Our Journey without chemo

[Guest]

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]

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]

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]

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]

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.

[Guest]

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

[Guest]

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]

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

[Guest]

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

[Guest]

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]

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]

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

[Guest]

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]

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

[Proud Wife]

Hi Marmalade,

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

Thinking of you both x

[Guest]

Hi everyone and thanks for your concern

I find it incredibly touching that a group of strangers can generate such a feeling of safety and support. Funny word 'safety' but it's not easy to say things and be honest with people around us, it may be too blunt or too raw, or for fear of causing distress or embarrassment to friends. I do feel that it is safe to say what I feel on here.

Louis has been experiencing more pain and eating a lot less. He has finally accepted that we can't control his blood sugar with diet anymore and has started on Metaformin which, so far, has not had any unpleasant side effects. Hoorah for that! The 20mg of steroids caused mayhem. His blood sugar went crazy and he felt terrible so we left it off for a week. Because of the pain and lack of appetite we reintroduced it today at 5mg in the hope that it would help with any inflammation/pain. Our daughter says it has only mild pain relief properties but does help with mood and appetite so here is hoping. Because he is eating less and losing more weight everything is a huge effort for him. He is now virtually housebound because he is just too exhausted to go anywhere. For the first time he has said that he just wants it to be over, a phrase I heard often from my Dad all those years ago… I can understand his feelings.

The pain is interesting. It is in a variety of sites at different times, his back fairly consistently, his tummy becoming more frequent and his chest on and off. These pains are nearly always in the late afternoon, evening or night and never so far, before 3pm. He is convinced that it's digestive and it may well be but more creon doesn't make any difference and nor does having only light or liquid food so I'm not convinced but of course he then worries about eating anything at all…

Louis does not like 'adulterated food" no amount of cajoling will entice him to eat anything with added protein even the juices. He says that it is bad enough to be dying without having to eat that stuff, so we do our best with Horlick's, porridge, scrambled eggs, peanut butter and soup etc. He was always resistant to change and there are no signs he is going to be any different now.

He was awake for most of last night with what he describes as indigestion which turned to pain for a couple of hours between 4 and 6am. He spent today in his dressing gown but has been up and down stairs a few times and seems fairly comfortable.

Our entertainment this week has been going through some gold! Over the years he has bought and sold bits and bobs of gold, a left over from his Belgian family being made refugees twice and having only what they could carry and gold can be used in any country. Don't get excited, we are talking bits and bobs in a carrier bag not chests full of Krugerrands. Anyway, among the items was a very flimsy 1860 5 franc piece which Louis said was given to his father circa 1908 by an uncle. I love family history so set about following up on the story and getting out some very ancient photographs which had been carried to England in 1914. We passed several afternoons happily updating the family tree.

Thanks again for the concern and contacts, it all helps.

M

[Didge]

Marmalade, metformin is believed to restrict growth of pancreatic cancer to some extent. Perhaps that will help Louis to accept it. I do hope he can improve the pain as that can be very debilitating and I can understand how people in constant pain just want it to 'be over'. Glad you have had some enjoyable time with the gold! X

[boa]

Marmalade, good to see your post but sorry about the pain for Louis. I'm glad you find this forum supportive as I have done. I hope today you will be good for you both. Catherine

[sandraW]

Hi Marmalade, what a lovely thought chests full of Krugerrands still the franc piece sounds very interesting, these special times will mean so much.

Sorry to hear Louis is still in pain, its so debilitating and I to can understand his feelings, but its hard for you to hear.

Your daughter must be an absolute godsend, the steroids always sent Trevor's blood sugars sky high too, now you have reduced the dose and started the Metformin, I hope things will improve for Louis soon, it does help getting things off your chest, and knowing that there are others that understand exactly what you are going through, take care sandrax xx

[Guest]

Hello all,

I can't believe we are at the beginning of June already. I don't like to think about it and want to stop the clock. Since I last posted Louis has more or less taken to his bed. He comes downstairs for breakfast and lunch most days and if he feels strong enough has a walk around the garden but he is really only comfortable in bed. Despite the morphine he finds any pressure on his tummy uncomfortable and likes to be at an angle of 45 degrees. Ah yes the morphine, we had a few days on Oramorph but are now on Zomorph and Mettformin for his massively high blood sugars which were 32 (!) but are now circa 11.

