Tag Archives: Family

 The Notice Board

Way back in 2013, I spent 11 days of my life in a room of great bleakness. It is difficult to conjure up the mental differences between slight and great bleakness, but  for me it was a room that encompasses everything that was bad with this word. If only it were the interior design of that room that was a problem. The centrepiece, if such a room could be deemed to have a centrepiece that was not its bed on wheels, was a grey notice board with three signs to the right hand side of the board. The biggest sign told me how to wash my hands properly (but I think I moved it there) , the second poster told me if and why I would be eligible for the Patient Transport Service and finally, there was a leaflet, that if you looked really hard at, you could see the 12pt font printed list of all the additional fatty foods I could order from from the canteen due to my not eating right and the neutropenia. I still cannot get over the fact that eating badly is considered to be better for you than a piece of fruit in any situation, but there it is. The PTS sign had some late 90s clipart on in and somebody had definitely used the ‘Tools’ section on MS Word on all the documents.  I hated that notice board. I have also realised that I still hate that notice board. 

The closer I got to April’s transplant, the most frantic I become about ensuring that I would never have to look at that grey notice board again or it’s posters. One of those things could not be achieved because all hospitals all over the land, have posters telling visitors how to wash their hands, and I currently have my sight and can pee, so put two and two together. Developing a board that would be nice to look at became almost integral to my planning. I mentioned in to friends and the importance of of was mentioned in my counselling sessions.

All in all, I think I visited four art gallery shops, the BFI shop, two Boot’s Pharmacists for printing purposes and Amazon. I had mini pegs, string two different styles of pins and just under 15 postcards to accompany my ten or so photographs. I was going to be the best notice board that had ever been nailed to a wall. 

And then, realistically being £20 lighter, it turned out that I did not need it during Transplant Number 1. I am not kidding when I say that I was slightly disappointed by this. I was disappointed that I was not become sick enough to to be admitted to hospital to see my notice board come to fruition. 

Unlike the majority of you folks out there, I realised that I would very soon be given the opportunity that did not involve committing a crime or other institutionalisation, to be in a room with a notice board. I hoped and I waited and I packed my ‘art’ with wanting. Then last Wednesay happened, I was admitted. With breath that was baited, I was taken to Room 10. I knew the word ‘room’ meant I would be in my own room, but in the few short pushes in the wheelchair I closed my eyes and touched EMan’s paw. It worked, and  because when the door opened, I saw not a notice board but a white board. I’m an artist of many a media, and just as soon as I received confirmation from three different Medically Trained People that the board was not there for medicinal reasons, it was go go. I was ready for my Art.  Given the change in background, Mamma Jones had to go out and buy scissors and tape, and given the passing of time, I misplaced a few photographs and postcards. 

In the end, not all of my support network was represented, and I had to explain to far too many people that some of the photos were not of my own (presumably failed) wedding, but it worked. I had directed a little something of my own to make what was a 7 night stay in hospital, that very bit not bearable.

  

And yes, it had fairy lights too.

And double yes, it’s back to being a white board.

EJB x

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Something Borrowed

I am often being told that My Myeloma is not all my own. It would be correct to say that my illness is not all about me, the people around me have suffered effects of the illness just as I have; they’ve metaphorically and actually held my hand, they have lost a drinking mate, they put up with me and fained interest in me describing in minute detail what I have cooked on any given day, they have dealt with my mood swings and there are many, many more things that are too long to list here. 

Very soon (with my fingers crossed), somebody is going to be physically affected by My Myeloma. I will be borrowing something quite exceptional from my Big Sister. It’s beyond exceptional. It’s a minor miracle.  Just as this will be a new experience for me and a potential lifeline, it is a brand new experience for her. I’m not even sure if the word ‘experience’ encompasses the enormity of what she is about to do. I really isn’t just about me anymore…

Two weeks ago, Big Sister travelled to London for her pre transplant tests. From this, among other things, we learned that it is not only me who has to wait around a hospital.
And so, without further waffle, for one time only, I give you Big Sister:

I had known for 33 months that I was a match for my sister and that I carried round her magic medicine and possible cure. Just a few days after Emma’s diagnosis, my tissue was tested to see if I was a match. There was only a 25% chance that I would be, so we were all thrilled when it was confirmed I was a 10/10 match. I can still remember everything about the call from the hospital telling me this, and my phone call to Emma to tell her.

It’s been quite a responsibility carrying the stem cells around, if I had had my way they would have been taken as soon as we knew I was a match. I even carry around an ICE card in the event of an accident which states I am a living donor and they meant let me die until my stem cells have been harvested.

A few months ago, we were told I would need a medical before I donated. After months of asking, my medical for stem cell donation was arranged for the 11 June. I was anxious to say the least. What if, after all this time, Emma’s own stem cell transplants and our hopes, I couldn’t donate?
I caught the 7:21 train to London, sat in my reserved seat and tried to revise for my upcoming exams. Instead, all I could do was listen to the moron diagonally opposite me, try desperately hard to make conversation with the barrister next to him. Among the many conversation starters he came up with was ‘we all have cancer you know?’ I sat there wondering if I should say anything about his rather random and insensitive comment; in the end I figured my thoughts would be wasted as he was a proper know all. 
I hopped out the train and grabbed a taxi to St Barts. I was there a few minutes before my appointment. I was weighed and measured and then sent to see a consultant. The consultant was nice and cheery, he told me a load of things I already knew and completed a questionnaire about my health. I signed a consent form, the same one I give women at the hospital I am training at, before they have a caesarean, except this time ‘donate stem cells’ was written in the blank space.
Next, I went to meet my CNS, my very own CNS, how about that? She talked to me about dates, and we agreed that the harvest would start on the 22 July. I assumed this meant I had passed the medical, although no one said. My CNS then sent me for an ECG, and some blood tests.
I wandered round the huge hospital to where I was told I would get my ECG, only to be told the department had recently moved and I now needed to be at the other end of the hospital….so off I went. I was called in immediately, it took about 5 minutes to stick on all the sensor thingies and then just a minute to do the trace. I was handed the trace and told to take it back to the CNS. I was a bit reluctant to hand the ECG trace over before I knew it was ok, so I quickly Googled what a good trace looked like. Mine was similar, what a relief, so I handed it over.
Next it was time to take ‘some’ blood samples. Off I went, back to the main building and up to the 6th floor. I went and sat in a bay where other people were having chemo. A nurse came and started taking out the empty sample bottles. Now I am not going to lie, I hate needles, I always have and always will. Trying desperately hard not to embarrass myself in front of these poorly people that have to under go needles frequently, I let her take my blood…..all 16 bottles.

