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Stem Cell Transplant Journey

Month

August 2015

Day +6 – Chemotherapy my ally

I’m officially neutropenic, as of yesterday, thanks to all the recent chemo, which means I have a low level of neutrophils (important white blood cells) as a result I now have to be even more careful with regards hygiene, food, avoiding unwell people etc. as the risk of infection is extremely high and a minor infection could quickly become serious. I’m pleased to say my haemoglobin levels are pretty respectable; blood transfusions are given when a patient’s level drops to around 8. Once upon a time, having a transfusion made me completely grossed me out, I had no choice but to deal with my phobia and I’m a very calm accepting patient when it comes to blood transfusions, these days. Personally, I’d prefer to avoid transfusions, if possible, because blood is a precious resource and I’d rather it go to someone more in need. My platelet levels aren’t too bad; I’m resigned to needing platelets at some point that said, again, I’d sooner someone else benefitted. I have twice daily observations in the hospital and I’m rarely without my trusty thermometer. I will continue to be neutropenic until my bone marrow has started to recover and produce new blood cells. The hope is that Superman’s cells being young, fresh and not battered from months of chemo will ‘wake up’ and start to make blood before the vast majority of my cells. It’s a waiting game.

Blood results
Blood results

Today, Day +6 I receive what ought be my final chemotherapy as part of my leukaemia and transplant treatment. I’ve received thirty two days chemotherapy over the last five and a half months. I’m not posting a photo with a piece of paper saying ‘my last day of chemo’ because I’ve learnt in life ‘never say never’. None of us know what could be lurking around the corner and although I would very much like to believe I’ll never have chemo again and that Brad Pitt is waiting around the corner for me, I don’t have a crystal ball. If you put a featherweight and heavyweight boxer in the ring together your money would be on the heavyweight. Cancer is vicious and therefore it requires something equally wicked to stand a chance of kicking the cr*p out of it. As unpleasant as the chemotherapy has been, at times, it has ultimately been my ally; it put me into remission and has prepared me for the transplant.

Nine years ago, I had pneumonia, trust me I don’t make a habit of having serious illnesses and I do not have some sick desire to spend time in hospitals. Anyway, that illness prompted me to consider the bucket list notion. I didn’t initially draw up a list; instead I promised myself that every year I would do something I’ve always wanted to do. Subsequently I did a parachute jump, went abseiling, kayaking etc. and as each year rolled by; I struggled to come up with a new activity to challenge myself with. Therefore, I eventually drew up a list the vast majority of which consisted of places I wanted to go to and things I wanted to see. When I was diagnosed with leukaemia in March that list suddenly lost its meaning to me. Ultimately when I examined what I really wanted, faced with the genuine prospect of death, it wasn’t to hand glide, travel etc. it was simply to be able to spend time with those I love. I have nephews and a niece I want to be there for should they need their aunts advice, help. I have friends and loved ones whom I truly want to see achieve their ambitions and if by supporting them, I can help then I’d rather do that than jump out of a plane. As much as travelling and personal experience provide a wealth of knowledge they aren’t a substitute being there for people you love. My bucket list will be going in the bin because it’s really quite simply to me now; I aspire to make every effort to be there for others through the good and the bad times.

I’ve been blessed to have visitors most days since I returned to Barts, I’m having lunch with a friend later and I have no doubt the conversation will be a refreshing change from the medical tête-à-têtes I have twice daily on the ward.

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Day +4

Slowly I am getting over the effects of all the drugs I received on days -3 and -2, as well as the fact my body is beginning to become accustomed to the cyclosporine (immunosuppressant) which I am taking, twice daily. Each day I feel a little more human than the day before, although I’m still having a few odd sensations. For example, my fingers and toes often feel tingly, it’s a similar feeling to when you’ve come in from the cold and your hands are burning / tingling from the sudden exposure to the warmth. I’ve also had a couple of times, mainly in the mornings where I’ve felt rather light headed, mostly this occurs after standing up. My gut is tender, as a result of all the drugs so I’m won’t be eating any curries etc. for a while. All these are symptoms to keep an eye on but they don’t make me feel unwell, just a little off.

