Tag Archives: Support

Rallying

Yesterday marked the end of five days of pre transplant conditioning. That would be, five whole days of travelling to and from St Bart’s for chemotherapy. Since the fist clenching, swear word swallowing experience of Day One’ (Day-6), I have endeavoured to be on my best behaviour when on the ward, experiencing the medical equivalent of seeing Wagner’s longest work without subtitles with an innate hatred of opera. 

I concluded that if I cannot always  service with a smile, I should be the one delivering said smile. It is something that is much easily willed than done, especially as the chemotherapy is having a negative, cumulative impact on every aspect of my body. My brain, my muscles, my bowel and my bladder feels like they have been assaulted by a BB gun and multiple sacks of potatoes. Thus, finding the energy to smile, let alone speak, does not come as easily to me as it usually, all so naturally does.

I have been attempting to rally myself into a state of positivity, but for me, this last five days at least, it is not something I have been able to do all on my lonesome. I have needed assistance. Poor Mamma Jones has been on the other end of the phone wishing she was in London. I even admitted to my friends that I was in need of assistance. Assistance being in the form company to make the hours in the clinic more bearable. Assistance to remind me that this is only a temporary measure, that won’t go on forever. Special kudos has to go out to Housemate who fought through what I can only imagine was a horrific hangover on Saturday to be at the hospital for 9am, returning home at 5pm. Yesterday, he even did my dishes, which is unheard of. 

In all honesty, this cannot be done alone. Yesterday, I forgot to brush my teeth, which I am sure was a pleasure for the Medically Trained People who had to get remotely close to my face. Even with a support network, the treatment is isolating.  If I feel like this now, who the heck knows how I will feel in a few months time?

In terms of the immediate side effects,   the hiccups have been plaguing me since yesterday, and when one looks like this post chemo, imagine what I look like mid multiple jerk:

 
Today, I have a ‘day off’, but this still involves heading into the hospital for blood tests. Big Sister also arrives in the Big Smoke for her part of the process today, so it seems only fair that I meet her to express some of the inexpressable gratifitude. 

Prior to last Thursday, I was told that I would find the conditioning relatively easy in comparison to my previous treatments. I wouldn’t go out and out and call this a white lie, I just think it’s difficult to be comparative to my past experiences when my current experience is so foul.  I might have fouled myself twice in 2013, but that is no consolation when I cannot take my morning medication without vomiting or distinguish whether ‘consolation’ is the correct word to use here over ‘consolidation’. 

We all know how much I love to talk about my toilet issues, so imagine the complex situation I found myself in on Monday night, four days without passing a number 2 whilst experiencing a cystitis-like pain from the cyclophosphamide. Every effort to unleash the stool, angered the other thing. It was a pain that could only be muted by taking two diazepam to permit a long sleep. It was a temporary reprieve, for it was still an issue present upon waking, but, hey, at least I got some sleep. Last night on the other hand, my sleep was interrupted five times to pass water because of the cyclophosphamide. 

The last five days have been relentless. With an auto, it’s one day of treatment than the transplant. The horrible side effects hit you later. I will probably be thankful when what experienced in 2013 doesn’t hit me, but right now, I just really, really want a week in my bed to recover. I know I am a good few weeks away from this luxury. 

So, in the meantime, I just have to rally. Rally and remember the key words that ‘This Soon Time Pass’.

  
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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My Little Secret

As I emerge from yet another broken night’s sleep, I think it is high time I revealed a little secret in the hope that I can have a full night’s sleep tonight…

Dum. Dum. Dum.

In no way, whatsoever, am I coping with my transplant plans. You can exhale now. I do not feel ‘okay’, which if you did not know is my default, do not alarm people adjective for my health and my feelings. I find anything below the Okay Line, all rather embarrassing and not very English. I do not think I can hold my stiff upper lip anymore, and in admitting that, I suspect I am letting some people down.

I might me as big as one, but I am currently, not as strong as an ox.

If you are fortunate enough to be the handful of people I have felt well enough to talk to over the last week, I may have mentioned the subject and smiled. My voice may have even broken as I succeeded to hold back the weight of conflicting emotion. You may have left the conversation thinking that some of my fears had been listened to and that as a consequence I felt a better. I may have felt a little better, but then we have only really scraped surface. I do not know how to present the truth to people, to my Network.

The truth is, at this moment in time, as I am due to spend the next x weeks preparing for y months of illness and the unknown, all I can think is ‘can I do this?’ Then, when I am done considering that and everything than encompasses, I ask myself ‘is it going to be worth it?’ If I have allowed the brain to truly spiral into self pity, the latter question is accompanied by the sub question, ‘what are you even going to be left with?’

Reading my questions, I would like to think that your answers would be ‘yes, yes and a lot’. I keep telling myself that these should be my answers. There is something else in my head however, on repeat, with a persistent beat, saying ‘this is all too much, Emma‘. Too, too much.

On a practical level, I can discuss the x and y. By that, I can talk to somebody about how I have purchased new pyjamas, when I am going to shave my head, my concerns about where my PICC line is going to be in relation to the toilet door in my hospital rooms and whether it is possible to magically speed up my iPad so I can have meaningful entertainment in the hospitals. That’s the limit though, because everything else is a black hole of uncertainties of terrifying gargantuan proportions.*

In a much needed counselling session last week, in answer to my first question, I almost satisfied myself with the answer, ‘I’m just going to have to pull something really big out of my arse’. Even in the most emotional of circumstances, I still manage to find a way with words. My reasoning was that I have managed to hold myself together for over two years of near constant treatment, by flying, very slowly, by the seat of my pants.

