This Might Hurt A Little.

Apologies for it being a considerably long time since my last blog. Initially this was because I was having far too good a time enjoying feeling almost normal again. However, this was soon not the case and I was admitted to The Royal Marsden for a good couple of weeks with a weekend's break in the middle.

Anyway, I shall start from the middle of October, when I had a lovely lunch out with Grace at Zizzi's - it was brilliant to catch up and it was so kind of her to drive all the way to Kent. It's so frustrating not being able to drive at the moment but the drugs I'm on just completely wipe me out. I managed to catch up with Lucy and Ellie and bake an extremely yummy coke cake and had a delicious lunch at the Bake House in Biddenden. Lottie and I also went pumpkin picking and carved them out for Halloween, as you can see below.

We then managed to squeeze in a visit to Boo's for lunch along with my Grandparents, it was so nice to see them all.  Sara, Will, Thea and Etta kindly visited us briefly on Halloween, it was good to catch up. Can't wait to catch up with everyone properly at Christmas :).

Phil and I managed to get up to Bluewater after a standard Monday visit to the Marsden. We saw Spectre in the imax there, which was pretty cool, and started a bit of Christmas shopping. Amy visited at the beginning of November, and we went out for lunch at The Oak on the Green in Bearsted, which was very nice. Again, it was so kind of her to drive all that way to see me. Phil and I also finally got to catch up over dinner with Sean and Kath at The Park Gate, it was good to see them.

Unfortunately, the following day I started feeling unwell. That week, because I had been doing so well, my doctor wanted me to start reducing my Prednisolone so that I could begin being weaned off my immunosuppressants. However, my skin didn't like the idea of this very much so I stayed on a slightly lower dose instead of completing the weaning process. My guts also had a bit of a tantrum about the lower dose, and I started having stomach cramps that wouldn't even go away with Codeine and Paracetamol. I was feeling really unwell and had to cancel plans to meet up with Maddie and spending a nice weekend with Boo and my Grandparents :(. The following Monday, I had my bone marrow aspirate and check up with the doctors who then admitted me to sort out the stomach cramps. I discharged myself on the Friday as I was fine by then but throughout this time the small amount of neuropathy I had been experiencing had also got worse. 

I was experiencing tingling in my fingertips and toes initially but now this has progressed up to my elbows and knees, and is very painful as well. I had a nice weekend at home despite the pain, but was back in Monday for a check up, and the doctor admitted me again to treat a virus that can reactivate post stem cell transplant, and had in my case. The drug required to treat it had to be given IV and can affect your electrolytes so I had to stay in for at least a week of treatment. There is some concern though that this drug has made my neuropathy worse. However the doctors don't really know and have referred me to a neurology specialist at St George's Hospital to try and work out what is going on. I had to have a brain MRI, which came back fine, and I also had to have a lumbar puncture to take cerebral spinal fluid (CSF) samples. The results of this I'm still waiting for but I do have a high amount of protein in the sample, which is indicative of inflammation, so they're keeping a close eye on me for a good while until I have my referral appointment and more results come back. It does mean that at the moment I'm on a high dose of Tramadol and Paracetamol just to take the edge off the pain. I got discharged yesterday but have to go for a check up tomorrow, and I'm hoping that I might actually be able to stay out of hospital this time!

A big thank you for everyone's support throughout this time, and for all the visitors I've had to the hospital - I'm sorry it's not the easiest place to get to!

Much love to you all xxx

There Is No Gene For The Human Spirit.

My last blog was quite a while ago now, and I'm glad to report that things have improved greatly since! During my last few days in hospital it was a bit of a struggle. I was still spiking the odd temperature for the first few nights, so was still on antibiotics. Nausea was still an ongoing issue, though was improving and being better controlled by the antisickness over the course of the week. My taste was still the biggest problem, however. I was starving, and weak and fatigued from not only the chemo and radiotherapy I'd had but also because I simply wasn't getting enough calories in me. For a week or so all I could taste that actually tasted as it was supposed to was raspberry flavoured things. So I was on raspberry Fortisips (a high calorie nutritional supplement especially designed for this situation), raspberry jelly, and vanilla or strawberry ice cream wasn't too bad. But other than that, everything tasted fairly foul. And what was worse was that it seemed to change on an almost hourly basis. They do say that your sweet tastebuds seem to get back to work first, but it seemed like the rest were taking forever! I was also pretty exhausted for this week. Although I'd had a lot of bed rest in CCU, it wasn't proper rest and it had taken its toll - I slept, a lot, with the afternoon/evenings being the only time I could really do anything. I desperately was trying to do some physio during this time too as my body looked like it was made with match sticks after all the bed rest I'd had. Some nights were really tough and I just ended up crying, complaining that I wasn't getting anywhere with my recovery. Cue reality checks from multiple members of staff - Elsa (my social worker), the nurses and Carla (the physio). They all reminded me that not a week ago I had been in an induced coma and had only been out of CCU a few days! I had to let my body recover - but you know me, wanting to fly before I can crawl, as Phil said.

