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My husband has terminal bowel cancer

18 Mar 2017 18:31

Well apart from episodes of uncontrollable crying there are periods of calm. I'm frightened, scared and lonely. People don't know what to say to us.  He may have a year but I think considerably less.

luckily we can speak very openly about this and agreed not to hold back on anything. Hence the uncontrollable crying.

We have started getting wills updated and financial matter in place early so we can try and live as normal a life as possible. 

But how? He wants to start getting rid of his cars and garage contents, unfinished hobbies as he doesn't want to leave it for me. I say don't waste precious time. 

How have other people coping in this situation. I would love to hear from anyone in similar situation.i feel that counselling would help so I can get all my angst out. Has anyone done this and did it help? Desperately sad.

Re: My husband has terminal bowel cancer

18 Mar 2017 20:23 in response to Cathycrafter
Hello Cathycrafter, a frivolous question first, are you a crafter if so what is your interest. Down to the nitty gritty, my then 34 year old son was diagnosed with stage 4 bowel cancer and secondary liver cancer with metastes in all lobes at the beginning of May 2016. He had his tumour removed at the beginning of May and go married ten days after the procedure. The wedding was preplanned . His oncologist was truthful with him and said that his prognosis was poor but there were trial drugs that he could take along with other chemo for bowel cancer. Six weeks after op he started chemo every second week with a three day stay in hospital. There was always the hope that he would defy the medical odds. The first trial drug gave his dvts, and was stopped, the second had a brief period of hope and ceased to be effective beginning of November, alternative treatment SIRT was discussed and he went to Manchester in December to be assessed, He was not well at this time. It was discovered just before Christmas that the chemo had so damaged his liver that he was in acute liver failure. Before this news he had already been organising all his affairs, selling stuff that he did not think his wife would want. Once the diagnosis was given that he had only weeks to live he went into overdrive, he was on steroids, hardly slept, got all financial things sorted out, Let his wife know what he wanted doing with all his many belongings, boats, tractors etc and all his tools, arranged his funeral. We had a belated birthday for him on the sunday, on the Monday he was still organising his brother in law to do the manual things that he could no longer do, he had a massage on the Tuesday, went to bed and died on the Thursday with all of us with him very peacefully ten days after his 35th birthday. I think everyone has their own path to travel with cancer, both the sufferer and those of us who love and care for someone. Everyone has to do what they are able and want to do, there is no guide book. I wish you and your husband well for your future. The months that we had we made the most of, as long as he felt well enough, we had days out, went out for meals, had a weekend away in aviemore two weeks before he died. His wife and him went to Skye. That is what you have to do, take lots of photos and enjoy the precious time. love lesliexxx

Re: My husband has terminal bowel cancer

18 Mar 2017 22:29 in response to Cathycrafter

I feel for you so much. My husband died two years ago. We spoke a bit of what he would like for me after he passes and I have done lots. Some almost immediately. Like move house and location. It was right for me but please don't make any rash decisions. He was too ill to get rid of his garage contents and unfinished hobbies. That's something we had to wade through afterwards. 

For you though life together still goes on and if he wants to tie up lose ends then I guess it's his way of keeping going. It's not where you are or what you do that makes a difference. It's that you are together. The one huge thing I miss is his hand holding mine. I watch people all the time holding hands and putting arms around each other. I miss that. So just get as much of the simple things in life while you can. Don't look at the future just the here and now. My heart goes out to you. 

Re: My husband has terminal bowel cancer

19 Mar 2017 09:44 in response to Sssbbb

My husband died of bowel cancer which had spread to the liver, we didn't know he had it, I'm annoyed he was sent hone from A&E on two occasions, I wonder weather anything could have been done if they had picked this up straight away, it was such a shock, there was not even time to diagnose, we had no time to discuss anything and I'm left feeling very sad and lonely, he was 68 a builder and very fit I am 58.  He was my rock as I too have advanced stage lobular breast cancer, he was always there for me. I have lots of good friends and a lovely daughter who is 24, but it's just not the same, like you I miss him so much. My poor daughter feels she's lost me already, we are both struggling. 

