Been an eventful week...
Sunday saw a very rare family outing to watch Frank Turner at the Manchetser Arena. It was Alex & Callums first ever gig and they participated with full gusto, singing every word, jumping and clapping at every opportunity. Despite Franks back problems it was a tremendous gig and would rank in the top 5 of my all time favourites. I hope to see him again in the future although that may well depend on my health more than his.
On Friday, Valentines Day, it was my monthly visit to Manchester Royal Infirmary. Not the most romantic of days for Jen, but my favourite day of the month as it's the only time Jen and I get together. We don't get to go out at night and there always seems to be someone shouting "Mum!" or "Dad!" fights to referee, or, tears to wipe.
Friday was important as we received the results of the recent skeletal survey I had. As feared the recent X-rays show a couple of lesions on my skull, evidence that the Myeloma is attacking the bone from the outside. Together with my high para-protein levels and high light chain readings point to disease progression although we have agreed to hold off with chemotherapy until further progression. The first batch of chemo is the most successful and so we want it to be at a time it will be most effective.
It's been a tough week for us both and we half expected the news we got. It's been stressful to say the least, made more difficult by Jens illness, but friends who have sent good luck messages and that have been genuinely rooting for us have made it more bearable. We are really grateful. It's a shame that we don't get more support from closer to home, but that's the beauty of families I suppose!!!
We continue to be positive and whilst these lesions are a black cloud we are focusing on the silver lining that treatment can be delayed for the time being.
In the meantime download some Frank Turner - hopefully you will be as uplifted as we were last Sunday. In one of his songs, I knew Prufock before he got famous, there is a line that sums up where we are at the moment.
"They help us with remembering that the only thing that's left to do is live"
Saturday 15 February 2014
Friday 7 February 2014
Reality bites
My colleague, boss and friend Vicky Bannister published a blog last year called "When carers go bad" it's brilliant and you can read it here http://vickyandclem.blogspot.co.uk/2013/03/when-carers-go-bad.html
I've recently encountered the same sort of thing. My Myeloma appears to be pointing towards the start of chemotherapy. My light chains are up significantly, I've got increased bone pain and my para-protein levels remain high. On top of that I have had repeat infections but more recently a chest infection that has knocked me for six.
So what do you do when you are battling all of this and your main carer, your rock, the person who maintains the equilibrium, the person who makes the house run, the person who also looks after her 82 year old mum falls ill. Well it all falls apart.
Jen has been really poorly. I don't remember her being quite so ill - even after emergency c-section which involved blood transfusions. The same chest infection has knocked her for 6, I would even say it was 7!!
So this week I've tried to, had to, do more to help. I've done a bit of cooking - was quite proud of my fish pie with potato and leek mash. Done some washing - didn't manage to run the colours, as well as do packed lunches, school runs and bits and bobs of shopping - we don't half go through milk - on top of not being A1 myself a having a trip to Manchester Royal for a scan.
It's made me realise how much Jen does and how she never stops, how running the house, looking after her mum, and me, and the kids, as well as working full time - eventually the tank becomes empty. It's also made me realise what good friends we have, friends who took time off work to pick Al & Cal up from school when I was in hospital and Jen unfit to drive.
It does make me worry about the future and how we will cope if Chemotherapy comes. But that's a worry for another day. The main thing now is to get Jen fit again. And I must help more to relieve the burden on her.
Next clinic is Friday 14/2 - Valentines Day. Update to follow.
I've recently encountered the same sort of thing. My Myeloma appears to be pointing towards the start of chemotherapy. My light chains are up significantly, I've got increased bone pain and my para-protein levels remain high. On top of that I have had repeat infections but more recently a chest infection that has knocked me for six.
So what do you do when you are battling all of this and your main carer, your rock, the person who maintains the equilibrium, the person who makes the house run, the person who also looks after her 82 year old mum falls ill. Well it all falls apart.
Jen has been really poorly. I don't remember her being quite so ill - even after emergency c-section which involved blood transfusions. The same chest infection has knocked her for 6, I would even say it was 7!!
So this week I've tried to, had to, do more to help. I've done a bit of cooking - was quite proud of my fish pie with potato and leek mash. Done some washing - didn't manage to run the colours, as well as do packed lunches, school runs and bits and bobs of shopping - we don't half go through milk - on top of not being A1 myself a having a trip to Manchester Royal for a scan.
It's made me realise how much Jen does and how she never stops, how running the house, looking after her mum, and me, and the kids, as well as working full time - eventually the tank becomes empty. It's also made me realise what good friends we have, friends who took time off work to pick Al & Cal up from school when I was in hospital and Jen unfit to drive.
It does make me worry about the future and how we will cope if Chemotherapy comes. But that's a worry for another day. The main thing now is to get Jen fit again. And I must help more to relieve the burden on her.
Next clinic is Friday 14/2 - Valentines Day. Update to follow.
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