Anyway, I got discharged on 25th September - a small miracle considering where I'd been only a week before! But I couldn't wait to get home to start on my recovery properly - there is only so much you can acheive in hospital. Within a few days of being at home I was able to eat a lot better, even managing a small roast dinner on the Sunday I was out. I had an appointment at the Marsden on the Monday with the Transplant Clinic to check my bloods, etc. and have a catch up with my new Clinical Nurse Specialist and the doctor. All went well and, despite the enormous amount of drugs I'm still currently taking, managed to get home in time for dinner. That Wednesday, however, I spiked a temperature of 38 for a couple of hours in just one of my ears, annoyingly. I phoned the TCT and they told me - yes, I should in fact go to my local A&E and have some IV antibiotics, much to my dismay.

So, I ended up in Maidstone A&E that afternoon with poor Phil having to take me before starting his night shift. The receptionist was brilliant, phoned through that I was there and put me in a side room. 40 minutes later, however, I still hadn't been seen - the receptionist was livid. And when I did get seen, I now didn't have a temperature - great. That didn't stop them from taking blood cultures, bloods, and making me have a chest xray though - standard infection procedure. I was then moved to the majors A&E ward and put in a side room, and desperately tried to get hold of the Marsden to see if they had a bed for me. They didn't. And Maidstone were terrifying me slightly with their apparent lack of knowledge on Stem Cell Transplants (which is fair enough, they're only a general hospital at the end of the day). But either way, I knew I'd be happier and better cared for at the Marsden. I ended up staying on the UMAU ward until Saturday morning. The haematology doctors only first appeared to visit me on the Friday, as they apparently 'weren't aware I was in' - even though my dad had been up to the haematology ward and informed them on the Wednesday. They were brilliant once I was seen by them but the communication before that was an utter shambles. It's at times like that when you really see how much strain the NHS is under. That and when you can't have toast on a Saturday morning and just have to have bread because there's too few people to serve the breakfasts so they don't have the time :/ quite bizarre - I would have done it myself if they'd showed me where the toaster was!

Anyway, the Marsden finally had a bed for me on Bud East that Saturday and within 5 minutes of the ward sister at Maidstone telling me, the hospital transport arrived (small miracle!) and whisked me off! I hadn't spiked my entire time at Maidstone, so the Marsden got me straight onto oral antibiotics and discharged me the next day - result! Especially, when Maidstone wanted to keep me in until the Monday on IVs at the very least! Since I'd been in the Marsden and had my bloods redone, they even let me wait until the Thursday before having to go back to be seen at the Transplant Clinic, which was very kind of them! As my appetite and taste was still improving each day, I couldn't wait to get back to home-cooked food!

That following week was Dad's birthday, and despite going down with man flu, he still managed to get very excited about his new ice cream maker and sandwich toastie maker! Lot and Dad also went off to see Michael McIntyre on the Saturday, as I'd bought tickets but wasn't able to go as I still have to be careful around large crowds of people/public transport/ill people/children/pets/anyone who may have chicken pox or shingles etc etc. I'm not entirely sure it was their cup of tea but they said they enjoyed it, and very kindly bought me and Phil tour tshirts. I have also tried out my new snack maker, which was a lovely birthday present from my Grandparents, and made some yummy mini doughnuts!

Mini Doughnuts

This last week has involved another trip up to the Marsden for the Monday Transplant Clinic. I saw Celina and had a good catch up with her too, which was really lovely, as well as a few other inpatients! My blood and bone marrow results are all currently looking good though! They test my blood and bone marrow to check how much is being produced by my donor stem cells vs my own, so ideally you want to be 100% donor after transplant - which I currently am! And the tests for leukaemia and MRD from my bone marrow are all negative! Woop! I have another check for all this at my 3 months post transplant, which is 16th November (can't believe how quickly that has come about!). At that point they will decide if they want to restart me on the intrathecal chemotherapy as a maintenance precaution. But at the moment, touch wood, everything is looking good. 

At 3 months post transplant they also start to wean you off the immunosuppressants, very slowly, so I should have that to look forward to. I did have some Graft vs Host Disease - skin and guts - post transplant, but this has settled down with the immunosuppressants. Obviously though as they start to wean me off them this could re-occur. And the chronic fatigue is an ongoing issue too. Apparently it's not like coming off chemo where you just keep improving, it more waxes and wanes. So one month I could feel a lot better and then I could feel rubbish all over again.

I was also very kindly nominated by my Clic Sargent Social Worker for an 'Astonishing Achievement' award for a university/higher education level young adult at the UK Youth Achievement Awards, which to my amazement I won! I wasn't able to attend the actual event unfortunately, as it was the day after I was discharged after my transplant, but I very kindly got some goodies and my little trophy and certificate still!

