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Living beyond what the Doctors thought with rare cancer PAWS/wild type GIST and Hodgkins Lymphoma
After reaching a tipping point after many many years of coping in my own way with this nasty clingon that is cancer, I realised I needed help. I felt lost and just couldn’t see a way through how I was feeling. I went to counselling at my local Macmillan Centre and it has been such a positive experience for me, although I will also admit that it was so much harder and revealing than I had anticipated. Over the weeks I was able to voice some of my most deepest thoughts. There was also a thought that I didn’t want to say out loud (and will never do) and using tools such as emotion cards helped me to air that thought without saying it and that was a huge turning point. It was (please excuse the cliche) like a light was turned on.
As I have said in a previous post I have always set goals to reach, which is great as it has helped me through but it’s not suitable now as so many things have changed so what do I do; I tell you what I do - I just ‘Be’!
Now that may sound slightly odd but it has really helped. That one word is how I am taking each day, not looking ahead just seeing the moment. Since having to give up work, I have had people ask the question “What have you done today?” It made me start to think I was wasting the precious time I have if I didn’t really have an answer but that is wrong, I’m not! What I am doing is keeping myself as well as possible to make sure that I get as many days with my family as possible. I know that everyone has different ideas when diagnosed with terminal cancer, some need to make a bucket list, some need to travel to places they have never been and some (the really extraordinary people out there) make it their goal to make a difference and raise amazing amounts of money and everyone is different and takes a different approach and that’s ok, but me, well I just want to ‘be’.
And it’s ok to do that and not beat myself up about it. If I sit there for an hour watching people take a walk with their dog around the reservoir that our back garden backs on to - it’s ok as it’s what I want to do. It’s not a waste of time it is enjoying that moment, it’s also giving my body the rest it needs. Sitting watching the rest of the family enjoying a Sunday Roast dinner together with me not playing cook and host is also ok and the reason why it’s ok just ‘being’ because while I am just ‘being’ it means that I am still here and that is the most important thing.
Thank you for saying it's ok to just be . When I was first diagnosed with cancer my husband and other family members we're telling me I needed to start doing things on my bucket list.
I like yourself responded I do not have a bucket list I am perfectly happy just being .
Your post really helped me to not feel like I was wrong .
Wishing you well
Your post rings very true for me. As I don't work, I'm sometimes asked what I do all day and I find myself a little embarrassed if I can't provide a list of worthwhile things that keep me occupied. You're so right... just "being" is often enough. Getting through the day and onward to the next one is an achievement, and doing it in a way that brings a little joy (now and then) to others is definitely worthwhile.
Even healthy people need to embrace this, I think. I recall in my 30s always feeling I had to be doing something useful with my non-working hours. It's even worse these days, in this "always on" world.
I shall try to remember what you say and just "be" more often :-)
Your post resonates with me in so many ways right now x
Wishing you all well and a lot more time of just ‘being’ in whatever way you choose it to be :-).
.....written as I sit in my reading chair having a quiet 5 minutes of nothing in particular ;-)!
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