bone marrow

Hi you lovely lot!!!!

As promised, here is the close of my blog. It has been a major challenge, but I have had amazing support from you all!!! So… in true Award Ceremony style… I just need to do a few thankyous!!!!

Dr Simpkin – for recognising there was something wrong in the first place
Dr Janes – for diagnosing it. Enjoy your retirement 🙂
Viv Richards – specialist haematology nurse – who dealt with Zig and me after the ‘shocking’ diagnosis, for the ongoing support afterwards.
Jane Cochrane – my gorgeous donor, sister, supporter and bloody brilliantly she was an exact match!!!
Donna Michelle – nurse and confidante. We just chatted, and chatted, about so much girlie stuff.
The Fernhurst Centre at St. Richard’s in Chichester. Amazing people, such fantastic care, dedication, and let’s be honest… patience!
Dr Rob in Southampton – for looking about 12 and getting it right!!
Debbie Richardson who was my initial Consultant in Southampton, and Kate Hill, another amazing Southampton Consultant who looked after Jane initially and me afterwards, with such good humour and dedication… I loved our common interest in clothes and fashion!
Joan Newman BMT CNS
Nikki McKeag BMT Lead Nurse
And Darren – a truly amazing supportive nurse on the ward in Southampton while I was locked away for five weeks.
The whole of C7 – you know who you all are, Lisa Fisher, Hannah Watson etc
Zig – for being at every complicated appointment and explaining it all. I’m sure he’s now fully qualified.
The whole of Chichester Cancer team, the Southampton Bone Barrow Transplant team, and Billingshurst surgery for dealing so well with me!!!
Henry for visiting and making me laugh, so much, and Charles for driving me backwards and forwards.
Ian Armstrong – personal trainer, who has got my fitness back and showed me HOW to exercise!!!

Anyone that needs to chat or ask questions about this disease please call me or email, as I am now a mentor for leukemia care and Blood Wise and always happy to chat. It’s a bastard disease, but we are winning the war and you can get better. A word of advice though… it doesn’t matter how shit you feel – do what they ask you to do! Keep your shoes on, drink lots of water, etc etc. They know what they are talking about!!

I am now well, I have to take penicillin (to my annoyance) twice a day for the rest of my life and I have been left with one lung only inflating half way, but I am cured, thanks to the team above and my darling sister for having the right blood cells for me!!!

As you probably have all seen, (and by the way if you’re bored of me on FB just defriend or unfollow – I will understand), we are attacking life with gusto and not wasting a minute and are moving on to another venture!! You never know what’s around the corner, and we have one life… SO LIVE IT!

Love you all xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

My updates have been getting slower, partly because there’s not a lot to tell, and partly because I am now just feeling trapped and unable to do anything – so have resorted to washing, ironing and cleaning – in addition to becoming addicted to Jeremy Kyle, Loose Women and The Chase. I was going to give up soaps, but now I’m not only hooked on Corrie, but have become fairly involved with Emmerdale. I haven’t quite succumbed to Eastenders as I just can’t cope with all the shouting, well… not after Jeremy Kyle!!

So, last week. Friday was the three month day since my transplant. I can’t believe it has all happened really. When I look back it only seems like yesterday that Dr Janes was saying “I’m sorry to tell you…”, but when I think about the journey it seems to have been going on for ever.

I now only have to go to Southampton every two weeks, but was dreading it this week as they have to take blood from my arm since I had the line out. Last time was such a nightmare, causing tears and everything. This time my heart sank when I realised it was the same girl taking the blood, but, she got it in one!!! I think she was a surprised as me, and once she had taken twelve buckets full (it might have been test tubes), she even thanked me for letting her do it. Anyway, they have carted it all off to do who knows what with. Apparently they needed a lot to do every test imaginable so they can get an idea of how things are going. They also check the Chimerism which tells them how much of Jane’s marrow versus how much of mine, so fingers crossed for more than 90% now I’m off the cyclosporine.

Next Monday (17th) we’re back off to Southampton for the 100 day bone marrow biopsy – so I’m looking forward to that!! It’s hideous, so I hope they have plenty of gas and air on standby, as well as a box of tissues to wipe my eyes with. Zig says I always look very sorry for myself after having a bone marrow sample taken, a bit like a small girl who has just had the back of her legs smacked by the head mistress!! Hmmph!!! We’ll then have to wait another 10 days until we get all the results of the blood and bone marrow tests, which should give an indicator of progress so far.

I don’t suppose for one minute it will give them an indicator as to when I can have a little drinkie. A month ago we asked if I could have a small glass of wine with a roast lunch and were told “not for some time” by the consultant. So when we went last week we check with the senior post transplant nurse just in case the consultant has it wrong, and were told “absolutely not”. Next time we’re going to ask if I can have a small dash of brandy in my coffee as a bit of a warmer – but I’m not holding out for good news on that either.

On the plus side, I still feel OK, my hair is growing (slowly) and I have now started using a bit of some sort of styling wax stuff that I found in the boys bathroom cupboard.