My Award from the Youth Achievement Awards

My main aim over the next few months is to keep on it with my recovery - keep my physio going and my calorie intake up! And I'm looking at undertaking a certificate in business (or similar) to keep my brain going and top my CV up, as well as cracking on with the rest of my research project and going over my vet stuff. I'm planning on getting a job, if I can manage it, in the new year, so this will help with my applications hopefully, as well as, supporting my vet work too. We get some insight into the business side of things on the RVC course, and what we do get is quite good, but there's not nearly as much as I would like. So, I figure I may as well use the time I have now wisely and save myself some hassle later.

This week I've also had a lovely couple of days out. I went with Phil to Ashford for a bit of shopping and lunch yesterday, which was great - I had a yummy Chicken Ramen in Wagamamas - just what you need on a miserable Autumn day to warm you up! And today, Grace very kindly made the long trek from Ipswich to Kent to visit me - we went into Maidstone to close our joint account (end of an era!) and had a very nice lunch in Zizzis, where we both ate copious amounts of pizza and pudding! Was sooo nice to catch up! Have missed my old housemate a lot! And a massive thank you to her too for my gorgeous birthday pressies!! Must catch up again soon!

Yummy Wagamamas Lunch with Phil :)

Tomorrow, provided I'm not too exhausted from this week's events and the weather's not too foul, Lot and I are planning on going pumpkin picking! So, hope you all have a lovely few weeks and I shall update you all again soon! I also intend to start my long list of people to catch up with, so please bear with me, and I hope to see some of you very soon!

Much love to you all! xxx

Here They Grow Again.

So...the last few weeks have been interesting to say the least... I had my brand new stem cells on 28th August - an exciting but nerve-wracking moment, as we were all hoping I wouldn't have a reaction, or any complications. Naturally, that wasn't going to happen...more about that later... It was also Mum's birthday that day so we had a nice little celebration for her too! Lottie made her an amazing looking lemon drizzle birthday cake too - which I look forward to having when I get out of hospital and my taste buds are back to normal! Mum put a couple of slices in the freezer for me.

After the stem cells I was hit with a hideous bout of mucositis, to the point where I couldn't drink or eat anything. I was receiving total parenteral nutrition (all your nutritional requirements through an IV) as I couldn't eat, and fluids and electrolyte top ups. My counts went flat after a couple of days, which was good as the graft could then embed itself. However, I then went down with an infection, which unfortunately it was discovered had come from the stem cells I'd received. Nothing we could do about it though so whilst I had also started patient controlled analgesia in the form of a nice variety of opioids - first Fentanyl, then Morphine, then Oxycodone.... - I was started on antibiotics. My kidneys then decided they'd taken a bit of a hammering and I got diagnosed with Acute Kidney Injury, which I am still in the process of recovering from.

My graft then started embedding the following week, as my counts started going up by themselves, but the kidney problems, sickness, infection, mucositis and other side effects persisted with a vengence. By the end of the week my mouth and throat were starting to heal and I could at least talk a bit again and sip at water. However, I'd been put on oxygen as my breathing was poor and given frusemide as I was retaining so much fluid. Then, last weekend, I was moved to the Critical Care Unit at Chelsea and put in an induced coma as I couldn't maintain my oxygen levels. 

 

Dad never misses the opportunity for a photo

I can't gather, as of yet, exactly what they did, but I do know I had a CT scan, samples were taken from my lungs and fluid taken off them. I was put on a Propofol + Fentanyl CRI (continuous rate infusion) but could still manage to communicate by writing on a white board - veryyyy weird experience that I do not wish to ever repeat. I was extubated (had my breathing tube taken out) after 3 days and had to deal with some really hideous sickness due to antibiotics and other drugs. My taste buds are wrecked too now which doesn't help - nothing tastes right and I'm struggling on an hourly basis to find something that I can stomach... Dad very kindly kept bringing in a variety of foods to try, including a Whopper from Burger King, which although smelt amazing I couldn't stomach one bite of - to his luck! All my family were absolutely incredible throughout my time in Chelsea, visiting me regularly and helping me keep strong throughout the toughest week of my life.

The Whopper

I finally got back to TCT on Friday evening to an amazingly warm welcome from all the staff! The critical care unit staff were brilliant but it just wasn't the same as Sutton. TCT is just a home from home and I didn't feel like I was making much progress at CCU and was getting very frustrated. I also did not want to spend a moment longer there than I had to, especially with my birthday approaching.

My counts are good now, meaning that my graft is hopefully looking promising. I am spiking the odd temperature still though and each day is still a struggle. It will be a long road of finding foods I find palatable/don't make me feel sick, physio and rest that I have ahead of me, with 'some normality' hopefully by Christmas but I'll be on immunosuppressants for a while yet to reduce the GVHD effects, which I have also experienced (nicely pigmented and peeling hands and feet...). I'm not entirely sure what happens next but no doubt I'll find out soon enough.

Today I was exhausted, sleeping in until midday, when Dad, Lot and Phil (on very little sleep) joined Mum and I, arriving with a ton of fantastic presents and cards! The TCT staff were also incredible and made me a cake and gave me a gorgeous card and present.

The incredible TCT staff with a cake, card and present!

