End of a short journey for my husband

[Carol Jane]

Yesterday my lovely husband of 35 years passed away peacefully at the local hospice with my sister and I holding his hands. He was 59 years of age and so full of life and enthusiasm. 

 

Our story is similar to others that I have read in the past few weeks and sharing them has helped me feel I had some knowledge to deal with this and help support him.

 

Jon had survived 2 bowel cancer operations (first aged 26 and then pre cancerous growth picked up by routine endoscopy in 2019) and made a very full and active life for both of us. He was well respected at work, we had a happy marriage, were able to travel and had many friends through our hobbies. 

 

He had abdominal pains from January of this year and promptly booked a telephone call with our local GP. Unfortunately appointments were only being offered 3 weeks apart and only by phone. We have since heard that our local surgery has expanded, bought up other surgeries and possibly over extended their capacity to see or speak to patients.

 

We had asked for genetic testing after the second surgery, partly as Jon's Mum was adopted so we did not know all the family medical history. He was diagnosed with Lynch's syndrome- although a genetic mutation rather than hereditary. We knew this came with a limited life expectancy however there did not really seem to be any further advice at the time. The syndrome made him at risk of future cancers. 

 

My husband had told the GP about this syndrome however he was still 'investigated' for IBS, gallstones etc whilst having these short 3 weekly phone appointments ( 5 minutes or less) . We were busy with life, work and some covid delayed trips abroad. However, Jon was regularly following up with the GP, who did not seem too concerned.

 

In May we found out that the ultrasound scan that the GP had agreed to refer Jon for was taking 9 weeks at the local hospital. I have just read yesterday that the referral time for a scan for possible cancer is still meant to be 2 weeks ( although this was a different NHS trust) So my husband booked and paid for a private scan. This was organised in 3 days.  The scan showed lesions on the liver.

 

Suddenly my husband then got a prompt call from the GP- although my husband had had to insist that the results were reviewed by the GP straightaway rather than getting a standard appointment in 3 weeks time. 

 

Since then so much has happened in such a short time. This included hospital visits, CT scan, meeting with oncologist. His condition- late stage diagnosis of pancreatic cancer with spread to the liver- did just progress so quickly. Chemo was discussed however by that stage Jon was too weak to be considered for it. However, Jon had decided already that chemo for a terminal condition that not provide much benefit was not a route he wanted to go down.

 

I do know that we were lucky in one sense to have 6 weeks together to process this, to make some plans and say important things to each other, family and friends.  Neither of us wanted a long illness for Jon. 

 

We had considered care at home, however due to the need to manage pain levels, were able to get a hospice room. This turned out to be the best thing we could have done. The care and kindness showed by all staff to my husband and to me has just been so important and made his death as peaceful and good as it could be. Strangely, I had been a volunteer at this hospice 20 years ago after seeing an advert in the local paper. 

 

The doctors and staff have said how lovely my husband has been to look after and how well he seemed to cope with this horrible diagnosis. On Sunday of this week, he was still having meaningful conversations with family who had come to visit and on Monday he was still getting up in the night to head off for the toilet on his own. I was able to sleep with him in the hospice room and make sure he was ok getting there and back. On one occasion as I held him- he gave me a cuddle back which was lovely to have, when he was so poorly. 

 

I am so pleased to have had 38 happy years with my husband and that in the end, his pain and suffering was only for a short period. We have found out how many lives he has touched in a positive way through work, raising money for children's education in Kenya and friends from people who have been so shocked at how quickly this has happened. 

 

I am now starting to process a life without him and know there is lots of 'sadmin'...that comes with death ( a phrase I read in an article by Rev Richard Coles). It all feels daunting however I know I have family and friends to call upon. The hospice also offers counselling at a later stage- another helpful aspect of their support. 

 

So just feeling really sad right now at the loss of my soul mate- whilst aware that for some people they do not need that person or may have them for a shorter time in their lives

 

 

 

 

 

 

[Floofmom]

Thank you for sharing this with us at such a difficult time.  It sounds like you had a wonderful marriage right to the end.  It is frustrating when tests and results get held up but it sounds like you moved through all that to make the best of the time you had together.  I had not heard the phrase "sadmin", what a great description.  Keeping you in my thoughts x

[Lornacath]

Dear Carol, you and Jon sound absolutely lovely, I hope your cherished memories together give you strength to help through this next phase in your life. Having family, friends and hobbies that keep you occupied will I know help ( they have kept me sane at difficult times in my life when close bereavement has threatened to overwhelm me). 3 months ago I lost my mum to this dreadful disease and found some support throughout her illness and since her death on this site also.

You sound brave, I will share this post with my dad who is really struggling with life after losing my mum ( his wife of 60 years).

Thank you for sharing, please take care of yourself a little after such a sad loss. Thinking of you and your family and sending you lots of love x

 

[Erin0110]

It's very hard to hear, I sympathize with your situation so much, I hope you'll be ok someday.