people personally. I obviously never told him the huge amount of struggles that I had. He simply thought I could anything with just one simple phone call. That is what I wanted him to think. He was a big people person, and he thought people cared the way they used to.
I am so pleased to read you have some good people on board, who will be attentive to your husbands needs, that is also so very precious.
I hope your husband continues to attend Spanish classes and taking walks in the park.

Please keep posting, and please don't think your husbands age is an issue here. We all support life, regardless of age.

Leila xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Tue May 10, 2016 11:45 pm

Thank you all for your lovely and supportive posts. Louis, doesn't feel able to continue his Spanish lessons now as he finds them too tiring but that does not stop his classmates calling on him. It's a shame and he did try to keep it up but getting himself ready for 9.30 in the morning was a bit much. He's good at languages and speaks and writes several very well, I thought it terribly attractive to have a boyfriend who could speak French when we first met, I still do!

M x

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Our Journey without chemo

Postby Proud Wife » Wed May 11, 2016 6:41 pm

Hi Marmalade

I feel so inspired by your heartfelt post. I am 11 years younger than my husband. I had hoped we'd grow old together but clearly that's not meant to be.

Please, please, please never say you don't have a real right to be posting on here. Yes you must certainly do! As Leila says, age is just a number and I know we'd all love to hear more from you, especially updates as to how Louis is doing. My hubby is multi lingual too and it's certainly been helpful when we've been abroad!!

I'm quickly learning how good our palliative care team are. It gives comfort and peace of mind for whatever the future has in store.

Take care x

Fifi

Re: Our Journey without chemo

Postby Fifi » Wed May 11, 2016 9:21 pm

I agree Marmalade, very attractive.

And 9.30 is too early to ve going out anyway, he can always practise at home anyway.

You sound like a very strong couple and I really hope Louis continues to do well.

Leila xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Fri May 13, 2016 6:15 pm

Having been on our 'coping' and 'caring' courses or most of them at least I felt I had a purpose with planning ahead but life has a way of screwing up plans and Louis is certainly being as individual now as he has been all his life.

Over the last 10 days his appetite has more than halved and his breathlessness and fatigue quadrupled. He was prescribed some steroids for sharp tummy pain and to stimulate his appetite. They certainly got rid of the tummy pain but fatigue and appetite continued to get worse and it was coupled with sending his blood sugar through the roof resulting in incessant peeing and constipation. After 4 days he gave up with them as neither of us had had any slept for more than 20 minutes because of trips to the bathroom all day and night. My brain is on the alert for any movement, much as it was when we had babies in the house so when he wakes, so do I.

So, we are back to paracetamol on ibuprofen and to Louis saying he prefers to manage this way. What seems to be happening is a general closing down. He still comes downstairs for all his meals but has been getting washed and dressed later and later in the day and today he has not bothered getting dressed, mostly because he is comfortable in bed. He can alter his position with a grand assortment of pillows of all shapes and sizes. His twice daily walks went to once daily about 4 days ago and we are now down to a short walk in the lane or, today, just a walk round the garden and 10 minutes on a bench soaking up the sun. He has some back aches and pains but nothing horrendous at the moment providing we keep to the pain killer routine. His weight is falling off. He doesn't want to weigh himself anymore so we don't but his clothes hang off him, maybe another reason he doesn't feel like getting dressed, can't keep his trousers up! I thought about braces and it causes great hilarity because he only has the ones on his dinner suit and they have button holes not clips as they were purchased in 1957, the year I was born! He also asked me to cancel a visit from one of the gang from Spanish class which was sad but he was too tired.

I got him to try some ice-cream with added protein yesterday but he hated it and I have to say I agreed with him so we are sticking to small, frequent amounts of 'normal' food. Today he fancied a little bit of mushroom risotto and a side order of scrabbled egg (?), so that's what he had, tiny amounts but he enjoyed it. Two hours later he could smell rock buns cooking and managed a whole one with a cup of tea. He was always a sucker for a rock bun and baking makes me feel useful.

I don't know what I expected, more drama I suppose, maybe that's still to come but to date it's exactly as he describes it, 'fading away'. He's not depressed, he says not and it doesn't seem so to me. He says he can feel he has only days left and told the specialist nurse that he is just waiting now. I think she thought he was depressed and being morbid but I don't think so, he is still chatting and is much taken up with a biography of Admiral Cochran. He says he just wants to be left alone as much as possible and doesn't want to experiment with more drug cocktails or 'funny food' in the midst of this he is still making me laugh…

Thanks for the lovely messages,

M

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Fri May 13, 2016 7:42 pm

Thank you for sharing. You are describing the same process as my husband had with 'shutting down'. Things just got slower and slower. You are coping very well with what is happening and I send you both warm thoughts. Catherine

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

Re: Our Journey without chemo

Postby sandraW » Sat May 14, 2016 11:47 am

M Thanks again for your lovely post, my husband too started to slow down, the not getting showered and dressed was a big pointer for me, the just not being able to be bothered to, Trevor was so tired but if the body is shutting down, I suppose that is to be expected.
Be sure we are all thinking of you both and if Louis has decided his time to leave has come I hope he just slips away surrounded by his family and all your love, take care sandrax xx

Marmalade

Re: Our Journey without chemo

Postby Marmalade » Sat May 14, 2016 7:35 pm

Talk about a roller coaster! Louis got washed and dressed this morning and has spent the day sitting and tottering about in the garden with me. He has eaten very well and seems a different person today. Weak and breathless but just going at things slowly and helping me sort out the rain water collection on the greenhouse. I don't know why he has perked up today but thank the lord he has and we have had a lovely day pottering about and enjoying our garden.

boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

Re: Our Journey without chemo

Postby boa » Sat May 14, 2016 7:41 pm

Nice to read this and glad you both had a good day. Catherine

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Our Journey without chemo

Postby Proud Wife » Sun May 15, 2016 8:19 pm

Hi Marmalade,

Really lovely to hear your latest update! How was Louis' day today? How are you bearing up?

Thinking of you both x