We had a game of Scrabble but I was shot to pieces, as was everyone else after the last week I think! So I said goodbye and am currently enjoying some much needed R&R after a couple of hectic days.

Finally, a massive thank you to everyone for all your lovely cards, cakes, presents, messages and facebook posts. You have all given me great strength throughout the last 8 months and I do intend to plan a rather epic road trip to visit you all and thank you profusely in person!

Much love to you all xxxx

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

Some Memories Are Best Forgotten.

Well, the last two and a half weeks have been a bit eventful. I think I jinxed myself well and truly by saying in my last blog that I was likely to be very bored...Mind you, I was being hopeful that this cycle of Flag-IDA would be as simple as the last - how wrong was I?!

So, the night of 6th July (after my last blog) I spiked a temperature, which I was expecting as last time I had an infection exactly the same day post chemo, etc. I was pretty quickly moved to a side room; however, I wasn't expecting to still be spiking temperatures a week later. The antibiotics I was on were obviously not helping and my antifungal got changed too, in case that was the cause of the infection. I had two bacteria present in my blood and a UTI to boot, and following many chest xrays, a chest CT, and crackles present over my chest it was obvious the infection had got into my lungs. I also had to have a head CT as I had visual disturbances and headaches, but this was put down to the change in antifungal, and have been fine since. To help treat the pneumonia I had regular physio with a machine called 'the bird' that helps force oxygen into the bottom of your lungs to help open up the lobes that are affected by the pneumonia and get up some nice amounts of phlegm. Because of the anticoagulants I've been on for the blood clots, and because my platelets were low, I was also coughing up blood, which probably contributed to the introduction of the bacteria into my lungs. After being put on oxygen, it simply wasn't enough to keep the oxygen saturation in my blood high enough, so I had to be put on another machine that forced oxygen into my lungs, again to open up the affected lobes. It also helps by humidifying the oxygen to aid transport of the oxygen into my blood in the lungs. My PICC line had to be removed as well, as they thought it was harbouring the infection, so I was back on cannulas, which are simply impossible to put in me now - I managed to have one decent one for 9 days that bled back(!), but that eventually gave up the ghost and I needed another one.

By this point I was feeling pretty weak, and there was talk of me possibly having to move to the 'step up' unit in the Marsden, where you receive one-to-one nursing care (similar to a critical care unit). This was last Wednesday, and when Dad came to visit, he could see how much I was struggling. Mum came up to stay with me (thank you so much to Alicia for giving her a lift up!) and helped me through a really rough few days. If the whole pneumonia thing wasn't bad enough, the new antibiotics (that were finally working!) were making me feel sick the entire time as I needed them three times a day, and the antisickness I was on were simply not working. I felt rough enough from not being able to breathe properly but considering I couldn't eat properly either, I was hardly able to move without exhausting myself. Finally, by the Monday I had turned a corner and was no longer feeling sick thanks to a pump that constantly administers a strong antisickness (that does make me feel out of it all the time) but means I could finally eat properly again. They tried to put a central line in my neck on the Tuesday afternoon as they couldn't get bloods out of my new cannulas and they would inevitably give up at some point; however, naturally with me, it didn't go to plan and they weren't able to place it. I now have a thrombus inbetween the carotid artery and jugular on the right side of my neck in the sheath that surrounds them both. This is causing referred pain down into my chest and my shoulder. It has improved over the last few days; however. The following day they were going to retry putting a neck line in but in the other side, but due to the traumatic experience of the previous day, the anaesthetic team decided another PICC would be better. I would have had one earlier, but there was literally no one on the 'official books' available in the hospital to do one as they were all on annual leave. One of the lovely nurses in Minor Procedures is trained to do them; however, so she said she would do it first thing. The procedure still took 2hours and 4 attempts with the anaesthetist eventually having to place the cannula and guide wire, but the main thing was the PICC line was finally in! The same day, I had to head up to the Royal Brompton Hospital for a echocardiogram (ultrasound of my heart), as one of the bacteria present in my blood can sit on the heart valves and cause them to be leaky (endocarditis). I am still waiting on the report from this, as this will determine whether or not I can come off the antibiotics and therefore, antisickness. If I can, then hopefully I will start feeling back to normal again soon, and hopefully be home soonish, and as I'm now off oxygen, that's all that is holding me back at the moment.

My neutrophil count is 0.6 today, so normally that would mean I could go home, but due to everything that is going on I'll be staying in a few days yet. I just need to have an ultrasound today to check my arm (as it's quite swollen from the PICC attempts) and my neck (from the neck line attempt) for clots. But the main thing over the last few days has been trying to catch up on sleep. I'm absolutely exhausted from two weeks of very disrupted sleep and long, stressful days of procedures. But once I'm back home I'm sure I'll recover quickly.

I need to take all the time I can to rest and recover when I'm out as I'm probably going to be back in on 21st August, as I have a stem cell donor!!! Apparently they're a 10/10 match and we're currently looking at cell day being 28th August, so I'll be needing to be in a week beforehand for the high dose chemotherapy and radiotherapy. I'll be finding out more about the process next week at a couple of appointments, so intend to do a blog about it all then to answer everyone's questions!

