Trying to look and plan ahead to when I’ve had my Stem cell transplant, I’m 8 weeks through induction on Friday and will have 4 left (hopefully) if things carry on in a straight line!
We are preparing house to be Stem cell transplant ready, dehumidifier on clearing any condensation/mould, hubby will be replacing all silicone around windows/doors, re-decorating and treating hall that has condensation spots brought on by this damp, dreary winter, professional carpet cleaner booked for the main areas I’ll be - living room, kitchen, hall, main bedroom, I’ll be doing all curtains, nets, soft furnishing about a week before I go in, hubby will put brand new duvet, pillows and brand new bedding on, the morning of my return, and obviously clean bathroom/kitchen- to his level, probably won’t quite be mine! But he will also be working 40hr outside, manual labour until I’m home, then off for 2 weeks!
Is this enough? What do we need to have in nutrition wise? I’m very picky as it is, and it seems most of what I currently manage can cause me problems in the 100 days!
I like ham, but google says I’d have to eat the whole pack in one day, not over 2 days? If I eat chicken it has to be freshly cooked, no cold cuts the next day? I make my own soups and turkey burgers, and then freeze, it’s saying I would now have to defrost before cooking? What sort of foods are best to have in, that are safe and easy and I just don’t have to think about them, but can get that vital nutrition in? I’m not really into the additives stc in protein powders, thanks for any input, really appreciated, I also know we may not want to eat a lot, but also know i won’t get better if I don’t eat x
Hi @Byrnebaby, lovely to hear from you and well done being so prepared, and your husband sounds like a brilliant support. I’ll let others with experience in the community share their own top tips, but wanted to post some official resources for you as well.
On the home preparation side, your hospital team will give you specific guidance tailored to your situation when the time gets closer, so it’s worth keeping a note of your questions to ask them - they may have particular recommendations based on how your recovery is going. The Stem Cell Transplant Shopping/Packing List thread, although a few years old, has lots of practical tips from members who’ve been through it, and the Do’s & Don’ts thread is also brilliant for this kind of preparation – both are well worth a read.
The food and nutrition questions are important area, and the good news is that thinking around this has evolved. We have a page specifically on eating safely with neutropenia which covers the current evidence-based guidance and is much less restrictive than older advice you might come across online.
Apologies if I’m bombarding you with links - please do work your wayy through them at your own pace, and get in contact with Support Services (0808 2080 888 or support@bloodcancer.org.uk) if we can help answer any specific questions.
Thanks @Ceri_BloodCancerUK i will work through them, inbetween doing today’s cleaning chores I’ve been putting it off far too long, and this weeks dex downer is slowly wearing off, so time to move! 5 more Fridays to go on induction x
You don’t need to follow a strict neutropenic diet once your blood counts have recovered. We have included some tips below to help with your recovery:
While your immune system is getting stronger, try to eat a healthy balanced diet and avoid possible risks of infection from food.
Eat little and often if you can’t manage big meals. Snacks are always good.
Don’t fill up on build-ups (nutrition supplement drinks) or large drinks before a meal as you will not feel hungry.
Always make sure you eat foods within their ‘use by’ dates and cook in clean surroundings with clean hands.
Don’t reheat foods.
Make sure that meat, fish, shellfish, poultry and eggs are cooked through before eating them.
Wash salads and fruits thoroughly.
Buy foods from reputable stores.
If going out to eat or getting a takeaway, use places you are confident have clean practices and where the food is freshly cooked.
Drink two to three litres of fluid per day (this may be more in summer) as this will keep your kidneys flushed out. You will know if you are not drinking enough as your urine will appear darker.
Check with your doctor before drinking alcohol. Alcohol slows down the recovery of the bone marrow and increases the risk of bleeding. It can also interact with some of the medicines you may be taking.
Wash your hands before eating, preparing food and after going to the toilet.
Keep your mouth clean and use any mouthwashes that have been prescribed for you. You may find that it takes a few weeks before your sense of taste returns to normal.
Before having any dental treatment, tell your dentist that you have had a stem cell transplant so that they can look out for signs of infection.
Hello there @Byrnebaby, I’ve been wondering how your preparation has been coming along? I’m kind of in awe at how organised you are with all this reading, anxiety-provoking as it can be.
I know it helps me to think stuff through and read in advance of stressful stuff, even when I don’t end up needing so many plans (or can’t make sense of the science behind it all!).
Anyway, I can’t begin to pretend to understand all these steps you’re looking into, but just wanted to say you’ve been in my thoughts.
@Duncan thanks Duncan, I’m kind of hiding from the fact that the Stem cell transplant is looming now, I’m frankly terrified of this next step and what it means for mine and my family’s future, not sure I even want it, nearly finished induction, then will have bmb and 1st meeting with the Christie’s team, all I can think of is having a compromised immune system for the rest of my life and no real life , just feel very bleak, so I’ve stayed off social media a bit as I don’t want to spread my sadness , hope you are keeping well
Thanks @DuncanB yes, I think I’ll have a huge list by the time I visit, just that in itself is it’s about 130 mile round trip, I want to also find out if hubby or kids can be with me when I get my cells back, or is it complete lockdown from the moment you go in, so many questions
Aww @Byrnebaby, lovely to hear back from you. So much of what you’ve shared is familiar to me, even though we have our own unique diagnoses. I have a weakened immunity now too due to Polycythaemia vera ('PV') and its treatments. It does cross my mind most days about needing to be careful around infection risks but at least it’s become a sort of split-second risk assessment and not so overwhelming. Hopefully it’ll come to feel a bit easier for you too.
Like dear @Erica wisely says, these difficult feelings are very natural. If we didn’t feel fear about our future when faced with medical concerns like these then I’d say we are probably blocking out some of the reality of it all. If sadness is part of your lived experiences now then that can hardly be wrong, they’re your feelings!
Feelings can come and go as I’m sure you experience. It may be the case that others struggle to face how our diagnoses can make them feel. Personally, I think it’s healthy to show our loved ones how we tolerate these life-changing illnesses with resilience and adaptation and expressing ourselves openly.
Hi @Byrnebaby
If there is room you should be able to have someone with you having your stem cells back
I would just make sure they are well with no coughs colds etc
You’re most vulnerable when your neutrophils reach zero.
This is the transplant graph
@DuncanB yea I can remember you saying you were a long way from home! I’m not expecting hubby to visit at all, I’d rather he stayed safe at home and managed work, he will then be off with me when I’m back, kids can hold the fort at the hospital side as they live nearer, that’s the plan anyway, but as sons partner works in a school it could change at any moment
I’ve been putting it off far too long, and this weeks dex downer is slowly wearing off, so time to move! 5 more Fridays to go on induction x
I’m frankly terrified of this next step and what it means for mine and my family’s future, not sure I even want it, nearly finished induction, then will have bmb and 1st meeting with the Christie’s team, all I can think of is having a compromised immune system for the rest of my life and no real life , just feel very bleak, so I’ve stayed off social media a bit as I don’t want to spread my sadness , hope you are keeping well