Day +3 the weather cheered up and I finally felt well enough to go for a walk. Previously I have been in the habit of taking a daily wander when staying at Barts, not only is it a change of scenery but the walk helps to stretch out my not so young limbs. I wasn’t able to go at my usual ‘on a mission’ pace, even so it was good to get out and see London in the sunshine. I’m not a city person, as London was once my home and has been my place of work for many years, there is a small part of me which loves it and yesterday, London was looking particularly fabulous in the sunshine.

Pleasant stroll along the Thames
Pleasant stroll along the Thames

The walk was bitter sweet because as much as I was relishing being out and about I couldn’t get away from the fact that had I have not got leukaemia I would have been at my close friend’s wedding. This year has been a very ‘big’ year for her, a milestone birthday and her wedding both of which I had plans to be there by her side. As it turned out I wasn’t able to attend her birthday party, her hen do or her wedding. It’s odd and frustrating to watch other people’s lives progressing whilst you stand on the side lines, particularly when you are ordinarily bang in the middle of the chaos. As much as I know she understands this is a rather unique situation beyond my control, I feel I’ve not been there for her as a friend which disappoints me deeply. From a selfish point of view, sometimes it’s hard watching other people’s lives developing while you are ‘trapped’ in a situation and place not of your choosing.

Day +1 and Day +3, I was given a chemo drug called methotrexate which is used to interfere with cell growth and is administered by IV. I have one more shot of this on Day +6 and then for my leukaemia treatment I should have completed all the proposed chemo. As well as receiving chemo, I’ve been having my levels of cyclosporine monitored to ensure I have ample in my system to do the job of preventing rejection but not too much, as the drug has a number of side effects. The medical team have also been running tests for CMV (Cytomegalovirus) as Superman was negative for the virus and I was positive. CMV is a common virus which affects most people in their childhood; the symptoms for it are similar to the flu. As my immune system is being suppressed the virus poses a significant threat to me therefore the team test regularly for presence of the virus and hopefully should I have the misfortune to catch it, I’ll be treated before I have any symptoms.

I’ve had the misfortune to possibly be exposed to chicken pox. On Tuesday a friend visited and on Friday they had a raging fever and spots, a trip to the GP confirmed their worst fears. I’ve had chicken pox but if Superman hasn’t if I have picked up the virus then there is a risk I might get chicken pox and or shingles. I’ve informed the medical team and it’s something we will all keep a close eye on, I’ve got my fingers crossed it’s a false alarm. Just a taster of life minus a fully developed immune system which is why post my transplant for a significant period of time I will have to avoid children, large groups / crowds and people who are feeling unwell.

Feeling a bit off colour has possibly affected my ability to concentrate; I must confess I gave up on Jonathon Strange and Mr Norris after two hundred pages because I simply couldn’t get into the blasted book. I picked an alternative book because I heard it was funny and two pages in, I discovered the main character is a leukaemia patient. Talk about not being able to escape!

Day 0 The big day

Yesterday I received Superman’s stem cells millions of them. I suspect people might ask ‘do you feel different, in any way? No, I’ve had blood transfusions etc. and it’s extremely similar.

Millions of stem cells in one bag. Hopefully this single bag is the answer to saving my life.
Millions of stem cells in one bag. Hopefully this single bag is the answer to saving my life.

I did have a rather ludicrous moment of anxiety when the drip was plugged in. I thought to myself, Superman is male and I’m female consequently over time I will have male and female DNA does that mean there an actual risk I might start to scratch imaginary nuts and find myself reading on the toilet?!?! After dismissing that thought I recalled the recent Guardian article about young blood helping to reduce the aging process which I’m keeping my fingers crossed has some truth in it, if that is the case, just imagine how many wrinkles stem cells could iron out, which made me feel better!! Clearly nerves and excitement briefly lead to hysteria.

Joking apart yesterday was a Big Day. When people use the term Big Day they are more often than not referring to weddings, births etc. There was no wedding or a birth today on Ward 7A but I was forever tied to this young stranger emotionally and physically, his gift to me was the prospect of live. Undeniably it was an emotive day, I cannot describe the gratitude I feel and at times during the transplant I felt quite overcome. I have endeavoured, probably over a thousand times, to verbalise my thankfulness and I fear that I will never genuinely be able to do that. I handed over my best attempt to my clinical nurse specialist who will pass the letter on via Anthony Nolan, I hope that I have conveyed to him the gravitas of his decision to join the register. Forgive me but I will not post a copy of this letter because it’s strictly between the two of us.