Anyway, hope you are all well, and that the final years had an amazing grad ball and graduation ceremony! Was able to watch the graduation on the live stream - very proud of you all!

Much love xxx

You're Never Quite Ready For What Life Delivers.

There's quite a significant side effect to all this that so far I have side-stepped in discussing on my blog, but I feel the time has come to talk about it as it is such an important issue - and that's fertility. As a vet student, fertility is something that is discussed a huge amount - from the importance in all farm animals (dairy cows and their poor fertility especially), to companion animals and the importance of neutering, to horses and their stud management! I have to say, therefore, how surprised I am that fertility is an issue that I feel has been minimally discussed throughout my treatment. Maybe this has been because my approach to my diagnosis has been with the aim of remission regardless of side effects, with minimal delays in getting there. However, I feel this may not just be something that I have experienced, and looking back on would have maybe appreciated more support with.

From day one, the nurses in TCT were very good at discussing side effects and concerns I had, but I never felt the need to speak to a specialist about fertility. Prior to starting my initial regimen I was informed that the chemo would increase my risk of being infertile only by a few percent above the national average. This didn't seem to phase me too much at the time. I did ask if options for freezing eggs, etc. were possible but was informed that this would delay my treatment by quite a long time so wasn't recommended. From my experiences at uni, and common sense, this made a lot of sense to me. At the end of the day, I want to be rid of this condition.

I then had to start my consolidation, which was a far more intense amount of chemo, and included drugs that affect fertility a great deal more (namely cyclophosphamide). So, again, I was informed that my risk of infertility would increase yet again. Delaying my treatment was still not an option, so seeking a fertility referral was still pointless.

However, now that having a stem cell transplant is being recommended, I was lucky enough to be offered a referral. Part of the stem cell transplant process involves radiation therapy, and depending on your age and the amount of radiation you receive significantly affects whether you will have permanent infertility afterwards or not. Now with my condition, full body radiation therapy at quite a high dose is pretty much guaranteed. I am under 25 years old, which goes in my favour, but regardless, the radiation therapy is likely to fry everything. As a result, my consultant very kindly referred me to a fertility clinic to discuss my options.

My experience at the clinic; however, wasn't the best. My amazing, ever-supportive boyfriend came with me, but the consultant's approach to the appointment left a bad impression that will stay with me. He went through my options, which I was already aware of to be fair, but essentially said that he wouldn't recommend I freeze embryos as it can get griefy if partners split up (his words actually were "if you run off", aimed at Phil). I can see his point, but equally he didn't ask how long Phil and I had been together (7 and a half years...), and even said that his opinion would be different if say, we'd been married four years and trying for kids for two already. I felt very much judged and that he'd assumed certain options 'weren't for me' because I was young (for a fertility clinic patient) and single. Freezing eggs was then regarded as my next best option, the process for which takes two weeks, but what with admin and paperwork would take nearer a month. The NHS would have to approve the funding for this but at least it is offered - to my amazement! Finally, there is also using donor eggs or adoption/fostering. I was informed at the appointment that using donor eggs costs about £6,000-7,000, but having done some research I think it's more like £10,000. But either way, there are options out there. So all is not lost!

Having spoken to my consultant at the Marsden, his main concern is obviously to keep me in remission and get me onto my stem cell transplant. And I have to agree with him, so although it would be great to have the opportunity to freeze eggs, my concern is potentially having complications from the process that would then cause me to delay chemo/transplant, which I wouldn't forgive myself for. Also, I know that my condition isn't supposed to be genetic, and chemo isn't supposed to affect eggs etc., but I just can't help there being a tiny amount of doubt in my mind... I mean, how often do we think things one minute and then a research paper disproves it later, and our main problem at the moment is that we don't actually know for certain either way.

 
On a different note! Since my last blog I have been able to catch up with a good few friends, which has been brilliant! I have also been readmitted for another Flag-IDA session, and after my chemo week was allowed home for four days whilst I waited for my counts to drop! :O So, I was very lucky to get the chance to meet up with the lovely (and now qualified!) Grace for lunch :) - was really nice to catch up properly! Can't wait to be able to go visit her and her new puppy in a couple of months! The good news today is that my counts have indeed dropped and I am back in for some R&R whilst they come back up again - so, if anyone is at a lose end, I am up for visitors ;) I have even brought my research project stuff back in with me for when I get bored, so do feel free to save me from myself!

Much love to you all xxx

It Ain't Over 'Til It's Over.

It has been a fairly varied few weeks - which has been quite nice! My last week in the Royal Marsden mainly involved being a bit bored and waiting for my neutrophil counts to go from zero to hero. Katie and I put bets on whose counts would be up quickest - result = I owe Katie a Nandos! :) Had a lot of visitors, which was lovely, and a very brief spanish lesson with Elsa! Trying to get back into learning the language, but only really able to concentrate after chemo brain has passed... The family also got to make the most of the parent pamper evening that Clic Sargent kindly put on once a month. 

