1st Rebirthday

 I’ve not blogged for a while as there hasn’t been a great deal happening from a SCT point of view, which is a positive sign that medically things are stable. A speedy SCT update; I still suffer with GvHD in my mouth and this is being managed using formulas. I’m aware of my mouth feeling ‘different’ however it’s not painful, annoying more than anything else as mucoceles (blisters) pop up in my mouth when I am hungry or when I’m about to eat. Due to the GvHD the wean off  cyclosporine continues to be slow in an attempt to reduce the likelihood of GvHD popping up elsewhere and to prevent the current GvHD from getting worse. I have embarked on a programme of vaccines which is normally administered to babies i.e. tetanus, meningitis etc. in order to provide immunity which was lost as part of the SCT, I’m now roughly half way through the list. The regular blood tests are all consistent and the cell counts sitting nicely in the normal ranges, there has been mention of carrying out a bone marrow aspiration but I’m doing my utmost to avoid that test and as all my other results are perfectly normal I will be challenging it, if / when mentioned again. Ignoring all the above tests, for me the bottom line is that I well extremely well and that isn’t’ taking into account all I have been through. If I take into account what my body has endured over the last two years than I’m ridiculously well.

As this is my final blog it seems a good time to express my gratitude to an abundance of people and organisations. From the first time I went to the GP, I was taken seriously, I’ve heard so many horror stories of patients not having their concerns taken seriously enough to warrant a simple blood test so I am extremely grateful to the GP who ordered that initial test. After the initial test of was referred to the local hospital where additional bloods and a bone marrow biopsy were taken, once again those staff were supportive, kind and acted with urgency which potentially saved my life. Then onto Barts in London, words will never express my gratitude to the wonderful staff from my consultants to the person who changed my bedsheets, each and every one got me through h*ll mentally and gave me a second chance at life. Heather Oakervee, my main consultant and my Clinical Nurse Sam were beyond fantastic. In short the NHS were bl**dy amazing and to this day remain so with all the after care. Naturally, leading on from the NHS I simply have to say how grateful I am to Anthony Nolan. Anthony Nolan don’t just have a bone marrow donor register, they provide so much support to patients and families in a variety of ways, before, during and post treatment. They campaign hard for the good of all the patients who have had transplant and for those poor souls who will one day find themselves in that terrifying position. Of course they provided me with two lots of stem cells so without the hard work of all the staff and volunteers I may not have been so fortunate. Finally but by no means least, a huge thank you to everyone who supported me through the last two years whether it was a kind email or bringing boxsets into the hospital for me to watch, all your support made a difference.

I didn’t thank my donor in the above because I’ve thanked as best I can in a letter. In twelve months I will have the opportunity to ask to make contact with him, some days I think I will and others I’m not so sure it’s a good idea. Neither words nor actions can explain to a person how it feels that your life is simply down to them and when it’s a stranger who doesn’t know a thing about you, it’s overwhelming. I hope every day that he is blessed with a good life, as free from life’s troubles as is possible. He will be with me forever, his blood runs through my veins and to mark this I recently got a tattoo, a mark of survival but a reminder to myself that I owe my life to another.

I could write a number of blogs about how AML and a SCT have altered me, opening my eyes to many things in life I had never previously had experience of and in many cases wasn’t even aware of. It goes without saying if I could turn back the clock and find a way to avoid AML I would but I am, I believe, a better person for all I have endured. One thing I have learnt is that there is kindness in bucket loads it’s just rather sad that you have to go to some very dark places to find that kindness. With each day I take up the reins of life more and more, in doing this there are times when doing that is all consuming, I try my best not to become to self-involved and to carry out my promise to myself and my donor, to pay forward his kindness when I can.

5^th February 2017 was my rebirth day, I racked my brains what to do in order to mark the occasion. As it’s a first birthday the idea of playing pass the parcel and stuffing myself silly with jelly and ice cream was very appealing but I felt it wasn’t momentous enough so I decided to do a ‘first’ on my first birthday. I organised for myself and a few friends to go to a safari park and feed lions, then release them into their reserve. After which we went for lunch with some other friends, which was obviously finished off with a ‘rebirthday’ cake. 

Now I have hit the twelve month milestone I feel I can move forward with AML and the transplant as a part of my life rather than consuming my life, as it has so often felt during the last two years which is why I have decided to make this my final blog. My life in the Cotswolds is beginning to fall into place, I have recently put in an offer on a property and have everything crossed that by spring time Aster, Khan and I will be settled in our new home. I’ve recently been skiing, which was my first holiday in two years and it was amazing, many times I had to catch myself from having a teary moment as I looked out the spectacular scenery, enjoyed the adrenalin rush of bombing down the mountain and having a cheeky hot chocolate / gluhwein pit stop or three was the icing on the cake.

