All tubed up no place to go….

Well after the stress of yesterday i forgot to mention any of the nice points! I did manage to treat myself to a manicure (although I stupidly chose a shade of red that clashes with my hair…. idiot!!) and had a good catch up with Holly and Liz!!

It was very strange being back in london though. Back in my flat, but none of my stuff being here. Its like its my bedroom, but its not really.`Very strange!!

I treated myself to a quick run this morning around Battersea park and felt much better for it!! Being active makes me feel so much more alive. One of the things I’m dreading most about the treatment is losing all my fitness and becoming weak.

Not a great picture, but you get the idea!!


Then it was time to head off to hospital for another fun filled day seeing the consultant and getting my line inserted.

Things actually went fairly smoothly today! Cannula was put in early and quickly. And I made it through to see my consultant before heading off to get my line put in.

After chatting to my consultant it seems that the plan still hasn’t been finalised. I still haven’t got the funding for my transplant signed off, they haven’t decided what pre transplant chemo regime I will have AND they haven’t actually got any 10/10 donors for me………… So it is highly unlikely I will be admitted next week for chemo until at least a few of the above have been sorted out!!


This should be sorted in the next week or so, and also I will look into private healthcare that I have with work to see if we can speed this process up


So with regards to the chemo there are a few different options of pre transplant regimes. Now I am no doctor so don’t quote me on these as it was a long time ago, but in 2011 I was “offered” the options of 3 different reduced intensity regimes:

  1. FCC – lowest intensity – usually used for Aplastic Anaemia patients
  2. FBC (2 days of bulsulfan) – mid intensity – used for AA/MDS
  3. FBC (4 days of busulfan) – higher intensity – used for AA/MDS where higher level of blasts of chromosome abnormailties.

In 2011 I had option 2 with no pre chemo. This time round they had previously suggested I would first have chemo for 10 days (DA), then have a 3/4 week rest period and then have a reduced intensity pre transplant regime likely of option 3. However, after chatting to the consultant today they are debating giving me a standard pre transplant regime which is usually used in patients with full blown leukaemia because of the speed that my MDS is starting to progress. This is not good news for me as it will give me much much worse side effects so I will feel like bollacks for during the transplant and likely my recovery time will be longer too…..


At the moment it seems there are 2 donors on the register for me, but they are only 9/10 matches (last time I had a 10/10 match). Now with a 9/10 match the chances of the graft failing is much higher and also the chances of GVHD are much higher. (GVHD – graft versus host disease – this is when the new donor cells start attacking my body. It can affect my skin, gut, liver, kidneys, mouth, eyes. Apparently GVHD can be good though as it means the donor cells are more likely to kill off my leukaemic cells, however again its more likely i will feel like shit, stay in hospital longer and it can be life threatening. They are going to continue looking for a 10/10 match but I think it might be unlikely at this stage 😦

Line insertion

So after all this news I finally went to get my line inserted. Check me out:DSC_0846

The procedure was actually very slick this time, and they didn’t struggle with all my scar tissue as i thought they might. I think the idea of the procedure and what they are doing is actually worse than the actual thing.

At kings they do it in an x-ray room with an ultrasound and x-ray to hand to look for the veins and position of the line then and there. For me the worse part is being made to lay flat (I get nasty reflux sometimes, especially when anxious) and having the surgical cover draped all over your face, it can be a little bit claustrophobic. You have the local anesthetic put in, which is nasty and stingy, but after that point all you can feel is a lot of pushing. It was all over within half an hour and i was set free.

My neck now feels a bit stiff, and I had to go get my dressing looked at as I continued to bleed for a while after, but generally I feel ok.

Spinathon – fundraising event – Pain for Paine!!

Tomorrow will be day 3 at the hospital for the dressing to be changed…… but most excitingly its the fundraising event at work!!

I’m hoping to cycle the full 4 hours if my neck isn’t too sore and my body will let me!! Please sponsor us if you can spare a little dollar!!

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