The Things That Make Me Different Are The Things That Make Me.

Firstly, I apologise for the long stretch of silence that has occurred since the end of January. I'll be honest and say that quite frankly I've been rather busy with hospital appointments, seeing friends and relatives, and enjoying the time I have available to me to organise events and busy myself with my business course. I also feel like I have spent much of my time since then plastering myself in moisturiser in an attempt to combat the never-ending skin GVHD. More on all that later, however.

I would try and organise this blog into chronological order but since so much has gone on I'll just discuss it as I remember it. Back in February I had some lovely catch ups with Ellie, Sophie and Lucy, with dinner at the Horseshoes pub, where Lucy fell into a brownie food-coma! Alice also arrived home, engaged! So we had a lovely get together at Ellie's with lots of yummy old school party food and pizza. I also got to see Maddie and have a great lunch at the local cafe - very good victoria sponge!

Pancakes!

It was also pancake day, when naturally, we consumed far too many pancakes with strawberries and nutella and whipped cream. Lottie and I also had a great time at the Cirque de Soleil, with a trip to Harrods beforehand and a cup of tea in their tea room, and an awesome Italian meal at the restaurant in the Royal Albert Hall. The show itself was amazing - a great watch, would highly recommend it for a night out with a bit of a difference! Lottie and I also had a lovely day at a Virgin Spa near us, which she had been kindly given as a birthday present. We had lunch at the cafe and then I had a manicure (first ever!). And Lottie had a relaxing massage.

Posh Harrod's Tea

Cirque de Soleil

I also had a lovely trip to Auntie Boo's for the weekend, unfortunately I had just had another bone marrow aspirate so was a bit sore, and even more unfortunately spiked a temperature and ended up in Stoke Mandeville A&E as I was possibly neutropenic. Fortunately I had some IV antibiotics and they let me out the same day as I wasn't neutropenic in the end and could just have oral antibiotics. However, I ended up in Maidstone A&E later that week with another spiked temperature and infection. That didn't stop me & Boo from having a lovely Indian takeaway though, and a yummy Chinese with my grandparents!

Green Juice!

At The Pepperbox

I realise that this blog is turning into a foodie fest and do apologise but that appears to be my main focus at the moment! What with Jamie Oliver, Delicious and Good Food magazines strune about the house, I'm not surprised I don't spend more on food. I'm also Nutribullet-ing lots of green juice as well at the moment in an attempt to improve my neuropathy (according to Dad's research). Mother's Day was lovely, spent at the Pepperbox Inn for Sunday lunch - was fantastic as always!

Dad at the finish

Mum at the finish

So, I think that brings me round to March and the Marsden March! Mum and Dad successfully completed it and have raised an astonishing ~£850. This month I also caught up with Ellie, Lucy, Sophie and Alice for The Lion King musical and an afternoon tea! The afternoon tea was lovely, and the musical was fantastic as always! We were in the stalls so had all the cast coming down the aisles onto the stage. The circle of life was as incredible as I remembered. I also managed to finally catch up with Kate, Hannah and Lauren and little Oscar at the Bakehouse for some brunch! It was yummy as ever and much needed by everyone else who had been on a lovely dog walk beforehand! It was so good to catch up! 

Proper Afternoon Tea

The Lion King

I did promise an update on my treatment though, and I'm sure you don't want boring with my social life news! I'm having to have intrathecal chemotherapy every 3 months for 2 years now, as part of my protocol for treating the leukaemia as stem cell transplants don't affect the CSF (fluid around the brain and spinal cord) so this still has to be treated, as leukaemia cells can harbour there and cause relapse. And we don't want any of that thank you very much! The bone marrow aspirate I had was for the MRD test (specific test result for tiny amounts of leukaemiacells cells) due to it not being done with my last bone marrow before Christmas. The result of this one though also went missing, much to my, my family's and the doctor's severe anoyance. Don't worry - an incident report is being submitted and a stern letter of complaint will be sent. I have, therefore, opted to have another one (they are under sedation I suppose) for the result, as it will put my mind at ease at least. 

With regards to the skin GVHD that I have been suffering from, I have been referred to Guy's Hospital for treatment called ECP. It involves my blood being taken out from me, passed through a machine that separates the white and red blood cells. The white blood cells are treated with a drug that attaches to some of them, they are then passed through UV which destroys the cells with the drug attached so cytokines are released that somehow (no one knows, tiddly pom) then stops the graft from attacking my body. Not all patients benefit but a high percentage do. 

My eyes have also been causing problems (hence the delay in blogging). Because my skin is bad, it affects the ducts and blocks them around my eyelids. This has resulted in really dry and painful eyes, and a lump under my right eyelid. I have had blurry vision and swollen eyelids as a result. An array of drops including, Chloramphenical, steroid and viscous tear drops were prescribed but didn't help, so this resulted in a referral to St Helier's Eye Clinic. Unfortunately, they could only fit me in on 6th April, so I went yesterday anyway as an emergency as I couldn't see properly. I now have better eye drops (steroid and lubricants but preservative-free this time)! These seem to be working much better already but they still want to check up on me next week. The only benefit from having all these hospital appointments is that sometimes Dad and I get stuck with the cross-country route home, which often results in having to stop for dinner - this part isn't so bad as you can see from the pictures below!