Our GP came on Saturday morning and spent a long time chatting to Louis and they completed the TEP form. It was important to Louis to have this done so that there is no misunderstanding about his wishes. I have to say that the GP has been fantastic since leaving the hospital and treatment team and joining the palliative care team. She is actually on holiday in France this week so made sure we had prescriptions for all the 'just in case' drugs which I've now collected and gave me a number to get straight to District Nurses over the bank holiday.

All was well for a few days but Louis then had a bout of severe diarrhoea. We are not sure what is going on as everyone was expecting things to go the other way because of the morphine. He drank but didn't eat at all yesterday and has had little bits of starchy food today. We have our fingers crossed that it was a passing bug but our doctor daughter thinks he needs more creon and Ometprazole as he had been belching for England the day before the attack. The specialist nurse is not so sure, her rationale is he is eating less so the Creon should be ok. So, we gave him some Immodium and increased the Creon a little, it seems to have helped with the belching and uncomfortable gas. As the GP says, it's all alchemy from here in…

So, he continues to lose weight but is feeling better because the pain is under control, we are fortunate to have a good sized house so he can walk around the upstairs and he tries to go up and down stairs a couple of times a day. He has limited energy so activity of any sort is interspersed with little rests. Apart from that he appears to be content with his TV, music centre and the Daily Telegraph including crossword and being waited on. Something is happening to his eyesight though. I think maybe there was some damage from the very high blood sugars and will discuss it with the specialist nurse tomorrow. Seems to be his outer field of vision and he reports seeing shadows.

The sun is shining here this afternoon although we were promised heavy rain and Louis has just been out to admire the garden. Lovely!

M x

[boa]

Hello Marmalade, I was just driving back from shopping and thought about you and was going to post to ask how things were going but here you are! I'm glad Louis is getting some pleasure from the garden, his music and paper. The thing about pancreatic cancer seems to be its unpredictability. But you are both coping so well and I do admire you. I hope you continue to get some enjoyment together. Catherine

[Dandygal76]

Hey Marmalade, you are both doing marvelously and I am also glad you are enjoying the garden. I just thought I would mention that weight loss etc is also a side effect of Metformin. My dad was much more comfortable when he swapped from that drug. It is probably not the same but maybe worth a thought. We also struggle with blood sugar and I think I may inquire about insulin injections and be done with it. Sending you hugs. x

[Proud Wife]

Hi Marmalade

I enjoyed reading your update! So many similarities, and I totally agree with you about GP care -v- hospital treatment team. As a diabetic myself, I know only too well that high blood sugars can make you feel really poorly. The highest I've ever been is around 24 during a short course of steroids and I felt awful. Pancreatic cancer and sugars of 32 must have been truly miserable for Louis so I'm sure that's got something to do with it. If they go high again, as much as Louis will probably hate it but it might be worth asking about insulin as to lose his eyesight completely due to diabetic complications doesn't bear thinking about, he's got enough to cope with as it is.

How are you coping? I hope you are managing to look after yourself too?

Please keep us posted xx

[sandraW]

Hi marmalade,

I am sorry I missed your post. Glad to hear the GP was so caring and helpful, it must be reassuring for you that your daughter can give such informed advice too. Its good that Louis is still managing to get downstairs for some of his meals at least and a bit of fresh air in the garden, will make him feel better too.

You are doing an amazing job, but we just do it don't we, we find that inner strength to just carry on as we love them so much, we would do anything to make their journey easier.

It seems as though you just have to juggle the doses, and mixture of meds to get the right mix for that individual, but its hard just to get comfortable I know how Trevor was. Fingers crossed the increase in creon and the imodium helps to settle Louis's tummy, sending you some extra strength and a cyber ((hug)), thinking of you love sandrax xx

[Guest]

Hi,

How is the diarrhoea for Louis now? My Dad suffered terribly with diarrhoea. Loperamide is supposed to be good at stopping it, has he tried that?

It has been a nice day here today, hoping Louis was able to enjoy his gatden again today.

Leila xx