Cyclophosamide priming

1km no matter how long it took is brilliant @Spangleystar

I remember being delighted to finally make it to the bottom of our Terrace and back to the house for first time (about 500 steps).

You’re still very much in the recovery phase so celebrate those small but significant :trophy:

3 Likes

Yes the yellow plant is indeed gorse @Duncan

Was a challenging walk but I enjoyed it very much. Views make it all worthwhile

2 Likes

@Spangleystar thats amazing sweet heart! You are definitely a :glowing_star: , I’m glad recovery is going well :flexed_biceps: I hope your time away soon fades into the distance and just becomes a memory in your journey x

4 Likes

@2DB its a tad hot isnt it? Good excuse to do nothing, x

4 Likes

@Duncan glad you are keeping well Duncan,

2 Likes

@DuncanB gorgeous pictures Duncan, looks like a wonderful walk :man_walking:

3 Likes

@Spangleystar @Duncan my daughter and her partner love Studio Ghilbi, they went to see Spirited Away on stage in London a few years ago x

3 Likes

Pre-Stem cell transplant ~ come on gang, hints, tips, coping strategies for the next 3 weeks, please :folded_hands: :grimacing: slight panic attack incoming :slightly_smiling_face:‍<->

@Spangleystar @Duncan @DuncanB @2DB

2 Likes

Simply make the most of these three weeks
Take each day and do one thing that gives you joy.

2 Likes

Oh @byrnebaby :face_blowing_a_kiss::face_blowing_a_kiss::face_blowing_a_kiss::face_blowing_a_kiss:
What worked for me may not work for you, but as you asked, literally not thinking about it was the best thing. Doing the shopping you need now shoving it in a cupboard until you pack the day before. Now it’s not possible to totally not think of it, but try and timebox it so that you only think of it once a day for 15 mins, then just let the thoughts pass.
For the next couple of weeks - live each moment, without a care in the world. I was told to be very careful of interacting with people- but that wasn’t easy with tests and appointments the week before! It is really important that you don’t get sick and delay things but it’s easy enough to avoid crowds and people that are visibly ill, take your mask and antibac everywhere.
You’ll be grateful that you gave yourself some physical and brain freedom when you’re in hospital and it’s all you can think of xx

3 Likes

@Spangleystar im actually looking forward to the hospital bit? So it’s done and behind me, and one less thing to think about, if that makes sense? :sweat_smile: oh I’m going Into a kind of lockdown from Friday- shopping early, chemist to pick up double on all prescriptions. So I have fresh to take in, shopping the following 2 Fridays at 7am, been masked for months now, seeing g kids for the final time on Thursday this week x I’m not putting that date at risk, supposed to see consultant on 10th, I was supposed to be meeting a lady who is on the trial but high risk, next week, as shes up for a holiday and staying in a caravan, but I’m going to cancel, as Stem cell transplant has to be the priority now x I love your idea of giving it some time each day xx how are you genuinely feeling now, other than knackered? Relieved? Positive? Xx

1 Like

Thanks @2DB is that because things will never be the same again? That’s what concerns me x

1 Like

I want you to remember you asked genuinely how I was feeling, if you don’t want the full truth stop reading!

Mostly positive and hopeful. I wouldn’t say relieved, because the thought has crossed my mind about having to go through it again and I pushed it firmly away because that’s not helpful. I still keep getting nausea triggered by hot food smells but I’m trying to retrain my brain to recognise that these won’t make me ill.

It’s a lot, there is no sugar coating it lovely, but if we get super long remission then all is worth it xx

3 Likes

Three weeks treatments free
I made the most of the time between harvest and transplant
Things will be the same you may just have to adjust how you do them for a while
It’s ok to have days where you feel overwhelmed just don’t stay there.

What do you like doing
Any hobbies

2 Likes

Absolutely worth it, my little :glowing_star: @Spangleystar oh I had that with hot foid during induction, I’m expecting all that x We won’t have to do it again! Less toxic ways are coming along!! We will be part of the last generation of Stem cell transplant’s im sure of it xx

I went for a 4.5 mile walk on Saturday and had a shower afterwards, and there was a total massacre in there :sweat_smile: after days and days,of showering and my hair coming out in handfuls, I got out, dried of, for a plastic sandwich bag, put hair in a pony tail and lobbed it off! Felt so free in and being back in control, I followed your lead x I’m honestly fine hearing anything from your experience, and you know, maybe for those that do follow in our stead, it might be worth starting a thread, so people can read and have info on our particular hospitals too? As we both came here looking for that info and found wonderful friends :heart::smiling_face_with_three_hearts: but not so much lived experience, without asking ? X

2 Likes

Thanks @2DB :heart: it’s wonderful not having g any treatment isnt it x I love walking x we are doing some every morning before hubby goes to work, and I’m busy doing a deep clean so the next 2 weeks I can think ‘ahh every thing is done’ :sweat_smile: I’ve got into a funny series called Resident Alien and Matlock Kathy Bates,can’t concentrate on books bit have lots of puzzle books for when I’m home ,

2 Likes

Yes it was a lovely walk @Byrnebaby

Took it slowly and stopped quite a bit to take photos :camera_with_flash:

2 Likes

Lovely idea but I’m really focused on recovery right now and would rather not dwell on it. People are welcome to tag me to ask questions but everyone is so different through this and I wanted to pace my information intake at a rate I could process how I felt about it all, so I’ll go with the flow of what people need, because I’m not sure I’d have wanted it all at once xx

4 Likes

My tips are really just to keep yourself safe and healthy @Byrnebaby

If anyone visiting has any kind of sniffle tell them to stay away. Mask on if go out and use hand gel and wash hands thoroughly if handling shopping or post.

And of course get out in the fresh air as much as you can as it will be a challenge when in the recovery phase.

Day before my donor transplant we did a 11,000 step walk after a 6 hour drive to Glasgow as I knew it was my last opportunity to be outside for a while

2 Likes

Oh I’m pretty sure you’ll know what you need @Byrnebaby, you already sound so organised. I wonder if it might help to try seeing the next few weeks as a bit like a holiday where you can let go of daily expectations and enjoy treats more and relax and get fresh air in advance of going in for treatment?

On a more practical level, I remember after my heart attack that I just had nothing with me in hospital that I would have packed if I’d known, like a favourite old poetry book or a bottle of lavender essential oil or solo board game or whatever it might be. Something you will appreciate on a sensory level that reminds you of not-hospital, maybe make sure to put that aside :thinking:

Mostly what @2DB said! Make the most of enjoying yourself.

And of course like @Spangleystar wisely says keep antibacterial spray/wipes and masks with you, and don’t be shy about being assertive if people don’t get your need to be careful. Although @DuncanB says it much more nicely, I’d say it’s your once in a lifetime chance to be blunt and rude if you need to get your point across to keep people out of your space!

1 Like