The Cancer Look

Having cancer and dealing with said cancer, is a very personal journey. As the days since my diagnosis have rolled into years, I am occasionally surprised that having cancer is nothing like I thought having cancer would be like.  I am comfortable with that small epiphany until embarrassment catches up with me and I realise that I once thought it was something far more definable. By the way, I should explain that I do hate to use the word ‘journey’, because it makes it too easy for people to mistakenly conjure up an image of me on a metaphorical  road to some sort of luvvie duvvie infused, spiritual enlightenment. In my head, the word ‘journey’ simply means that I manage to keep moving forward, albeit slowly, in spite of what is happening with My Myeloma. How I achieve that and how I appear whilst doing it, is my own private business (the fact that I choose to share it is neither here nor there). In truth, I am not completely comfortable using the term ‘cancer’ to describe what is wrong with me. To me ‘cancer’ is an umbrella term that covers a whole host of nasty, sinister things, which present themselves in a variety of shapes and sizes. I have Multiple Myeloma and yet, my explanation of what I have when strangers ask, rarely gets beyond the term ‘cancer’.Approximately   5000 people in the UK are diagnosed with MM annually.  In my very personal journey, I have come to the conclusion that even though it accounts for around 1% of newly diagnosed cancers, myeloma is a relatively small community; the way in which  myeloma sufferers cope, behave, look and feel, will always an individual’s experience. There may be similarities between patients, there will always be some similarities, but I strongly believe that each ‘Journey’, so to speak, is unique. 

There is a problem with my idea of having a personal, private and an individual journey. It’s a big problem. My Myeloma can never remain wholly personal or private because I exist in a world where other human beings exist and I have to exist with them. These human beings of which I speak, are a diverse bunch, many of whom have not had to experience cancer first hand (lucky so and sos), but they will still have their own perceptions of what cancer is, based on what they have seen and believe to be true, they will in turn apply this to me. Diversity is so prevalent in almost every aspect our society, that it is disappointing that the archetype or quintessial idea of what having cancer looks like is so flawed. I love a sweeping statement and I just made two. I cannot understand why in an educated society such as ours, the general and embedded consensus of how somebody with cancer should behave or look, is so simplistic, and for want of a better word, wrong. 

Cancer was not on the syllabus when I was at school, and to my knowledge is not studied in schools today, and so the general (mis)understanding of it, must stem from elsewhere. But where, oh where?

Cancer, that umbrella term for nasty and sinister things, is in itself diverse. A quick Google search tells me that there are currently around 2.5 million people in the UK suffering from cancer. Another Google search states that there are over 200 types of cancer, and believe it or not, some of those do not involve lump, tumours and remissions.  I may be preaching to the converted, but while we are on the subject, ‘chemotherapy’ does not stand for one drug and one drug alone, nor are the side effects of the variety of chemotherapies always the same. I still have my eyebrows. I say this because I once saw a procedural police drama in which the murderer was caught because she had eyebrows, which meant she could not possibly have had the ‘chemotherapy’ she claimed to have had and thus was exposed as a fraud and murderer. Brilliant deduction.  If only it was that easy. Cancer was not on the syllabus when I was at school, and to my knowledge is not studied in schools, and so the general (mis)understanding of it, must stem from elsewhere… The entertainment industry and the media in general can be blamed for almost every ill, but more on that later.

I cannot attest for the accuracy of the statistics I have quoted, leave that to Cancer Research UK, but the numbers should be big enough to prove that one size does not fit all. Put it another way, if a mad scientist put 50 healthy men in their 30s with brown hair in a room, you would expect their individual differences to quickly become evident. Yet, if the scientist put 50 people with ‘cancer’ in a room, my experience tells me that the majority of people would  expect them to act and look the same. I do not know why this should be, or at the very least, why I feel so strongly that this is true.   

I am not one to brag, especially not on this point which makes me see red in capital letters, but I am constantly being told that I do not look like I have cancer. You don’t look like you have cancer. I hear it so often, it almost feels that it has become my own personalised greeting. My world is fairly isolated, so perhaps it has simply become the fashionable thing to say to anybody and everybody, and I am being too sensitive. Instead of saying “hey there chickpea, nice bum”, every Tom, Dick and Harry are telling people that they  do not look like they have cancer. In the 90s there was heroin chic, in the 10s, there is this. It’s this season’s hottest look; baldness, blubber and lipstick. Today for example, on the last day of September, I was in a room with a number of people also with cancer, and two of them, separately, told me that I did not look like I have cancer. I shook my head. What does this phrase even mean? How should I look? Should I remove my smile? Is it a compliment? Should I be flattered? Most days I assume it must be a compliment and it is what I get now instead of “you look nice today, Emma”. Then there are other days when I think people use it as a backhanded compliment, and it is alternative way of saying “good God, you’re fat.” Once, a beloved family member, over dinner, told me that she thought it was strange that I had put on weight post diagnosis, when it is the norm for the opposite to happen with cancer. I was then questioned as to why I thought I was an exception to the rule. I do not think there is a rule. Horses for courses. Needless to say, it was a conversation that made me feel real swell. 

Comments like the ones I have mentioned above, even if they stem from a compassionate place, make me think badly about myself. It is not because I feel like Quasimodo, I don’t. They make me feel like I have done something wrong with regards to my treatment, and that by not looking ‘ill’, I am a liar, a fraud, a hypochondriac or worst of all, it makes me question if my treatment is working. It’s not a feeling I need, especially whilst stuck in this current twilight zone. If I try really hard, squint and look back over the past three glorious years, I think there have been times in the hospital and out of the hospital; with cancer patients and with normal folk, when I have felt penalised for looking the way I look. I do not know why. Whilst waiting for my last clinic appointment, I surveyed the faces of the thirty plus people waiting with me to be seen at the myeloma clinic, and I could not tell who were patients and who were family, and neither would I want to. The room was full of people of various ethnicity, age, size, hair colour and personality. Some people looked out of the window, others look at their phones, one person read a book, I started this blog. The only assumptions  I made in that room were regarding the couple who failed to say “thank-you” when I opened the door for them, and a woman who made me climb over her legs and belongings to get to my appointment. Maybe I did not look like I had cancer, so they thought they could forget their manners?