  
Finally, I was sent to the pharmacy to get my G-CSF injections. I waited over an hour, but they never appeared. It turns out that the prescription was wrong. As a result, I couldn’t meet Emma for lunch and Emma will now need to collect my injections for me at some point.

A week or so later, I had a text from my CNS to say all my blood tests were ok. The next day, I received a letter in the post from St Barts. My heart pounded a bit as I opened it, luckily it was a confirmation to my GP that I was suitable to donate, requesting they do check up on me following the harvest.

  
So after all that, and after 33 months, on the 18 July, I will start to inject myself with G-CSF, the growth hormone to make more stem cells. I’m not entirely sure how I will do this, but I will cross that bridge at the time. On the 21 July, I will go to St Barts for my pre-op tests. On the 22 July, I will have my stem cells harvested. They will be cleaned up and given straight to Emma. 
It all sounds quite simple. If simple means needles, stem cells and giving your little sister a lifeline. 

Can it really, finally, be happening?

EJB x




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Subject: Me, Me, Me

The following is an email I sent to some of the Support Network in preparation for today and beyond. In some of this, I will repeat things that I have written previously, but in my current, highly rational state, I think this is a good indication of where I am, and what I need to come. Why send a private email you ask? Well, firstly it saves energy, and secondly, I hope to dispel an ideas that my medical plan is the same as having a wort removed… Mind you, until you have pooped your pants and hallucinated green goblins bursting out your stomach because you are in so much pain, it’s all relative isn’t it? 

Please note, some of the names have been removed because this really is, all about me.

From: Emma Jane Bones

To: Friends

Sent: In the early hours of 29 March 2015

Dear All,

Hello. As I have had the last minute go ahead from the powers that be, I thought it was time for me to send an email outlining just what the hell is going to happen. 

Fear not dear friends, it is not an emotional email, just one layered with practical points about how my year is going to roll from now on. If some of that sounds emotional or distressing, it was not my intention. BLANK, The Counsellor suggested me levelling expectations. I think this is levelling expectations.

I know that this may seem self indulgent, but the transplant clock is a ticking. Plus, although it will not be emotional for you, it is an emotional subject for me, so it is easier for me to write it down rather than to say it. Secondly, I hope it’ll save me from telling people the same thing over and over again, forgetting who I have said it to, and thus bore you into silence.

Before I get going, I would like to thank those of you who have organised and/or participated in recent activities. To everybody else who I have not been able to see, I thank you for still continuing to care. It’s all very much appreciated. More generally, I had hoped I would have been freer from this for longer, but that was not the plan, so I thank you for still being around.

I am going to try to keep this brief, but who am I kidding, I can never be that brief. 

The Plan

1 April
I will go to UCH on Wednesday morning, when all being well, I will be given the high dose chemo. I will initially be staying in ambulatory care, also known as the hotel, with my mother. 

Thursday is known as ‘Day 0’ in the biz and this is the day I have the transplant. 

3 April onwards
I will be in Ambi Care until the poop starts or my temperature hits 38, or I show any other type of illness. There is no real way of knowing how long this will take, last time I was out for 5 days, but that means nothing.

Once I am sick, I will move into the tower on the 13th or 16th floor.  They say expect to be in for 3-4 weeks, but last time I was in for 10 days… I know which option I would prefer. 

My hair will go FYI. My feelings towards this are surprising. I did not anticipate this much dread, but the dread is there. I’ll be shaving it off after I have had the chemotherapy, maybe on Friday. If anybody fancies doing this for me, let me know? I have George’s clippers.

On Discharge
Once I am well enough to go home, I will be heading back to BLANK until I am well enough to reasonably look after myself. I say ‘look after myself’, what I actually mean is able to return to the flat and only rely on BLANK for a few things instead of everything.

During the time between transplants, I doubt I will be able to do that much. Afternoon trips to the Picturehouse might be doable. Definitely/maybe no alcohol. As with everything else, we will just have to see.

For those of you with birthdays during this time, I will endeavour to attend, but do not hold it against me if I do not. 

June/July
I will go to St Bart’s for the second transplant. Initially I will be an outpatient, there is a chance I will remain one for the whole procedure, the odds they gave me for this are 50/50. 

Don’t let this outpatient nonsense fool you. Whilst the risk of a particular negative result is no longer 40%, it is still high. Those figures are not based on the first few weeks after the cells are introduced, it is based on the months (and I mean months) after and whether my body decides to completely reject my sister’s cells. If this happens, it happens, but fingers crossed it will not. Best to say that now, so you have realistic expectations. It may not be an operation, but it’s a serious thing. 

I have been told that the best case scenario post number 2 will be rashes and gut problems, with a side of fatigue. I’m hoping to go back to being a size 16. Anecdotally, the fatigue is something I have not yet experienced. I am afraid of this the most. I am afraid of only having the energy to lie in bed for months on end and become bitter. I do not want to become bitter.

I’ll hammer this point home, the recovery is going to be long. Real long.  The guidance says no international travel for two years, but I think this must be wrong. 

Hospital Visits for Transplant 1

Whilst I am in the hotel, I will be accompanied by my mum or sister. On Wednesday, I imagine I’ll be too tired when it is all done and I’ll just want my bed, so no visitors that day unless you want to watch me suck ice cubes during the day. 

Thereafter, I will be able to receive and I will need visitors.