Lottie enjoying a glass of wine and foot spa!

The best bit over the last few weeks though was getting to go home when my neutrophil count finally went above 0.5. So have managed to catch up with a lot of lovely people - the old school lot (Ellie, Alice and Lucy) for an awesome curry, the old kennel lot (Hannah, Kate and Lauren) for an equally awesome chinese takeaway, and Steph & Kathy very kindly gave up some of their valuable revision time to catch up at uni quickly today! It's also been lovely to spend some time with Phil, and actually get out to do things and eat out as my counts have been better since being at home this time. Yay! :D

This week I had my bone marrow biopsy on Wednesday for the latest MRD test to see if the Flag-IDA had worked. I got the results back today and thankfully it was good news for a change! My MRD is negative this time around, meaning now I'm low risk at relapsing (see previous blog for more details), which also means I am a much better stem cell transplant candidate! So, now the plan is to have another cycle of Flag-IDA (so another month stint in the Royal Marsden), and then *fingers crossed* go for transplant! I'm not back in until Thursday (providing there's a bed for me), and then the process starts all over again!

Next update again soon I imagine, although how interesting it will be I'm not sure!

Much love to you all xxx

You'll Laugh. You'll Cry. You'll Hurl.

A good week and a half on from the beginning of my Flag-IDA chemo stint and I'm starting to feel 'normal' again thank goodness. I had blissfully forgotten how hard the chemo can hit in terms of chemo brain and general fatigue, but luckily those side effects have been relatively short-lived this time around (still a good week though). Others have very nicely filled their places now instead - namely the ones that affect your mucous membranes - mostly the gut unfortunately. My skin is also extremely dry this time round and nails have become irritatingly soft...but other than that I can't really complain! Just a bit more like 'that' hospital scene in the bucket list now is about all! I'm sure you'd all rather not hear about all this, but I don't see the point in not talking about the rubbishy stuff too! I certainly am not looking for sympathy, I am simply just trying to be informative about all the aspects that chemo can affect in life. I've definitely felt more nauseous and inappentant this time around, largely due to the lack of steroids! But fortunately, I have a lovely boyfriend to encourage me through the rubbishy moments, like when I don't fancy the ham and cheese panini I've ordered for lunch (I think that's probably when he's looked most worried about me, since being inappetent is somewhat of a rarity for me!!). :)

It's been a bit of a mixed bag week to be honest. I've been referred again for massages, which have been most welcomed! Maxine really is an angel sent from the Royal Marsden gods! I wasn't well enough to have a massage this Thursday so instead she put together an anti-nausea scent stick for me - which is amazing - bless her heart! Who knew a certain smell could help so much? I was also able to see the physio last week and have a short session in the gym here. By short, I mean 5mins of cycling, some sitting to standing exercises, lunges (with help from bars) and some steps.. How so much can change in a year - this time last year I was doing insanity for crying out loud... But nonetheless, I was still proud to get through my 15min gym session and still be able to walk back to the Teenage Cancer Trust Unit afterwards (with some help from Phil..)!! I had a lovely visit from my Auntie Sara and Uncle Will on Saturday morning too - was great to catch up, but unfortunately was starting to feel wiped out by the chemo by the weekend.

Despite there being only 3 patients in when I arrived on Monday, by Saturday evening we had a good gathering for the Eurovision. The kitchen put on the most ridiculous amount of pizza, wedges and garlic bread for us to try and eat after we'd already had our dinner too! They do like to spoil the inpatients up there! It was very kind of John (the youth worker) to organise it all though, including providing some appropriate decorations! I had just enough energy to sit through the songs at least, but that was mainly only because I was hooked up to chemo!

Just a couple of the huge trays of food - the trolley in the distance is also full!

The family went on holiday to Norfolk for a week that Saturday too, which luckily coincided with me feeling especially grotty from chemo! It does sound like they had a lovely time, truly exhausting the dog to the point where she was not at all interested in me facetiming them when they got back this weekend. Poor thing is pooped! And has an injured leg to boot... 

This last week has been fairly uneventful though. On Tuesday, I got moved to a lovely side room on the adult ward, Bud East, as the TCT needed my bed for a newly diagnosed patient who was still yet to receive any chemo. Caroline, the ward sister, was so apologetic, bless her, but I really don't mind! For a start - side room + en suite is a pretty nice change - but also, I completely appreciate that there is another patient, who is probably a lot younger than me, whose need and their family's need is far greater. And I'm sure will appreciate the facilities at the TCT a lot more than me at the moment. As a newly diagnosed patient, I think knowing you have those facilities is a great comfort to the horrific blow you've just been given. At least, I know it was for me. And anyhow, I'm more than happy in my own company :) it's just like being back at uni to be honest! Well, minus the great housemates obviously!