Essentially, Cancers, plural, are complex enough without applying stereotypical and superficial views of what somebody with cancer should look like. It does not afford the people who suffer from cancer and their plight the respect they deserve. It garners sympathy, sure, but it cannot create true empathy.

Apart from seeing two of my grandparents die from cancer, my pre myeloma experience of cancer was slight. My impression of a non-elderly person having cancer was unrealistically pieced together from various media portrayals of what cancer is: films, television programmes, cancer charity adverts and newspapers, all played their part. It was a picture that usually involved weight loss, looking tired, general frailty including looking pale, vomiting, hair loss hidden by a pale coloured scarf and finally, remission or death. Despite the current trend for adapting Young Adult literature on this subject to the big screen, it is a perception that remains, even among patients. In the modern press for example, if somebody famous displays one or two of these symptoms, usually the first three (for few people care to vomit in front of their neighbourhood paparazzo),  gossip columns become awash with speculation that the person in question has cancer. Just last week, I saw two such articles about two different actors. Is it the new body shaming? Although many people with cancer do suffer from these side effects, it is wrong to think all sufferers experience a similar path. I understand that not everybody in this fair land is medically trained (I am not), and thus without a knowledge of a patient’s medical history and blood results, what are people left to judge a person’s health by if not their appearance? It’s an attitude that creates an artificial and incorrect hierarchy. Looking like you do not have cancer, doesn’t necessarily mean you don’t. D’uh. Insufferable presumption. 

 Jackie Collins, the famed and saucy author, sadly passed away last week following a ‘secret’, six year battle against breast cancer. As well as the traditional obituaries, I read one article in which the primary focus was not on her lifetime achievements, but that in the immediate weeks before her death, she showed no signs of being unwell, let alone have a terminal illness, and most of all, she did not look like she had cancer. I know a text message style abbreviation for what I think of this and it goes something along the lines of, what the fuck?  I’m a lady though, so I will just SMH.

The coverage introduced a further element to my latest pet peeve. It looked beyond how a cancer patient should look, and they should look and dress in whatever makes them comfortable, in case you were in any doubt.  To me, it raised how one with cancer, granted one far more serious than my own, should act. Take the terminal side of things out of this, and I ask of you, how are cancer patients supposed to act? Is there a general expectation or standard that should be applied to sound an alarm if somebody is acting ‘too normal’ or having too much fun? Should us poor sufferers spend our time between bed and the sick bowl or can we work, go to the pub and see our friends and family?  Is it too much to assume that they can do whatever the hell they want? We may have some things in common, but we are not clones of are respective diseases. I will put my hands up and say that in my pre myeloma past, I bought into the ‘cancer’ stereotype that provokes me so much now. I had seen Beaches, Stepmom, Erin Brokovich and even Sex and the City to name but a few, and I believed that that certain things did always have to happen with cancer and the limitations encroached were endless. There will always be limitations, but it is a ridiculous notion and one I am ashamed of once believing. It is a belief as ridiculous as me saying I know what consumption looked and felt like because I have seen La Traviata. Twice.

In the world of My Myeloma; a world where I do not feel well most of the time; a world where I take 40 pills a day to keep me moving; a world where I have to fight with my body at least five days a week to get out of bed; a world where I wear make up and wigs; a world where I control who sees me and when they see me; in this world, I think it is perfectly evident that I have cancer. Of course I would say that, I am with me all the time. I see and experience everything, objectively or not. It is my very personal and private journey after all. 

One day, I hope to be able to block out the comments that frustrate me, or at least learn how to tolerate them. In the meantime, from the bottom of my inferior vena cava, I hope that you never look like you have cancer. Whatever than means.

EJB x

Wildfire

Grassland Fire

Grassland Fire

In the mid-summer of 2015 when all of Oregon seemed to be on fire, the view from our home of the mountains was to the north in Washington, beyond the border of the rolling Columbia River. There, above the peaks of the barren foothills, a plume of smoke from a wildfire in the Indian Heaven Wilderness rose several thousand feet above the crusty top of Underwood Mountain.

Blue Mountain Fire

Blue Mountain Fire

A warm wind, Sirocco-like, poured through the gorge with gusts of 20, 30, and 40 mph exploding the tinder dry Gifford Pinchot National Forest. Farther east in the Blue Mountains outside of John Day and south in the arid high desert and grasslands of the Warm Springs Indian Reservation, more blazes raged out of control. Roads closed and sporadic evacuations occurred and homes were left to burn. Limited supplies of fire retardant and planes and other necessary heavy equipment added complications to the logistics of supplying Hot Shot crews and was as troublesome as the firefighting itself.

Canyon Creek Complex Fire

Canyon Creek Complex Fire

The winds ceased and mountain showers dampened portions of the fire arenas. Roads reopened and traffic flowed normally. The Hood River and its tributaries ran gray with glacial melt off of Mt. Hood, a result of the long hot summer. Irrigation districts in the valley applied restrictions on farms, which had already suffered through a poor blueberry season due to extreme heat in June. Pear orchards were healthy but the fruit was small for the fresh market and much would need to be juiced.

Wildfire

Wildfire

At night the horizons glowed with the burns and flared when a gust of wind ignited a patch of grassy fuel and the sunsets were unparrelelled with a palette of red, orange, and yellow. With the calming of the wind currents, we awoke to a pall of acrid smoke that stung our eyes and noses for several days and it settled upon the valley with a haze that obscured the mountaintops.