If I could pass on any wisdom, I would say to anyone facing a life challenge; you are stronger than you ever imagined, have faith in your in mind and body to carry you through this time. For those days when you aren’t facing a life challenge; be kind, give when you can, be it blood, a cup of tea to a homeless person, a helping hand to a friend moving house because kindness makes a lot of things easier and should anyone you love need the kindness of a stranger you’d move heaven and earth to make it happen so lead by example and hopefully people will be inspired to follow suit.

Day +283 3.5% makes all the difference

3.5% doesn’t sound much does it? Let me tell you under the right circumstances it can be ample to reduce a person to tears. Ever since my first chimerism test post my second transplant, my test results have hovered around the 95% – 98% and that has been a fantastic result which I’ve been more than happy with. My first transplant, the highest the donor recorded was 53% if memory serves me well. I look back at the time I was informed my first transplant had failed and I’m surprised at how ‘well’ I took the news, it’s as if I just rolled with the punch and carried on in true British ‘jolly hockey sticks’ fashion. When the treatment started for the second transplant, I realised I hadn’t quite rolled with the punch as well as I would have liked, as I was very fearful that the transplant might not work. I’m extremely pleased to report that the final 3.5% Rachel has been removed, my last chimerism test across the board came back as 100% donor. When I was given the information I was of course elated however it wasn’t until I sat in my car alone, that the true significance of the news hit me. I just burst into tears, then I laughed at myself or crying over such a small percentage. (Meanwhile, passers-by just thought I was a crazy lady)  The truth of it is I feel they were tears of relief, after nearly two years of heartache, needles pain fear and stress, in 4 months it will be two years since I first when to the GP.  It’s been a very long journey and even now I have oral GvHD, take a truck load of meds but the light at the end of the tunnel is definitely getting brighter.

Life in general is beginning to take a more normal shape, I’m working on average four days a week and physically I feel extremely well. Recently, I struck off another significant milestone in my post AML journey. I travelled outside the UK as part of a surprise visit to members of my family. My passport expired whilst I was ill. Back in August I applied for a new passport and then I had to contact a medical company to gain approval for an insurance policy. I only took insurance out for Europe as my consultant advised when she approved my plan to travel. Europe is the safest bet for the foreseeable future, at least until I’m twelve months post-transplant and / or GvHD free. I am even considering my long term options with regards buying house, I sold my property when I moved to the Cotswolds and rented as a ‘try before you buy’, I now feel that it is the area for me and feel confident to start making plans for a future. The development that I am now 100% helps me to manage my fear that the AML will return, where once I had cause to question if I’d be around for my birthday I now have confidence to start making long term plans. 

Talking of birthdays, it won’t be long until my first birthday! I’ve put my thinking cap on what to do when celebrating your first birthday, I’m up for a portion of jelly and ice cream however that isn’t exactly pushing the boat out. I have decided to do a ‘first’ for my first birthday, which actually isn’t that easy as I’ve already skydived, abseiled, been on a track day etc. The one thing I have wanted to do for a long time is to get up close with Big Cats, so I have booked a Big Cat feeding experience on the anniversary day and asked friends to join me for lunch afterwards. I feel it’s very important to mark the occasion, possibly even more so than my original birthday. As the one year approaches and the news is good as to the success of the transplant, I’m now asking myself should I request to meet my donor when the second anniversary comes round. I have been torn on this issue since I had my first transplant, to me he is a hero and I’m slightly fearful that if I were to meet the gentleman in person he might not meet my hero status, we might not like each other….I’m sure between now and the time I can make the request I will change my mind a hundred times over.

Throughout my treatment I’ve had a huge feeling of guilt, guilt because I never donated blood, platelets, signed any register to be an organ or bone marrow donor. I received many bags of blood and platelets during my time in hospital and I’ve undergone two stem cell transplants. Signing up to be a regular donor isn’t hard, it’s just an inconvenience many of us in our day to day lives don’t think to do or in my case we are simply to chicken to face our fears. I am not able to donate now however I am able to give back and help in other ways. Not long ago Anthony Nolan interviewed me and posted the interview on their website. Last week, once again I was interviewed by Anthony Nolan, this time it was a video project which covered a range of issues relating to having a stem cell transplant. Parts of the interview were difficult, naturally with the camera rolling I wished to remain composed and on the whole I did manage to get my words out without turning into a complete wreck. I’m proud to be part of the project and keen to see the final results. If by my sharing the difficulties I faced I can help someone else going through a transplant, then I’ve gone some way to giving back.

