1 year on....

I'm a bit late, and now actually 1 year and 8 days on from my actual BMT last year. This time last year I was pretty much out of it if I remember correctly (I should go back and read some of what I wrote).

This year, my excuse for not writing is that I have been too busy! Work has been busy to try and get things finished before Christmas and then preparing for Christmas Day. I will say also that since the 21st Dec, which was the last day of work for the year, lunch out with colleagues and my actual 1 yr anniversary, all I have wanted to do is sleep. It seems I have finally given permission to myself to have those afternoon naps that I have not had during the year.

So a year on, what does that mean? I'm not really sure!

We got home from hospital in time for Easter in 2018 and very soon after that I returned to work, a little at a time until pretty much by July I was back to a full load (although nothing like I used to do). I seemed to be busy from mid August and this didn't seem to ease at all until the end of the year - although I still have a list of things to get done when the new year starts.

I wasn't working 'full time' but essentially every 'spare' hour I had in the day was spent in the office - other times I was at the hospital, having blood tests, having other tests or having a massage - my monthly hour or so of bliss (well, sometimes it hurts - but it helps so much!)

December I decided to finally get a large lipoma removed from my back which was starting to bother me and also get the colonoscopy done that I needed. I also had a lung function test and colposcopy with the aim that I didn't have any hospital procedures for 2019. I knew that I'd be having another bone marrow biopsy early in the new year, but after that, then nothing for an extended period, was the hope. That didn't last long with sudden letters arriving in the post to say I was booked in for a bone density test on 31 Jan and Echocardiogram on the 4th Feb - so my wishful thinking doesn't always work out. These are all just follow up tests 1 year on to see how I am going. Come Feb as well I will have another round of vaccinations - as these started again in June this year, with boosters in the following months and will continue to go on for another 12 months. The days where I have 5-6 injections - I can't say I enjoy these!

The hard thing is that I feel relatively normal, but then I don't - so everything they say about the 'new normal' is just that - trying to work out a balance between feeling good and pushing yourself too hard and having days of feeling lousy. Physically I feel pretty weak and in my head I think I can do something, but then find I get halfway through it and just can't keep going, so sometimes I am aware I won't even try as that's easier than having to admit I have to give up before I am finished.

I am starting to swim now that wounds have healed and I am holidays, and as my lung function test was not that positive, I've worked out I need to get a bit fitter. Also, planning to travel to Sth America for 5 weeks in April/May and realised I really need to be a bit fitter before I get there - so need to focus on stamina, cardiac so I can actually enjoy the trip. The other challenge is to just get there - as currently I am still having transfusions essentially every 2 weeks which puts a bit of restriction on things. I managed to travel to Chiang Mai for 3 weeks in November, which was fantastic, and I was feeling really well. I was feeling so well that I was convinced my haemaglobin had come back and that would be the end of transfusions, but returned to find I had a Hb of 80, so another transfusion was needed. However, it seems to be a bit all over the shop at the moment, so I am cautiously optimistic that change is not far away (but I've been saying that for 6 months now!!).

With travel - I have to say I do realise how lucky I have been. I travelled to Cairns/Palm Cove in April, Gold Coast in June, Melbourne in July, Darwin in August and Chiang Mai in November. I know there are many people post BMT that can barely leave the house, so yes, I am lucky.

What do I get frustrated about? I get frustrated that I realise I work slower than I used to. My biggest thing is opening a screen on my computer then forgetting why I opened it and having to retrace what I was doing to get me moving forward again. I get frustrated 'cause I forget things - but then I still have the best memory in my family, so I suppose it's not too bad! I hate it when people tell me how well I look and that somehow how well I look has to equate to how I actually feel. I have had days when I feel like I am about to fall off my feet and crumple to the ground, only to be told... you look so well. It seems when you look well then people seem to forget everything you have been through and that it is quite possible you are feeling lousy. People stop asking (although I have never been good with people asking how I was feeling) but even at home - it seems that the whole process is a long distant memory, and that there is an expectation that I should be able to do everything I did before. What they can't understand is that if I have been out grocery shopping and then cooking, that can pretty much take it out of me in the day, so sitting on the lounge after dinner is not being lazy!

I get lectured all the time about being kind to myself and not pushing myself too hard yet when I am good and listen to my body/the warning signs - it seems that everything people say is forgotten and there is still that underlying expectation of what I should be achieving!.

My biggest challenge is allowing myself to rest. I have never done this all my life - everyone else came first. However, one of the most valuable pieces of advice I have received when I say I don't have time to rest in the middle of the day was to ask myself the question: If one of my kids were diagnosed with a life threatening illness and the Dr's told me that the only way I could save them was to have a nap in the middle of the day - you bet I could find the time to do it, and I would. So really, it is as easy as making a decision.

I am working on this motto for 2019 and to plan some time out with yoga and books to schedule in that break/rest. It is hard to try and find a routine between ad hoc hospital visits but that is my mission for 2019.

Wishing you all the very best for the new year.