As I’ll need my mother a great deal throughout the year, I have said she does not need to be around too much whilst I am in hospital. This will mean that I will need visitors, because being stuck in a room for 10 days (or more) is extremely isolating. 

Here is the problem, I may well not have the brain capacity to schedule your visits. At the start, I’ll be better at it, but when the pooing and vomiting starts, I’ll probably find texting back stressful. I’m not sure how to resolve this issue, other than just ask you to come and hope I’ll be free. Or you can organise it amongst yourselves. Not practical I know, but I’m just anticipating the worst case scenario.

There are no visiting hours, although the mornings are when the doctors do their rounds and when the cleaners come. You probably do not want to see them.

It sounds obvious, but if you feel unwell, do not come. I will have no immune system. Don’t buy me anything.

In between visits, feel free to keep in contact, I’ll be tired and might not always reply right away, but text messages are always fun.

You

After my release, I will be suffering from fatigue. It’s a word you will get bored of. The fatigue, as I said earlier, will get worse after the second transplant. I am not exaggerating when I say that getting over the last transplant’s fatigue was the hardest thing I have ever done. It makes it quite difficult to trust my emotions.


As such, it would be prudent for me to say that there will be times when I become depressed. I hope not many, but it will happen and that will make me question pretty everything and everyone. In turn, this may make me appear like an irrational and mean bitch. All I can say to this is please bear with me, and try not to give up on me. I have an aromatherapy stick this time for relaxation, and you never know, it might just be what I need to keep it all together. If it is not, I will  apologise to you in advance.

Not being able to get out of bed, for long periods of time, it is easy to feel forgotten and lonely. So, I’ll need one sided friendships for a while. Colin will need a break sometimes too and I may need people to cook for me and other things. All this will require me learning to ask for help, or you could just be forceful. That will be tough on you, because I will become quite dull.

My life will probably be quite myeloma obsessed. Let me reassure you now, this will not be because I like to be the centre of attention or talk about myself. I am always more than happy and willing to talk about anything else. You just have to start that anything, for, I will not know of anything else unless you want me to tell you what is happening on my Facebook feed.

Realistically, I will not be as well as I am now, until the new year. I might be pleasantly surprised, but the odds for that, are not in my favour.

Other

Last time I had a transplant, I sent text updates for major transplant developments. If you wish to receive these again, do let me know.

So, all that is left to say is thank you. I cannot emphasise this enough, but you are all appreciated. I know I have upset people in the past for not showing or saying this enough, but, most the time I think I have. I’m quite forgetful don’t you know.

Emma 

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Constructive Criticism

A few weeks ago, I found myself leaving my flat around 12:30hrs for a hospital appointment. Such is my norm, my chosen mode of transport to achieve this was a taxi. Unlike other people, I rather enjoy the occasional natter with a taxi driver. I should be clear that this is not because I am starved of stimulating conversation, it is just because I like to talk. So, I go in the taxi and said something like “oh, it’s a nice day isn’t it?”. I did this for two reasons, the first is because I am British, and the second was because it was a nice day and it was the first time that day I had seen the shining sun. It turns out, that making these comments was a mistake.

It was a mistake because the driver then spent the next 20 minutes or so telling me that I needed to be more active. Not only did I need to be more active, but I needed to ensure that I was leaving my flat before 12:30hrs everyday and that it was crucial that I continued to keep my mind stimulated just as much as I keep body active. I know, I know, I am missing some key parts of the conversation in which I told him I had cancer. However, I think asking to go to the Macmillan Cancer Centre in the middle of a week day, let the cat out of the bag.

I can take a fair amount of criticism. I am pretty sure that in my early twenties, I wasn’t always the lovely human being you see before you today, so I endured the odd bit of unsolicited insight into my negative personality traits. A lifetime of being overweight, also prepares one for having a thick skin against people who feel like they would know better than me on how I best live my life. These days, in the days of the head tilt and sympathy, criticism levied at me, at least to my face, is surprisingly rare. If I do receive any, I usually let it float over my head like I do with the majority of negative thoughts.

That said, there is one subject, a rather broad subject, that I think nobody has a right to comment on, and that is how I manage My Myeloma. I guess, given the percentage of my life this takes up, I also do not appreciate any critiques on how I currently choose to live my life in order to make it through my treatment.

The taxi driver did not know all of this, it was the first time we had met after all, but what he believed to be a throwaway conversation with a cancer sufferer, I found to be deeply insulting and naive. Above anything though, his comments just really, really pissed me off. I know they pissed me off because I am still thinking about them today and they made me think of other similar comments that have pissed me off since I was diagnosed. It has also made any similar comments made to me since, fist clenchingly annoying. It has all led me to believe that there is one golden rule of people dealing with me and My Myeloma; unless you have something positive like ‘wow, I just do not know how you do it’, or something with concern like ‘how are you doing?’; do not say anything about how you think I should manage my myeloma. You are not me, and as much as I recognise the care the comments stem from, nobody but me lives with it 24 hours a day. Everyday.

Although I sound particularly dogmatic on the subject, it is not because I am ungrateful that people are concerned about me enough to say things that they think will benefit me in my quest to survive. I am not ungrateful. I like to know that people care. The truth is, there is nothing people can constructively say to me about myeloma, or say that is just a blatant criticism of my behaviour, that I have not thought myself at least ten times over and tortured myself at least ten times over in the process. You can be damned sure that the arguments I have in my head about how I should behave, are far worse then anything anybody can say to my face. After more than two years, I have learnt that managing my own criticisms is hard enough and I do not need others dredging them up out of their own altruism, care or in the odd case, meanness.

On one side of the coin, I give myself a pretty rough time about how long I stay in bed, how little I spend in bed, how long I stay in the flat and whether it is sensible to leave the flat. On the other side of the coin, I pride myself on how, despite my many misgivings about the length of time I spend in bed and in my flat, I still manage to get out of bed everyday. In getting out of bed everyday, I also pride myself on how I still manage to hold my head high when I need to stay in bed.