 

Day +248 Rebuilding…..

It’s crazy to think it is Day 248, time is flying by and soon I will be 1! The next few months could be rather challenging as we enter autumn and winter, the season of bugs. I don’t think I’ve ever been so keen for a cold winter and in fact we are due a cold winter after three mild ones, fingers crossed the germs are frozen into submission. I sit on the train, someone two or three seats in front coughs or sneezes, instinctively I consider the merit of moving away from them whilst giving them daggers for daring to sneeze near me! Don’t they know my immune system is only eight months old?

I requested a transfer from Barts to a hospital nearer to my new home in the Cotswolds, it was an odd mixture of emotions leaving Barts. I confess to quietly walking the corridors saying my goodbyes to a place which oddly has a huge chunk of heart but which I’m also pleased to see back of. I had my first appointment in with my new consultant this week and she seems on the ball, as well as very nice. She would like me to see an oral specialist in relation to my GvHD, otherwise she doesn’t plan any changes to my current regime therefore it was very routine along with the waiting times J

Life is beginning to resume a routine after treatment for AML, two transplants and a house move. One of the things which regularly frustrated me over the last eighteen months was that my diet / lifestyle pre AML went out of the window. Previously, I was quite disciplined with my food and exercise, for the last three weeks I have focused on getting back into the habit of creating meals which are fresh, full of colour and nutrition. Also in a moment of madness signed up to run 5km in November, I refer to it as a moment of madness because I have always loathed running. For the briefest of moments I thought it was a good idea to challenge myself?! I been training for a few weeks now, it has been mentally taxing as I spend most the time arguing with myself. ‘I hate running. Why did I decide to do this? How can I get out of it? It’s only 5km you only to run it once. Really, does anyone like running?’ Putting my running mutterings to one side, I feel that I am finally creating a habit which will be a lifestyle before long. Being fit and healthy may not have prevented my developing AML, however I am in no doubt that being strong and ‘well’ was a big factor in my ability to withstand the treatment.

All the changes which have occurred in the last eighteen months, physical and mental have very much altered how I see myself and chipped away at my self-confidence. The reality is that I do not feel comfortable in my own skin as I once did; it’s understandable that to endure all I have in such a short space of time will transform a person. At this present time I don’t feel as if I’ve transformed, rather I’m stuck somewhere between who I was and where I am going to. I suspect the continued GvHD and the menopausal changes are two key players in why I’m feeling so unsure of myself. I’m hoping focusing on my well being via a healthy lifestyle, will help to rebuild my confidence in myself.

The Macmillan coffee morning I recently organised at work raised a very respectable total of £472.92. Macmillan provided me with a grant of £450, that grant was a lifeline it’s pleasing to know that we raised enough to help someone as they helped me. I have promised myself to repay the £450 before the year draws to a close but giving isn’t all about money. I recently agreed to an interview with Anthony Nolan in the hope of helping others, I won’t be so bold as to say I believe I can inspire people, I would be happy if the interview gives someone courage during a difficult time. You can read the interview / blog using the below link.

http://blog.anthonynolan.org/2016/09/cancer-and-survivorship-rachels-transplant-story/

 

Day +201 Daunting dating….

I’m settling in nicely in my new home, I still have a truck load of things to do but the ‘to do’ list is gradually decreasing. One of the main things on the list was to register with a GP, I’ve registered therefore the mountain of paperwork which I fully expect to terrify the surgery doctors should be with them any day. I have also instructed Barts, with their approval, to refer me to a hospital closer to my new home. I feel that now is as good a time as ever to move to a local hospital, my recent bloods are all normal and very good, the GvHD is under control in that my mouth isn’t any worse and right now it’s just my mouth / saliva glands Dylan the donor seems to be keen to ‘attack’.

When I was diagnosed I was in a long term relationship and until recently the relationship rode the storm of AML and stem cell transplants. A few months ago when I was mulling over the decision to move we decided to call a day on our relationship because we wanted different things. In truth I would go so far as to say, my life had altered so dramatically, along with my dreams, perspective etc. that we just found ourselves on different pages to what we had been on eighteen months prior. Naturally, people ask me my relationship status and frankly this is a very difficult subject for me post AML & SCT.