Slurry Bomber

Slurry Bomber

The evening cooled and I left my house early and walked several blocks to the hospital for my monthly clinic with Dr. L. The days had shortened but temperatures rose quickly and the hot weather continued with no rain forecast to relieve the crews fighting fire on so many fronts. And I walked back home after an unremarkable visit at the crowded infusatorium and traffic hustled along the main drag of 12th Street in Hood River and people went on their way busy with life in this, the mid-summer of 2015 when all of Oregon seemed to be on fire.

Aint nothing but bad news

I started this post over a month ago but have never been well enough to finish it before something else happens that I want to write about so I am continually playing catch up or editing the post. Rather than completely revamp this one I just want to get it out there and hopefully do a further post quite quickly this time.

It seems as if the holy grail that is remission is slipping beyond my reach unfortunately. I ended my last post, Baby steps to Day 100 on a bit of a cliff hanger as I was awaiting my bone marrow biopsy results. The results were that I had 5 to 10% abnormal plasma cells in my bone marrow. The doctor that gave me the results seemed to think this was good until I pointed out that it was the same result as before the transplant. He then described my disease as stable and said the transplant was probably working and it was early days and I was still on immune suppressant drugs blah blah blah.

I was very gloomy but slightly cheered by the light chain results which showed a reduction from 44 to 29 the second downward result. Not normal range which is up to 19 but not far away. At least that was some good news……until I got the next result a couple of weeks later which was they had shot up to 99 and then the next results two weeks later that they had increased again to 147.  It looks to me like my transplant has failed but my medical team are not using the R word yet.  The boss’s plan is to get me off the immunosuppressant drugs that I have been on before and since the transplant as soon as possible. I am just on cyclosporine now.

Immunosuppressants (anti-rejection drugs), are intended to suppress the function of the donor’s immune system for a long time after the transplant to help reduce graft versus host disease and the risk of graft rejection. I probably would have been tapering down earlier had I not had acute skin GVHD and been on steroids for 4 months. The hope is that as I gradually come off the immunosuppressants I will get some GVHD and also some graft versus disease effect. If that doesn’t work over the next two or three months and my light chains continue to rise quite then I will have to start chemotherapy treatment. Not even 6 months from my transplant and the possibility of being back on treatment looms.

Even though I no longer count the number of relapses any more as I’ve not actually been in remission for sometime now, this news comes with huge disappointment after all I have been through with the transplant and continue to go through.  I’ve not told many people about my latest light chain results as I can’t bear the weight of their disappointment resounding my own. I would like to be able to convey some good news but there seems to have been little of that since my last post especially in the last couple of months.

On a better note, prior to finding out my light chain results, I had enjoyable weekends away visiting friends in Otley and Nottingham and family in Whitley Bay. I felt I was getting stronger and whilst in Nottingham managed a longish walk in Lambley through fields of ripe golden wheat just ready for harvesting on a lovely sunny day with huge puffy cumulus clouds floating around the big blue sky. And the next day,  a gentle cycle ride around Attenborough Nature Reserve alongside the languid river Trent. The first time back in the saddle for quite some time, it has given me the confidence to want to do more. I was feeling good. Now I really need to hold on to that feeling.

IMG_0438                                                    wheat field   IMG_0471

Then a week or so later I got sick and all those good feelings combined with the news of the rise in light chains set off all my anxieties and fears. I started getting temperature spikes every evening and some sort of urinary tract problem which was immensely painful. I was given broad spectrum antibiotics and numerous tests were carried out but the actual type of infection or infections could not be identified which is quite common other than that I had adenovirus ( a common respiratory infection with cough and cold like symptoms but which can be life threatening in post allo patients) yet again. I was told to call the out of hours helpline if my temperature went to 38″ or above. I knew if it did I would end up having to go to A&E and so every evening became a tense game of waiting and watching. The recent loss of yet another friend with Myeloma to sudden pneumonia after his second stem cell transplant played on my mind as did the fact that the last time I had temperature spikes like this was after I relapsed the first time and myeloma was becoming active again. Fortunately I have not had the temperature spikes for the last few weeks and the urinary problem has gone.

I am so bored and tired of it all, there seems to be no end point in sight other than the most feared one. I’m bored of telling everyone my bad results, bored of having infections and being tired all the time and no doubt everyone is bored of hearing about it. People move on with their lives and their daily business  and I feel like I am stuck in a no man’s land with no way out.

When someone asks how are you, how I answer depends on who is asking, the doctors and transplant nurses want to know the gory details of my bodily functions, fine, they like detail and need to know, but when I say I am really tired or my legs ache all the time, they don’t have an answer.  When family and friends ask, I feel it sometimes crosses too many of boundaries to go into detail and there are many responses I could give and sometimes I just don’t know how I am. I am told by my medical team that I am doing really well but it certainly doesn’t feel like that. I think my best and most honest answer at the moment is I’m surviving.

“Does anything in nature despair except man? An animal with a foot caught in a trap does not seem to despair. It is too busy trying to survive. It is all closed in, to a kind of still, intense waiting. Is this a key? Keep busy with survival. Imitate the trees. Learn to lose in order to recover, and remember that nothing stays the same for long, not even pain, psychic pain. Sit it out. Let it all pass. Let it go.”

― May Sarton, Journal of a Solitude

13166

 

 

 

 

 

 

Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

N.B.

On the days when I feel like there is an improvement in my mental capability, I remember that my mobile phone device is full of  blogging material of questionable quality. It’s a responsibility, for I then feel tied down to telling what a lesser person would deem an uninteresting story, whilst simultaneously knowing that I personally, will feel instantly better for sharing and recording, in a way that can never be taken back, whatever the particular shit myeloma has thrown at me during x amount of time between blogs. 