The pride I have in my own behaviour means that any comment or criticism does not just feel like a mere comment or criticism. I feel like it is somebody attacking my core being, something they may have an understanding of, but they will never truly understand because they are not me. In this, I include fellow myeloma sufferers who overtime, have told me how I should feel when I do not feel that way. Once, somebody told me the side effects I was experiencing post multiple Velcade injections could not be happening because they did not experience them. We are not the same. I also include friends, one of whom, I discovered put me through a rather difficult time during my remission because they felt that I had not expressed my gratitude enough for their kindness in my blog. Trust me, for a few minutes on most days I worry that I will never be able to show enough gratitude for the way the majority of my Support Network have been there for me. I did not need the silent treatment when I was trying to move on and up in the real world, to realise this. It set me back.

The most irritating comment is being told to get out of bed or off the sofa and that doing so will make me feel better. It’s not a malicious comment of course, but it is one that seems to negate the work I have done to allow myself to stay in bed. The work I have done to know when I need to stay in bed. I would not have been able to say this a year ago, but I know now that when I stay in bed, it is because I physically need to stay in bed. It is not because I am depressed and it is not because I am lazy. I am talking a lot of drugs and I endure daily back pain.

I am strong, but I am not infallible.

Everybody is always going to have an opinion on me and my illness. Selfishly, when these opinions go against my own, I take offence. I bruise from it and I have been battered enough by My Myeloma to sit at home worrying that others think that they could manage this better than I do. The comments make me doubt myself and they make me doubt how far I have come from the naive 28 year old in the hospital bed on that fateful Friday afternoon.

And do you want to know how far I have come? Right now, I am able to watch a medical television melodrama. I am able to think about my future good and bad and I am able to detach from it when I need to. My next sentence makes no sense, but I did this by myself. I did this all by myself, just with a teeny bit of help and love from those around me.

It’s My Myeloma after all.

If you must criticise something, tell me I need a hair cut or do what Mamma Jones did the other day and tell me that I need to trim my nasal hair. I can take that. Just.

EJB x

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Selfishness

Myeloma stands accused of being selfish. It stands accused because it is selfish. No trial needed. Myeloma dominates and myeloma leads. I can sit here and tell you that it does not do those things, but I would lying. I have been accused of being selfish because of My Myeloma. I have also been accused of enjoying the attention I get from myeloma and enjoying it to the detriment of others. Unlike my statement about myeloma, which is a bloodsucking selfish bastard with a low public profile, I do not think the same can be said for me even if I am tooting my own delightful horn.

I think we are all, to some extent, selfish. I do not think selfishness necessarily makes a person horrid, and with that, I justify my existence.

People are always going to concern themselves with issues of self, no matter how much time they concern themselves with the lives of others. Before I was diagnosed, I estimate that there was a 50/50 split in terms of how much I loathed myself and how much I loved others. In treatment, post my diagnosis, that even split was unattainable, and I concentrated my thoughts on myself more and more. I wish I had the capacity to support others the way I know I am capable, but in treatment, I was not capable. Of course some of the reciprocal arrangement that is friendship remained, just, I deduce, to a lesser degree. Myeloma did not make me wholly incapable of multiple thought, it just makes it difficult to execute them.

I regret this. I had to prioritise. I am somewhat ashamed to admit it, but I concluded that my need was greater than others. I developed a crude, patented formula, in which I multiplied tales of woe and illness with the chances of remedy then divided it against personality, and in almost every occasion, I was top of the table. I love my Support Network, and I tried to maintain balanced friendships, but inevitably, some things went a little skew-whiff.

I am not saying that myeloma is the worst thing that can happen to somebody, but it is pretty high up there on the scale of awful things and that required most of my attention. I may sound entitled, I do not mean to and nor do I wish to be, I wish that I did not need to gather so much of my attention on myself, but that is the way it is. There was a time when myeloma dominated everything. I understand why people would get frustrated by it, I did do, and unlike everybody else, I had and have no respite.

There have been occasions when my formula has assessed that somebody else’s need for understanding, thought and love was greater than my own. Like My Myeloma, I see that the pain of what they have gone through or are currently have to go through, which cannot be taken away or absorbed. It’s excruciating. It is easy for me to forgot that other people experience grief too and unlike many things in life, there is no immediate remedy. I wish that the world was not like that. I imagine that for them whatever it is they are going through, becomes all consuming and everything that happens in between is play acting, despite whatever will there is for it to be real. In these circumstances, I hope I can show what a friend needs to show.

I have devoted a lot of thought recently to my selfishness and by default, how this has influenced the way people view me. On the one hand, I do have less sympathy for others, on the other hand, I empathise more with others. I believe the latter makes up for any deficiency gained from the former. I love more and I care more. I might not show it correctly, my myeloma may make it impossible for me to show it, but I do. My life is too short for anything else.

Myeloma has many downsides, many ways in which go ruin a life. When jt comes go my empathy, and how I care for others, I think myeloma has made me a better person. It made me prioritise. Of course view is somewhat one sided, I’m thinking about my self.

EJB x

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2013

Can I really do a review of 2013 two weeks late? The answer is yes, I can do whatever I want to baby, because I ain’t lost.

And so, here we are, 2013 has ended. It came to an end a while ago, I have been reflecting that much about it. It was quite something wasn’t it? 2013. Just insert whatever cliche you want, because that is what I am going to do. For me, 2013 was unequivocally and irreversibly the hardest year of my life. I did not not expect it to be. At the start of 2013, I thought that 2012 was going to remain the hardest year to date, but I was wrong, that honour, at least for the time being, befalls 2013.

Congratulations 2013. You shook me to my core.

2013 was full of many downs until November came and we had a reasonably big and unexpected, up of rather gargantuan proportions. That was nice, except I still do not believe it. The build up to November though, all that trial and all that torment, all those downs, have meant one thing, and one thing only, and that is, that 2013 changed me. The same person who woke up in the early hours of 1 January 2013 sober and maudlin with a paraprotein of 19, is not the same as the person who saw it out drunk with a paraprotein of six, 14 days ago. I am yet to discover whether this change is for the better. Either way, it is what it is.