Having enduring treatment for AML, undergone two stem cell transplants I’ve gained an enormous confidence in myself and my ability of deal with adversity. On the other hand my confidence in other respects has been dealt a significant blow. Prior to being diagnosed I was relatively happy with my appearance, I’d come to terms with the fact I’d never give Angelina Jolie cause to worry about Brad’s faithfulness and was actually relatively content with my appearance, shape etc. Since I was diagnosed I have lost my hair twice, had a Hickman line (tube coming out my breast) for 8 months, then a Picc line (out of the arm) for 2 months, my weight has fluctuated with the lack of exercise, medication etc. and now my hair has grown back like a dodgy 80s perm, I’ve started early menopause and I have oral GvHD. For the first time in many years, I actually want to be a wallflower as I feel very uncomfortable with my appearance which I’m sure is perfectly fine but it’s all about how you feel. At some point the hair should return to its original state and in the meantime it will continue to grow, hopefully the weight / length will at least start to pull the curls down and make it more manageable. The oral GvHD could go on for months or even years, sadly I have no control of over it other than to manage it with the various mouthwashes. Time, healthy living and mouthwashes are the key to rebuilding confidence in my physical appearance. I’m a true believer that you have to be comfortable in your own skin in order to be in a healthy happy relationship therefore right now I can’t even conceive the idea of attempting to date based on how ill at ease I feel at present.

I’ve alluded to the fact that I believe I will regain my confidence in my physical appearance with time, I suspect the bigger issue is the mental / emotional element of dating post AML & SCT. How do you go about telling someone that you have been so critically ill? For me the journey between March 15 and today has been a difficult and emotional one, which is still very much an open wound to share that with someone would be extremely challenging which leads to the next question. When do you tell someone? Then there is the fact that my age would normally put in the ‘last chance saloon’ for children however they aren’t an option so that is also something I’d have to address should I consider a relationship.

I’m in no hurry, currently I’m focusing all my efforts on my new start in the Cotswolds; settling into local life which including going to watch football being played in a river, making friends, finding good walks for Aster and trying to encourage the cat to kill his presents before giving them to me. Even so, I am rather daunted at the prospect that one day I may want to date and how to go about that given all the changes which have taken place physically and emotionally in my life in such a short period of time.

On a more positive note, my Macmillan Worlds Biggest Coffee Morning kit has arrived and work seem to be in agreement to hold a coffee morning with a Bake Off Competition. Get yours at: http://coffee.macmillan.org.uk/ Friday 30^th Sept…..a fabulous excuse to indulge in lots of cake.

Day +185 1980’s Poodle Perm

I’m no longer waist deep in boxes, if I go into my spare room I’m probably ankle deep in boxes therefore I tend to keep the door to that room closed! I’m really pleased with my decision to move to the Cotswolds. Back in January 15, I felt well in general, possibly a little tired but then I believed that was the price of a hectic lifestyle. I worked in London, resided in the Home Counties with my cat and had a five year plan for improving my home etc. AML was a complete curve ball and at the time of diagnosis I really didn’t know what the future held or to be blunt, if there was a future at all. There are days when I catch myself finding it hard to believe I endured 2 Stem Cell Transplants, 40 days of high intensity chemotherapy, a Hickman line, a Picc line, 7 bone marrow aspirations / biopsy, a skin biopsy, countless blood transfusions, platelet transfusions, and no doubt lots of other torture procedures from Mar 15 to Feb 16. The reason it’s hard to believe at times is because I feel well, I look well (I’ll come to the curly chemo hair later) and physically other than not being a super fit (as I was back in Jan 15) I feel the same and yet someone else’s blood runs through my veins. Of course I have a few scars, where the Hickman, Picc and biopsies where undertaken and I’m pleased to report that they are fading nicely. The true scar/s for me of AML is a mental scar. Post moving I had a number of bruises, most of which I couldn’t explain individually and as bruising is a sign of AML, the moment I was in clinic I was asking what my platelet count was even though being bruised posted lugging, packing and unpacking boxes is to be expected. As much as loath blood tests I suspect come the day I am signed off I’ll be coming up with reasons to have blood tests. When I recall the trials and tribulations of the last eighteen months I often struggle not to well up and blub like a baby. It’s not that I intentionally think about blood cancer, every so often the bugger sneaks up on me. It might be hearing about another patient or simply the fact leukaemia / cancer is part of a film storyline and the moment that happens, the emotions rush to the surface before I have time to compose myself. For me personally the move has been very positive as I now have new adventures to look forward to which make me feel as if I am living. To feel the wind on your face, to sample delicious foods at the market, to meet new people truly makes me feel as if every hellish moment was worth enduring. Some adventures aren’t so new, last weekend I went horse riding for the first time since diagnosis and although I can hardly walk I had a fabulous time back in the saddle and I’m counting the days till the weekend when I get ride again. The adventures, new and dusted off, all help to stop me dwelling on the fears which come with life post cancer, namely will the cancer return, and focus on living life. Being honest I’m not so sure I would be so optimistic if I were still in the home counties, planning a new bathroom, post AML I needed a change for it was the only way to put it behind me whilst acknowledging it has altered me mentally and physically.

