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