Worried & scared

Hi Amanda

i am in a similar position to you as my husband was diagnosed with terminal cholangiocarcinoma in October 2019.  For years he suffered with ulcerative colitis which progressed to Primary Sclerrosing Cholangitis which in turn affected his liver so badly that he underwent a liver transplant 13 years ago, but still suffers with ongoing liver problems  ... a small cancer was discovered at the time of transplant but there had been no recurrence until this fairly recent development ... he has been through so much that he has all but given up now, lockdown depression has made everything worse!

We haven’t been out of our house in 11 weeks except for two trips to hospital, it seems that tomorrow (June 1st) he is allowed out once a day but I am terrified of this virus and don’t want to go anywhere ... he is 73 and I will be 69 in a week or so, and we have been married for 40 years ...  I struggle to comprehend what has become of our once happy life together, and I expect you feel much the same, all we can do is carry on and do our best ....

Hello ladies. 
My hubby has myeloma so I understand your worries.
I haven’t been able to comprehend how one day we are indoors the next we can go out but we have decided to dust off his mobility scooter and from today he will accompany me to the edge of the village to exercise the dog. He’s been indoors for the full time apart from hospital visits and I chose to fully join him on this part of our journey together so have only been away from him when I walk the dog each day. 
We long for cuddles and big hugs from our great niece and great nephews but have to wait a bit longer. We have found simple ways of enjoying our new lives together from playing scrabble, having our coffee and meals in places we have visited in the past - we take turns to describe our “surroundings” and the other has to guess where we are, we’ve signed up to a couple of joke pages on Facebook (the Tim Vine one is funny), we’ve had lovely conversations through the fence with passers by who are making sure we aren’t too lonely.

Hubby was 76 last week and I’m hurtling towards 68. Like you don’t know what’s going to happen but for now we are staying close and just hoping for the best. Oh and I signed up for the Calm app which has helped a lot.

Best wishes 

June

Hi June,I love your idea of the joke pages!  
My husband always used to have a wicked sense of humour and would see the funny side of everything, but that was in the past, this illness has changed him so much ... I can totally understand why, but I feel that part of him is gone already.  He is consumed by everything that is wrong with him, while I try to keep life as normal as possible and conversation light.  I don’t know if that is the right way to deal with things but it works for me and keeps my thinking level ...

My hubby is so changed too but for the most part he seems content.
Last week we had a massive power cut on the estate and the work went on all night, one casualty was our tv box so I arranged a new  one and fixed it up but that upset hubby as normally he would have done it. I replied that I was upset too because of all the things I’m now having to do for us whilst coping with my own poor health and snapped that I wasn’t  moaning. We both got a bit shocked by me being cross but then got on with it.  We also had noticed it was a year since we’re on holiday on the east coast and he quietly remarked that he could walk then. It was very sad to know how much he has deteriorated but I keep thanking him for staying with me.

Keep safe and in touch if you want to. I’ll be here till the 19th when we go to hospital again ha ha. 
June