In review then, I now give you My Myeloma driven, 2013.

January proved to be rather fun, because after the first few days, for the first time in a long time, I was allowed to be drug free. I had just finished PADIMAC, I was planning for my transplant, and I was feeling more positive than I had felt for a live long while, for I had no crash week to anticipate or factor in to my schedule. It also snowed and that my friends, made me sad.

In February, I was heading full steam ahead towards March’s transplant. I was experiencing new drugs and I was getting ready for the chapter to come to an end. It was exciting and nerve wracking all at the same time, all I knew was that I was ready for my autograft. In this month, I also had a little ill advised bump’n’grind on Valentine’s Day, which then caused several months of torment and anguish, because it was a deed done out of myeloma pity and trust me when I say that my self esteem did not like that one iota. In addition to that blip in human interaction, I also argued with a friend and that was not pleasant at all.

March was the month that changed the way I view My Myeloma. With March came the Bad Day and with that news, went my positivity and I do not believe it has come back to me yet. I hated March. In addition to having to put my life on hold for a another four months, I lost my hair and I started a new course of treatment. I really did hate March.

April and May seem to roll into the same months for me, they were dominated by my medication, the steroids and progressively worse fatigue caused by the thalidomide. Oh, it was marvellous. Uncertainty most certainly featured in every waking thought I had during these months too, bar the one day at work I had where I managed to complete a day without thinking about the fact I had myeloma. One day out if 365, that’s pretty good going. In May, on May 24 to be precise, I had a birthday. My first birthday with myeloma and this was a bittersweet affair, despite all the efforts from those around me.

June again was full of uncertainty until it was no longer uncertain and I was given a date for my transplant and the uncertainty was replaced with fear that the Medically Trained People were going to take it away again. March was their fault obviously and it was not the fault of My Myeloma and its excrement, paraprotein. So, for the last days of June into July, I had my fingers permanently crossed.

In July, my fingers were still crossed until I walked into Ambi Care on the 17 July. Despite the fear of it being taken away, I also experienced a very real fear of it happening to quickly. For a fortnight before I went into hospital, I felt that the transplant I had been planning for months and months on end was coming round far too quickly and I remember feeling unprepared. I also, in the weeks leading up to the 17 July, milked the fact I was having a transplant dry. I forced people to have fun with me and fun was had. Essentially then, for the first fortnight of July, I used emotional blackmail to make people be nice to me. It was a nice two weeks. I then went into hospital, had a little bit of chemo, had some stem cells given back to me and pooed by pants. I took a photograph of the incident and I am still to share it with you. Apparently, sharing it would be inappropriate.

Oh and I should probably add that Housemate became a Dad in July and for that little bundle of fur, I would become very grateful.

In August my long, underestimated road to recovery started and for me, this is when I felt myself begin to unravel. From August, my life stopped being all about treatment and it became about living, but it was not a living that I had anticipated before I had myeloma and nor was it a living that I had imagined all those times I lay in my bed dreaming of happier times. I also discovered in that month of being looked after by Mamma Jones and Big Sister, that my Support Network was realistically not capable of doing everything I wanted it to; it was not an easy realisation to have. It hurt, it gave me forehead ache and I am still trying to understand the revelation.

In September I moved back to London and attempted to rebuild my life, and slowly, very, very slowly, get my energy back. I happened to do that in October, November and December and I am still working on it. My improvement post transplant has been much slower than I ever anticipated. Sure, in those autumnal months, I learnt to leave the flat for longer than four hours, but it is not easy. Not easy is an understatement.

Although November was undeniably good, with the small thing I like to call Remission, I discovered that I simply could not rewind to my life before and I have struggled daily with that since. It makes it impossible to remember exactly what I have done since 7 November, because the overriding thought is that living with this is hard. I did not have that in 2012.

On a positive note, I have begun to socialise more, not very well, but I have. I was able to do the goddamn London Film Festival, which made me cry, laugh and sleep. It was, quite simply, my favourite 12 days of the year. Make of that what you will.

December is my recent history and it essentially was a month of trial and error, resulting in a snotty noise and an overwhelming desire to sleep. The latter was something of a theme for me in 2013, just ask my broken bed.

As for my appearance in 2013, well, that changed too. I lost weight, put on weight, lost hair, grew hair, lost it again and then gained a curly mop. I grew a beard. I did not wear any lipstick for a six week period. Needless to say all of this added up to some knocked confidence and the avoidance of mirrors.

This was my 2013. I feel bruised and battered from it, and as I repeat what I said when I started, I feel like I lost part of myself over those 12 months. I like to think that it is not lost forever like one of my hats, just waiting to be found in a drawer or at the bottom of my wardrobe when I can be bothered.

Here’s to a brighter 2014. I long for a brighter 2014. I have a cylinder to overflow.

Oh, I should probably add that as much as I dislike them in their role as the bearer of bad news, the Medically Trained People, specifically those in Haematology, were as marvellous as I have come to expect and for that they have my gratitude. For sure.

EJB x

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A Christmas Message

Ho Ho Ho. Can I get an echo? Yes I can, Ho Ho Ho. Merry Christmas.

Today is Christmas Day. Today is my second Christmas Day with My Myeloma, and although I am still sitting in the dark, in my clammy, night sweat riddled pyjamas, with a sore throat, a blocked nose, maybe moderately depressed, having had a broken night’s sleep, I can say hands down, that I feel much better than I did 365 days ago. I will need to nap later, and the reason for that is a whole other blog, but I do not anticipate any steroid crashing today, one needs to be on steroids for that, and so, I know that this year will be better. I just reread my blogs from last year, and I know it will be better. That said, myeloma still has the ability to make Christmas feel important. It is important for everybody of course, but in my strange, abnormally large head, myeloma brings pressure at Christmas. Pressure and bad thoughts.

