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

Some Things Are Worth Fighting For.

I finally got discharged on Tuesday despite itching to go home on Sunday. My neutrophil counts were above 1 Sunday, so I was hoping the doctors would let me out the next day at least. Only it wasn't to be... I think, due to the state I had been in only a week earlier, they wanted to keep me in until the consultant said it was ok for me to go. They were also concerned about whether my platelets were able to keep themselves above 50 whilst I am on Tinzaparin for the new clot in my neck. So they needed reminding that I have a good relationship with my local hospital and can go for bloods there if needs be, so it would be nice if I could go home!

On Tuesday, I did have a consultation with my radiotherapy consultant before finally escaping! Apparently, usually I'd have my Stem Cell Transplant talk before the radiotherapy talk to ease me into things, but because there isn't a huge amount of time between now and my stem cell everything got reordered a bit. As a result, the radiotherapy consult seemed a bit full on, with a lot of information on how the radiotherapy will work and all the lovely side effects that go with it!

On Wednesday, after a lovely night in my own bed, Phil very kindly took me back up to the Marsden for my Stem Cell Transplant consultation, and repeat bloods. The consultation was fairly standard, and didn't really tell me anything I didn't already know. But for the benefit of all you lovely people I will try and give you a run through of what the next stage will entail! This link is also very good for additional information, and runs through the procedure nicely.

Firstly, my amazing donor is female, 31years old, Welsh and with a blood group of A- (this is only really of interest because this is what my blood group will change to after the transplant!). On Monday, I have my radiotherapy planning session at the Marsden where they run through what will happen with the treatment procedure, place little dot tattoos on my upper body to help them align me correctly for each treatment, and have a CT scan to double check the alignment for the treatment and the amount of radiation exposure I will be receiving.

On Wednesday, I have another kidney function test like I had at the very beginning of all my treatment and prior to my Flag-IDA cycles. I also have more blood tests. I don't have to have another MUGA (heart function) test luckily as I had the echo at the Royal Brompton. However, I may have to go back there for a trans-osoephageal echo as they found that I have mild mitral regurgitation. This means that I have a tiny leak in the valve between the two chambers in the left side of my heart. For all we know this could have always been there and it's just an incidental finding, as I don't have endocarditis (where the bacteria affect the heart valves). I have also never been found to have a murmur, nor has it affected me, so I'm not really sure what they intend to do about it (if anything!).

On Thursday, I am being admitted super early for my Hickman line to be placed, my PICC line to be removed and a bone marrow to be performed. (Not a full-on day whatsoever...). And then on Friday, I'm back at the Marsden for them to check the line site, flush the lumens and change the dressing. 

The following Tuesday I have a lung function test at the Royal Brompton (and hopefully the second echo!). And then I'm due to be admitted for the beginning of my Stem Cell Transplant procedure on Saturday 22nd August. That day I also receive the high dose chemotherapy - Etoposide 60mg/kg IV undiluted over 4 hours. Standard chemo side effects with this - nausea, vomiting, mucositis, hair loss, gut changes, fatigue, infection, tiredness, lethargy etc. etc. All this to look forward to! Then the Sunday I have a rest day! Lucky me! Apparently if the chemo doesn't affect me too much, I may even be allowed out on day release!

Then the Monday the fun starts with the radiotherapy! 2 sessions a day, 50mins (from set up to finish) each session, for 4 days at 9am and around 4pm. Early side effects include: swelling of the face (like mumps), redness of the skin, diarrhoea, abdominal pain, nausea and vomiting, mucositis and sore mouth, loss of taste, hoarseness of voice; late side effects include: hair loss, somnolence syndrome (tiredness, irritability, and loss of appetite), pneumonitis (NOT pneumonia - inflammation of the lungs); long term side effects include: cataracts (in fact 1 in 2 patients may end up with them in the long term), infertility (as aforementioned), hormonal changes including, hypothyroidism, second cancers (2-5% of patients within the next 10-20years), risk of infection (if the spleen is affected), cadiovascualr problems (slight increase risk of heart attack and stroke). So yes, the list is fairly full on, but the benefits far outweigh them!!

On my last two days of radiotherapy (26th and 27th), I receive a drug called Campath, which apparently "if I'm going to react to anything, this will be it!", as it is of animal origin and so the body straight away has a hissy fit about it not even being human. This can result in fever and rigors mainly - oh yay, the same as with an infection! However, they do predict this and give antihistamines and other drugs to reduce the reaction people inevitably have thank goodness! The second dose is better though apparently as by then the body has adjusted usually. The drug is an immunosuppressant to help the body prepare for receiving the transplant so that the stem cells aren't rejected. I also start Cyclosporin on the 27th (1.5mg/kg over 2hrs IV BID), another immunosurppressant to also help the body prepare for transplant. My donor over these two days will be donating her stem cells peripherally, which means she will essentially give blood, where it will processed to separate off the stem cells and then the remainder returned to her, until a minimum number of stem cells are collected. I then receive the fresh stem cells on 28th August, and so the waiting game begins! I am then put in isolation (so only allowed family and Phil to visit) until my counts have completely fallen to 0 again, and then begin to come back up. I have regular tests to check for certain viruses that I have been exposed to before to assess whether they are reactivating or not when my bone marrow gets obliterated, so they can medicate me to prevent them from causing a problem. I also, as usual, get daily blood tests to check my blood levels, so that I can receive blood products should I need them, and to see how my white blood cell count is doing, and also to check the cyclosporin levels in my body. Once my count goes over 0.5, I'm out of isolation, and then just have to wait to fully recover before I'll be discharged.

Side effects can continue for 3-4 months, and I may have some aspects of 'normal' life back from Christmas. However, this varies greatly between patients. At first, it will be very similar to how things have been lately, with the need to avoid crowded places, public transport, going out for dinner at peak times, etc. and I will essentially be on a pregnancy diet, which is a bit better than a neutropenic diet at least! I will be on cyclosporin for approximately 6 months, by which point they will try to start weaning me off it. However, it's main role is not only to stop me rejecting the transplant but also to control the Graft vs Host disease that can be a major side effect of the process. This is where the graft can have a reaction against the body and attack it. It most commonly affects the skin (soreness, itchiness, in extreme cases, blistering and peeling), digestive system, and liver. The benefit of this reaction, however, is that the graft can also attack remaining cancer cells. If you'd like to read up more on this, this page is quite good: http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/gvhd/about-graft-versus-host-disease.

Think that covers most things but if you have any questions please take the time to have a read of the links I have added prior to asking me, since, as you can see, I have a lot going over the next few weeks so may not be able to reply very quickly! Otherwise, I hope to catch up with those who I haven't been able to before the transplant as soon as I can post-transplant! Please bear with me though, as I may not be able to see everyone I want to as soon as I hope to, but I will try my best. The next few months will certainly not be a walk in the park though, so also please bear with me in terms of keeping in contact too! Thank you all for your understanding! :)

Much love to you all! xxx