Phil came to visit on Wednesday and Friday, which was really lovely! And Ellie came to visit Thursday evening, which was equally lovely - however, I put a slight dampener on the evening by firstly getting chest pains (that luckily went with some Gavascon - slightly embarrassing...) and then, after sending her home as I felt so tired and feeling terrible about it, had rigors. Oh yes, cue the start of another nice neutropenic sepsis. The irony was I had literally been explaining the symptoms to Ellie not two hours earlier! My nurse was amazing and got the doctors to get IV antibiotics and paracetamol into me within an hour. I then had a nice night-time chest xray, and after some further rigors, and several sets of observations, I did manage to get a few hours sleep.

I failed to mention in my last blog about the beautiful blood clot in my armpit that they found on ultrasound when I first got readmitted. I have since been on Tinzaparin (and will be for 6months...) to thin my blood and break down the clot. But since my chest pains on Thursday, they were a bit concerned about me having a pulmonary thromboembolism too (despite the pain going after the Gavascon...). A CT on Friday actually did show some small clots in my lungs...oh yay...but luckily I'm already on the treatment they give for them, I just have to have a higher dose now. 

Overall, the good thing this week is that my white blood cells literally plummeted overnight and were technically unreadable on Wednesday! So chemo did good there, they are still low and so as part of the protocol I receive GCSF from now until my counts are above 1 again. Once they're up I'll be allowed out for 7-10days-ish - woop! Haemoglobin and platelets have both been pretty low too so have been receiving blood products to up these fairly regularly too - the platelets being important particularly because of the blood thinners I'm on. I'm also on two IV antibiotics still to cover me for the infection, but luckily I haven't had any more rigors or temperature spikes since Thursday evening - and we are hoping to keep it that way! I'm also feeling a lot better and have a bit more of an appetite thank goodness.

Mum and Lot came up to visit today. Was lovely to hear all about their holiday and have a catch up, but they both did look very tired bless them! Sounds like Lot didn't get much sleep over the week thanks to Flo being a bit of a pickle! The remainder of my weekend has largely been taken up by Breaking Bad, as I imagine tomorrow will be too! 

In the mean time, I hope people don't mind me not giving my contact details at the hospital out on here since I don't know if I'll get moved back to TCT or not. So, if you'd like to send me anything it's probably best to go to my home address, which if you don't already know you can personal message me for on facebook :) And, sorry and thank you to everyone who has wanted to visit, but I've unfortunately had to turn away for one reason or another, for being so understanding. I do hope to catch up with you all soon now I'm feeling somewhat better. :)

Much love to you all xxxx

Just When I Thought I was out...They Pull Me Back In.

Despite being offered a bed on the Teenage Cancer Trust Unit to start my next lot of intense chemo on Friday, I opted to postpone this until the Monday and have a nice weekend at home with the family before being institutionalised again for at least a month - I needed time to come down to Earth with all the news, as did the family - and also the weather was too good to miss out on!

Had a lovely catch up with Phil's Grandad and Uncle on Friday afternoon. And then Phil and I had a very yummy dinner out at The Old Mill in Kennington with Phil on the Friday night as my counts were so good. We did splash out a bit - I had the scallops in a garlic and chorizo sauce to start, then their steak and lobster plate and the cheesecake for pudding (was all incredible - never a duff meal there!). Phil had the calamari, Porterhouse steak and chocolate and banana pancakes (all also come highly recommended!). Saturday morning, me and Phil did a bit of retail therapy in Maidstone and I treated myself to a Burger King for lunch. In the afternoon, Lottie had her Rally Driving experience at Brands Hatch that Phil and I had got her for her birthday. She seemed to thoroughly enjoy it at least, which we're very glad about! :)

Think she's enjoying it!

And she came 3rd out of 6 (4 of whom were guys!)

Dad then made an awesome paella for dinner! Definitely been filling up on food I won't be allowed for a while!! Was extremely good!

 

So yum!

Sunday involved a bit more of a chill out day. Went to see Phil's family in the morning after packing up all my stuff ready to head back into hospital. And then we had a scrummy, very fresh KFC - another food I won't be allowed for a while! We had a relaxed afternoon watching Fury and then we had a lovely Roast Beef dinner (done medium-rare) whilst I'm allowed! 

Monday, I was back in hospital after a pit stop for breakfast in their canteen beforehand. This next month will involve an intensive 7 day stint of the chemo protocol I explained in my last post. My counts should be okish until day 10-14 when they will start dropping. I will be in hospital through this time as my counts will hit rock bottom and I will be at risk of infection etc. again as a result. I then have to wait for my counts to come back up naturally when I will then be allowed out (hopefully) for a bit of time at home before I most likely will need another cycle of this.

They are looking for a stem cell donor now, so best case scenario, if this goes quickly, I could have the transplant after just one cycle of Flag-IDA. However, this is unlikely and I will most likely need another cycle like this, with another month in hospital, prior to going for my stem cell transplant. I will know more about dates etc after my bone marrow after this cycle and when a donor is found. The point of this chemo is to reduce my MRD prior to the transplant to give me the best chance of not relapsing in the future, so fingers crossed this will kick its arse! And if it doesn't, the transplant certainly will!!