To show my gratitude to and support for Anthony Nolan, I purchased a T-shirt #IGiveASpit and wore it. Every little attempt to raise awareness, helps.
To show my gratitude to and support for Anthony Nolan, I purchased a T-shirt #IGiveASpit and wore it. Every little attempt to raise awareness, helps.

My blood counts have over the last few days been the best they have in months; my neutrophils were 7.4 on Sunday. My counts should start to drop as a result of the chemo I had from Wednesday to Sunday and I have another three sessions of chemo this week. Superman’s stem cells will magically migrate from the blood stream into my bone marrow where they will hopefully settle in and over the next two / three weeks start to make blood. This doesn’t mean that I will not continue to make my own blood, the transition to 100% chimera is not an immediate one and in fact being dilatory isn’t a bad thing, the main thing is that I do become a 100% chimera.

I’m still suffering from the reaction I had to the drug Mesna (drug used alongside a chemo drug) I have also had an increase in my blood pressure, partly due to the Mesna but also the cyclosporine (immunosuppressant). My blood pressure is now what doctors would consider to be normal however for me it’s outrageously high and I’m experiencing a few symptoms of high pressure; feeling nauseous, flushing (that could be the Mesna), feeling weak and tired. Initially I was given a ‘loading’ dose of cyclosporine this has now been reduced by 250mg per day so I’ve everything crossed things settle down, over the next few days and I feel a little less, ‘under the weather’. The most important thing is that as far as the doctors are concerned, I’m holding up well and was just unlucky to have a drug reaction at the same time as being given a large dose of hardcore drugs. I’m now on around eighteen to twenty tablets per day, depending on the day and yes the pre food drug is still catching me out. Grr…..

It was hard to focus the twenty four hours leading up to the SCT, not only have I had my drug reaction knocking me for six but it’s been a time of deep reflection. I requested a vial of my blood pre-SCT as it’s the last chance I will ever have to own a sample of my blood DNA, it was quite distressing to hold it and know that if all goes well my blood DNA will not be my own from here on. Even after months in hospital, hundreds of blood tests, a bone marrow biopsy, three bone marrow aspirations, a Hickman line, twenty nine days of chemo, more drugs then a wish to recall, in depth conversations with consultants etc. until the hour of the SCT draws near it all have a slight fictional feel to it. As excited as I am to be moving forward with my treatment, I’m aware of the risks of which there are many.

I’m shattered from all the drugs, the nerves and anticipation. I’ve not slept well in recent months, now I actually feel as if I could fall into a long and deep sleep. I shall think of my little boy tonight and dream of cuddling up, a very calming thought.

Cuddle time with a full head of hair.
Cuddle time with a full head of hair.

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Day -1

My arse needed a good pommelling after the weekend, sadly no one was available to do the honours and to make matters worse, the weather is shocking was I wasn’t able this morning to take nice long walk to stretch my muscles. I must have spent the bulk of the weekend sat down, the only times I wasn’t seated were when I was dashing to the toilet, which was quite often. Saturday went as planned, Sunday not so much. I had some tablets to take Saturday evening and I had a reaction to them, stomach ache and hot flushes so after my treatment Sunday I was sent out to another unit for additional fluids and observation. Therefore I spent from 9.30 a.m. to 10 p.m. in hospital on Sunday. I won’t be brave, it was a tough weekend and I feel pretty rough but sometimes you have to get worse to get better. Mercifully entertainment plan worked a treat, the boredom was held at bay and I‘m finally up to speed with Season Five, Game of Thrones.

