Hi all, thank you to those who replied to my first post about my best friend who is battling bladder cancer. Things have deterioriated since her diagnosis earlier this year, she was orginally given a very clear treatment path of several months of pre-surgical chemotherapy, surgery in early Nov, and recuperation. On that schedule we expected she would be getting out of bed around now and beginning recovery.
That all fell apart 3 days before her surgery date when the surgeon revised his opinion that her cancer was operable. The chemo had caused her considerable debility but had not reduced the tumour sufficiently.
By that time she was still able to walk with a stick, get outside the house and manage the stairs, and it was proposed she should have radiotherapy. Before that was possible she was treated with Fentanyl patches with liquid opium additionally when needed. The radiotherapy was given in 5 treatments on consecutive days in November, it had a dramatic effect in that she was no longer able to get up out of her chair or walk unaided, and couldn't manage the stairs.
That was 3 weeks ago and she has since been confined to her bedroom. A carer visits each morning to help her get up, wash and dress, and she spends the rest of the day in her chair in the same room. She is quite withdrawn and not very communicative, which I don't find surprising given the nature of her pain medication. I visit at least once a week and have not seen any improvement in her mental or physical condition.
I am confused that there does not seem to be any clear ongoing treatment plan, she has been given steroids to 'give her energy'. She is visited weekly by a nurse. I have tried to ask her husband whether he has been told her prognosis or treatment intentions, he says he 'doesn't want to know'. He becomes very emotional and tearful.
This is difficult for me as I am unsure how to try to help if I don't know what her future is likely to hold. For example, she isn't keen on moving from her chair while her husband is insistent she should get up 'for exercise'. If there is any chance she is going to recover then I would support this, but if not, I feel it would be kinder to leave her where she is most comfortable. It is causing friction between them and I am in the crossfire!
My natural instinct is not to interfere between married partners, it's their house and their lives, but it is breaking my heart watching my friend continually getting worse and want to do anything I can to give her any sort of comfort.
Tomorrow I will be helping her husband in the kitchen, usually she is the cook and has given me Christmas Day for the last 32 years, and I can peel sprouts as well as anyone. But after tomorrow, the inner conflict will continue. Do I stand back and let her miss out on things I think she would enjoy, and risk going against her husband's veto that it's unnecessary/undesirable, or should I be more assertive?
Example: they have never allowed their dog upstairs, it is devoted to her and is spending 23 hours a day alone in their kitchen. Up till last month, when she was able to get downstairs, the dog curled up at her feet and was no trouble at all. I asked her last week if she'd like to see the dog, she said yes. When I mentioned that to her husband he said she 'didn't want it running up & down the stairs' and it would be overwhelming, jumping all over her. My idea would be for me to put the dog on a lead and take it up so I could control it and stop it jumping on her. I am wondering if I should ask her again tomorrow, while her husband is present, and if she again says yes, just do it. It's unlikely he would object if she has given an affirmative answer, but I don't like feeling that I am 'refereeing' between them.
Thank you to anyone who has read this far, and I am grateful for all advice. She is very dear to me. I am dreading tomorrow's forced 'normality' (husband's insistence).
Hi LizM,What a difficult situation,I feel for you all.That is strong medication and is bound to be having an effect in addition to the decline from the radiotherapy.Is it helping the pain ? I’m sure your friend would be cheered by seeing the dog if you can take it up on a lead.I expect the dog would be well behaved animals do seem to sense when to be gentle and quiet.My late mother took great comfort from having our late cat with her.I hope you can find out more about what is happening.It is tricky to know what to do when you don’t know the compete picture.Best wishes Jane
HiLizM
How is your day going? I hope that your friend has found some comfort from her dog, if allowed upstairs. From the outside looking in and from my own cancer experience, I would ask you to reflect on the words you used to explain. The cancer was said to be inoperable and chemo had not reduced the tumour. Your friend has had radiotherapy but not a full course. I had 5 sessions of radiotherapy for symptom control to pelvic bone secondaries, my cancer is incurable. It is however, currently stable and I am not on any pain medication. I do recognise that all cancers are different and I am not medical. Can I suggest that you ring the Macmillan helpline to get some advice, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us
I would suspect that her husband's forced normality is an effort to deny her illness and where that path may lead. He may be frightened and is understandably upset but denying the inevitable may not help his wife. She may not be capable of exercise. Unknown to me, apart from the terrible pain, I had a pelvic fracture prior to treatment (the cancer had caused it).
Would it be possible to have an honest chat with the three of you together and to explain your unease at being caught in the middle. It may be that things need to be faced. I hope you can find a way forward. Best regards.
A x
Is it possible for your friend to get a second opinion? Or go private?
It's strange that they've decided she's now not eligible for surgery. And now they've put her on a cocktail of debilitating pain meds.
No wonder the poor woman feels terrible. Sounds like they've chucked her on the scrap heap, treatment wise.
Hi and thank you for replying. I'm just back home, I did get agreement to take the dog upstairs and it was, as you surmised, very well behaved. I took my own dog's spare bed with us and have left it there, their dog took an immediate shine to it and I have suggested they try putting the bed next to my friend's bed, and see if their dog will settle so they can be company for each other. Fingers & paws crossed!
Hi and thank you for replying. I am sure you are right about denial, and also about it not being the most helpful to my friend.
Today has been truly awful. All was ok up to 2 p.m., her husband I and went out for 15 mins with the dogs in the garden and came back to agonised calling from upstairs, she was crying out in unbearable pain. Nobody was sure whether the pain was cancer related or bowel pain from stopping using laxatives a few days ago, she had been given a different brand which caused an upset and nobody had thought to replace them with the original brand which they say had worked well.
To cut a long story short I made her husband find and visit an emergency pharmacy for some medication, I said if he wouldn't go I'd go myself. Then I made him call the hospice support line. The nurse was wonderful, gave advice and will call back tomorrow morning. We have had the nearest thing so far to an honest conversation when I told him I thought he needed to be more pro-active and ask for help.
I felt able to leave when the pain meds had kicked in and knowing the nurse would follow up.
I am told that the private oncologist has said he is 'stepping back' and the hospice has taken over her care.
Nobody has said what the purpose of the radiotherapy was, I understood there was going to be a scan to assess the effect of the radiotherapy but nobody has said if that is still the plan, or when it might happen.
My friend was distressingly grateful for my taking control and telling her husband what to do today, I am a total wreck!
Hi and thank you for replying. She has been privately treated so far via insurance. The decision to abandon surgery was based on the chemo not having the hoped-for effect of weakening the cancer. What is distressing is that, so far as I am aware, nothing was ever said in the original presentation of the treatment plan about the possibility of the chemo not working as hoped. The impression I was given was that it was a done deal. Perhaps I am just plain naive!
Hi LizM
Well it sounds, to me, that you did great by your friend today. The situation is distressing and difficult but you got her the help she needed. I'm sure she's grateful you were there today. It may be worth checking with her husband that her care is being followed up, as changing provider and bank holidays are when things can get missed. If you need any advice, remember the Macmillan helpline, link is in the reply above.
A x
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