I still have GvHD, the skin rash quickly cleared up with a course of steroids which I am now off, thankfully as I hardly slept a wink when I was taking them, but the mouth GvHD remains. Therefore I’m using lots of mouthwashes daily to keep the mouth in ‘tolerable’. Tolerable means feeling dirty however no amount of brushing of teeth, cheeks, gum or tongue remove the feeling of having a grubby mouth. It’s really not all that bad or inconvenient, I just keep hoping that when my consultant starts to wean me off the increased cyclosporine the skin rash stays away. I gather the mouth GvHD can take months and in some cases years to normalise, I keep reminding myself GvHD is a good thing as statistically it suggests the chance of relapse is at the lowest it can be. The mild GvHD is my only remaining physical sign of AML and frankly unless you have an odd desire to look into someone’s mouth, I doubt you would notice. What is noticeable on the other hand…..chemo curls. Having had relatively straight hair all my life to suddenly have curly hair is testing my hairdressing capabilities which were limited prior to being unwell. I struggle every day to tame my hair into a ‘style’, the hair simply has a mind of its own and by the time I’m ready to leave the house it resembles a 1980s poodle perm. I went to the hairdresser at the weekend and even she grappled to tame the mane with limited success. I desperately need to apply for a new passport as whilst I was sick my passport expired and now as long as I remain well I am allowed to make travel plans within Europe which is very exciting nevertheless I fear I’m going to be saddled with a horrific photo for the next ten years. I might look up a ‘hair growth dance, desperate times, desperate measures!!!

People actually thought this looked good? I’m not impressed with the poodle look myself…grow hair, grow…….

It must be time for a mouth wash, especially as I just received my MP’s response to my request to support funding for second stem cell transplants…..keep the dirty words from popping out and refresh my mouth 

Day +160 New beginnings

I’ve not blogged for quite a while because I have been waist deep in boxes making it hard to find the time to update the blog with my transplant developments. When I was admitted to hospital in March 15, hour upon hour in the bed gave me a great deal of time to think, feel and reflect. I found that I missed some elements of my pre-AML life more than other elements and often these realisations surprised me. For example I missed horse riding so much so I was envious every time I spied a horse in one of the many box sets I watched, I craved open space and the sound of birdsong. In contrast I didn’t miss the wining and dining in London to the extent I thought I would. As my treatment progressed and my first transplant failed I spent many hours in my home recuperating consequently home turned into a prison, combined with the fact that the leukaemia painlessly grew inside of my bone marrow whilst I slept in my house I started to feel the home turn into a house I no longer wished to live in. Home for me is supposed to be your own personal sanctuary and instead it became a place I felt negatively towards. In many respects this is a great shame as my house was and still is a beautiful property but for me it was soured and full of memories I wished to leave behind. I made the decision post my second transplant to put my property on the market, at the time I had no plan as to where I would go. Normally I plan my life in minute detail, cancer has taught me to go with the flow a little more so I resolved to do that. After one week on the market I had received six offers on my house giving me confidence that the house would sell gently nudging me to I come up with a plan for my future. The hours of reflection whilst in Barts gave me food for thought and I decided to follow a dream I have had for many years, I settled on the Cotswolds as my new home.

The last few weeks have been hectic as I have sorted through my belongings, packed box, after box and hurtled up to the Cotswolds to find a rental property for me and my furkids whilst returning to work and dealing with my medical woes. I’m pleased to report that I found the most idyllic place which I hope will bring a more irenic lifestyle along the lines of what I craved when I was in hospital. I may have physically healed but as you may have learnt from my previous blogs chemotherapy has had an effect on my long term wellbeing / lifestyle, I have also had a harsh education with regards life and death over the last sixteen months I now feel ready to work on the healing the emotional scar AML has left. The main way I aim to do this is by indulging in the things I love, living life to the maximum and by paying forward the kindness shown to me. I doubt anyone has passed through an experience such as cancer without maturing and developing in ways which they hadn’t anticipated. Now, I would very much like to take ownership of my life back whilst acknowledging all that I have learnt and confining my SCT to being a part of my life rather than the all-consuming thing AML and the SCT have been for what feels like a long time. For me the move has been a very positive adventure to focus on whilst recuperating, I suspect picking up the pieces of life pre-AML and attempting to live that life would feel incredibly odd, as I am no longer that person. My new home promises new adventures, I relish the idea of neighbours who don’t see me as a cancer patient remarking on how well I look but instead take me for who I am now. All that said, there is much I loved about my life prior to being unwell so I have approached this as an opportunity to improve the life I had whilst retaining the best bits.