For me, like the birthday now, Christmas Day, is a countdown in reverse, always accompanied with the thought of ‘how many of these do I have left? It’s my second now, so if the stats are right, I get eight more, right?’ I try not to believe that of course. I do not think I have ever done anything really wrong to warrant the naughty list, and Santa Claus is not a cruel man. The stats are wrong. At least, that is what I tell myself to get through the day. Nobody wants Christmas to be a myeloma downer. Myeloma has taken away enough already. Christmas should be FUN. MEGA FUN. Myeloma does take away some of my pre-Christmas fun, because in the back of my head, in addition to feeling the presence of the grim reaper, I know that something could go wrong with my body, this ruining Christmas for everybody on this universe, so I have spent much of the last month begging my body to get me to the 25th December without any glitches. I managed to get today with antibiotics, but that is better than the alternatives my mind can create. It is also better than the alternatives that happen to people with myeloma all over this fair land. Christmas is for loved ones and hospital love is not quite the same as family love is it?

And so, because I have a lot to be thankful for on this Christmas + 2, what with being well and in remission and all, I am going to attempt to not think about myeloma again today. It has had its time in my head today. After all, what is the point of worrying about what is going to happen to tomorrow, today, especially when today is the day after the night before when Santa Claus came down the chimney. I am going the rest of the day thinking about my family, the immediate mostly, all the Telfer’s or whatever they are called now in the North, the Jones’s in the South, my friends all over the place, my presents and my gut. That sounds like a good day.

Christmas is about the good sort of sentimentality, not the bad sort.

Must dash now, I have children waiting. So, without further adieu, I wish you all a very merry and healthy Christmas.

Much love and all that jazz,
EJBx

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Acknowledgements

WARNING – This blog contains some uncharacteristic musings

I have forgotten to do something. It is not that I have forgotten to do something exactly, it’s just that I do not know how to do it. I want and I think I need to express my gratitude to my people for carrying me through the last 15 months. I know that I would not have been able to get to this current point, this remission, if it were not for the many people working away behind the scenes. It sounds trite perhaps, to say that I would not have been able to do it were it not for the support I have received, but it is true. In case you were wondering, this is going to get overly sentimental. Get a bucket.. Sure, I am
frequently pleased when people congratulate me on my strength and stoicism, but that it a facade. Any face I put on, or actual strength I have, derives from the people I have had and still have around. I have doubted it, and I have doubted them, make no mistake of that, but it is true. I imagine it is a feeling similar to the feeling the historical character Harry Potter had when he fought the evil Voldemort with his dead loved ones standing by his side. Like that, only my loved ones are not dead.

It does feel somewhat odd thanking people for something that is not over. I just have a time out, and I will continue to struggle and wobble over the myeloma mountains. I will have to continue to draw strength and perspective from those around me for as long as I have left, because the myeloma makes it so. This acknowledgement then, really is just a timely reminder to say that I still need you; it is attention seeking really.

I would be the first person to admit that My Myeloma has not been an easy ride for those around me. It has been hard and at times, traumatic. In case you were wondering, this may include exaggerations too. As much as I tried not to make it so, My Myeloma became the focus of all my relationships. One friend told me recently that people, like me, needed a break from myeloma and by that, they occasionally needed a break from me because the myeloma dominated so much, for so long. Now, I might not whole heartedly agree with the logic, but I understand the sentiment. Myeloma is tiresome. Supporting a weak, depressed sick person, or patient if you must, is tiresome and it is not always fun. I like being self obsessed more than the next person, but not to this degree. People have been there for me, more than I have them and this upsets me greatly. I really did try to make this not the case, but it was inevitable. I need to acknowledge in a forum other than in my head, that My Myeloma has made me less of the friend I wish I could be.

And yet, I look up now, and people are still here and for the most part, I really do not know why. My relationships may have changed, but there is not one person who was here 16 months ago, who is not here now. In fact, I feel like I have picked up a few extras along the way. Say what you want about myeloma and I feel like I have said everything, it really does bring people together. It also makes you feel as lonely as hell, but this is a nice blog. I look at a lot of people now and my internal monologue says slushy things that only I should hear, whilst I fight a desire to hug them tightly.

I do not know how to thank people for sticking by me. Prior to My Myeloma, I rarely expressed my feelings towards others, in anyway but my presence. I believed that my loyalty was enough for my friendships to endure. It may still be enough now, but My Myeloma has made me lose perspective. Medals would be too much, right? This blog is too much, right?
I considered thanking people individually, but then I remembered that although I have a cancer with no cure, doing so, telling people individually what they mean to me, would embarrass me, and I dare say it would embarrass them too, and I really should not be drinking the amount of alcohol required to lubricate those conversations. I thought about listing them on here, explaining the individual role they have had in making me get out of bed, but that too would not have worked, because inevitably I would miss people out or over thank one person and not another, thus causing an argument over something as pure as a Forever Friends bear, and as one friend pointed out at some point during this journey, friendship with My Myeloma and me is not competition.

At times during my first chapter I have felt let down, misunderstood and alone; and I have been confused by absence and silences. Now, however, the overwhelming feelings towards my family and friends are positive ones. I truly could not have done it without you, from your grand gestures to daily presence. So, please enjoy, my thank you;

I thank you for all of it. I thank you for not running away when my heart turned from stone. I thank you for phoning me every day and being my second mum. I thank you for being my mum. I thank you for understanding the medicine. I thank you for letting me be mean to you. I thank you for the sacrifices you have made. I thank you for always knowing exactly the right thing to say, and also for not knowing what to say. I thank you for waking me up every morning and being a pillar of strength for me even if you did not know that is what you were doing. I thank you for telling me when I was being an arse and shouting at me when I do not listen. I thank you for being normal and treating me normally. I thank you for coming to the hospital with me for treatment or waiting with me for my transport. I thank you for loyalty. I thank you for buying me milk and walking it to my flat. I thank you for offering to do anything. I thank you for force feeding me soup. I also thank you for all the cooked dinners. I thank you for all the books you gave me, that I have still not been able to read. I thank you for not letting a bit of myeloma and chemotherapy stop you from telling me off for over filling the bin. I thank you for playing Words With Friends everyday. I thank you for taking my mind off it. I thank you for taking me out. I thank you for always coming to me and sitting on my sofa for hours. I thank you for cheering me up. I thank you for my beautiful television. I thank you for all the legally acquired viewing. I thank you for showing me that family is important and I thank you for making your presence known. I thank you for continuing to ring despite me never answering my phone or returning your call. I thank you for reading the blog. I thank you for changing my bedding and hoovering my room. I thank you for taking me to the football. I thank you for letting me be petty. I thank you for listening. I thank you for acting as a protective barrier in a crowd. I thank you for everything and anything I may have missed above.

