This year I decided to remember and celebrate that it is 15yrs ago today since I was diagnosed with CLL. The incredulity, thoughts, feelings, fear, anxiety and shock came whizzing straight back, I could replay the day as if it was yesterday, I am back in the bubble. During the day I might have seemed distant or quiet, although the smiley mask soon goes back on. Up at 6.15 and a contemplative lingering hot, bubbly bath today, Sainsbury’s delivered at 7.40 am, Pilates class at 8.15, Zumba class at 9.15 and then hot chocolate and a natter with the girls. 2 slow cookers on, lunch and a nap. Chores then fish and chips and a toffee roulade (a meal treat for me), then the ‘Strictly’ final, a DVD, hot chocolate and bed. A lovely day. I then wanted to celebrate what opportunities my diagnosis has given me, perhaps the easy one is all the Bloodwise friends I have made and volunteering I have been able to do. I have gained personal insight into myself, my patterns of behaviour, what make me tick and my health. Personally my priorities have changed, health, happiness, fun, home, family and friends are key, I am so much less materialistic. It has been the toughest 15 yrs of my life living with the health challenges of my symptoms and learning to manage them. I have also had many other health challenges to deal with. My fear, anxiety, thoughts and feelings have been uncontrollable a lot of the time, I know I am rambling, but it is just one of those sort of days. What are others thoughts?
Well done Erica,
Funny how you can forget silly things but never the diagnosis days. I think its good to review the journey and celebrate any achievement. Blood cancer is a life challenge none of us have any choice in but what we do have choice in is how we tackle it, accept it and assimilate it into who we are. The journey itself can awake many skills and talents we never knew we had and bring many new friends, so many good things can come from bad ones if you look at it from the right angle.
Congratulations on 15yrs and here’s to another treatment free 15
Wow, sounds like you planned the perfect day! I loved reading your reflection and so glad that 15 years later you are here to share your experiences and support others. Just amazing! X
Thank you Erica for giving me the confidence and hope to be like you. I am newly diagnosed with CLL and trying to put that awful day to the back of my mind. I tell myself that I wasn’t ill before the tests and have never/don’t feel ill now so … therefore I will carry on with my life. Thank you so much, here is to your next 15 years treatment free. Hugs Alice S
Erica, great that it is 15 years since your diagnosis. I haven’t quite reached that but I was diagnosed 12 years ago with Myeloma. I have however been in remission for 10 years which is quite unusual. I do think having a positive outlook helps and like you I do exercise, in my case tai chi and Zumba.
I also found it changed my attitude to life. I found myself spending money on the house as I had to retire early and if I had to be at home more I wanted it to be comfortable and to look nice. As I gained more strength and was able to go on holiday I decided that I would not skimp but do it in style. I now only go to four or five star hotels. I realise I am very lucky in this respect but I decided that I would no longer save for a rainy day as this was my ‘rainy day’.
Life is certainly different since my Myeloma, not least because it affected my kidneys and I am on dialysis. However I think I have become more patient probably because I have got used to waiting in outpatient clinics!
Anyway stay positive and thanks for sharing in this forum. Christmas wishes to everyone.
Hi Joan, holidaying in style sounds brilliant to me, you are really worth it. I also do body balance which is a mixture of pilates, yoga, tai chi, relaxation and balance. I have done pilates and Zumba classes today. They take my complete concentration I cannot think of anything else, it really does my mind good. I am useless at relaxation, especially when someone tells me to empty my mind I find I am still writing a shopping list in it. I am also more patient and my saying is ‘how important is it really’. Thank you for sharing and I hope you keep doing so.
Erica, many congrats on 15yrs! I think that is def worth celebrating. On the anniversary of my diagnosis I celebrated but I also reflected on those who haven’t been as fortunate. On a day like today when I feel so well I have to pinch myself. It’s changed my life, but for the better in many ways. That seems to be the general tenor of people on here. I wanted to wish you all a happy holiday season and to ask if you know where I can purchase the red bloodwise t-shirts that people were wearing when I went to the xmas carols? My family would all like one. I thought I could purchase some and spread some awareness when we are at the gym and similar xxx
Hi, thanks for making the point about remembering all the many people that are not as fortunate as me and those many people who so sadly have not made it. As for the red Bloodwise tee shirts I would advise you ring the Bloodwise Support Line, the details are above and they are also not available on bank holidays. I always think of the tee shirts as walking around with an advertising board on. I wear mine to the gym and try to be near the front in classes. Take care and keep posting how you are.
I called BW today about the t-shirts but unfortunately they don’t sell them have a lovely Christmas Erica x
Hi Joan. Like you I had to retire early, and try to do things in style while we can. Nobody can tell what is round the corner, and so far I have been given nearly 10 bonus years. Each day is a gift and I feel I owe it to all who got me through my illness to enjoy these days as much as possible. One of my favourite films is The Bucket List, because the two men make the most of their last months. Enjoy!
@Erica As usual such an uplifting and exhausting post from my Bloodwise buddy! I don’t know how you fit so much into a day. So pleased you are here and full of good advice. Hope to see you soon
Hi Carina. What a shame that you cannot purchase the red t-shirts. I often think of the people who did not make it. I will never forget the young lady who was also being treated for Hodgkins, under the same brilliant consultant and our treatment was running parallel. We even had PET scans at the same time. Unfortunately she did not make it, and for a time I was so angry as she had so much of life still to experience. There was another man whose bone marrow transplant did not work. He was married for a month, and died the day after I was chatting to him walking down the hospital corridor. These are the people who I remember if I am having a bad day, and then I count my blessings
They’re tough memories to have
Well done Erica. I always celebrate my anniversaries (11 now). I thought I wasn’t going to make it to my 40th birthday, so to still be here at 51 is a huge bonus.
With lots of daily medication it’s hard to forget that had ALL but keeping busy doing things I enjoy with people I love makes it OK.
Thank you so much for sharing and I am so delighted to hear about your 11 anniversary. That is such a huge achievement! For each anniversary every year, do you celebrate it?
I have seen some posts on social media of people celebrating their stem cell transplant anniversaries - have any of you done this?
No! Why would I want to celebrate one of the worst times of my life?! I know exactly when it was (8 years now), but I can still remember how bad I felt. Had Lymphoma again in between- six times now. However, what I do do is celebrate every day of my life that I’m still living with the threat of this hideous disease returning. I will be eternally grateful for the treatment and care I have received, but I try not to dwell on it or it will drive me nuts!
Hi Lulu, welcome, I find one of the real values of our community forum is that I find I can say how I really feel and I know I will be understood. In the outside world I find some people want to make it better, right or fix me. I am also eternally grateful for the care I have received by the NHS, the unsung heroes. Yes, you are so right that we all live with a ticking time bomb and dwelling on it will drive me nuts. My head can be like a washing machine just going round and round. Yes, I try and make the most of every precious bonus day. Take care and I look forward to hearing more from you.
Hi Erica, thank you for the welcome. When I read my post, it sounded a bit harsh, but, I’m glad you understood that I really wasn’t being ungrateful! Living in limbo can be soul destroying, but you have to try to not let it get to you - easier said than done, I know!