I haven’t posted for a while so just wanted to check in and see how you are all doing. I’m ok 2 years since diagnosis of Chronic lymphocytic leukaemia (CLL) and my recent review shows that my bloods are relatively stable so I’m now on yearly review . My fatigue however has become significantly worse since the beginning of the year leading to my decision to retire. I have been a nurse in various roles for over 46 years so this is quite a big deal for me but definitely the right decision. I am 3 years away from pension age so will have to rely on my NHS pension but will make it work. I applied for PIP but was refused apparently it’s not the diagnosis you have but the way it affects you ! I’ve also been working with leukaemia UK who asked if I would share my story to raise awareness of signs to watch out for etc. so that involved a radio interview and some newspaper articles. My story will be in the That’s Life magazine on 11 th July too. TBH I was a bit wary about the magazine but they reach such a large audience and apparently people respond more to a true life story so I agreed. It’s a bit cheesy compared to newspaper articles but I guess if one person relates and visits their GP then it’s worthwhile. I have grandchild number 5 arriving in a couple of weeks so very exciting Would love to hear how people are getting on
Wow @KayC, you have been busy. It’s really great to get an update.
It must be a huge change following retirement. Although it doesn’t sound like you’ve had much free time.
What are you planning to do, any plans or hobbies that you’ll now have more time for?
All ok with me. Also on yearly appointments. 7 years on from my diagnosis now and still good and bad days but it’s just about being kind to yourself isn’t it!
Please post links to any articles - sharing stories is so important and I’d love to read them!
So lovely to hear from you
Oh @KayC great to hear from you again and what you have been getting up to.
I will copy the link from Blood Cancer UK website on fatigue Blood cancer and fatigue | Blood Cancer UK
However it is my favourite subject and if you need any other experiences I am your girl.
I also have had fairly stable blood results and I am on 6 mthly blood tests, although I still get anxious before and during tests, appointments and results.
Thank you so much for what you have been doing to raise awareness of leukaemia, but actually all blood cancers.
I am impressed with your leaps into social media. I really agree that a true life experience resonates so much more.
I was lucky enough to get a win-win package and I retired early after 40 yrs of working.
I have never looked back although in retrospect I joined to many local groups and took on commitments too.
It took me Covid times to reassess what I was actually enjoying and at 70 yrs age I learnt to say ‘NO’ and the relief was wonderful.
You have obviously re-assessed your life to and I agree family and good friends are priceless, you can never get the years of grandchildren back again.
Yes, life is good my 70th birthday was my best ever.
Give yourself time and perhaps enjoy what you want to do and with whom and please keep posting.
Good to hear from you. My husband and I
Joined a spa/ gym shortly after my diagnosis as it’s something we can do together to try to stay fit as well as relax so I’m doing that. I’m lucky enough to have a lot of friends some who I have known from childhood and others who I have met over the years during my career so I have a good social life. Also the grandchildren keep us busy. We love to travel so having some nice holidays. I find the travel harder these days so we think about locations and travel time a lot more carefully these days. I will try to send some info regarding the interviews and articles I have done but I’m not the best at IT. The one in That’s Life next week
Is the last as far as I know. The press office at Leukaemia UK have led on it and been very supportive.
Wow @KayC a spa/gym (sounds good to me), family and friends (priceless in my book), grandchildren (a joy), travel/holidays (fun), interviews/articles (I admire you).
I am worn out just reading your post.
So glad you have posted and told us what you have been up to.
Enjoy life and look after yourself and please do keep posting