As the earth has continued to rotate, I gave at least managed to hide the evidence of what could form a blog in my iCloud account instead. I guess today is one such day, I have some sort of energy, except, I started writing this blog about ten hours ago and so far, it looks absolutely nothing like I anticipated it would when I started morning. I am fairly certain for example what this will be the only time I mention NHS meals.

Of late, My Myeloma stories are overflowing in my virtual world and my actual mind, and not on my blog. Few people know just how many days I have spent sleeping in a room occupied by strangers or how many times I have been put to bed. There are times I am so confused by it all, that the easiest thing to do to manage it, is to fall asleep and forget it ever happened. I am not even sure what my reality is 100% of the time. I would have no clue at all if I didn’t attempt at least to try to maintain a record. I need a record of this. I want a record of the times I fell asleep mid sentence, or when I canceled plans with my friends and I cried myself to sleep because I saw no end in sight. Hell, I even want a record of my most recent and nightly nightmares. 

Right now, I’m experiencing something new almost daily, and yet I’m not fully documenting it, as I had once documented before, because the something belonging to my sister that entered my body three weeks ago or so (see I do not even know the day) seems to be killing off all my two autos later, surviving, brain cells. 

I have had four weeks of treatment,and of course we are running very close to a certain three year anniversary, so there are no shortages of tales to tell.  I want to tell them but it’s getting close to medication time.

Almost everything I have experienced since my allo commenced is ‘blog newsworthy’ (people write blogs about Stephanie Meyer’s arm hair right?), I just haven’t quite worked out where the energy is to tell you about it. Know I plan to, it might just come later than I actually experienced it.

I used to think that a late blog would be something of a disservice. If a blog was written out of anger for example, like the half written one I found the other morning, time gives me the ability to calm down, to compose myself, and omit the need to rebuild any of those metaphorical bridges that might have been damaged mid rant. On the downside, by waiting, it takes away that raw emotion, the raw emotion heightened by my inability to eat raw foods, and I feel a little bit like I am making things sound easier than they are. I feel like it makes me sound more composed than I am, when I am really not. Not only that, less blogs I dramatically reduces my site’s statistics and my ego likes the notifications. 

If there is one thing I have experienced a lot of since I started frequenting St Bartholomew’s Hospital everyday, it is raw uncensored emotion. Perhaps the fact I am too tired to blog is stopping me from writing something I would regret at a later date. It’s not a lie, it’s just presented a different way. That is what I keep telling myself when I look at my ever growing list of half finished drafts.

I cannot give you any specific examples, for that would really negate the need of this temporary notate bene. Hypothetically, however, I might have written something negative, something along the lines of;

There is still time to jinx this procedure by talking about it now and I most definitely, most adamantly, most whole-life-depends-on-it-do-not-want-to-jinx-this. But and that is a start a sentence with a capital ‘B, But, I do not like Saint Bartholomew’s Hospital. 

And then the hypothetical thought better of it… Like I said, I did not write that down, those thoughts are imagined. If somebody did hypothetically wake up one morning and write that down before they even got up to go to the toilet, I am sure they had good reason for doing so and it wasn’t because she felt the nursing assistance was slightly rude that morning… Hypothetically. Similarly, so too, could something like this have been said, despite me never actually joining any of these words together to make a cohesive sentence;

Every time I have experienced Red Thumping Rage over the last 17 days, I have felt like a teenage brat in great need of a reality check, a slap round the face, a smidgen of gratitude and a slow play replay of the NHS part of the 2012 Olympics opening ceremony.

I could even have imagined images of clutter or me sleeping. Maybe, like I said. I do not know. The negative portrayal of a scientific marvel does not sound like me. 

  
  

I love everything remember? I think my care is great. I love talking about myeloma and myself, and I cannot wait for the time when I have the effort to do it properly, with a proofread. Until that point comes back, we get what we get. 

It’s much like the unpredictable bowel.

EJB x

Like A Bullet From A Gun

WARNING – ?THIS BLOG CONTAINS TALK OF FAECES. HARD, SOFT AND SHAPELESS FAECES.? SO DON’T READ ON IF YOU HAVE A WEAK DISPOSITION. IF YOU DO READ ON, BE THANKFUL I HAVE NOT MENTIONED MORE.*

One of the biggest challenges I am quickly trying to come to terms with is the change the transplant and it’s drugs are going to have and have already had on my toilet going activities. I have spent nearly three years complaining about the impact my previous treatments had upon my bowel. Nay, it is more than that, I had publicity reconciled myself to that fact that unless something was drastically wrong with my body like a course of radiotherapy through my stomach or a hefty dose of Melphalan, I had a life of overly formed, every other day excretion with constipation ahead of me. I understood that and I knew how to manage it. Maybe I had even come to like it. At least it was predictable. Ghostly. ?

Since my release from hospital however, I have been forced to discuss the taboo that is poo, to avoid mass panic and hypochondria. My mass panic and hypochondria. I can feel my body changes and I am on high alert for it and this is outwardly, the biggest change thus far. Gone are the instantly satisfying rabbit pallets, and in with what I do not know what. I could not make my way through the consent or any of the transplant literature without coming across the word ‘diarrhoea’, so the sudden change is not unexpected. It’s just unwanted. And so are the new definitions. 

I could go deep into my concerns and summarise the many conversations I have had with the Medically Trained People about why investing in some nappy rash ointment is a good idea, but I think the conversation below sums up my current dilemma.

  
Such is the importance of stools in this post allo world, I have to inform the Medically Trained People if I have more than two sessions in a single day. Manners would usually dictate not discussing this with anybody else, let alone the out of hours hotline. 

On this subject of toilet, I am beyond cautious. You can tell nurses in particular are used to this sort of talk because my nurse on Monday compared the consistency and colour of her breakfast drink to what I need to be on high alert for, whilst she consumed it. Take that Weetabix. I welcomed the clarity. I have sample jars in my handbag, should there be a sudden need for analysis. I am not actually going anywhere requiring a handbag at the moment, so the fact the jars are still in my handbag are a testament to my current energy levels.