Most of all, I just want to thank you for being there, in all your different guises, in all your different ways. I also, most vehemently, ask you not to go anywhere. In case you were in any doubt.

I am very pleased to have met you.

Now, if you excuse me, I think I have to vomit.

EJB x

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Share and Care

The land post autograft transplant, when one went into it with a paraprotein level of 20, is a strange, uncomfortable and rather traumatic one. I doubt that unless you have gone through it yourself, you are never going to really understand what it is like. I know, beyond any shadow of a doubt, that unless you are me, which is scientifically impossible, you would truly know what this period is like for me.

I spent eleven months working towards my transplant. Living within each cycle of treatment and managing my new treatment after the Bad Day, because I was working towards my transplant. The transplant was the goal, and prior to it, I had to get through my treatments, week by week. Now, in the post transplant haze, I am left waiting for something and I am not sure yet, what that something is. I have until November to wait. In November I will find out whether my next step is to do nothing, go back on to VDT/VTD or have another transplant involving a donor stem cell. I do not know what will influence which.

Right now, I do not have an outlook post November. I do not know what my life is going to look like post November. I still cannot plan a bloody holiday. Working towards my transplant, I expected normality after it, but reality says that this might not be the case. I knew it would not be a magic plaster, but it has not stopped me from being disappointed with the reality. I have known this for a while, but right now, it is finally sinking in that this still might not be over, this volume is going to be a tomb and there is a chance that this will go on and on and on, until I stop. When anybody tells me something different, like all will be well in a year, I want to scream at them and say that we don’t know that yet and let’s face it, I want them to shut up. I don’t do that of course, I put on a brave face and carry on until I am alone.

This period that I am in, feels different to anything I have felt before. I am acutely aware of everything that is bad about myeloma, not that there is anything good about it mind. I want to say so many things about how I feel, about my fears, but within My Network, with the exception of my family, I have not said anything because all the way through this marvellous journey, I have been strong and I have been stoic. I may have had the occasional blip, but, mostly, I have carried on with what I had to do at the time and I have never broken down. I have been told by the people employed by a charity to support people like me, that it is usual at this time, that people begin to struggle with the status quo and fret about the future. I am doing all of that, but it is isolating because nobody understands it. I am expected to be stronger. I am expected to be rational. Somebody said to me the other day that I am a victim of my own positivity, perhaps that is paying to much credit to me, but at times I do feel like that. My behaviour up until now, I suspect, makes it difficult for people to comprehend the struggle I am in. Not everybody wants to hear it. I had counselling the other day, and in these things I tend to have the occasional epiphany because I am not in conversation with myself, and I said that I am frequently being asked how I am, but I think few people actually want to hear how I am. They want me to be better and well. It’s too difficult to hear anything else and anything else goes so strongly against my character. What I feel hardly fits into a text message.

How much should I share anyway? I have lost an ability to know how much information is too much information? What are the costs of sharing? Big Sister pointed out that whilst My Myeloma is my own, it also belongs to others too, and she got me thinking whether my approach can be selfish? Is sharing selfish? I do not know how people feel about my diagnosis. Is saying I feel down enough? When does sharing personal thoughts become too much?

Do not get me wrong, some of my stoicism remains. Indeed it does. I am getting out and about and smiling after all. I am not constantly wanting to break down and talk about mortality, a stolen life, and infertility, but I want to feel like I am able to should I need to, and people will not run a mile if I do. I do not always want to talk about it either. For most of the time, I absolutely do not want to talk about it. I want to be to be able to say I feel let down, abandoned or jealous, without it being an attack on my character or a reason for people not to see me. I cannot help the thoughts, they do not feel like my own and I beat myself up over it. I want people to understand that and show that understanding to me. I do not need to chin up, it is not sufficient. I need the opportunity to talk. Again, I was talking to my counsellor and I surprised myself by crying whilst recounting a message I received from a friend, which showed some understanding and crucially, patience. I need patience too. In short, I want to be cut a bit of slack.

I fully acknowledge that this whole thing might not necessarily make me a hoot to be around. I get that it could be a chore. I get that I cannot articulate it and at times I may become a passive aggressive female dog. I get that this sounds selfish. I get all of it, but I need the slack. FYI, These fears are just some of the things I think about now. I am aware that this behaviour and talk may drive people away, indeed, I was warned of this fact. I am not going to talk about it over a post work drink, but it goes back to me knowing that I could if I wanted to, and it is from there that the isolation stems. Boom. Insightful.

This is what I need now. I need understanding, patience and slack. I have been assured that this will pass, it may even pass by November, who knows, I’m a strong gal.

The truth is, I am not strong enough to go it alone.

I don’t want everybody to become my counsellor, that would just be awkward. I want an army behind me. I have an army behind me, however, in this post transplant world, I have lost sight of who does what.

EJB x

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The Good Fight

A wise person once said to me that it would take time to recover after my transplant, both physically and emotionally. The person who said this is far more pragmatic and sensible than I, and added that I may feel different after my stem cells had returned to my body. Clearly, this was a conversation that was had before my transplant. Clearly, she was correct. I do feel different and I am not talking about my back.

A transplant is a transplant is a transplant. Most of the physical side effects can be predicted and there is a desired outcome. The Medically Trained People expect certain things to happen, I know that because they told me roughly what was going to happen at various stages along the way. Repeatedly. In addition to that, I read literature from various charities and collected anecdotes from people whether I wanted them or not. The emotional toll of what was going to happen was rarely discussed.