My aching posterior brings back a memory from my second cycle of chemo. I was ambling through the ward and I spied a lady, in the television room, watching Holby City (a medical drama). I had to look twice; I was so flabbergasted at the concept of watching a hospital drama when being in a hospital. I confess I’ve watched Holby etc. and I can tell you, that medical dramas are woefully incorrect with regards hospital life. I’m a haematology patient and in all the hours, days, weeks etc. I have spent in hospital; I’ve not once seen a blood splattered apron or rubber gloves dripping with drenched in crimson. Neither have I seen any real crisis, it appears to me any emergency is usually dealt with in a controlled and orderly manner. I also have it on good authority that none of the doctors are having secret liaisons in the drug cupboard!! Yes, I can vouch that being in hospital isn’t dissimilar to watching paint dry, for the largest part. I presume reality doesn’t make for a gripping drama!!

Today, is -1. Which means Superman (my donor), all being well, is having his stem cells harvested. I’ve been thinking of him a great deal, it’s overwhelming to realise a person I’ve never met is putting themselves out to give a perfect stranger a chance of life. It’s also lovely to know that someone is selfless enough to happily do something for absolutely nothing. The media bombard us with negative images and information, so much so it’s easy to take a dim view of the world we live in and the people in it. Via twitter I’ve received countless messages of support, well wishes, people have even contacted me to share their personal experiences, it has been extraordinarily emotional to receive these messages of kindness along with the fact Superman is today giving of himself for me. Kindness doesn’t cost a thing but it can give so much, sprinkle it everywhere is my new moto.

From a scientific point of view, it’s a very quiet day. I finished the conditioning chemo yesterday and in order to give the blood a chance to ‘clean’ itself I’m not receiving chemo today so that when the stem cells go into me tomorrow they won’t be spoiled be any residual chemo in my blood. This morning I had routine blood tests, obs etc. as well as a blood test to measure the amount of cyclosporine (immunosuppressant) in my system, which helps the doctors’ work with the dosage to ensure they have it just right for me.

Tomorrow is a huge milestone for me; it’s also a bit of an anti-climax. In contrast to a kidney or heart transplant, I won’t be undergoing hours of surgery, I will simply receive the stem cells in the same way I do blood, platelets, drugs etc. The transplant will possibly take up to an hour and that is it!!! I can only equate it to my work in construction; this is the first spade in the ground. Singularly, it’s a small step however wonderful things are done by a series of small steps. A leukaemia free life.

When my Hickman line was put in, I didn’t think much of it, doubtless because at that time I had numerous things rattling around my brain. Strangely enough the Hickman line was one of two things which really hit home the reality of cancer and that is; cancer invades every nook and cranky of your life. I went to have my first post Hickman shower, I had to make every effort to cover the line and to keep the entire area dry whilst showering, in order to prevent infection. I stepped into the shower and all I could think of was the blasted line, I was extremely paranoid about getting it wet. In that moment it hit me, I thought ‘I can’t even escape cancer in the bl**dy shower’. One of life’s simple pleasures; stolen. Looking back, I probably washed myself with my tears more than the shower water, that day. I look forward to the day when I can shower without concern, luxuriate in a bath, indulge myself with soft cheeses, pate, seafood, raspberries, buy fresh cut flowers, wear whatever I like without considering tubes and dressings. That day will be the very best of days, a leukaemia free day.

A souvenir of my DNA. Hopefully the last vial of Rachel DNA
A souvenir of my DNA. Hopefully the last vial of Rachel DNA

Day -3

Days -5 and -4 weren’t too unlike, Day -6. In the mornings I had obs and a check up with the doctor and then in the afternoon I would return to the day unit for chemo, Fludarabine. I’m getting the hang of administering the multitude of tablets I have, there is just one which keeps catching me out. I have to take it thirty to sixty minutes before food and of course I recall this just as I’m about to eat! Luckily, I’ve been eating salads so it’s not been too much of a hardship waiting the extra thirty minutes.

Day -4 I had a pleasant but unpleasant surprise. I was waiting to be called in to have my bloods taken when an old work colleague sauntered into the waiting room. I wasn’t sure whether to go and say hello, after all it’s a hospital and for many people illness is a private matter but I thought sod it and went over to say hello. Turns out he was there for a bone marrow aspiration to test for a blood cancer. As lovely as it was to see a friendly face, my heart broke with the knowledge of what he and his family are going through at this time. Diagnosis seems so distant to me in many respects however I recollect receiving the call to go to the hospital as clear as if it were five minutes ago.