Earlier in the week, I came across the notion of ‘constipation overflow’. If you are interested, that is what I have by the way. Constipation overflow. There is no need for the nappy rash ointment just yet.

The sad truth is, despite my panic last week, I haven’t experienced diarrhoea yet. My friend would be correct with his definition of a ‘loose stool’. For me, this is just another unpleasant experience and it is one that realistically is only going to get worse. Another reason why I must remember my fluids!

The diarrhoea will come and come it will and when it does, I’ll put on my rose tinted spectacles and look in my medicine drawer at my Sainsbury’s own brand suppositories with yearning.

What a depressing thought. 

EJB x

* Humans do Number 1s too, and they are not immune from the allo side effects either. FYI

Catch & Release

It has been seven whole days since I was told that I could go home and indeed, went home, leaving my week stay at St Bart’s but a distant memory. The latter part of that sentence is total bollocks by the way, the schedule of an allogeneic SCT, even if it is just a mini one like mine, makes it next to impossible to pretend that the hospital is just a misty water coloured memory in the corner of my mind. In the seven days I have been home, I have been to St Bart’s twice and in touch with them via phone or email on three other occasions. Essentially, I have been in touch with said hospital every working day since I left it. 

My bloods might be going in the right direction and the medically Trained People are making all the right noises, but did I leave there too soon? How the heck should I know? I spent all of Monday in hospital being tested for bugs and slugs in isolation, because they was a question over my current health.

If you were to speak to me or see me over the last week, you would probably conclude that I did leave too soon.  On Monday, a Medically Trained Person was asking me complex questions like “what was the date of your transplant?” and “what did you do before all of this?”, and I felt like I was taking my French oral GCSE without revision. All I could do was apologise that I could not speak normally. Essentially, you are looking at slow, occasionally drawling slur.

I have had two stem cell transplants before this, they were autos, meaning the cells were my own and the recovery was hard, especially after the first one. All so very hard. Upon discharge after both transplants, I got into a car and went straight back to Mamma Jones’ to be looked after until I felt like I could take a stab at doing it myself. My current treatment regime does not allow for that sort of leisure. It barely allows for sufficient rest.

Upon leaving last Wednesday, I was told that I needed to return on Friday or Saturday and then again on Monday for a Doctor’s appointment, leaving little time to make the four and a half hour round trip journey back to the Fens. And so, I decided that I would stay in my flat, with Housemate to help me until after the appointment on the Monday. There are many things one could say about this decision, but for today at least, as I continue to struggle to find my words, let’s just say it was decision most ‘foolish’. 

I am incapable of looking after myself. I imagine that is a fairly difficult statement for any 32 year old to say, accept I am 31 (the proofread) so I will say it again because I know it is hard for me to say; I am incapable of looking after myself. I am also incapable of planning anything, following a plot of any kind, having a prolonged sleep without experiencing a nightmare and not missing my friends.

I knew these facts last Friday, when with my bags still packed from the hospital sitting in my hallway , I phoned Manma Jones crying because my hair had started to fall out and I needed an hour’s lie down post shower, pre dressing in order to make myself presentable for blood tests. An hour after that I spoke to Big Sister and three hours after that she was at my front door ready to drive me back to the house of Mum Love. That night,  100 miles later, my mother needed to help me into my pyjamas. I then spent almost 23 hours of the next day sleeping. I did something quite similar yesterday, although yesterday, I only ate when food was presented to me at 18:10hrs. The previous day, after nine hours in the hospital, I realised that I had forgotten to eat anything at all. 

In hindsight, thinking that I could look after myself straight after receiving seven days of round the clock care, was just bonkers. Of course I have a Support Network in London led by Housemate and Bruce, but one of them is not anatomically capable of putting me in my pyjamas and the other one would be mentally scarred by the concept. Essentially, London assistance isn’t the same as the one I get with Mummy. The people of London have no reason to stand by me when I scream and shout and let it all out, and if I were being perfectly  honest, I will always try my hardest to avoid too many people seeing me at such a low ebb. A location I have been flirting considerably with this last week. 

I am trying not to overthink the situation because I know there is no turning back now and I also know how fortunate I am to be in this position in the first place. I just wonder that if I am finding this transition so difficult now, how the devil am I going to manage when the real thing gets started in a few weeks time? That’s rhetorical.

Some of you may be fortunate enough to have never been an inpatient in a hospital, so let me tell you that whilst in hospital one has little to no privacy even with the privilege of a private room. The NHS, the wonderful and flawed NHS, pays people to create and deliver a care plan, cook and carry  three questionable meals a day, waters you, takes your blood, check your pulse, breathing and blood pressure, prescribe and deliver the correct drugs at the right time and ensures said drugs are swallowed, they change your bedding and clean your room daily and these are just the people you see. Those tubes of bloods and tubs of my urine had to go somewhere, to somebody to check and the results put on to a computer, even if I wish these tests were done with greater haste. My point is, when one is an inpatient, all they have to do is try not to get too irritated by the lack of privacy. Everything else, even if it is not done to a quality one is quite used to, is done for you. One Sunday, for example, the threshold to my room was crossed 47 times in a 24 hour period; 45 times by Medically Employed People and twice by members of my Suppork Network. I do not know for what reason I documented this, but I believe it validates my next point.

  
The minute I walked out of the East Wing last Wednesday afternoon, all the responsibility for doing all of those listed above bar the things done by those unseen technicians handling my bodily fluids,  fell back on to me. It fell on to a me who continues to be nowhere near capable of doing such things alone. I can barely remember to drink, let alone to prepare the food I do not have the energy to eat, and remember to take the 20 odd pills I am prescribed each day at the correct intervals. And then there is cleaning, I attempted to lint roll my pillows today to remove evidence of my shedding hair and Inhad to do it in four separate sessions.

