I was diagnosed in April with Acute Myeloid Leukaemia, have had 3 cycles of chemo and today completed my ‘conditioning’ cycle of Chemo ahead of my siblings donor cells being put in on Thursday 29/9/22.
Any tips for getting through the next few months?? I am a very positive person and my positivity has been fundamental in my outlook to beating this disease and being around for many years to come to see my 3 daughters flourish in life, and continuing to annoy my husband !! Thanks in advance for suggestions and ideas, have to admit to feeling a little anxious about what’s to come!
Hi Nina…not an expert but the old adage of forget yesterday and tomorrow and get through today is how i do it.
One day at a time…rather than worrying about what MAY happen
Hope all goes well for you.
Hi @Nina a great big welcome to our forum, I am glad that you have found us.
I am not surprised that you are feeling anxious, it is the unknown isn’t it that is scary.
I think it is distraction things depending on whether you have a hobby, reading, music, modern technology to be able to Zoom (or whatever) your family to see what they are getting up to !!!
You might not fancy anything that takes too much concentration.
If you have a fridge in your room you might want some foods and drink brought in.
Perhaps comfortable clothes etc.
Please keep posting when you can and don’t forget the Blood Cancer UK support line is there for you.
I will copy your post to the Blood Cancer UK nurse advisers @BloodCancerUK_Nurses just in case they have some handy hints
Yes, just take it a day at a time and be very kind to yourself.
I hope others can help you further.
Oh Nina - that’s tomorrow! I expect you have your bag packed and everything by now!
I had an autologous Stem cell transplant which is a bit different. During my transplant the nurses kept bringing me Scandi-shakes as I wasn’t able to eat much to begin with. They told me it is important to consume double the normal amount of protein to help the new cells take (?) I don’t know if that’s true for a fact but the shakes definitely helped me to keep my strength up.
In hospital I was surprised that I didn’t find I felt like reading small print to begin with (probably because as @Erica mentions, concentration immediately after the transplant can be an issue) so I spent a lot of time playing word-games on the iPad that were quite nice and short. After my transplant, I read a post (maybe on this forum, I can’t remember) about one patient who packed lots of little kits for making felt animals and made a different one every day which was quite a talking point among the nurses. Such a great idea!
You mention your three daughters - one thing I told my three sons is that it’s the treatment (not the cancer itself) that makes you lose your hair and be sick etc. I think they found that helpful because they could accept these visual things as transient and as a means to an end. They have since seen my hair grow back long and my appetite return.
Also, I told them that humour is OK and we managed to share some laughs about various small things which can help even in this context.
I’ll be thinking of you tomorrow and hope all goes really well for you.
Thanks for taking the time to reply! Todays the day, all hooked up to ciclosporin then the cells go in this afternoon. Feeling excited about the next stage of treatment!
Thanks again, really helpful tips. I have been an inpatient since April at UCLH so bald already after 3 cycles of chemo, good luck to everyone battling blood cancer x
A very warm welcome to the forum. I hope you’re doing okay?
Happy Transplant day. I would imagine you are feeling all sorts of things today and especially now you are in the unit and the process has begun.
I’m sure others going through and previously been through transplant will be able to share lots of great ideas that may help. In case it is useful i have linked below to a similar thread where previously many others have shared some of their coping ideas- Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Forum
Also Nina this page from Anthony Nolan offers some practical tips which I’m certain you may have covered already- Your stay in protective isolation | Anthony Nolan
I wonder if this is a good time to pick up a new hobby of sorts or even share any great box sets or dramas of interest. I appreciate your concentration may be lacking somewhat so whatever you find helpful in passing the time, do be kind to yourself.
As always our support service team are on hand should you wish at any point to talk anything through- 0808 2080 888.
Take Care, Lauran
Oh @Nina thinking of you loads, fingers and toes crossed for you !!!