One of the days I had the misfortune to sit next to two transplant patients who had not seen each other for some time. Conversations on the day unit are often very open; after all, we are all blood cancer patients suffering similar challenges. The honesty with which patients talk about their experiences can be a double edged sword. For example, patients can share their experience and in doing so they provide a lessons learnt which can prepare you for what is ahead. However, sometimes there is no lesson and it’s just a very alarming experience you wish you hadn’t heard. Sadly, this particular conversation fell into the latter category. My brother and a close friend both pointed out to me, on a previous occasion of listening to cheery occurrences that of course I’m going to hear the worst of it because I’m in hospital. All the patients who have had healthier transplant experiences are now well and are out living their lives, rather than sitting on the day unit exchanging woes. So, after the initial trauma of what they were discussing, I reminded myself of these wise words. (Wise words from men, what a rare treat!! Ha ha)

Today is Day -3, being candid; I am not looking forward to it at all. Not only will I have Fludarabine, I will also receive cyclosphosphamide, another chemo drug. Cyclosphosphamide is well known for irritating the bladder, potentially causing problems when passing urine. Therefore I will be given large amounts of fluids, via my Hickman line; to help prevent bladder irritation consequently I will probably spend the vast majority of the day in the day unit, running to the toilet.

It's mandatory to wear pink to coordinate with the protective bag (against light)
It’s mandatory to wear pink to coordinate with the protective bag (against light)

I also start taking the drug, cyclosporine, today. Cyclosporine is an immunosuppressant which is used to treat transplant rejection. As with all drugs it has some side effects, it can cause an increase in blood pressure, thankfully as I’m terribly low naturally, this shouldn’t be a big issue for me. The side effect which is most concerning me is the increased hair growth on the face and body. I’m not sure I can put off the Wolverine look. Medically, the hardest part of taking cyclosporine will be the fact my immune system will be compromised, which is necessary to prevent rejection but will leave me vulnerable to potential bugs, germs etc.

Day -2 will be a carbon copy of Day -3, so it’s not going to be a wild weekend in Barts. Time to go into the day unit, for a fun packed day. When I’m not in the bathroom, peeing for Britain, I will, firstly, be reading Jonathan Strange and Mr Norris for a couple of hours after which I’m treating myself to a marathon session of Game of Thrones. (I can’t believe how many TV programmes I’ve become addicted to since starting treatment)

Missing cuddles with my cat. 😦

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Day -6

Yesterday is referred to as Day -6 and it was a hectic day. Around 9.30 a.m. I received the call to confirm that Superman is fit as a butcher’s dog and therefore able to go ahead with the harvesting of his stem cells next week. By 10.30 a.m. I was on a train hurtling to my London residence for the next month, Barts. As the taxi pulled away from the house, I was overcome with emotion, at the sheer magnitude at what is about to happen. No one imagines they will have a transplant; it’s so beyond anything vaguely sane person would wish for themselves. Until, they find themselves critically and it’s the only option for survival. Twelve months ago, I was the picture of health and had someone of informed me that in a years’ time; I’d be heading off to hospital to receive stem cells from a complete stranger in order to save my life, I won’t have believed it. Sometimes it’s best we don’t know our future.

Upon arrival at Barts, I dropped my bags off at the hostel. Barts has some rooms available in one of their buildings next to the main hospital facility, which are for patients who are in good health whilst receiving treatment however they need to be monitored closely but doesn’t require 24/7 care, as long as the patient remains infection free. The hostel offers me more freedom than being stuck on a ward, I can go out for a walk, nip to a café to meet up with friends when I’m not on the day unit, I even played tourist and visited St Pauls on one occasion. A big plus is that I have my own room, many a night on the ward I’ve been kept up by bleeping machines and patients who have required care. I also have to sort my own food out which means I avoid the plates of congealed stodge served on the wards which often look akin to cat food.