I went into my treatment with my eyes wide open. I knew it was going to be difficult, but I did not think that I would be doubting my ability to see it through so early on. A friend said to me earlier that I had rhino skin, which I sincerely hope is true for no other reason than all this treatment is actually going to make my skin thinner. Not just metaphorically thinner, but old-lady-be-careful-with-the-plaster-thinner. 

I think I just need a few weeks in bed to rebuild, but that is not afforded to me. 

My transfer to St Bart’s seems to symbolise much more than a change in venue for my treatment; everything seems different and all of it seems out of my control. Even though I may allow myself the occasional daydream that this time next year ‘I could be normal’, I am also a realist. I know that what is still to come is going to be so blooming difficult and I’m struggling to see where I am going to find the strength from to achieve my goals. My treatment feels relentless. This is relentless.

Prior to my discharge last Wednesday, I was asked to read an 79 page leaflet from Anthony Nolan called ‘The Seven Steps: The Next Steps’. I knew the contents of it, but I do not know if on the day I was getting to go home after spending a week in a drug fuelled neutropenic haze, I needed to read “it is important to remember that although you are being sent home from hospital, and an important phase of the transplant process is complete, it will be many months before you are fully recovered”. Define ‘many’.

The treatment is intense and I have not had find time to catch my breath. Reading that leaflet seemed to have cast a spell over my whole week. I do not normally feel so negative. That leaflet basically said, don’t relax yet, for the worst is yet to come. 

EJB x 

Thrushed Out

It breakfast time. A Sunday morning breakfast time no less. I knew this long before somebody physically walked in to my room to to let me know it is breakfast time at all, because of the din they make outside whilst dishing up and not because I have the body clock of somebody permanently located in Beirut and found myself naturally hungry.

Anticipating many people getting round to seeing this later in the day, maybe after they have enjoyed their own Sunday brunches (in my head midday is a far more acceptable time for the first meal on a Sunday than 08:15hrs), can I recommend that you do not view it with or just before food? Consider this a health warning. I do not have the money to be sued. For, on this Sunday morning, I am writing to you about thrush. My very own oral thrush to be precise.

The possibility of something going wrong with one’s gob post chemotherapy is pretty high. So high in fact, there is a reference to it in an episode of Sex and the City and we all know how revered that show once was and therefore it is a fact most accurate, no? None of my three chemotherapies for Transplant Number 2 required ice lollies, but as with all other post IV chemotherapy I have had, as a precaution, I was given mouthwash to use. Crucially and this was my downfall, bar the the First Transplant the Actual First, when I did get some dryness and soreness, giving me the slimiest voice for the radio; I have never experienced the mouth ulcers I understand one can get from their chemotherapy. These mouth ulcers, I understand, are not the cancer equivalent of an unwanted spot by the why, in some cases they can compare with hair loss and are often treated by the morphine. I still find this difficult to be true but it is.

And still, despite knowing what could happen, I became complacent. When I was given the first mouth wash on Day -6, which required mixing two separate salty ointments in a glass,  swooshing the combined fluid around my mouth for 60 seconds and then discard. For four times a day.  I do not know if I suffered some sort of trauma during my childhood, but there is no way I can gurgle anything for more than half a minute in my mouth. When I attempt to do so, my  cheeks feel like they are going to explode and I almost always become so close to gagging that gagging is the reason for me spitting. 

My name is Emma Jane Jones and I am bad at mouthwash. 

Despite my complacency, I thought to myself, make a compromise, do two swooshes a day instead of four. I had enough on my plate. And when I was sick, would that mean I would have to endure it again? I am not sure how many I actually did take but I know there are currently a few boxes of the stuff on my windowsill at home and I have been  showing what as a child I called a ‘Geographical Tongue’ since last Tuesday. Geographical because the fungus grows like a map. God, I used to love showing it off. 

On my transfer from the day ward on Wednesday, it took well over 24 hours to get hold of a mouth wash again, but this time,  I was no longer on salt water. I was on Diffram. Nothing tastes worst than Diffram. Diffram ruins whatever you eat for the rest of your life. I tried to get then to take it back, to revert to the salt water, but I was told it was too late. My mouth had gone too far. Not only am I on the luminous green Diffram four times a day, but I also gave to take four doses of a mouth drop that taste like something you would likely find at the bottom of a certain sort of elderly lady’s handbag. 

It’s all my own doing, however, I know this and I cannot complain.. At the moment it feels like there is a furry film covering my entire mouth, unless I use the Diffram straight after brushing my teeth in which case, it feels like I have salt and wounds and they are becoming one in my mouth. My mouth is surrounded by some dry flaky skin that used to be my lips.

Like I said, I’m not complaining. I should have used all the mouthwash. If I had used it all and result was  the same, I’d be less angry because at least I would know I had done everything I was supposed to. One cannot rewind the clock and if I could, I definitely would not rewind it for this, so I am letting the eight year old me exhibit for a little bit and ask innocently, would you kiss a mouth like this?  

     

A resounding ‘No’? Okay then.

EJB x

Admission

By the time Wednesday morning   came, when I walked onto daycare ward 7A late at 11:15hrs with my suitcase and rucksack , I had spent my morning psyching myself up for my inevitable admittance to the hospital. I  snuggled my goodbyes with Bruce  and then immediately coated myself in antiseptic before doing it again because I still wasn’t quite prepared to not see his face for a few weeks. I even forced myself to watch some daytime TV tripe whilst reading the news on my phone as Bruce breathed into the back of my neck,  because I evidentially have a borderline unhealthy relationship with a dog. “What do you miss most from home Emma, your…?” “Bruce”, in a heartbeat. It was a shame that conversation was with a nursing assistant who took ‘Bruce’ to mean my “handsome husband.” 