Be kind to yourself
Hi Nina, sorry for not replying earlier - I didn’t see your post. By now you will have had your Stem Cell Transplant (aka “tomato soup” !!) - were you surprised how quick and simple it was ? I had a Stem cell transplant (the donor was my sister) in 2018. Rest assured, you have done the difficult bit (the horrible Chemo) - the next bit will hopefully be a steady climb back to strength and fitness. My advice to you ? Keep being you . Stay positive. And eat whatever you can. My tastebuds and appetite went a bit rogue, and I took the (good) advice to get any calories down my neck possible. Perfect! Crisps and ice cream on prescription ! You’ve got to take the positives where you can ! My children and wife were absolutely amazing throughout my Acute Myeloid Leukaemia +Stem cell transplant journey - I’m sure yours will be too. They will be encouraged and lifted by your smiles and progress back to “the real you”. Go Nina ! You’ve got this beaten ! Love and light from me for your successful journey.
Hi Nina, just saw your post today. Focus on you 3 girls and husband and all the people your love this will help you to get through.
I had my 3 chemotherapy and bone marrow transplant 25 years ago and I am well. The is no reason why you cannot beat this cancer and see your girls growing up.
Hi Nina, I’ve only just picked up your post. I hope the transplant went well. I had an unrelated donor stem cell transplant for Acute Myeloid Leukaemia in February 2020 and am now completely fit and well, only limited by the need to avoid Covid risk. Although I was only in hospital for three weeks for the transplant I had already been in for five months for chemo (stubborn neutropenia so they wouldn’t let me home) and I was surprised by how weak and tired I was when I finally got home. I made myself go out for very short walks and had naps in the afternoons, and by the end of the first month I was feeling much more normal. My advice would be to be kind to yourself but also pace yourself back to normal activity over a couple of months or more. Good luck! Diana
The worst part for me was the gradual loss of any appetite and very sore tongue. The liquid morphine was ace - I highly recommend it. Also helps with the boredom. If I had to do it again I would get more soft treats, some really good smoothies and try out some of those protein drinks and find one you don’t find too repulsive, so you can drink those if you can’t eat. Also treat yourself to some super comfy clothes. My sister bought me cashmere socks which felt so good. Luckily it wasn’t that bad for me. Try to keep in mind that it is only temporary and every day once it’s over, you will feel better. Very best of luck!
That is really useful information @Paul and those cashmere socks sound absolutely wonderful what a very thoughtful sister.
As I have said before it’s tinned custard (hot) and ice cream that helped me.
Take care of yourself
Hope all is going well for you six days on.
That sounds like a long time to have been in hospital. Hoping you’re on the road to a really good recovery from your transplant.
It’s an odd thing. Apart from cake (thank god), I can’t eat any of the foods I ate during that week or so when I felt really rough. I’m totally off caramel ice cream. Will stick with the custard!
Thank you so much for taking the time to reply. I am day +6 and have had a rubbish 24 hours with temp spikes and an NG feeding tube inserted due to not being able to eat anything and lots of weight loss since diagnosis back in April. I am however, cosy under my blanket from home and a gorgeous pair of cashmere socks on my feet courtesy of my sister in law!!! Onwards and upwards…… enjoying the good days, and enduring the less fun days knowing that it won’t last forever !!! Thanks again, Nina
Oh @Paul you are not totally off caramel ice cream, are you !!!
Hi Nina…thanks for the update
Wishing you all the best in the times ahead
Oh @Nina what a good idea to be cosy under your own blanket and as I said to @Paul those cashmere socks sound so inviting and what a thoughtful sister in law you must have.
When I need a present for someone, I will remember those socks.
Yes, enjoy those good days and endure the less fun days knowing they won’t last forever.
Yes! I can’t bear it now. Homemade coconut cake I can still manage…
Hi @Nina I had my transplant on 02/08/22 so i know how you feel. Can i just say to you that everything is temporary and you will be home very soon. Once you are home everything will feel so much better. Hang in there you are doing great xxx