Bags dropped off, it was straight over to the day unit for obs (temperature, blood pressure, oxygen saturation and pulse) routine bloods. After which, I had to visit another department to receive another drug which is administered via a nebuliser, pentamidine. This drug is used to prevent PCP, a form a pneumonia, which blood cancer patients are more susceptible to due to having their immune systems beaten and battered by all the intense chemo. Most patients are able to take a tablet, however I discovered in the first cycle of chemo that I’m allergic to that, consequently every month I spend roughly an hour breathing in the drug.

After the nebuliser it was back to the day unit for the first chemo session. Prior to the chemo I had to be examined by a doctor to check that I was physically up to receiving the chemotherapy, once that was out the way I was hooked up via my Hickman Line to the chemo. Day -6 chemo session is short and sweet, no more than fifteen minutes, followed by a short saline drip. I was then handed my medication to self-administer over the coming days.

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A few years ago over a bank holiday weekend I went out for a few drinks with a couple of girlfriends, as always a few ends up being a few too many and on this particular occasion I certainly had more than my fair share of expresso martinis. I suffered for the best part of two days, my poor liver didn’t know what had hit it and I fear it is about to go through a similar experience. The day before, yesterday, I was down to a bare minimum of five tablets per day with an extra two or three on a Monday. Now, I am popping more pills than Lindsay Lohan and Charlie Sheen on a night out together. Anti-virals, anti-fungals, anti-bacterials, tablets to stop menstruation due to low platelet counts, anti-sickness, anti-biotics and so on. I will have to be on the ball as I have some new drugs and some need to be taken with food whilst others shouldn’t. I’m sure in a couple of days, when I liver is groaning, I’ll have the hang of all of them just in time to start the loading dose of cyclosporine.

Drugs, drugs and more drugs and not one gets me high!!
Drugs, drugs and more drugs and not one gets me high!!

After all the toing and froing, the new drug regime, I thought it wisest to forgo my daily stroll along the Thames and retire to my room to rest. I’m, now, a pro at long periods in hospital, I arrive fully prepared for the endless hours which will be spent waiting and confined to the area around the hospital. I’ve a selection of DVD’s to while away the long evenings, I have loaded my kindle ready for hours of waiting and receiving treatment. I’ve even packed a jigsaw for the rainy days when I will have to miss out on my daily saunter. Throughout all my treatment, I’ve been extremely fortunate to have plenty of visitors; they have been a blessing breaking up the monotony of hospital life with juicy gossip from the outside world.

Last night I decided to start watching True Detective, it’s absorbing but in a rather weird way. I can’t say I warmed to either of the main characters, one seems like a complete w*nker and the other is lost in the depth of depression even so I felt compelled to watch.

Suitcase full of entertainment and hope

I don’t know about you, but when I was a child visiting the fun fair, I always wanted to go on the Ghost Train. I cannot fathom why I wanted to go on the Ghost Train, as invariably it frightened the living daylights out of me; even though I always wanted to go on it. I vaguely recall a fleeting feeling of excitement, sitting there waiting for the train to pull away to take me into this dark cavern full of beasties. Having put the phone down, after speaking with my specialist nurse earlier today, I had a feeling extremely similar to that, a combination of fear and anticipation. I am finally returning to Barts to commence the conditioning chemo and for the Stem Cell Transplant. The results of the bone marrow aspiration came through Monday evening confirming that I am still in remission, the ‘blip’ in my neutrophil count was probably down to a viral infection. All of the donors health test are yet to be verified, however the remaining results are due tomorrow morning. The plan is to prepare to go in to Barts to commence conditioning chemo tomorrow.  Talk about going to the wire.

When I was originally diagnosed I had very little time to consider what I was embarking on, on the Wednesday I was given a full diagnosis and brief description of my treatment and by the Monday I was in the hospital bed being prepped for chemo. In stark contrast, I have had oodles of time to contemplate the forthcoming SCT, plus I’ve had the opportunity to meet and talk with patients who have been through a SCT, listened to their tales of intensive care, lengthy treatments to manage GvHD (rejection) etc. Fear is the overriding emotion that I am feeling, after all not even the doctors know how my body and my new blood with react to each other, how I will respond to the new medications but we do know there will be times which aren’t very agreeable. I keep reminding myself that chemotherapy wasn’t in any way as awful as I anticipated, of course, there were some unbelievably appalling days but overall the whole experience was better than what I had believed it would be. I expect it is fear of the unknown driving my anxiety.

