Facing up to fears

This is a really tricky thing for me to write about as I feel at risk of upsetting people and I really don’t want to do that, however I thought it was something really important to share with others so they are not alone with these issues.

So I have just come back from a trip to South Africa for one of my best friends wedding – Firstly I want to say this is truly amazing I was able to make it full stop and its all thanks to my second transplant – Which are now available on the NHS!!! Woop!! Secondly I have decided this will be the topic for my letter to my donor – without their help I would have not been able to make it. Thirdly – It was an amazing trip and I feel so lucky to be able to be there for my best friends wedding day!

However, the trip didn’t come without its challenges for me……

Firstly I had never flown long haul – ever! My longest flight before this was 3.5 hours to Greece (this cancer malarkey somewhat puts a downer on my traveling- either doctors won’t let you, you don’t feel up to it, or it feels too damn scary to go that far). I had never even got out of my seat on a plane, let alone gone to use the toilet and I’m not sure this is something that could ever be avoided on a 12 hour flight.

The idea of flying long haul made me really really panicky. I was scared I would have a panic attack on the plane and there would be no way for me to deal with it. A few years ago I used to frequently get panic attacks, mostly on public transport or in stressful situations. My normal coping mechanism was to get out of the situation and walk. Basically go outside and walk. My main fear with the panic attacks stemmed from nausea and I would just want to try and escape from it. However, you can’t just get off a plane when you feel a bit panicky can you?!?!?!?

Secondly, I hadn’t yet been away for more than a few days after this second transplant. Let alone for 8 days half way across the world!! What if I got ill? My sinuses were already playing up, just the air conditioning on the flight could be enough to play havoc with that!

Thirdly – and it turns out the hardest thing to tackle at a wedding – PEOPLE!!

Now I think you will surprised when I tell you I actually suffer with an element of social anxiety. I actually think my over confidence is part of that. This last few years I have struggled with bigger organised events, or even just smaller meet ups. I don’t do anywhere near as much socialising as I used to, and I find I have to push myself to do it. It tends to be worse when its more hyped up events with more pressure to have a good time or get dressed up, i.e. new years eve, birthdays, weddings(!). It feels much easier to spend the evening on the couch, in your pj’s, watching Grey’s Anatomy with the dog.

Most people spend 8 hours a day in an office/school/environment with lots of other people around them. Lots of noise, conversations, etc. I don’t have this. At the moment I spend the majority of the day on my own. My dad/brother might be around, but usually in different rooms. I can choose what I do, when I go out and when I see people.

So I’m going from quiet days to 8 full days with LOTS of people. Its hard to describe quite how draining this is. You really don’t appreciate how draining this is until you’ve experienced it. So this is the point where I would like to apologise for sometimes disappearing to my room by 8/9pm, but by that point my head could no longer cope with keeping up with conversations. I was exhausted. I just want others in similar situations to understand that this is a totally normal thing to experience, and it feels really stupid to say it but spending more than a day with people is tiring!!

I am not ashamed to say that diazepam got me through the majority of my days on this trip! But I wouldn’t have missed it for the world.

Ignoring all the challenges of the trip I had an absolutely fantastic time. Got to spend time with the friends I love. Meet fab new people. Explore an amazing country. And most importantly be part of my best friends wedding. Much love to the happy couple xxx

 

 

World MDS Day

It seems to take me ages these days to sit down and think about writing me blog….. I can only think that is a good thing as it usually means there is nothing nasty going on in my health life, and everything else just feels a bit ordinary!!

Tuesday 25th October was World MDS Day. We had planned a flash mob in London, and in a few other locations in Europe to help raise awareness. We were meeting at 11 to rehearse and then deliver at 1…….

Now stupid me totally missed the memo containing the choreography, until 11:30pm the night before!! So ended up attempting to cram it all into my head whilst on a jam packed train to london. Worse…. I dragged my mum along and didn’t tell her we could have learnt days before!

Despite my last minute attempt to learn I still opted to stand near the front of the group, made quite a few mistakes, but who cares!! We did what we wanted to do and had a really good time. It was great to meet fellow supporters and just a fun day out!

Please watch and share the video

 

Health wise – The antibiotics seem to of done the job and I appear to be sinusitis free!!! Woop!! Bloods are still doing well…. Keep your fingers crossed as things are looking good!!

Busy week up ahead with talks for Anthony Nolan and a meeting at the house of parliament about second transplants!! What to wear?!?!?!

 

 

 

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!!

Funding 

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

Chemo

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…..

Donors

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:

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!! https://www.justgiving.com/teams/pain4paine

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!!