The Future Begins.

It is 'Cell Day Eve' and I feel an update is more than appropriate! Since I last wrote, a lot has been going on in preparation for the Stem Cell Transplant. 

 

Firstly, I had my radiotherapy planning session, which went fairly smoothly! I had a Vacbag to lie in - it's like a big bean bag that they then deflate so it's solid to your individual shape, so you move as little as possible during the radiotherapy. Dad told me today that he hoped I could keep it and hang it on the wall like they do with Han Solo in Star Wars...needless to say I asked them what they do with them and they do infact reuse them as they're thousands of pounds each...Not as exciting as the modern art installation I think Dad had planned... I then had a CT scan and tattoos made to help line up the radiotherapy machine for each session. Later on the same week I had my Hickman Line fitted and a bone marrow aspirate under sedation. Again, this all went fairly well and the day after, the line got the all clear and I was able to have a lovely lunch with Maddie, despite the hospital nearly wanting to give me blood.

 

The following week I then had a lung function test at the Royal Brompton Hospital, which despite having low haemoglobin and not being able to breathe properly as a result, seemed to go ok enough for them to clear me for transplant! I was able to get back just in time to have a lovely meal out with the Warings to celebrate Phil's birthday! That week I also got the all clear from my dentist and opticians. And Phil and I had a lovely dinner out at the The Oak on the Green, again, for his birthday :), was incredible but as ever, the portions were hugeeee and even managed to defeat Phil!

 

That weekend was Phil's 24th birthday, despite working lates, we were able to enjoy a steak sandwich lunch together and one of his two birthday cakes (the Lego Bad Cop was for work, naturally!), which Lottie very very kindly helped me with!

Enjoying his steak sandwich - I think!

Lego Batman & Bad Cop Cakes

 

After Phil had headed off to work, I then drove up to my Grandparents' and Auntie's for a really nice dinner to celebrate my amazing Auntie Boo's birthday, which later that week, and have a good catch up with them all! Was so great to see them all before my next stint in hospital! That Sunday I drove back to go to Alice and Woody's leaving BBQ before they go off on their next big adventure round the world for an undefined amount of time (I've been told 18-24months but wouldn't blame them if they continued on for longer!!) Hope you both have a fantastic time!! :D And was great to catch up with both old and new faces!

The following week continued to be busy with a good trip up to Milton Keynes for Phil and his mate, Daryl, to do some indoor skydiving! Looked amazing fun - below is a little taster of how awesome the instructors are at what they do! Definitely on my to-do list when I'm 100% again.

Poor Phil's second rest day was then spent having to be dragged up to yet another hospital - back to the Royal Brompton again for a Cardio Assessment Day. I had to have an echocardiogram (ultrasound of the heart) like before, a posh cardiovascular MRI, blood tests and a chest xray. The good news is that although I do have extremely mild mitral regurgitation, it had only essentially been picked up on because I was so ill during my last echo (so my body was under more stress) and because the equipment they have nowadays is so sensitive. So my cardiology consultant there has no concerns with me having the transplant and is more than happy for me to go back for a check up in 9 months time, but only if I want to put my mind at rest essentially. There have also been some very small changes to the heart muscle, but this is due to the previous chemotherapy I have received, and is still very insignificant as I have no clinical signs related to this. All-in-all, not bad going!

Finally, I had a couple of days to sort a few bits out before heading back into The Royal Marsden, and got to spend a lovely evening eating my body weight in sugar and carbs at Creams in Chatham with the lovely Ellie, Lucy and Alice! In my defence, I was told to eat loads before transplant! I was on doctor's orders!

Yummy!!

There was nearly a little problem in the whole transplant saga though. It is me after all, and nothing could go completely swimmingly. I was asked the 18th to go to an appointment with my consultant at the Marsden on the 20th, as there had been changes made to my plan that needed to be discussed. Naturally, preparing for the worst but hoping for the best, I was expecting it to be a problem with the donor - after all, it was so close to transplant, she would have been due her pre-GCSF medical check up and there are only so many changes that can be made... Luckily, however, I got a phone call on the morning of the 20th from my clinical nurse specialist, who explained that the donor had nearly not been able to donate but now could continue on the days as planned so I didn't have to go in for the appointment! Pheww! And it was still all going ahead as anticipated -  yay!!

That Friday, Dad took the day off work and we had a nice drive over to Surrey for some lunch at a lovely pub (see below for what remained of Dad's chicken wing lunch - even managed to save some on his shirt for the journey home!) and to see the Laws' and their amazing managerie of animals! I was even privileged enough to get a very exciting ride in the MG (thank you again)! It was a lovely day and the weather held out well!

The 'left overs'

Saturday then brought the trip back to The Marsden with the ever long suffering Phil. As per my protocol on the last blog, I got my chemo, which brought with it a tremendous amount of nausea and vomiting that night, but that has since improved thank goodness. Mainly due to being written up for every antisickness they could think of! On the Sunday, Lottie and Dad very kindly came to visit and I promptly beat them impressively at Scrabble, even if I do say so myself! Mum wasn't feeling well so had to stay away unfortunately. Phil came to visit on Monday too which was lovely (I beat him at cribbage :P ), and I also started my radiotherapy that day. I've had two sessions a day since with my last one this afternoon. I have had to have a few potassium top ups again, and I also got the Campath for the first time yesterday, which is to help you to not reject the transplant. This was the drug the consultant said if I was going to react to I would, and boy did I not disappoint - coughing, wheezing, chest pains, swollen throat, vomiting, and sooo many hives! Nothing a little Salbutamol, Piriton, Hydrocortisone and antisickness couldn't sort out though. Before I knew it I was ready for my afternoon radiotherapy dose, despite looking like I'd drunk some Pollyjuice Potion...(Harry Potter fans will understand :) ) My poor mum and Lottie had come to visit and all they had to witness was that unfortunately....

Today, I started my Ciclosporin, which is an immunosuppressive drug I'll be on for a while  to prevent rejection of the transplant. Not so helpfully, over the last few months I've started craving Lilt...only problem is you can't have Grapefruit (which I didn't realise Lilt had in it) with Ciclosporin as it prevents the drug being eliminated from the body so you can end up with high levels of the stuff. This then leads to increased side effects - not good. So that's off the shopping list for a while! I also had another dose of Campath today...I had all the premeds like the day before and luckily this time I didn't have a reaction (and as of yet haven't, so-far-so-good!) I have a potassium pump and final ciclosporin dose this evening and then I am all set for whatever tomorrow brings! Unfortunately, due to the sleepy affects of Piriton I wasn't able to have a game of cribbage with Dad who had come to visit me - again, another pretty boring day for visitors - sorry!

Thank you to everyone for their very kind messages and cards in preparation for tomorrow - you know who you all are! After tomorrow my counts will flatten, I will be in isolation in my lovely side room until they come back up. Infection, with me is probably highly likely, but I do hope to update you all on how everything is going in the near future!

Much love to you all xxx