A SCT does offer hope; it offers the prospect of a cure which means the chance of life that is what is ultimately behind the feeling of eagerness / excitement within me. It would be foolish to imagine life could be the same as pre leukaemia, nevertheless that doesn’t mean life can’t be superb, it a new and different way. It’s about adapting; Socrates said ‘the secret of change is to focus all of your energy not on fighting the old, but on building the new’. Sounds like very good advice, to me now I just have to follow his words of wisdom.

Whilst I anxiously waited for the results of the bone marrow aspiration over the weekend i took another mini road trip, to keep me from dwelling on the potential results. Aldeburgh, where I visited last week is in Suffolk and I returned to area, in my continued attempt to fill me up with countryside experiences prior to going back to Barts. I visited another National Trust venue, Dunwich Heath for a pleasant walk exploring all the heather and the beach. So, now I have hopefully topped up my quota of countryside and wildlife enough to make four weeks mooching around Barts, not hearing a bird sing, at the very least tolerable.

Colourful heather of Dunwich Heath
Colourful heather of Dunwich Heath

I’m suffering a very bad case of guilt as my little boy cuddled up to me last night, all night. Like most cats he decides when he wants affection, although he’s a loving cat he’s not normally one to snuggle into me for more than an hour or two. Last September his brother sadly passed away, they’d grown up together and had hardly spent more than a day apart in eight years. Initially he was quite bewildered without his brother to chase around the garden, fight over food, curl up and clean each other etc. Just as he was getting used to it being the two of us, I fell ill and for months he didn’t know if I was leaving the house for an hour or a month. We have literally just started to establish a routine and I have to leave tomorrow for the best part of a month, my heart breaks knowing his world will be turned upside down, yet again. I shall miss his cuddles over the next few weeks.

Bless...he wants to come but cats aren't allowed
Bless…he wants to come but cats aren’t allowed
Me and my handsome boy
Me and my handsome boy

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Living the nightmare

It’s been a nerve-racking and emotional week, I returned to Barts on Wednesday for a routine blood test and dressing change, after which I was spoilt, as a friend and ex work colleague took me out for a delicious lunch. Settled on the sofa watching Dexter, later on that evening, I received a phone call from the hospital informing me that my neutrophil count was low; it had dropped from 1.6 the previous week to 0.5 and the consultant wanted me to return for a repeat blood test. Initially they said I could go into my local hospital for a blood test, however they called back insisting that I return to Barts with a plan to take a blood sample, have it rushed through the lab and then should a bone marrow aspiration be required I would be available to have one immediately. The blood sample wasn’t rushed at all, it took over three hours for the result to be available and although my neutrophils had gone up they hadn’t gone up by enough to dismiss any concerns the consultant was harbouring, which meant another bl**dy awful bone marrow aspiration.

The main concern is that the Acute Myeloid Leukaemia may have returned and if so we cannot procedure with the SCT for the time being. I would have to return for more high dosage chemo to put me back into remission, should leukaemia be spotted on my aspiration slides. I hope to have the results of the bone marrow back early next week and I’ve everything crossed that my bone marrow is leukaemia free so that the SCT transplant can go ahead.

To keep my mind of my woes I’ve been getting out and about, I continued with my mini road trip adventures by driving to Aldeburgh, an enchanting Suffolk seaside town. If you ever go, I can highly recommend the Aldeburgh Fish and Chip shop the queue is testament to how tasty the food is. I rather liked the stainless steel scallop sculpture which I gather has divided local opinion since it was erected. The weather was typical British weather; even so I enjoyed my excursion.

The sun failed to shine, to help me show the Scallop at its best
The sun failed to shine, to help me show the Scallop at its best

As I desperately miss countryside and wildlife when I’m confined to my temporary London residence, otherwise known as Barts, I took the opportunity to visit the local National Trust venue to learn more about bats, as well as see and hear them. It was an absolutely enthralling evening learning about bats and as I have no hair I didn’t have to worry about them getting tangled up in it!!! (Which is a myth, by the way)

I may not have had my ‘luck’ with my blood tests but I did have a stroke of luck earlier in the week, when I won a meal for two at a great local pub for a competition I didn’t even realise I’d entered! It would have been very rude not to take up the offer, I asked my trusty friend to come along and indulge with me, and we most certainly did indulge.