Whilst I’ve been busy reconstructing my life I have had to deal with a touch of GvHD. Graft v Host Disease is a normal complication which can occur after a stem cell transplant. As I have been weaning off the immunosuppressant (ciclosporine) the newly transplanted donor cells have been in a position to attack my body. This all sounds bad but in fact it’s a great sign that the transplant has worked, the idea is that the donor cells will attack any AML should it dare to return. GvHD comes in a variety of formats for me it started with a mild rash on my neck which started to spread, at the same time my mouth felt awful. I can only describe the mouth symptoms as being similar to how your mouth feels post a HEAVY drinking session, dry and crumbly. (Please note I am imagining how a heavy drinking session feels because I’m an angel!!) Once again I struggle to fault Barts, as soon as I notified them of the rash and mouth, I had an appointment within the hour with my consultant. They confirmed my suspicions and a skin biopsy was taken to be one hundred percent certain, I was then prescribed a truck load of drugs. I have been prescribed steroids to control the rash and a number of washes / rinses to ease the dryness in my mouth. At the same time my ciclosporine level was upped to suppress my donor from attacking me. My symptoms are now under control / managed with the drugs and washes. The plan is to wean off the steroids and then start the wean back of the cyclosporine again. Apparently there is a fifty percent success rate with this approach and the idea is we just keep at it until the donor finally accepts me. Whilst it’s not great being on steroids which keep me wide awake and the mouth washes are not very nice, in reality it’s not all that bad. I just keep reminding myself that having GvHD is a blessing, combined with more than twelve months in remission the chances of a relapse are reduced by having GvHD which helps me mange my fears of a relapse.

Just a few drugs, lotions & rinses to keep my GvHD under control

Day +124 First signs of side effects

When I was informed that I required chemotherapy I had to sign multiple forms to confirm that I understand the side effects of going ahead with the therapy. To be honest, when presented with the forms I took the view that I was signing to stand a chance of living a long life and the possible long term consequences were invariably horrid but better than death hence I signed the dotted line willingly. A few weeks ago I mentioned to my haematology consultation that I feared I was suffering one of those side effects and questioned if I should visit my GP. As always the staff at Barts were worth their weight in gold and took my remarks very seriously. I believe I have started the menopause which is a few of years earlier than mother nature would have planned. What originally alerted me to this potential development was a rapid sensation of my upper body, in particular my face, feeling very flushed. Ciclosporine can be a cause of flushes however due to the fact I’ve not had a natural monthly in a long time (during treatment they were prevented with a mini pill due to fluctuating platelet levels) I suspect I’ve entered the menopause or it’s starting.

 It’s natural for women to gradually lose bone density from around the age of 35, after menopause bone loss speeds up. I had the bone density scan today and the radiologist confirmed that I have osteopenia (bone density which is lower than normal but not low enough to be classified as osteoporosis), he stated it was his belief that I would be put on require supplements based on what he saw today. I’m not entirely sure if it’s the endocrinologist or the haematologist who will make the decision or maybe even another ologist I’ve not as yet has the pleasure of meeting. I see an endocrinologist (hormones) in a couple of months and they will decide whether HRT (hormone replacement treatment) is required, if I am menopausal HRT can help reduce a woman’s risk of developing osteoporosis and as I already have a low bone density I suspect it will be advised. I’m not entirely surprised by the news my bone density is low, there are a number of contributing factors chemotherapy being a significant one, having a family history of osteoporosis, a diet low in calcium or vitamin D, being thin, smoking and being inactive. I don’t smoke, I’m certainly not inactive and I’ve not been ‘thin’ since I was eight but I am probably guilty of all the other elements. It’s obviously disappointing to hear as I do try to consume milk, although I loathe it and all my adult life I have exercised in a way which should have helped bone density however at least the problem has been identified and the bone loss will be slowed down enough so I can still hit the ski slopes when I’m 60.

