The HSCT Chronicles: Home Time

Hi everyone,

Just thought that I would write a quick new post just to let you know what my plans are for the coming days.  As many will know, I am currently in hospital having had HSCT for my MS.  I am pleased to say that *whisper it* I might be getting home this week, as my blood levels are looking good for discharge – except for one pesky liver function test that seems to want to stay raised.  I am hoping that this morning’s blood test will show that it is coming down.

If that is the case, then home it will most likely be!  I still have a very reduced immune system, so lots of work will need to be done to keep me as healthy as I can be when I arrive back.  I will need to be visiting Sheffield on a weekly basis for check-ups and blood tests, so hopefully, those will keep an eye on everything for me.

So, what’s the plan?

Cleaning, cleaning and more cleaning.

My poor husband!  He has been doing a stellar job at keeping on top of the house whilst I have been away, as well as working, as well as keeping the kids busy (he is at a large leisure pool with them as I write). I am so conscious, though, that it is is easy to forget the ‘little things’ that might need a clean, such as door handles and door frames that regularly have little hands touching them.  So, as a typical ‘spoonie parent’, I have asked the kids to get involved with helping their dad by getting those anti-bac wipes out and giving him a hand before I arrive back.

Food Prep

I was organised in that before I went away, I was able to make a few things to pop into the freezer for me to have once I come home.  Many will know that I follow the Overcoming Multiple Sclerosis lifestyle programme to be as healthy as I can be with my Secondary Progressive MS.  It hasn’t been easy here in the hospital, but I have been making veggie diet choices and doing a bit of meditation to while away some time.  I am hoping that when I get home I can make the following meals, which I know that I love, to keep me going over the next few weeks.  They are all easy, plant-based and can freeze, so I can double up if needed and make a few meals:

Deliciously Ella Cannellini Bean Stew

Spanish Beans with Tomatoes

Sweet Potato, Lentil and Spinach Dahl

Creamy French Lentils with Mushroom and Kale

My neutrophils (a type of white blood cell) are now within a good range, so I can start thinking about having some lovely, fresh fruit and veg again instead of having to stick to the somewhat limited neutropenic diet.

Continued Rest

I have been warned that being discharged does not mean that I am ‘all better’.  On the contrary, tiredness, fatigue and varying blood counts are likely to lead me to have to continue with the rest I have had imposed upon me in hospital.  Luckily, if I am at home, I can do it in more comfortable surroundings.  I see even more reading, Netflix boxsets, movies and crochet ahead of me.  I would like to get out and about in the fresh air on my scooter if I am able, I miss it so much!

One of the things that the nurses have told me is that I will need to avoid ‘closed spaces’ for a time when out of the hospital.  I know that this is sensible but I have to admit to feeling sad and frustrated when I booked my family to see my daughter in her first cheerleading performance at the end of February.  Alas, it is in a packed auditorium, so probably the worst place for me to be.  At least I can watch the practice performances on the Facebook group that has been set up!

Thinking About the Future

As in, I’m not going to do it!  I am going to concentrate on rest and recovery and not put myself through any pressure to get things done or move forward too quickly.  My body has been through so much over the past few months, I am going to enjoy trying to get it back to baseline through self-care and nurturing it.  Sounds cheesy, but I think that is the way to go!  I had some Reiki whilst in hospital – although it was pleasant and relaxing, the thing that really stuck with me after the session was the practitioner saying, ‘so, how are you going to reward yourself?’.  I should be proud of myself for everything that I have been through in the quest to try and halt my MS progression.  As such, I have treated myself to a Diptiqique candle – which I would never have normally spent the money on – and used a voucher I had received from some friends for my 40th birthday to buy a lovely ring.  I hope that when I use the candle and wear the ring, I can think of how far I have come.

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How do you find coming out of the hospital?  I like to think that I won’t have to be an inpatient again, but you never know, I guess.  I am cautiously optimistic that it will go well, but I am aware that so many people with chronic or short term illness may have more experience than I have – anything I’ve missed?

‘Til next time

 

 

 

If you would like to read more about my HSCT treatment, previous blog posts are: