Reflecting on remission

Complete remission!

It's been 2 years since I relapsed, 18 months ago I was given 6 months to live. In the last 2 years I have had 3 different courses of chemo, got into remission and slipped out of remission whilst waiting for a stem cell transplant. 

It's been just over 2 months since my stem cell transplant and the results of my PET scan show complete remission. Now this is a bit more exciting than the last remission because this latest treatment was potentially curative, whereas when I was in remission after Brentuximab last year without transplant we knew it would come back........and now there is a chance that it won't. I don't know the stats, I know from experience that there is no point sweating over stats, I am happy to be a deviant.

I am still recovering from the transplant physically, and mentally I am still recovering from the insanity of the last 2 years. It's time to start reintegrating into some kind of 'normal' life, but I am now needing to forge a new life, I can't go back to my old one. In my old life I had just got my  UK midwifery registration back and was looking for a job and making plans to work for a while and then having another adventure. I never intended to stay in the UK - I was Australia bound. 

In my new life I am not going anywhere! And that's fine, my feet don't itch for the first time in my life! I cannot see myself going back to midwifery, the hours, the stress, the whole thing. Midwifery is not something that I could do part time, I need to be really in it, full time. So, I have accepted that. It's really sad, and I do miss it terribly. I can't watch 'one born every minute' or 'call the midwife' it reminds me of what I can't do anymore.

There's no panic, I don't need to decide right now what I am going to do but it is scarey. I have been outside normal life for so long I feel incompetent and unconfident in actually functioning like an adult in the outside world. It's also exciting and liberating to have the chance to start again, I am sure I am not the first person to experience these confusing and contradictory emotions.

I feel that I need to give back, to try and balance all the kindness and love that has poured my way. I am not sure how yet, and in all honesty right now I don't feel like I have anything to give, having any kind of commitment in my day puts me in a minor panic!

Anyway, that's enough navel gazing for tonight :)

Love and Light

Sim xxxxxxx

post stem cell transplant ......recovering...

Day 63 post stem cell transplant, crikey! In some ways it's gone super fast and in other ways well...it hasn't! 

Christmas was busy and my counts were recovering uber fast, I was feeling pretty good and I was excited to be able to socialise. Looking back I over did it and it wasn't much suprise that I was admitted to hospital on New Year's Eve with an infection. That night I felt properly ill and it was quite scarey, I was vaguely aware of fireworks at midnight but I was pretty out of it really. The main concern the docs had was that it could have been an infection around my portacath, so they hit it hard with intra-venous antibiotics. In the end they concluded it was probably a virus, it felt like it was probably flu, which I haven't had before. Three weeks on and I am finally feeling fully well, but it definitely set me back so I have been very much taking it easy. Actually that's not strictly true a week ago I went to the gym with a friend and she was talking me through some squats and we did some cardio, two days later I played badminton and then basically couldn't walk for about 4 days, but apart from that I have been taking it easy, honest. 

I am still pretty bald although I do have about 2mm of baby hair, but it only covers maybe 70% of my head so it's not the real deal. It is dark though, I thought for a little while it was looking grey which I wasn't ready for at all!

I had a PET scan today, the consultant will call me in about a week with the result. If it's clear I don't have another scan unless I develop symptoms, I will have check ups every 2 months for a year, and then less and less subsequent years. If I see 5 years I am said to be cured. If the scan's not clear I will have to start bucket list take two! Anyway, it's totally clear, of course it is :)

This April I turn forty, I am so grateful! No party, no fuss- just waking up and breathing and being bloody forty is soooooo amazing.

The future is hard to see because it's so uncertain, but there are so many people in a similar situation and I know I will learn to live with uncertainty and also make plans; but at the moment that seems impossible so I will just take each day as it comes.

In other news, I have started singing lessons, oh yeah! Watch this space! I am fully going to audition for the local musical theatre group this summer! Ok, so that's an future actual plan, cool, good start !!!

Hugs :)