 So, yes, it was 11:15hrs and I knew I was ready to go into hospital.

I was ready to go in, but I was not happy about it. I had to employ a fair amount of common sense to the scenario to be ready and argue against myself. Lest not forget that I had been told I was having an outpatient procedure with the chances of admittance being 50-70%. Almost as soon as I stepped into Daycare, seven days earlier, I was told that my admittance was an inevitability.  “As soon as your neutrophils reach 0.5 or below; it’s our policy”, one Medically Trained Person would say or “you have to be in the hostel!”. One Doctor simply said that I was down to do it as an outpatient, so we should try to do it as an outpatient.  No more, no less. He made sense to me. Sort of. So, when he said to me on Wednesday that despite having no fever, cold or flu type symptoms, he was recommending for me to be admitted to the hospital, I did not have the energy to reason back why I should have stayed out.

I can reason about it now of course. My admittance on Wednesday was partly based on a Medically Trained Person’s assessment from the previous day that I was “struggling”, with the then current arrangements. A struggle that could quickly become  a ‘routine’ but for a few simple changes made to the outpatient programme. For example, said patients could see the doctors at roughly the same time they have their bloods taken each day. Maybe they do not need to see a doctor everyday? The blood tests could be taken at the same time everyday to avoid the the need to wait and fill a collection box worth of the stuff before it is deemed financially viable for the lab to run the requested tests.  The biggest adjustment would allow for the patient, once they gave been seen and they require no other treatment that day, to go home. Having to be seen by a nursing assistant, a nurse (usually a sister) and a doctor, daily,  one could theoretically go home before the daily blood results come back in, on the agreement that you would come back if the bloods dictated a need to do so.  In the week I was there, nothing changed in the four hours it took to get my bloods back other than my ability to speak and my need for my bed. On some of the days, especially at the weekend, the SeniorMedically  Trained people were working to day old blood results anyway. 

Shaving off that few hours a day, could have potentially kept me out for a few days longer. The same person who said I was struggling on Tuesday, on Wednesday told me that I seemed like I had much more energy. I think getting home by 12:30hrs the previous day, in my own space had a lot to do with it, and I believe me, I said as much.

Looking tired was not the only reason for my admittance. The staff here are serious scientists and I should not go forgetting it. Some of them, I believe are caring ones at that. The move into a bed that somebody in all probabability, have probably soiled themselves on at least once,  was precautionary measure, I might not have any bugs yet, but my bloods were on a downward pattern with my neutrophils by Wednesday falling to a level of  0.1 for two consequative days. It’s Friday today and despite asking, nobody has given me my blood results since Wednesday. 

Since my arrival at 17:30hrs on Wednesday Night, all I have wanted to do was to sleep and  poop. Sleep and poop. It’s not too much information, it is the painstaking truth, of wanting to not pass out when you stand up sort of pain. Fortunately after six long days, my Movicol kicked in this morning and I sang my Hallelujahs. 

Sleep is harder to quantify. Yesterday I persistently wanted to vomit, which prevented me from an interrupted sleep but it was an abuse that could only be cured by sleep.  I could have easily of slept all day and  I slept all night AND done the same today. I am probably not long off it today. 

I fear that  my admittance, my admittance, to my very own side room no less, is a fraud. Is there a reality show where the winner gets their own room if they are the sickest? I know I am neutropenic, but I knew that it was okay on Tuesday night when I was fine in my own home. My bloods have  flatlined before, in April and I did not get a bug then, I was fine. History could repeat itself. Accept, I wasn’t really fine on Tuesday. I could stay out because I had other people to look after me. No amount of planning ahead made it any easier for me to heat up a frozen baked potato. Big Sister had driven down earlier that day to feed me and repack my hospital bag. Over the weekend, Mamma Jones did pretty much everything for me. I could have stayed at home if I had 24 hour care for an unknown amount of time, but that just is not practical. By Wednesday morning, the short walk from the Little Britain hospital entrance to the day care ward had me gasping.

My worries about being a fraud in my own side room, with a window without curtains and a television where the channel can only changed by turning it up, were proved preposterous this morning when the simple act of getting up to brush my teeth required an hour nap afterwards. After my shower and stool, it was a two hour nap. It would appear among the many things going on inside my body, outwardly, it needs days made of sweet dreams.*

Plus, yesterday, a magical pump was put into my arm that I have to carry everywhere I go (bed and toilet), which automatically dismisses anti sickness medicine. It’s a revelation. I woke up this morning and gulped down a cup of water and I did not want to immediately vomit it back up. I wouldn’t have got that home. 

The truth is, the communication may  only be marginally better than on Daycare, but this place is still the best place for me as much as I could sit here and pick apart all the errors in their systems. What errors you ask? Well, despite my need for twice daily morphine  being one of the first things I mentioned to the ward nurse on Wednesday, who by the way told me off for saying that my back problems were myeloma related and scolded me for not informing her that I was Day+6 post mini allo. On the latter point I just looked dumbfounded and said that I thought that information was a given . I’ll let you into secret,  MST is  a medication I care about a lot, so much so in fact that in the two days I have been here I have  also mentioned it to the pharmacist, the chief ward nurse, every doctor I have seen and any nurse who has given me any drug, and yet they are still claiming I have never been prescribed MST by this hospital. Thank goodness for my secret stash and my own toilet. A communal bathroom just would not be fair on anybody else.

EJB x
* if sweet dreams can be achieved with a minimum of one interruption every four hours, but we all know it is more. I have seen one friend today, five nurses, three nursing assistants, a doctor, two cleaners and one tea lady. At least I think I have.