This week's been inevitably uneventful, as it tends to be in hospital! We had a quiz night on Tuesday with a few of the inpatients, which was nice! Though it would appear my knowledge on Pitch Perfect quotes and James Bond baddies is fairly poor!! Katie and I were very lucky this morning, as well, to go on a tour of the genetics lab here at The Royal Marsden, which was very interesting and didn't help my itchiness to get back to uni. Unfortunately, what with the Stem Cell Transplant and everything now, I think I'm fairly set on not being able to go back in January, and will have to delay it another year...but we shall see... Who knows...

Hope to see some of you lovely people soon anyhow!

Much love to you all xxx

All We Have To Do Is Decide What To Do With The Time That We Are Given.

Being brave is defined as "ready to face and endure danger or pain". However, I don't believe being brave is defined by doing something you have to do because you have no choice in the matter. I believe being brave is doing something you don't have to do but do anyway, regardless of the fear you have, to try to better yourself or help others. I'm not brave - I just have to deal with whatever is thrown at me next - I have no choice in the matter. My sister is the brave one - despite being terrified of heights, she threw herself out of a plane in order to raise an amazing amount of money for Leukaemia and Lymphoma Research.

My incredibly brave and slightly insane sister

The last two weeks have been pretty good! Lot's 21st was great fun for a start! Despite being neutropenic, I was given the all clear by the Marsden to go out for dinner with my lovely family for an awesome curry to celebrate Lot's birthday! The following day she had her parachute jump, and the weather couldn't have been more perfect! She did amazingly well and completed her jump with a smile on her face :) despite suffering from a 'sinus squeeze' (Google it!)! And it was so great to catch up with all my brilliantly supportive family!

The weekdays have been filled with hospital visits for AmBisome and a nice trip to the Marsden for a bone marrow biopsy to see how I've responded to my intense consolidation phase. The sedation wasn't quite so perfect this time but still can't complain :) I had a lovely couple of days with Phil at the end of the week, and on Sunday I also had a great day at sunny Leeds Castle catching up with Ellie :)!

This week I had my Monday and Wednesday AmBisome and then had another visit to the Marsden yesterday. This was for a repeat kidney function test, to check they're ok after the intense chemo I've had and prior to my next lot. There was a possibility that I'd have to have another bone marrow biopsy as my neutrophil count was low still last week, but thankfully that didn't have to happen. And my counts had come up since, with my neutrophils now 2, so that meant we could have a good takeaway last night - fish and chips - yum!! I got my bone marrow results as well yesterday...firstly, the Marsden's in-house tests showed from the aspirate that there are no leukaemia cells obviously present in my bone marrow; however, the MRD test that Bart's do did come back as detectable again, and although this has reduced a bit, it isn't enough for it to be below the threshold where they'd regard me as being at low risk of relapsing.

This now unfortunately means I have to have a Stem Cell Transplant, which begins with a 7 day course of high dose chemotherapy that I start on Monday. I was offered a bed today to start it all, but I really do need a weekend to let this all sink in before I say goodbye to the outside world again for at least a month... When I know what is occurring after the next week I will be sure to write another blog to let everyone know, but in the mean time Leukaemia and Lymphoma Research have some very good booklets on the transplant process with loads of information that can be accessed here:

https://leukaemialymphomaresearch.org.uk/sites/default/files/bmt_feb_2012_0.pdf

https://leukaemialymphomaresearch.org.uk/sites/default/files/seven_steps_march_2012.pdf

And a very good one on donating stem cells if people are interested in registering with Anthony Nolan here.

So, for those interested, my chemo plan from Monday involves the following drugs:

- Fludarabine - on days 2,3,4,5 and 6 of treatment given IV over 5mins

- Ara C(Cytarabine) - given IV over 4hours on days 2,3, 4, 5 and 6

- Idarubicin - IV over 5-18mins on days 4, 5 and 6 

- GCSF - given days 1 to 7 if needed - subcut injection

I'm sure I'll find out soon what occurs after all that!

But in the mean time, if anyone is interested in registering to become a stem cell donor, you can easily at: http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register. It's an absolutely fantastic cause, and I still cannot believe how many amazing people I have met already who can say they are still alive thanks to a Stem Cell Transplant! They are a true inspiration, and if I can be half as strong and supportive as they have been to me when I get through the other side of all this, then I'll be more than happy!

My blogging over the next few weeks will probably become very hit and miss, since the next week alone will be tough, let alone when I actually have the transplant... So please don't expect regular updates or very in depth ones when I do. With regards to visitors and gifts though, for those who have asked, the same rules apply as before I'm afraid...since I will have absolutely NO immune system left before I have my transplant, and even afterwards it is like a newborn's to the point that I will have to have all my vaccinations again - yay... So, if you want to visit but are told you can't or I'm not up to it, etc. etc. then please don't take offence, unfortunately - it's one of those things and is even more serious than last time...

Thank you so much to everyone though for all of your constant support and messages. You really all are keeping me going and really mean a lot - thank you.

Much love to you all xxx