Before starting any treatment I was actually feeling fine and normal despite being diagnosed with blood cancer.
But since starting treatment I’m starting to feel not right… I know how I’m feeling are common side effects and I will obviously give it time for me to get used to it and things to prolong before informing my medical team, but i know the medication is there to make me feel better but for some reason I’m not…
Guess what I’m trying to say is… it’s only while being on medication that I feel unwell and ill and that something is wrong, while I was waiting for appointments and contact I was actually fine and doing ok?
Can anyone epathise?
Hi @Rammie18, I think your experiences are so common, The medications we are given are there to do their work on the blood cancers. Not to make us feel well or better at that point. Unfortunately that is the phase you are in.
Blood cancer treatments can be hard on us emotionally, physically and practically and we on this forum are here to support you.
In saying this please do keep your medical team aware of all symptoms and feelings you are having that is what they are there for. They can prescribe medication to help with sickness, mouth ulcers etc… They are also there to answer your fears and questions, especially your specialist nurse.
Getting a balance between rest and appropriate exercise is important.
The Blood Cancer UK website has information on it and the support line details are above.
Please keep posting and take lots of care of yourself.
Thanks @Erica for your continued supportive words… you are absolutely right…
Ive got a face to face gp appointment later in the week so I’ll be sure to write things down… and let them know
At the moment it’s the short burst of sleep and more annoyingly the constant itching… just doing me best to be distracted and be moving as it seems to be the best remedy. Tried all the obvious remedies of cool showers, loose clothing, cool rooms and rubbing rather than scratching
Hi @Rammie18that your GP should be able to prescribe something to help with the constant itching or the pharmacist might advise Calamine Lotion or equivalent as a stop gap measure.
Look after yourself and please let us know how your GP appointment goes, sometimes I have to be persistent.
Hi @Rammie18, it good to hear from you. I can imagine it’s very frustrating when you feel worse on the medication that is actually helping you. Good that you have your go appointment and have the chance to discuss it. Be sure to let us know how you get on
Hi @Rammie18, we can only imagine how frustrated you must be feeling going through these side effects of medication especially when you were feeling well before starting on them. As Erica mentioned it’s important you let the treatment team know what you are experiencing so they are aware of the big picture and can also advice you accordingly if they are able to give you anything to help you manage the side effects. You may find information on our website on side effects of treatment helpful here: Blood cancer side effects | Blood Cancer UK.
Macmillan have some useful information on cancer and sleep which you may want to check out here: Difficulty sleeping (insomnia) - Macmillan Cancer Support.
If we can be of any further support, our Support Services Team are always here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.
Hi Rammie18 I was the same. I felt pretty normal before starting treatment although thinking about it now, with the benefit of hindsight, I had just had my Dad’s funeral and was busy clearing his house so everything was about that.
The drugs are powerful and I just had to remind myself that they were not zapping me but zapping those darn mutant cells. I felt more warrior like that way. The tiredness was immense. I could sleep 10 hours at night and get in another 4 hours during the day. My husband said I got up to less mischief that way! The muscle cramps etc were annoying. The funny thing was at times it reminded me of having my babies as if I was watching from afar - oh look at that woman in labour. A kind of timeless acceptance and enduring which was kind of peaceful. I can see why hypnotherapy or meditation can help some people. I think we are conditioned through our lives by childhood illnesses to be ill and then , like magic, to be well again and so we are not prepared for the grind of a long term illness or treatment and it takes a special kind of stamina and lots of cuddles and time to find how strong we can be.
Do not lose heart. Take the daily treats on offer and develop your warrior self. Oh and accept the blips and forgive yourself.
I have Essential Thrombocythaemia and when I was first diagnosed my team advised me to go on medication. After reading the side affects I declined. I have been on Asprin now for about 6 months and I’m feeling fine. I watch my diet and exercise a lot. I’m on the watch and wait list and I am monitored every 3 months. So far fingers crossed all is well. Everyone is different so my situation may not suit everyone. However whilst I am feeling well I will continue with just Asprin.
Hope this helps.
Hi @Macymae123. It’s such an individual journey isn’t it but it really does help to hear about others experiences. It’s good to hear you are doing well
I recently moved gp surgery so I could get my GP who helped me massively in the past pre diagnosis and honestly feel she has my welfare and health as a priority. Appointment was really good she went above and beyond to listen to me with my long list of issues from my side effects to my vaccination not being recognised.
I’m allowed to up my dosage of antihistamines as the one I was one was the one most effective (fexofenadine hydrochloride) and given me some sleeping tablets to use when I need it when I need to sleep but can’t.
Ive found the more I move the less itchy i get. It’s often when I’m sat down or lying down that I get more itchy. Also when I’m in close proximity to others but I think that’s more mental.
Gosh @Rammie18 all sorts of things going on for you and you sound positive in your post.
Doesn’t it make a difference to feel listened to by your GP and that they have your welfare and health as a priority.
Does anyone else feel that.
So important to have a good GP and medical team. I think it makes a huge difference to my whole outlook on things. I definitely feel more relaxed knowing I have someone who will listen and take me seriously!
If my GP ever moved county I’d happily travel and wait 6hrs in a waiting room.
She is brilliant and fantastic and has helped me more than she knows.
You are so right especially when you’re in the dark about things that there is someone who’s looking out for me without their own interests at heart
Hi Rammie I was thinking of you last night, whilst lying in bed and too hot to sleep. I hope that you are getting on better with less itching and more sleep.
@GrandmaJo bless you for your thoughts… I’m doing ok…
The heat is killing me esp as my house feels like a greenhouse with zero shade… defo welcoming a dark cloud soon… but that’s me being selfish . I think I’ve found a balance of medication that seems to be working and got a haemo appointment next week to see how the effects of my first proper bout of treatment has gone.
Doing me best to keep busy… exercising, tending to my garden (never ever thought I’d ever say those words) are keeping me busy during the day then relaxing if front of the telly watching the football and hugging the fan to sleep and repeat seems to be a common routine.
I hope you are safe and well and enjoying the sunshine…
Lovely hearing from you
Hi @Rammie18, it’s good to hear from you. I am glad that you feel that you have found a balance of medication that seems to be working for you.
Please let us know how your haematology appointment goes next week.
What type of exercising have you been doing, I am a walking and pilates girl?
It just shows you what lockdown can do for you that you are now tending to your garden, sounding good are you pleased with your efforts?
Yes, the Euros are just what we needed to ‘chill’ out to.(poor choice of wording in this weather). I wasn’t sure if you were hugging a fellow football fan and then realised the fan was to try and keep you cool.
Take care and has anyone else taken up a new hobby?
I will do @Erica
My work commitments has massively decreased so i really wanted to make use of my time. Im still making my youtube videos to help kids catch up on their maths, but ive recently signed up to personal training at a nearby gym. Going everyday and so despite the many aches, not missed a session.
When i say gardening its more watering plants (i bought but my mum planted) and the grass but i wake up wishing for rain to save me the job of going out in the evening sweating it out
I count watering plants as gardening!
Hey, @Rammie18 your mum sounds a star and a good incentive to watering your plants !!!