The Birkitts Bubble and Being Home

Hi All,

It’s been a while since I’ve had a chance to even think about writing this, for lots of reasons. I had the transplant almost six weeks ago and was discharged from hospital on Friday so it’s been a mad time for all of us.

It was a lot tougher than I thought it was going to be if I’m honest. I guess you don’t really know what to expect but the level in which I was sick was just unbelievable both from the intensive chemo right before to the actually side effects of the transplant as well as emotionally realising what the hell is going on this year.

I don’t remember much of the first week or two and I’m glad about that because I can imagine it wasn’t too pretty to look at. I was sick pretty much every day for the time I was in there until about a week before they let me home and there were days where I couldn't even reacognise myself in the mirror. I know I mentioned before that during my other stays I was allowed to leave my room for walks in the ward but this time due to the fact that I had no bone marrow it was too dangerous so I was confined to the room for a lot of the 5 weeks. That has probably been the most traumatic thing. Not being able to leave somewhere, waking up and knowing you are stuck in the room all day is unimaginable and mentally very challenging on top of all the physical effects of the treatment.

My family have been the most incredible during the weeks in there. My mom was still going through radiotherapy herself so she was coming in to me in the morning, leaving for radio and then back later, she is one hell of a fighter! And Clare and Adam were in every day too, she really is incredible for giving me what seems to be the best bone marrow around. Stephen stayed with me pretty much every night until about 1am which was exhausting for him, I don’t know how he holds it together. I found the nights the worst because they wake you up every few hours to check on you and I found it hard to go back to sleep then so in the end I was on two sleeping tablets and two relaxers to even try sleep through the night. Since I’ve been home I haven’t used any because I like waking up and realising I’m at home in my own bed! I don’t know if Ill ever get over that feeling of being home, it is just a true feeling of peace to sleep in your own bed.

I know a lot of people want to know what’s next with regards the treatment. I am now being treated as an outpatient so I get to live at home but visit the day ward every day or every other day. They have to do blood tests that regularly to see what I need because my body can’t make a lot of the things it needs at the moment and to make sure the cancer is staying away. I need regular infusions of magnesium and fluid as I am on so many tablets a day (honestly the size of my pill box) and they need to check my immune system constantly as that is going to be severely compromised for the next year. I’m on a tablet for the next 6 months that will deliberately suppress my immune system so that Clare’s bone marrow will take over and cure the cancer completely. It means that I will probably pick up infections easily and they have told me I will be admitted again on at least one occasion to treat an infection. This is to prepare you mentally that this journey is by no means over; I’m just at the next stage.

I don’t really know what to make of it all. I literally just get up each day and see how I feel and take it from there. I am finding it hard some days adjusting to being at home because time is just so different out here than in there. I know that makes no sense to anyone who hasn’t gone through this but 8am on the outside world means something so different to in there and I can’t stop thinking about that. Being at home is absolutely fantastic though and I’m still in shock that I’m actually here. I guess it will take time to get into a routine and settle back in to home life.

I say a prayer every night for every patient in birkitts because I know how lucky I am to be at home and getting some proper sleep. I’ll keep you all updated on how the day ward is going. It’s very tiring as you can be sitting waiting for hours to see anyone but as long as I can walk out of the hospital at the end of the day I really don’t mind.

Thanks to everyone who sent me in stuff during my stay- its overwhelming how thoughtful you guys are.

Lots of love
M