Lovely Italian Dinner

Steak Dinner

At St Helier's

The neuropathy is still not great - pain and cramps and tingling are constant.  However, there has been some improvement since my last blog with me off one of my pain killers and being able to start reducing my opioid based pain killers. I haven't reduced my pregabalin yet though. Some days are better than others but I have generally been able to do more recently.

This week I have spent a lovely weekend at the grandparents with Boo, my Auntie Sara, Uncle Will and my brilliant cousins as well. And have a catch up with Katie and Celina (two lovely girls I met in the TCT when I was first diagnosed) to look forward to! :) I also have BSAVA Congress the following weekend - very exciting!!

Thank you all for reading this essay and following my blog! I hope it may help the odd person out there to understand they're not going through post-stem cell drama alone, as well as all those lovely people who just like to keep up with my story.

Much love to you all xxx 

Courage, dear heart.

So, it has been a long time since I have posted a blog, and the main reason for this is that I've been suffering from a peripheral neuropathy. This has prevented me from using my fingers, so I haven't been able to write properly or even type. My feet have also been affected but less so. The pain and constant tingling has been excruciating and I had to be tested by neurologists to confirm that it is as a result of the chemo drugs I have received. This involved electrodes and needles, which measured how well my nerves were working. The pain clinic has also been involved in my treatment, providing me with four different types of analgesia (pain relief) - duloxitine (a drug that is primarily an antidepressant but is also used for diabetic neuropathic pain); pregabalin (which is similar to gabapetin - another pain relief drug specifically for neuropathies); oxycodone (a strong opioid drug for pain relief, both long acting and short acting) and paracetamol. Luckily, I have now managed to reduce the pain relief I am receiving so I am no longer requiring paracetamol and top-ups of short acting oxycodone as often. 

I'm still also on immunosuppressants and the doctors are trying their hardest to reduce this. I'm still on prednisolone and mycophenolate mofetil, this is to continue combating the Graft vs Host Disease that transplant patients suffer from. Mine seems to be particularly affecting my skin when my prednisolone dose is reduced. We dropped it to 10mg once a day and although this is a tiny reduction in dose, the skin on my legs flared up bright red and my skin got really flakey and disgusting. It was really debilitating - I felt I couldn't see anyone and that I just looked really ugly and gross. Now, however, after A LOT of steroid creams and Epaderm cream, and bio oil, etc. etc., my skin has finally recovered! We did have to up to the prednisolone to 15mg once a day again though too. But hopefully this week we can work on reducing the dose again!

I've also been receiving some counselling as I was struggling with feeling like a burden to my family and was struggling to deal with being housebound and the constant struggle I am having with my recovery, as I thought I would be able to progress and get stronger more quickly than I am. The neuropathy also knocked me back a lot and I was struggling with feeling like it was never going to improve and it could affect my future doing surgery. The counselling has really helped anyway, and I feel that everyone who goes through a transplant or has to deal with having cancer should receive it automatically. The therapists at the Marsden are especially brilliant though because they see the effects of cancer on patients every day whereas those who you would be referred to through your GP don't. This makes the treatment a lot more relevant and they are certainly helping with methods like CBT. As a result, I'm sleeping a lot better and feeling a lot better about the future and learning how to deal with the present rather than constantly worrying.

I'm now going to the hospital less often for appointments, which is nice, but I still have to see the transplant clinic, pain clinic, neuro oncology clinic and my psych appointments.  So, it's still pretty busy! Dad's been amazing and has taken a lot of time off to take me up there, which I immensely appreciate as being in the hospital as a family member can be extremely boring! 

At the beginning of December I was very lucky to be able to go with Kate, her gorgeous little boy Oscar, Hannah and Lottie to the Harry Potter studios to see Hogwarts in the snow! It was brilliant and me and Lot got our picture in the Weasley car and I may have spent a bit too much in the shop!

 

Simon Pegg also visited the TCT, as did Jack Whitehall, before Christmas! They were both extremely friendly and great to talk to, even if Jack did come across like a bit of an embarrassed school boy. I did get to have a chat with Simon though, and discovered his dog was currently being treated at the QMH (the small animal hospital at my uni) - small world! Here are some pics!
 

The family had a great Christmas though and it was lovely to just be at home with them on the day and then see mum's side of the family on Boxing day, which was really nice! I've also been able to see Grace, which was really refreshing as I do love a good catch up about vet stuff and how she's getting on in her job in Suffolk. I'm hoping to visit my aunt very soon too for a girly weekend of probably eating too much food and watching lots of trashy tv :).

I also received some amazing news that I got the BSAVA Congress Student Bursary that means I can attend the congress for free, as well as some exciting events there. It's in April and I can't wait to get my brain back into vet stuff again. The practicals look brilliant too! Just have to book up the train tickets and hotel now!

I thought I should also update you all on the fact that me and Phil aren't together any more, but we are still good friends and I will always care for him and be there should he need me. I just want to thank him for his continued support throughout the last year and I am ever so grateful for all he has done and all the sacrifices he has had to make. I also want to thank everyone else for their continued support with our relationship and I really do appreciate their help with everything.

Anyway, I will update again soon with hopefully more good news!

Much love to you all xxx

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