Hi All,
I was a healthy fun loving 63 year old and was diagnosed with APML in May 2024 after having a bad cough…I was admitted immediately and started a host of treatments.
They pumped me with everything that first night before starting the Idarubicin and ATRA.
I was in hospital for 6 weeks. One awful journey, had chemo damage in my arm as my cannula had to be replaced and didn’t appear to be inserted correctly. The loss of muscle in such a short time was unbelievable and the loss of appetite, mouth ulcers and vile taste in my mouth never helped. I did come out in remission which is a plus and finally got to ring the bell in October…
I wasn’t prepared for the emotional rollercoaster…on me and my loved ones around me… I had a lot of support from family and friends. Also let down by some and learned this happens to many…
I feel like I lost a lot of who I was and now trying to find the new me…hence I went looking and found this group so was good to see that others go through similar things to me.
Got to find a way to get my normality back… whatever that will be…
Not using my stick as much for walking but I do get tired, my joints ache a lot and certainly impacted my teeth and gums. Still got issues with my arm following chemo damage…
2025 fast approaching so need direction now. I’m going to try book into my doctor… see what advice I can get…
Thinking a gym and swimming could be a good option… not sure if I need specific training now… any others done this?
Thankyou for others posting… it helps…
David
Oh @Dsmexplore I am so glad that you have found us and it is a pity you were not part of our forum family sooner.
You seem to have such personal insight into what has happened to you since May 24.
When you think of your treatment regime, in your words ‘pumped you full of everything’. it will take you a long while for you and your body to build back up, I often say slow and steady wins the race. You also say that you are not using your stick as much, again you are making progress.
I am a fine one to talk as, in another situation, I felt better yesterday, overdid it and am suffering today!!!
Wow, you got to ring ‘the bell’.
Your GP sounds a good idea for assistance or perhaps you have a nurse contact or your medical team or Macmillan service or equivalent that you might get some help with nutrition and exercise. Perhaps it needs to be someone that knows your whole medical history and the reason I say this is my haematologist might well advocate swimming, but my rheumatologist might definitely disagree.
Repeatable gyms should have well trained staff to help you on an ongoing basis, but it is a good question to ask them.
Yes, the impact of your diagnosis and what you have and are going through will have a great emotional, psychological and practical impact on your family and friends as well.
There is no manual for any of us to now how to be., we are all unique beings.
I also found I lost some friendships and gained some along the way.
However I did find my diagnosis gave me the opportunity to decide what I wanted from life and with whom. The best things in life are free like good family, friends, nature, music etc.
You are not alone on here there are more similarities, than differences.
I reckon you are still fun loving Dave, but with a new normal emerging.
Please do keep posting and the Blood Cancer UK support line is there for you on 0808 2080 888.
Look after yourselves and be very kind to yourselves and I look forward to hearing more about you, I have found I can say how it really is for me on here
Dear @Dsmexplore
Thank you so much for your post and welcome to the forum. I do hope you find this space informative and supportive.
I would like to acknowledge that you have finished your treatment and you are in remission. Well done to you on tolerating this tough treatment and the diagnosis. I imagine ringing the bell was both emotional and uplifting.
It is no wonder that you feel tired after your treatment and the emotional turmoil of the APML diagnosis. How individuals recover can vary so I would firstly say that you mustn’t put pressure on yourself but listening to your body is key to recovery.
We do have information around Fatigue | Blood Cancer UK which may be helpful for you to read. As you will see activity is important in managing your fatigue. In addition to this we have some tips on various exercise options here in Blood cancer and keeping active | Blood Cancer UK. You mentioned swimming which is a non impact exercise that could really benefit your joints. I would always say to set your expectations realistically and even discuss with either a swimming teacher or personal trainer to set a realistic goals.
Along with your physical health, your emotional health does need attention too. Joining a forum like this with people who have an awareness of what you have been through is so helpful. I would also say talking openly about how you are feeling is important so that friends and family can support you (Blood cancer: mind and emotions | Blood Cancer UK).
I do hope this has been helpful and if you do wish to talk to us please do call: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma