Call for more support for those “living with dying”

Categories: Opinion.

I am angry.

I’ve just spent a great weekend with friends, listening to their plans for the future, and now I’m just feeling cross and unsettled.

How I envy them. I am unable to plan more than a few weeks ahead as I never know when my latest treatment will fail and my condition deteriorate.

The only thing that I do know is that I won’t be around to watch my friends achieve the goals that they are planning. They talk about retiring early and the life they hope to be able to live – how great it will be to not have to work and be at leisure.

I hate them all. I loved my job and, although hard work, felt I contributed something and that made my existence worthwhile.

Having to retire early was not a dream and, although I strongly believe having stopped work has contributed to my staying around as long as I have, I am still devastated in losing my career.

I enjoyed earning a reasonable wage and contributing to our lives with plans for the future all ahead of us and in reach. Now I receive a pension and have nothing useful to do all day.

We are fortunate in that even with me retired we can still afford to do lots of things – which is wonderful – however all our plans for the future have had to be shelved and we now live in a no man’s land of waiting.

I think the situation is making me rather bitter.

I guess many of you feel this is not surprising given everything that is happening but I’ve withstood many things in my life and have never ended up feeling as I do now.

I used to be pleased when friends bought new things, upgraded their homes or cars or went on holiday. Now I just feel jealous and then guilty for feeling that way.

It seems that for us the only way is down, with me able to do less and less and be more dependent as time passes by.

I also do sense some envy in my friends because I don’t have to work and spend my time apparently doing what I want and at my own pace and I guess that’s to be expected however I just want to scream at the unfairness of it all.

I’ve always believed in being fair and to do unto others what you would expect them to do to you but I think I’m becoming a miserable, jealous old cow wishing ill on those around me.

They get to live lots more of their lives and achieve more of their goals than I will ever get the opportunity to do and when they moan, as everyone does, about the things that they are not happy with this just makes me even more cross.

I don’t seem to have any patience now, listening to the minor irritations in someone else’s life, as it all seems so inconsequential for me facing an early demise.

This makes me lack empathy and, at times, keep my own company as I can’t be bothered with the inconsequentialities of others’ lives.

I had formed a mutual support group with another cancer sufferer who was also terminally ill and had similar attitudes to mine. We were able to talk openly about living with the disease and dying and found humour in the irritations of being in this position and this helped me greatly when feeling angry or upset.

Sadly my cancer buddy has recently died and I am now able to see what is in store for me at the end.

Her death was a good one and it has helped reassure me that things will be OK with the support of the hospice at my end but I need help to carry on living as well.

Many people with a terminal diagnosis must feel the same as me, with their lives on hold and no clear future.

It would be very useful for hospice and palliative care services to review how they could support us, not just at crisis points but earlier in our remaining lifetime to help overcome some of the negative feelings associated with being in this position.

I’ve had some recent good results from a CT scan that have reassured me I have more time left than I thought and this is making me less angry for the moment.

But I know that these feelings will return and that there is a gap in the services available to support me, especially following the death of my cancer buddy.

I’ll manage, but it would be so much easier if those services were there and provided by those with appropriate experience of issues for those who are living with dying.

In my opinion this must be something that hospice services are best qualified to provide and moves need to be made to develop services and achieve funding for them to be available for the increasing number of people who are now living with terminal disease.

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