Feeling crap…

It’s now five days since the transplant and I feel totally wiped out and crap. We had laughed at the seat below the shower when I first moved in to my little prison, but today I had to make use of it! I feel 90!

Anyhow, sorry for the lack of updates. It’s all I can do just to have a glance at Facebook for a few minutes, but I don’t feel like interacting with anyone. They have told me I am a model patient, and that everything is going as expected – well apart from the fact they couldn’t ram the feeding tube up my nose – and that sleep is good. So, apart from the odd visit from Jane and Zig I really haven’t done much else.

Apparently today is the low point and things get better from here. I am once again neutropenic so fully expect some odd infections, as long as I don’t look like bloody Elephant Man again! At least I am an in-patient this time and they will jump on anything untoward very quickly.

I am still amazed that I am here going through this, but they are already checking to see if my blood group has changed yet so things can move on.

Thanks for all the messages of love and support – I will be back full flow as soon as I can be arsed!! 😉

The Chaplain!?

I’ve just had a visit from a volunteer, to see if I would like to book a meeting with the Chaplain??!!

“Why?” I asked, “is there something you know that I don’t?”
“No”, she said “it’s just if you wanted someone to talk to about your condition.”

Very politely I replied, “I have a team of consultants, doctors and nurses at a press of a button, 3,900 hits on my website, 70 timeline messages, 20 voice mail messages, 35 private Facebook messages, and my sister is on her way!”

“Oh, you seem fairly busy”, she said, ” I won’t book you in.” And then she proceeded to tell me her problems!

Perhaps that’s part of the therapy to make me feel better 😉

Stem Cells Going In

Amazing, the transplant has started, and the bag of tomato soup hanging in the background contains millions of Jane’s stem cells. It took four and a half hours to get them out of her, it will take about an hour and a half to drop them into me!

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TRANSPLANT DAY

Haven’t been able to blog over the last few days as have felt so sick and exhausted, the chemo I have had has been such a high dose, I won’t even start with the side affects!!! Finally all done!!!

My gorgeous sister arrived yesterday with my brother inlaw as it was my birthday along with zig, Henry and Charlie! But I was a bit ‘out of it’, not the best company!

Jane is at this moment along the corridor giving me her much needed cells, because without her this treatment can’t happen!

All has and is going according to plan, the transplant will take place at 5.30 pm!!!! Sent from my iPad

Delete Blood Cancer

Since my journey started I have been finding out more and more about the ways to raise awareness of the need to find bone marrow donors. My poll shows that over 50% of the respondents either didn’t know anything about becoming a donor, or were put off as they thought it involved invasive surgery. Hopefully I am helping to raise the awareness, and I know quite a few of you are now looking into registering.

For those of you who are scared by the prospect, and I know many of us are very squeamish (although I am getting used to that by now), these days stem cell technology and transplants really make it very simple and not scary at all. You can find out more about that at:

  1. Anthony Nolan
  2. NHS
  3. Delete Blood Cancer

The Delete Blood Cancer charity is a new one to me, I only found out about it today, and Zig has already put his name down! The reason it’s so exciting is because they take registrations up to age 55, and given our ages – that makes it accessible to a whole load of our friends.

Registering with them is easy, so please make a difference and do it today if you are able – just follow this link: www.deletebloodcancer.org.uk/en/register-now

Thank you 🙂

Quick up-date

Thank you to everyone who has taken The Poll, so far, I am absolutely amazed at the response from all around the world!!!!!

I have finished the 3 days of Campath, which is a chemo that can cause the shakes, high temp and fever!! The first day of it was the worst and I experienced what is called ‘a rigor’, uncontrollable shaking! I have now got a drug called fludarabine, which side affects are not as bad and on the plus side only takes 40 mins to be administered as apposed to 8 hours!!

But I am VERY excited as my sis is coming to spend the day with me!! Hurrah, hurrah, I can’t bloody wait!! Xxx

Donor Poll

Have been a bit quiet as the Chemo this week has really given me a good battering and I really didn’t feel like saying much. But I still wonder why people who need a bone marrow transplant often find it hard to find a donor in this day and age of social media and internet and whatnot.

So – I decided to take a straw poll. It’s completely anonymous and I would really be grateful if you would have a look. It’s a quick multiple choice – just choose 1 of 4, and it will really help me think how we can help others. Not everyone is as fortunate as me to have a fab sister who is a perfect match!!

Thank you. xx

Take the Poll

Admittance to Southampton

Arrived yesterday at 4pm, have got a great room and ensuite – plasma, exercise bike, fridge, kettle, all singing all dancing bed, air filtering, electric Venetian blinds, defo in upper class! Now let’s get back to why I am here!!! I cannot walk out of this room for 4 weeks, I was connected to a drip until midnight giving me antiviral drugs, they are basically preparing me to be really ill! That is the hard part at the moment I feel great, but this afternoon they will start giving me campath, which is chemo that will go into me over 9 hours, it will make me feel like I have flu and give me the shakes! Great can’t wait! On a lighter note they also want me to do all my business in bedpans! Cheers for that.