 Naturally, I’m not wildly impressed  at the idea of going into the menopause and all the delights its brings with it. Just as I’m regaining ownership of my body, my body commences a rather unpleasant process which can go on for a long period of time and I have little or no control over. That said I take the view that it’s a small price to pay for being in remission and having a new immune system curtsey of my donor. Throughout my treatment I often found that I was in awe of the resilience of the human body when bombarded with toxins, the pressures of extreme stress and even more recently excessive physical activity (3 Peaks). This recent turn of events demonstrates to me just how heavy-duty chemotherapy is, although I feel very well within myself it’s clear that my body was battered in many ways by chemotherapy. This also emphasises the fact that cancer doesn’t stop causing havoc in your life just because you are in remission.

 I’m pleased to report that everyone has fully recovered from the Three Peaks Challenge, I’m still awaiting confirmation for the final total. I’m rather surprised to find myself and my fellow walkers keenly discussing a walking challenge for next year! We are most likely going to organise it ourselves and this time it will be driven by pleasure and fitness incentives rather than to raise money. I’m really pleased how the challenge has lit a fire in many of us to become fitter, to fight of the flab and aging process when the original motive was simply to raise money with the added benefit of catching up with each other. What started out with a single good intension appears to have had positive impacts on the vast majority of the group which seemingly go beyond the short term. The way in which everyone embraced the challenge, gave their all and are now keen to still go walking as a method of staying fit has really inspired me. It demonstrates how many ripples are actions can create, if each of us tried a little harder each day to behave in a kinder and more selfless manner, the world would be much nicer place.

 I may decide later in 2017 to embark on another charity challenge but until then I have an awful lot of personal challenges to concentrate on, starting with my return to work. I have resumed work part time whilst I wean off the cyclosporine. The risk of GvHD increases each week as I wean off therefore working up to full time is going to require honest judgement on my behalf, caution and patience. It would be lovely to be bringing home a full time salary nevertheless I don’t want to commit to my employer, only to let them down due to medical woes and I also don’t wish to push myself taking into account my infantile immune system. Attempting to merge back into the world of work whilst keeping my promise to myself to ensure my life maintains an equilibrium, isn’t easy. My illness has shown me that I need to have more balance in my life, prior to becoming ill nearly every hour of my day was filled with activity. It’s tough not to fall into the bad habit of being a busy bee especially after fifteen months of life on hold and with a head full of plans, at the same time it is critical to take time to stop and smell the roses.

Maybe not smelling roses but enjoying a few bubbles out with friends and no turban!

Day +116 Tearful & proud moments

After months of fundraising and weeks of training on Saturday myself and six friends finally took on the Yorkshire Three Peaks Challenge. We all had to get up extremely early to ensure we were in Horton for a prompt 7 a.m. start. With smiles on our faces we immediately started the first ascent, Pen-y-Ghent (693 metres) which was tough but as we were all fresh and eager there weren’t too many hold ups, moans etc. After Pen-y-Ghent we had a very long trek to Ribbersdale for a pit stop, a brief moment to admire a stunning viaduct before starting the long and frankly hellish ascent of Whernside (736 metres) I will own up to having a few negative thoughts at times whilst walking up Whernside, along of the lines of ‘How do I get out of this bl**dy challenge?’ ‘Why did I pick this challenge?’ After a mouthful of Colin the Caterpillars negative thoughts were banished and I just trudged on and on and on until we finally reached the summit. Coming down the peak was a challenge for many but strangely enough I discovered my inner mountain goat and actually rather enjoyed the descent. The walk between Whernside and Ingleborough (723 metres) is quite short and before we had time to fully recover from Whernside we were on yet another slow steady climb. Just when I’d had enough of slow steady climbing we arrived at a dramatic vertical ascent which in my opinion looks more daunting then it is. Another 900 metres of putting one foot in front of the other we finally reached the third and final summit. The third summit is just the beginning of the end, after that we had another mountain goat descent followed by a five mile walk back to Horton. Everyone was amazing, hardly another moans and groans, in fact I recall a laugh or laugh (possibly hysteria) and a genuine team spirit.

Not very glamorous but hugely rewarding experience

For me the challenge was a huge milestone in the journey I was forced onto with a diagnosis of AML. Treatment for acute leukaemia, two stem cell transplants have beaten and battered me mentally and physically over the last fifteen months. In fact I was only 112+ days post my second transplant when I under took the challenge. I have previously trekked large sections of the Great Wall of China and Kilimanjaro, I can honestly say the Yorkshire Three Peaks was a much more difficult challenge excluding my AML so when I take into account all I have endured I’m amazed at myself and achieving what I did at the weekend feels very much like two fingers up to cancer. I’m also incredibly pleased to have personally raised over £4500 for Anthony Nolan and I eagerly await the final group total. It’s not often I can say I’m pleased with myself, on Saturday I was proud that I powered through to complete the challenge and that there is a chance due to our blisters, aches and pain someone may have a chance at life.