After a whole day of sitting around the hospital Katherine Parr and I finally parted ways, since then I began reading Jonathon Norris and Mr Strange….not sure what I think of it at the moment.

 

Dreaming of Christmas cake

I am still waiting for the phone call to confirm my admission to Barts one day next week; I am hoping to receive a call saying ‘pack your bags’, any day. I’ll start chemotherapy the day I return to Barts and I’ll receive different chemotherapy drugs to the ones which were previously administered. I will be given Fludarabine and Cyclophosphamide as conditioning drugs for my transplant. It is my understanding these are not as harsh as the previous drugs, however the list of side-effects is the same.

I remember signing the original consent form, back in March and my friend was with me, tears were welling up in her eyes as the doctor discussed the long list of potential side effects. (Please note, she then asked him if I was allowed to drink alcohol, clearly this is very important at such a time!!) I suspect tears were probably running down my face, oddly enough I don’t recall. I only recollect being very nervous. In truth I wasn’t entirely sure what to expect with regards receiving the chemo and how quickly side effects would kick in. I suspect when you’ve not had it and have no experience, you conjure up visions of sickly looking patients hanging over the toilet rather like what was portrayed in scenes from the film, Dying Young with Julia Roberts.

I’ve been exceedingly fortunate not to have suffered, a great deal, during the periods I have been receiving chemo. So far, I have received chemo for twenty four days and have another five to go. The main ‘general wellbeing’ side effects I suffered have been some mouth ulcers and during the high dosage phase I experienced rather horrid headaches. Otherwise I’ve not had any of the nausea, so often associated with chemo, this is due to the fact I was provided with anti-sickness tablets and for me they worked a treat. There are of course side effects which are more long term which you might not feel, such as effects upon the heart, lungs etc. These, where possible are closely monitored by the hospital. Infertility is a hard on to predict, taking my age into consideration it’s most likely I won’t be able to have children. This was very upsetting, initially, however I feel I have come to terms with the fact and suspect I was more disappointed at having the choice taken from me. The loss of my hair has unquestionably been the hardest side effect to come to terms with, for most side effects there are tablets to mitigate the resulting issues but no wig, bandana etc. could make me feel like myself, at a time when I most needed to feel like Rachel, has at times been an impediment.

Just a few ingredients
Just a few ingredients

I’ve hardly had two waking seconds to myself over the last few days because I have been baking, baking and doing a little more baking, hence why I have been dreaming of Christmas cake. Eight Christmas cakes have come out of my oven over six days, August / September is an ideal time to make them as it gives the cake plenty of time to mature, so that it tastes scrumptious, come the festive season. The plan is that three of the baked and decorated cakes will be raffled off for charity early December to raise money as part of a larger fundraising effort / challenge, the Three Yorkshire Peaks.

If only photos were scratch and sniff, smells divine.
If only photos were scratch and sniff, smells divine.

May 2016, nine of us will be trekking / climbing the Three Yorkshire Peaks (23 miles, an accent of 1371m over approximately 12 hours) for charity. I’m thrilled to report that eight of us are doing it for Anthony Nolan and the other worthy charity to benefit will be Crohns and Colitis. Due to the fact my immune system will be suppressed, I will not be able to frequent gyms for a significant period, as it has been known that persons of dubious hygiene standards patronise them and not everyone has the good sense to hold back on training when they feel under the weather. The challenge will force me into the great outdoors to keep fit, also my joints may well be affected by GvHD (rejection) and all I’ve read advises that although the patient may not feel like getting out and about it really is advantageous. More important, than regaining my fitness post the transplant is that we hope to raise some money, Anthony Nolan has through their hard work potentially saved my life; therefore I consider it my responsibility from now on to work hard for them so that they can continue their good work.

Katherine Parr is calling me, I’m keen to finish the book I am reading about her, before I go into hospital. I hopefully have a ‘corker’ lined up to whittle away a lot of hours, Jonathan Strange and Mr Norrell.

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