Hubby now only getting palliative treatment

Hello Barney53. It sounds as though your husband has had a really tough time of it and I am sure it has been as hard for you. Chasing information has always been a way of life for many, and in these current times, much more difficult. Hoping you get some positive news at the oncology appointment. Wishing all goes well. Best wishes.

Thanks rily.  We hope so too

Dear Barney53, welcome to this most supportive group. I'll just add my usual suggestions, do consider registering with your local Carers Association as they may offer you  anything from a little to a lot of support at different times as this journey continues. Also MacMillan helpline are worth a call, listening ear, will point you to financial help as applicable too, send literature as you wish eg leaflets for help telling family etc. And have a group specifically for patients who will not recover from their cancer.

Best wishes, Denby

Hi Barney53. I am so sorry. I don't know if this will apply to your husband (I certainly hope!) but I have read that "palliative treatment" does not necessarily mean that the end is near. Some people have lived with palliative treatment for years. For example:

https://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/palliative

" ... palliative treatment might help someone to live longer and to live comfortably, even if they cannot be cured."

I do hope you and your husband get better. I can only imagine what you are going through... I will have my results the 21st of July but if I had bad news I think the most important thing and possibly the only that could give me comfort is having my wife close and strong. Try being strong for him.

And remember, we are all here for you both, when you want to talk.

Hello Barney53,

Just wondered what your Oncologist said on 4th August? I hope it wasn't too depressing. I have to say I am not enamoured with the treatment from NHS my father has received. There seems to be no sense of urgency whatsoever. 

Can I ask what pain management your husband is receiving as my father has constant pain in his penis from the long-term catheter insertions and cystoscopy. How he can live a life these last few months is impossible as he cannot walk far or do anything.  

Hi BaggyEyes,  saw the Oncologist and he told my husband that he was going to start chemo in 2 to 3 weeks.  That would make it this week or next.  He said he may also try immunotherapy but to see how the chemo works first.  Without the treatment he would live for months and with hopefully a year.

Well last Thursday my darling husband started to get very confused and looked as if he was having mini fits every now and then - his eyes would roll back and his arms would twitch.  Contacted the hospice pain management nurse as she had increased his meds and, just in case it was the meds, she reduced them back down again.  By Friday morning he was having these episodes every 5 to 10 mins and was even more confused so the hospice nurse came out to see him immediately.   She was very concerned and rang the GP surgery and said my husband needed a GP to visit him at home and no he couldn't go into the surgery.   So we waited.   A few  hours later the senior GP rang and asked whether my husband really needed to be seen; whether he had signed an intervention order; and whether I thought he should go to hospital or not.  To which I replied yes he does need to be seen; no he hadn't; and how did I know as I wasn't a doctor!  Anyway an hour later a locum GP and nurse practitioner turned up and automatically started to scan his bladder to check he wasn't retaining urine.  I said that wasn't the reason for the call as he was constantly dribbling bloody urine and was wearing pads and that I had called because of the confusion and twitching.   They took bloods and said they would call the hospital and would then call me.  An hour later I got a call and was told to take him to the hospital and they knew he was coming but no rush.

So I took him to the hospital, a nurse triage him and then he went to the ward.  An hour later a junior or student doctor came to see him and I tried to explain that 2 days before he would have been chatting to her and most likely joking with her but due to the confusion that she could blatantly see (and the twitching) that he just wasn't right.  He did have short periods of lucidity but not long.

Anyway the doctor said that she would speak to the consultant and make a plan.  That was the last I saw of the doctor.   Several hours later I had to leave the ward to ring my Daughter as there was no signal in the ward to ask her if she would go and feed and walk our dog.  When I got back, my husband had been given a  ham sandwich and a pot of jelly and a pot of ice cream.   In a moment of lucidity he told me that he had asked for the ice cream for me so that I had something to eat but I actually put both in a bowl and for the very first time I had to feed him.  An hour after that I asked a nurse what was happening with my hubby and she told me that they were planning for him to have a CT scan of his head as none of his previous scans (ct and pet) were only done from his neck down and this was going to be done either that night or the next day.  I left the ward at gone 7pm and gave him a hug and a kiss and said I loved him and would see him the next day.  He kissed me and said he loved me too.

I went to sleep about 1.30 on Saturday morning and was woken by the phone ringing at 2.15.  It was the hospital saying that my husband really wasn't well and the doctor in charge thought it best if I could come to the hospital as soon as I could.   So I got redressed and drove the 10 miles to the hospital where they told me that they had gone to take him obs during the night and had found that he had died.

As you can imagine I am absolutely inconsolable,  he was supposed to start chemo and he was supposed to still have time with me, our daughter and granddaughter who adores him.  Why did none of the scans include his head?  Why hadn't he already started chemo?  He had to wait so long between tests and treatment etc.  I'm angry.  I have lost the love of my life and my soul mate earlier than he should have gone due to lack of urgency.   This has been the same the whole 6 years he has been suffering from this horrendous disease,  constantly having to chase them.  We knew that this cancer would get him in the end but I feel so cheated out of spending the last precious moments we could have had.

Hubby ended up on Oxycontin 30mg slow release tabs 1 in the morning and 1 at night and an instant oxycontin liquid when needed.  He also could take paracetamol or co-codamol 4 times a day.  Right at the end he said he wasn't in pain but I can say that up until then he had the same as your Father with the pain at the base of his penis and also in his shoulder, although the meds had started to work a bit and so he did have short pain free periods.

If there is anything I can say is to fight for your dad, ask for strong pain meds, ask for them to do a full body pet scan, challenge delays in treatment and don't take no for an answer - be bloody difficult if you have to. The hospice pain management team were brilliant (we don't have Macmillan pain teams in our area), and they prescribed and amended his pain meds over the last 3 weeks to try to sort out his pain and to them I will always be grateful.

Just today been told that the death certificate is going to say that he died from bladder cancer metastasis in his brain.  Not sure really how they can confirm that as they didn't scan his brain, but as I don't want to put his poor body through any more and because I will not gain anything by doing so, I am not going to argue.  I just don't have the strength left in me.

I really hope that your poor dad receives the treatment and pain management that he deserves and I am sending you both my love and huge hugs.  

There are no words nobody can say. I feel so sad. Please accept my sincere  condolences. 

Oh Barney. So so sorry. Once again medics who do not credit patients or relatives with the very slightest medical understanding. Awful. Hugs and my few tears rolling down as I type for both of you, and your daughter and granddaughter and family.

Denby

Thank you.  There are no words. I am so lucky to have my wonderful daughter; son-in-law; mum; dad; mother-in-law; sisters-in-law; and especially my 2 year old granddaughter who can still bring light to my life and we are all grieving together.   I really feel for anyone who doesn't have anyone else to help them and who has lost someone as I would not have been coping at all alone.  Just having someone to make sure I eat and am not left alone has been so helpful and of course talking to others who love my hubby as much as I do really helps.  

Thank you Denby that means so much xx