It was an emotional event for one and all, for me, there were two moments when I seriously had to fight the tears the first was as I scaled the rocks approaching Pen-y-Ghent. A breeze was blowing, the view was spectacular and it hit me that I’d tolerated some horrific experiences in order to have the chance to live and at the moment I felt very much alive. The second was when our guide, Tom, told me he had guided many people over the years and that I was up there as one of the people he was most inspired by.

Challenge over, I am now looking to my next milestone in the journey towards a full and healthy life. Tomorrow I will reduce my cyclosporine to 125mg twice daily, no reactions to the weaning permitting, I should be off the cyclosporine around the 6th July. That will be a fabulous day in many ways as I do suffer a few side effects from the drug. I probably sound like a broken record, as wonderful as that milestone will be there are potential issues with coming off cyclosporine. I am at a significantly increased risk of GvHD (complication from stem cell transplant, the transplanted donor cells (Dylan) may attack the recipients (me) body) My consultant informs me that the first six weeks off the drug are the most critical and that after that the risk of GvHD drops dramatically. Therefore I’m keeping everything crossed that I can get through to mid-August with minimal complications, especially as it’s my birthday in July and I’m planning a few celebratory shindigs.

Although it’s not a milestone, I would be extremely grateful for my hair to get a wriggle on with regards growing. I do at least now have a covering of hair, that said I still very much feel that I look like a cancer patient, either that or someone who got carried away with the scissors. I’ve recently returned to work in a part time capacity, I am still wearing the turbans as I’m not entirely comfortable with walking round the busy office with my current ‘style’. Wearing a turban all day long can become quite hot so it will be a good day when I can be turban free.

Day + 99 Decapitation in the Chilterns

This week has certainly been a week of numbers for me. Tuesday I had my +90 Day chimerism blood test which based on the +30 and the +60 test results, I expect to them to confirm I’m still around 95% donor. This is exactly where I should be at this point, in truth every being declared 100% is very doubtful. As I’m passed the 90 Day mark the consultant has decided to start to decrease my cicliosporine. I was taking 225mg twice daily, this has been reduced to 200mg daily and the current plan is to reduce my dosage by 25mg per week unless of course there are signs of GvHD. With each week, I feel life is becoming more and more my own rather than belonging  / being dictated to by my blood cancer. Coming off the cyclosporine is a titanic step forward, it carries a number of risks as the likelihood of GvHD rises, even so I’m staying positive that the team at Barts and I are making headway and moving in the right direction.

Whilst at clinic this week I was given my immunisation record sheet which I have to organise with my GP, now that I’m post 90 days. I start next week with the first of a number of vaccines to provide me with immunity to illness’s. These are vaccines which are normally administered to children, as my new immune system is in its infancy due to the loss of all my (old Rachel) immune system and the donor vaccines not coming over with the his stem cells I have to start again. Just as with the reduction of my ciclosporine this very much feels like a step in the right direction.

The stabbing is never ending.

The fundraising efforts continue and my personal total is slowly creeping up, I’m utterly amazed and over the moon that I have raised £4490 for Anthony Nolan. It’s wonderful to know firstly that I’m giving something back and secondly that I could have helped provide hope to another person suffering from blood cancer. Along with the steady climb of my fundraising total I have also been training for the Yorkshire 3 Peaks challenge which is only 13 days away!!! Yesterday a friend, who was crazy enough to agree to partake in the challenge, and I walked 16 miles through the Chilterns.

We even managed to smile through most of the walk!!

We did have a couple of minor detours due to misleading information even so we completed the walk in 7 hours and 30 minutes which according to the target time for that particular walk was a respectable time. Compared to walking with a random group in the Lakes, I found walking with a friend, putting the world to rights etc. was much more enjoyable. I also take lots of snacks with me to keep my energy levels up. I munched  a snack an hour and cleverly saved the jelly babies and colin the caterpillars until the last hour or two which very like a much deserved treat. As a result my energy levels were absolutely fine, my biggest bug bear was that my heels were fed up with carrying me for over seven hours and my abductors were feeling the effect or the constant walking. Today, I have 2 blisters and stiff abductors but otherwise I’m pleased to report I feel pretty good this has enormously boasted my confidence for the big challenge.

Now….who was I thinking of when I decapitated this jelly baby?!?!