I was excited about my transplant because it signalled a possible end, but now, in limbo land, I feel empty. I’ve been running so fast for a year, working towards something, and now, I have done everything I need to do, all I have is waiting. It is an ever so subtle difference, that at times, I feel only I get. I remember many months ago, somebody who had a transplant telling me about their post-transplant depression, and I did not understand why they would be depressed. Everybody’s cancer is their own and I understand it now.

I have spent seven weeks beating myself up about this. I am stoic. I have reached this point in my journey with my head mostly held high and my glass half full. I am supposed to be a motivator. I am supposed to smile and let everybody looking at me know I am okay. I should not feel like this. This, by the way, encompasses a lot and with this, I feel like I am stuck on repeat. So, do yourself a favour and stop reading now or grab a tissue. It is uncouth to blow your nose on your top; I am learning that daily.

In the first few days in hospital, when I was still excreting fluids from my bum hole on the hour, I felt like I had lost my ability to reason and to problem solve. Now, with the weeks gone by, I know I have. Simple things feel difficult and by simple, I mean simple. Deciding what to have for dinner is no walk in the park, it is a headache. So imagine how I feel when it came to organising getting a new bed and wardrobe (I haven’t done it) and deciding what day I was going to return to London. Do not even get me started on my financial issues. I feel like Podd.

I have also discovered that my lack of reason, almost always means that I cannot stop myself from blurting out my thoughts and feelings. I do not need to paint a picture of this, for I sound like a whining arse wipe (which makes me feel worse by the way), but I am going to ram it down your throats anyway… If I feel sad, upset or angry, I am going to let it out. All my sense tells me not to, but I cannot stop myself, especially if we are close. As Mamma Jones explained to me yesterday, not everybody is her or Big Sister, and are programmed to take it. Last Sunday, in the middle of my worst breakdown yet, I believe I said that my life might nothing, none of my friends cared about me and I wanted to die, which led Big Sister to tell me to ‘get a grip’. I thought that was mean. That is how I felt in that moment. My response was something along the lines of saying that people do not understand what is going on inside my head. If I were reading this about somebody else, I would tell me to get a grip too. It does not feel up to me. Let us not forget that I am also going through the menopause, albeit real or fake.

Don’t get me wrong, sometimes, I am still a hoot, but my wit seems to be fighting an uphill battle for attention.

My excitement pre transplant, evidently, has diminished, it is not completely gone, I am a fighter after all, but it has gone right down there with my bank balance. Others are excited about the future and I get pep talks about how things will improve. The truth is with the transplant is that sort of talk and expectation, that talk about the improvements to come, anger me now and make me feel frustrated. Especially when the pom-poms are coming from secondary experience. Personally, I can barely think, let alone talk about what is going to happen to me in October, November, December, or how much I want to get back to normal, or what getting back to normal means to me, without crying. I cannot finish those sentences. That is no exaggeration.

On a number of occasions since I came out of hospital, people have asked me those very questions (what happens next, what are you planning, do you know when you will return to work, blah, blah, spew) and told me what I have to look forward to and every time, unless it is me instigating it, I feel like somebody has stabbed me in the stomach and then stuck their thumb in the wound they created. The thumb makes me cry. My voice breaks, and I have to use all my might to suck the tears back up again. In the last year, I have become very good at this, sucking the tears back up again, but in my world post transplant, it is much, much harder to do. The tears just come or I sound like a man. On one particular occasion, I was on the phone to a senior work person, but fortunately, the senior work person was oblivious to what was going on on the other end of the phone. Sometimes, there are reasons to be thankful for the temperamental mobile phone coverage in the fens. It was my favourite instance, because I would never, ever allow somebody of their kind, to witness that type of weakness.

The future everybody talks about so eagerly, scares me. I do not want to upset them. On the few times I have felt strong enough to let that excitement in, I plan in my head. I plan meals, cinema, theatre and holidays and I come across other hurdles and disappointment. I am not clear if they are actual hurdles, but my lack of reason makes mountains out of molehills. It is a prison. When my post transplant world comes, when I am in it because right now is not the world I envisaged, I want trumpets, bunting and kept promises. Right now, I just want support, understanding and reassurance.

I know that my up current struggles are not helped by my isolation. Since I was discharged from hospital, prior to Sunday afternoon when I attended a two year old’s birthday party, I had conversations in person or on the phone with just twelve adults, about half of these were not myeloma related. It would be fair to say that whilst I was in hospital, much of my conversations we also myeloma related, nearly all of them in fact. My transplant seems to have defined me more than my other treatment to date. I am more than my transplant and My Myeloma, and I deserve to be spoken to as such, otherwise, I end up having the same conversation again and again, just with different people. In terms of contact, what I mean is text message. Rightly or wrongly, I feel let down.

Based on all this, in terms of the effect on me, all I can say is, do the maths. It’s Key Stage 3 sort of stuff. If you cannot do the maths, see the bite size example below:

Isolation + boredom = insecurity + paranoia = tears + sadness

☔☔☔☔☔☔☔☔☔☔☔

I am not embellishing anything or seeking your pity. I want understanding. The thoughts I mention really have gone around and around my head and I have been taking this trip for weeks. Not every day mind, I do get the occasional rest day. In the last three weeks I have made several attempts to write this blog. I have questioned what has happened to me, what is happening to me and my future. I have played out the various scenarios in my head. I have been up and I have been down. There is however, only one time I have been absolutely certain. Somebody, who was recently diagnosed with the wonder that is myeloma commented on my blog and said they did not think they would take the medication to treat not cure it. The comments saddened me, but they also made me realise something about me, that in spite of everything I have said above and all the other side effects, I would never not fight this. Even if I am have no money, my support network get sick of me, I cannot shift the weight and I remain bald forever, I would continue fighting. The realisation was a relief, because on the dark times, I thought I had lost sight of it.

This period, is just part of the battle after all?

Anyway, I can still laugh at farts and stuff so I am bound to be okay.

EJB x

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