First Blog

Evening BewilderedWife

I\m so sorry to read about you and your husbands long time nightmare scenario.

I can understand passing up on some of the treatments offered, but refusing all is fairly uncommon :(

I'm afraid we're just on the way out for the evening but I couldn't read this and not reply in some way.

There is a very active Carers Group here (link) you should check out. If after having a look at the group and hopefully joining, do create a New Discussion and copy your blog text in then post it to the group.

I'm sure you will get several replies, possibly some from other carers whose partner has also refused treatment and can give you more experienced support or advice. I'm sure even chatting to others about this may be of some help to you.

Hope this is of some help for now, take care, G n' J

So sorry to hear your story,I decided not to have any more treatment when the bowel cancer went to the liver,but I am 80 years old and decided to live my life without anymore hospital visits,my son argued with me but eventually accepted my decision and so did my very large family,since then I feel much better and the family have learned that to accept my decision has made us closer.But if I had been younger when I was diagnosed maybe my decision would have been different.I hope your husband can find a way to cope with this nightmare and you should get help too in coping methods.I don't expect this blog helps you very much but maybe your husband just needs a little time before he seeks help.

Thank you for your replies. I will look at the carer community. 

Hi, there are a few similarities between your husband's situation and my own so hope my experience may help give you some hope.

Apart from being 10 years older and single, I was also diagnosed with Stage 3 bowel cancer in Dec 2014. As you know this is a real wake up call and forces out of the blue a complete and very fast appraisal of everything in your life. After much agonising I decided I didn't want to go down the route of surgery, colostomy bag, chemo etc and a life half lived in hospitals! I was absolutely cool about this decision. Most of my friends understood my decision but some really did not and shouted and screamed at me and I realised that life was going to be untenable unless I bowed to their wishes.

I then agreed to the surgery, refusing pre-chemo, and asking that all measures should be taken to avoid a bag. I had a great, able and kind surgeon who did a brilliant job. He told me 13 out of 25 lymph nodes were infected and I've since discovered I'm also EMVI +, none of which is good.

I was amazed how quickly I was doing everything again, and started back to work as a gardener 6 weeks later ( being active and gardening is meant to be one of the best things you can do). I was started on Chemo (Capecitabine, an oral chemo you take at home), but only lasted 2 days on it before being back in hospital A&E with the rarest side effect and was immediately taken off it. This was really the worst time of all as I'd told everyone I was having to have chemo and the much better life expectancy with it. My Oncologist confirmed I was being taken off by phone early on a Sunday morning and that as there was nothing else they could offer me, discharged me and said he was referring me back to the colorectal team. (I was later told a colorectal consultant chemo would only have made a 5% difference anyway so he wasn't at all bothered).

In desperation I saw a healer as nothing else was on offer. No idea if it actually helped me physically, but it most definitely did in other ways, and maybe this is what your husband is seeking. It also kept family and friends happy that I was doing something positive.

After that, everything fell apart as far as my cancer follow up was concerned. This was as bad as I'd initially feared, and no amount of speaking to people and flagging up I wasn't happy seemed to make the slightest difference. In the last year all the team have had to do for me is to organize a CT scan which should have been done in early January and still hasn't been done. We've now parted company and for the time being I'm without any cancer care apart from my GP. They are suppose to be referring me to another hospital.

Am I falling apart...absolutely not! I haven't felt so well in years ( as long as I manage to escape the hospital-induced stress), I'm really really fit, happy and thoroughly enjoy life. I've made some wonderful new friends who also have cancer and most definitely look to the future. Having cancer has to some extent allowed me to look at things a little more differently but having cancer is not something I ever really think about that much.

Your husband doesn't have to agree to everything on offer from the hospital, some of us don't. Surgery sounds appalling but in my experience has been remarkably straightforward and you quickly learn to live with things.

Please don't allow this to form a rift between you both, I think a cancer diagnosis may be worse for a partner than it is for the person who has it! No wonder you're suffering constant worry and stress and he's aggressive and prone to mood swings.

Love and all best wishes to you both, between the two of you, with love and respect for your differences you can work this out.

Thank you for your reply.  When my husband was first diagnosed we did all kind of go back to a normal life because it was easy to forget.  He looks so much different now though and although I understand his decision regarding quality of life I am struggling with the constant unknown about how far it's gone and whether he'll suddenly be in a lot of pain.  After his last scan they were supposed to call him back in six months but they didn't and that's now 18 months ago.  

Thank you for telling me your story.  It helps to know we're not the only ones in this situation.

Best wishes and keep well.