Im normally a happy person now I'm just sad

Re: My husband has terminal bowel cancer

20 Mar 2017 14:36 in response to sadmum

Oh Leslie ! I feel so desparetly sad for you losing your son. I too have a son about the same age and I know both my husband and I would swap places in an instant  just as you probably would have done. It is stories like yours that put my sorry tale into perspective. My husband is 64 and up to now has had no health we have been lucky.  

Maybe dealing with the belongings that I know nothing about will be what he needs. It seems your son gathered some inner strength to do all that. We are only at the start of the final journey and while we know where it will end we don't know the twists and turns along the road.  I suspect that we may well follow a similar pathway.

Thank you so so much for taking the trouble to reply. Yes I am a crafter! Started with knitting and needlework and introduced to paper crafting by a dear friend. Will have a go at most things and as I have a shed to work in at the bottom of the garden I find it very relaxing and destressing in the green quietness. This now all has become insignificant at the moment, but hopefully I will rediscover it. 

we have both recently retired and fortunately we have completed our bucket list "while we were still fit enough" and was just content to be home and potter. Thank you again replying. With love to you and your wonderful supportive daughter in law. Cathy



Re: My husband has terminal bowel cancer

20 Mar 2017 14:50 in response to Sssbbb

Thank you for you encouragement. Everything you say is what we are going through. I too will have to move house but I intend to not rush things. This has been our family home for 35 yrs. I wanted to move when our children left home so we could have a home that we could create new memories together in. He never wanted to move so we have stayed.leaving here will be hard.

Being together is important at the moment. We can say anything we want, nothing out of bounds. I miss him already and can't imagine life as a single person. I have never lived alone. He is frightened of leaving me and our sons behind. X

Re: My husband has terminal bowel cancer

20 Mar 2017 14:59 in response to Cassilda

thank you for your post. I am so sorry that you now have to deal with your own illness. I wish we could all get together in a huddle and cuddle each other. I have a saying pinned to my fridge that says " I walk around like everything is fine, but deep, deep down inside my shoe my sock is sliding off" pretty much how I feel most of the time now.will keep you and your daughter in my thoughts. X

Re: My husband has terminal bowel cancer

20 Mar 2017 20:19 in response to Cathycrafter

Dear Cathycrafter

Please dont say it puts your sorry tale into perspective, every story is so sad and is relative to the people going through their own battle with this disease which has no boundaries to sex or age.  I sometimes refrain from commenting as i do not want to bring people down when they read that Jonathan lost his fight with cancer.  I also joined theMcmillan forum and there you can join groups relevant to the cancer that you and your husband are dealing with.  I joined bowel cancer group, secondary liver group and caring for somebody with cancer group.  I found this to be helpful as you were making contact with people going through the same treatments etc.  There is somebody on this site whose mother is still alive 7 years after a diagnosis of incurable bowel cancer with secondary liver.  She has had a resection and the palliative chemo is keeping it at bay for her.  What I am trying to say that there is an element of hope in all situations.  My husband thinks that i should not visit these sites since my son has died, but I hope that occasionally i can help somebody.  The Maggies centres are amazing places, they have people there that you can just talk to or make an appointment and speak to a psychologist.  I found the design or our Maggies in aberdeen to have a very calming atmosphere and the people that you talk to, some experts in particular fields or somebody like me calling in for a cuppa and speaking to people in similar situations.  I always believe that talking helps.  I too am a papercrafter and dabble in mixed media, my appetite for this has wained somewhat over the past 11 months but have had a tidy up and am trying to get back in the creative mode as my son said he did not want us "moping around" when he was not here to crack the whip.  Hope you dont mind me replying but I know how dark the despair can be and wish I could wave that magic wand for everyone. love lesliexx

Re: My husband has terminal bowel cancer

21 Mar 2017 11:45 in response to sadmum

How sweet of you! I think maybe I'm reading these sites too much to! But the reason we all start is just looking for someone in a similar position. To give us hope, to answer questions , to say the right things. I found what you said very moving and as our sons are of a similar age it hit a nerve. These sites still need people who have gone through it and out the other side. We need someone with the experience as I think nobody knows what really like unless you have lived it.

My crafting stuff is also in a mess in the shed. Just can't get my head around doing anything but  sure I will eventually. Just found my library is selling cards and bits for charity. This might give me the excuse to get started again.

Please tell hubby that you have helped me no end and I suspect many more! X