Overwhelmed - pancreatic cancer stage 4

[Traci-Renee]

Go where your ❤️ Takes you!  Hope you had a better day today Patches.  It’s incredible how strong we can be when we have to.  You are an amazing wife.  

[Patches]

I took the day off work on Thursday and gave myself a TLC day.  My stepson and I visited my husband that afternoon and things were looking and sounding good including within himself ..... all that changed yesterday.  Prior to speaking to me a palliative care doctor told my husband that when he is discharged from oncology ward in the hospital he will be transferred to palliative care unit at facility in out same town for 2weeks.  Later hat morning via phone calli was told the same thing.  There was no consultation in the decision.  Things I told that doctor ...... my mother in law died in that exact unit only few yrs age from cancer, my husbands cancer has ignited the grieving process from loosing his mum so this was not good option or thoughts ..... we were told on Wednesday he would be coming home upon discharge ...... he is already quite depressed and sending to that unit would only make his depression worse.  When I asked why they want to send him to another hospital type facility I was told it is best place for him to do rehab to help improve his stability on his feet, his mouth ulcers are still healing and that they have nursing staff on deck.  I queried why can he not come home and have physio either attended our home or he be driven by me to local community centre from rehab - there was no immediate reply.  Doctors has written in his chart in hospital that he is to be given Cochin mouthwash before each meal, salt water mouthwash after each meal and antiseptic mouthwash 3times each day.  I queried if this has to be done by nursing staff and was advised it could possibly be approved to have few days of each at home for me to give him.  When I mentioned I can be on leave or 2 weeks from date of discharge from hospital and that there will be my husband plus 3 or 4 other adults in the house to assist for at least 2 weeks hence I don’t understand reasoning to make decision to send him to facility that is only to cause more stress and anxiety for my husband and his family the only reply I got was,...... we might have to look at the decision again.  When I got into his room last evening my husband was obviously quite distressed and upset.  Nurses had given him heat pack as he couldn’t get warm.  When I tried to leave about 7:30 last night he begged me to ask the nurses for blankets and pillows for me so I could sleep in his room, he didn’t want to be alone last night.  I finally left his room about 8:15 when he was almost asleep.  He was laying under 6 blankets but said he was still cold ...... the shock to his system was affecting him so badly.  His day shift nurse who I met last evening was so caring, she came into his room and told him that she was going to dinner but would be back soon and would see him before she finished her shift.  She noticed he was getting upset and immediately grabbed his hand and held it while she calmly logically talked him through the upset.  She came back to his room just before finishing and asked if she got help either of us with anything........ most of his nurses have been good but that one yesterday was amazing in her level of care and ways of comforting him

[kj]

Patches

it is very sad what is happening with your husbands health,it would be depressing to go to the same place his mother died,it certainty would increase your husbands depression and have a bearing on his overall health.

Surely the mouth ulcers could be managed at home by yourself and the  pain meds looked after by the palliative team,sometimes you need to stand your ground if that’s what your husband wants,it is all about quality ,now that Chemo has been stopped,he is definitely not a quitter no such word for any one dealing with cancer especially pancreatic.Has there been any mention of Ascites.

I hope he’s feeling a bit warmer.

[BJO67]

Hi Patches

No medical person has the right to make that decision for you.

The patient has full rights. If you wish to take your husband home and he wants that also...the Drs must comply with your wishes. Please do what makes him happy. 

There is always home nursing available.

[Patches]

Only health issues I have been told about are his cancer, cellulitis, odema in both legs (that appears to have been there for decades), AF (but he is not on medication for this), ongoing chest infections and currently mouth ulcers.  Only other things that I have been tol is his potassium and phosphate are low, he is slightly unsteady on his feet and for last couple of days wants to sleep for majority of the day.  There was discussion with him by a dr about a PEG but nothing else.

[kj]

That’s encouraging they have not mentioned Ascites,hopefully they can get on top of his chest infections,poor chap he does have some health issues.

[Patches]

Nurse today advised he will have blood transfusion this afternoon as both red and white cell count is slightly below acceptable level.  She advised notes on file re potassium etc is about topping him up in preparation of discharge to home this coming week.  She advised I will be advised on morning of discharge when decision is made but is most likely to be early week as compared to late week.  

[Patches]

He is to be discharged tomorrow....... now to gradually try to heal the mind, get him with his anxiety and build up the physical body.  Seeing a grown man of mid 60’s cry ini gets like a 5 to 10 year old child because he couldn’t come home on day he wanted  and to see him emotionally fighting with the tears each day for last 5 days has been so draining

[Lindsay]

Hi Patches,

I’m sorry to read about your husband’s situation. Firstly & most importantly, his cancer is shrinking very well, with the chemo. I hope he gets through the treatment soon. Secondly, has the oncologist given him / you an expectation of what life ahead looks like following the chemo?.

what prompted the initial doctors appointment & subsequent diagnoses.

I went to my GP depressed after my wife died. I was healthy, into distance running and working full time. Three days after getting blood tests, at my GP’s request, I was off to RNS for more test & diagnosed with a “pancreatic neuroendocrine tumour”. I have fantastic medical support, however, I’m a physical & mental basket case. I often wonder what would have happened, if I didn’t get that diagnosis.

I really do hope, for your husband sake, life can return to a little more like it was. For you I wish you every strength, courage and the support you need. It’s tough for the partner & unfortunately, sometimes undervalued.

[Patches]

Initial refer to hospital for tests from gp was my husband had been treated for gastro on and off for 6 to 8 weeks but wasn’t getting better.  Night before we saw go he said his abdom hurt and he just felt tired and unwell.  He went to bed early, the morning found him no better.  Gp referred my hospital for abdomen scans in search of answers.  Scans found blood clot in base of one lung and tumours, 1 in pancreas and 4 in liver.  After 3 days he was discharged and about 1week later in outpatients we were told he had terminal pancreatic cancer.  His oncologist has agreed chemo isn’t working for my husband and is actually destroying his body.