Baby Steps to Day 100

Picking up from my last post, Hard Graft, I was discharged from what I hoped would be my final stay in hospital on May 7th, day 41 post transplant. I had started an extremely high dose of IV prednisolone, (a corticosteroid similar to Dexamethasone) and was sent home with tablets of 175 mg to try and get my acute skin graft versus host disease under control. Those who have read my post on Dexamethasone, will know that I don’t get on with steroids, having very little of the highs and all of the lows. Although Prednisolone is less harsh than Dex, I soon started experiencing some of the side effects of these steroids such as insomnia which combined with the fatigue I was already experiencing made me feel very wiped out.

11233526_976642785694018_2350667307590468517_n

This was me, Day 43 + transplant when I managed a steroid assisted 20 min walk, baby steps!

Still I did get some of the manic energy that steroids can give you, for me it was being slightly hyper, careless, rushing around, thinking that I’m capable of doing anything, being implusive. I’ve certainly had some incidents which I attribute to being on steroids such as:-

– Breaking my favorite bowls when I was rushing to put them in the cupboard

– Rushing to get back to the car as the time limit for parking was up and falling over just before I get there spilling my shopping.  A kind young woman cyclist stopped and helped me up, gathering my shopping together. no harm done just grazes and bruises.

– Making impulsive purchases without doing sufficient research such as an expensive swing seat for the garden which I saw online which turned out to be totally unsuitable.

– Slicing a banana to put into my porridge but putting it into the cup of tea I was making and the teabag into the porridge!

– Putting my newly acquired electric kettle on the gas hob to heat up.

– More seriously, a fall when I hit my face on the edge of a wheelbarrow when I was rushing up a step from the garden. Fortunately I had no more than cuts and grazes and a bruised upper lip.

– Scraping my car along the metal gate when I was parking it in the driveway, again rushing, an error of judgement, trying to cut corners.

After a couple of weeks of being on steroids, I developed the usual side effects, such as a puffy round face and a double chin, steroid induced diabetes, redistribution of body fat to the stomach and back. After another couple of weeks muscle wasting began to occur in my arms, legs and buttocks. I was also extremely shaky especially my hands, legs and my voice. I looked, sounded and felt like a nervous wreck. A couple of weeks after that, the shaking combined with the progressive muscle wasting and lack of strength in my legs meant I was also having difficulty walking. I started using a walking stick for stability but could not go far, getting up the stairs and moving from standing to sitting was hard.

Mood wise, I was irritable, short tempered and depressed, not really wanting to see anyone. I was also extremely anxious, worrying about everything from whether the transplant would work, whether I would die, whether the infections I had would turn into something more life threatening.

What I described in my post on dexamethasone is exactly the same as my experience on prednisolone.

I am depressed, tired and shaky, mentally and physically, I am easily irritated by myself and others, restless and edgy. Nothing I do or say feels right but I don’t know what would feel right. I find it difficult to be with people because I feel socially inept and lacking in confidence. My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected. I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

As my skin rash was clearing up the prednislone dose started reducing by 25mg weekly and a little more slowly when I got to below 50mg. By Day 97 the 2nd July, I was on 15mg but was still suffering from shakiness and walking problems however I was sleeping better at night which was a big relief

For someone meant to be resting and in recovery my days were busy with applying numerous creams for the skin rashes, taking the medication, attending clinic twice weekly to start with and then weekly, having visitors.  The days shortened and  the health chores or a hospital appointment would be a full days activity with the rest of the day for resting. I had a day and night on call rota of friends in May to help with shopping, lifts and anything else I needed which was great. But in June started the walking difficulties as well.  After the initial flurry of calls,  visitors and offers of help when I came out of hospital died down, I felt quite lonely and forgotten about. People think if y0u’re out of hospital you must be better but all it means after a stem cell transplant is that your neutrophils are above 1 and are stable so you are no longer neutropenic. The hard slog of recovering from an allogeneic transplant  goes on for 6 to 12 months. I was also fairly incommnicado as well due to the steroid effect. I watched a lot of tennis lying on the couch in the afternoon, the French Open, Queens and Wimbledon, what a godsend!

In early July I took my first trip away from the safety net of my own home and went by train to visit my parents for a few days. The train journey from Manchester to Hereford is a pleasant one and for the first time in a good few months I saw proper countryside from the train window, fields of yellow and green, big skies and the rolling Shropshire hills. I felt happy and a little lighter in my heart.

11665626_1008990342459262_1971874502245739802_n

The trip was a good one and miraculously the shakiness disappeared as did the anxiety. Maybe they fuelled each other? I was able to write, type, do up buttons, use a knife and fork properly, hold a glass or a cup and lots of other useful things that we take for granted . It was day 100 post transplant on Sunday 5th July and we celebrated this milestone with a bottle of prosecco although I couldn’t drink any because it tasted disgusting as my sense of taste has been affected by the chemotherapy.

Day 100 is a small milestone in the life of a post allogeneic transplant patient because its the day when symptoms of  GHVD are no longer considered to be acute and any symptoms that start after that are considered chronic. I also had a bone marrow biopsy to determine the level of abnormal cells in my bone marrow on day 97 to see how the transplant was working on the myeloma. I think that the first 100 days have the highest risk of transplant related mortality so I was relieved to have passed that point. By Day 100 I’d had two chimerism tests which showed I was 100% the donor’s blood cells.

This means that I have 100% bone marrow and consequently blood cells of one of the cord bloods. It turned out to be the Australian male cord blood that won over the UK female one. So am I an aussie! Not exactly as whilst my blood is, the rest of my body is still me so I would have different DNA results depending on whether the DNA test was taken from my blood or say my hair (if I had any!). This is good, the other outcomes could be no chimerism or mixed chimerism. Whilst it is a good sign, it does not necessarily mean that the my new new blood cells are recognising my myeloma as foreign and so attacking them and so with some apprehension I awaited the results of the bone marrow biopsy.

More on that in my next update to follow shortly, sorry about the cliffhanger!