My ability to create magic from my bottom, I believe will be greatly aided if I can use my x weeks productively, to see my Support Network, do things that I will not be able to enjoy for the rest of 2015 and complete my annual Oscar’s Challenge.

There is a problem with this plan in addition to my financial constraints, and it is a problem that is adding to my current woes. The problem is called fatigue. After 28 weeks of ongoing treatment, my body is coping less well with the thing they call energy. Not only that, but my new treatment regime, which involves the return of Cilit Bang and coordinated weekly doses of steroids, means that I have even less energy to do the things I would like to do. I have become most flaky in my social planning, for, I am finding there is just a lot of things I cannot do. On Saturday for example, I was out of my flat for a total of 5 hours, which included lunch, the cinema and a trip around Dalston. At the end of that, the only place I was going was to my bed to feel sorry for myself.

My head does not need the additional hurdle of fatigue at this stage. Last night, as I sat on my bed for 20 minutes working up the energy to put on my pyjamas, brush my teeth and give myself my G-CSF injection, I thought that the year of fatigue had already started. I am already struggling and it will go down before it goes up. It is an extremely scary thought.

Scarier still is what is to come when I head into my transplants. As I am one to blow my own trumpet, last week I summed it up well when I said that the best case scenario is that I am incredibly ill for a year. I might have even put that in my last blog, I cannot remember, in which case I said it a fortnight ago. I am going to stop, lie and watch whilst everybody around me continues to live. I obviously want them all to live, but that does make me feel behind. Immature. I try not to think about how much of my life has been put on pause with my treatment, but I would be naive to not realise how magnified I am going to find this reality when I am bed bound for such a long period of time.

Fingers crossed I will emerge well from my procedures, but that will come at a cost. I will have no money, I probably will not have a job and I will still be single and not so ready to mingle. I know myself well enough to realise at some (many) point(s) over the year I’ll be jealous and angry that others will be experiencing what I wanted for myself. I do not know how I will deal with this and I that is a concern. I am scared of driving people away. Mamma Jones recently described me during my first transplant as a ‘brat’. That was a revelation because I thought I was an angel.

When I ponder whether it’ll all be worth it in the end, my fear is that My Myeloma would have left me a shell of a human being with little relation to who I was up to 17 August 2012. I do not know what I will have to offer. This is a shocker, but myeloma has most certainly dented my self esteem. Even now, I am haunted by the words a friend said to me post my first transplant in October 2013. ‘Everybody is bored of your myeloma. You need to understand they need a break from it and thus you’.

Imagine that, huh? I know for a fact I am not going to be an easy person as things get going (seeing quote from Mamma Jones), and I fear that those kind words will become truer and truer as the year progresses. How far with loyalty get me? I have already seen some of this specific concern reflected in my relapse. I cannot do many a thing these days and thus less people feature in my life as a consequence of that. When I am high as a kite on morphine or after spending a third day without speaking to anybody but my mum, imagine how those thoughts will play. Actually, you do not have to imagine, I have imagined it for you and I am trying my hardest to find a way for me to not let it happen.

Of course, I have my fears about the worst case scenario too. I am still superstitious, trying to be brave and limit what can be perceived as complaint, so you’ll just have to read between the lines on what I do not want to happen.

I was surprised earlier in the week that somebody else was surprised when I told them that I have recently become reacquainted with the uncontrollable tears. They asked me why I was upset… I really hope the cat is out of the bag now.

And quiver.

Now, if people can make me feel loved without making me feel awkward or like you are taking pity on me, it would be much appreciated. Don’t worry, I can talk about things that are not about myeloma, in case you were on the cusp of getting bored. I think.

EJB x

* In case you were wondering, I am working on increasing my limits. I’m searching for some metaphorical tools. Do you know where I can find them?

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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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Bureaucracy – An Update

Some time ago, I attempted to explain the form filling nightmare that is the British benefits system. To be fair, I expected to fill out forms, just not as many as I did, nor did I expect to have to prove that I was not a Big Fat Liar. Three months on, however, I am in exactly the same situation I was in before I spent a considerable amount of my time writing my name and national insurance number over and over again.

If one thought that as policy makers, governments worked at a snails pace, it appears they work at a similar speed in all other areas under their remit. I am generalising here, incorrectly of course, for our Government is great, I am only talking about the Department of Work and Pensions (DWP), and then I am not even really talking about the DWP, for they have passed my claim on to a contracted out company for assessment. My claim has been under their assessment for 92 days and they are yet to have looked at it. Let this be a lesson to you all, contracting out services works!

I have applied for something called Personal Independence Payment, which replaced the Disability Living Allowance. I am well aware that I do not need the full payment this benefit can offer. I do however, find that there are certain things that cost more money, now I’m a a disabled. Travelling costs more money and it is more difficult than it was before. I get more buses because I cannot walk as far, I even venture on the tube now, even more occasionally than that, is the luxury of a taxi because I get too tired to move and my back feels like it is going to snap; these may sound like small things to you, but they cause me no end of headaches. In my flat, I cannot properly clean and I cannot carry my groceries. I attempted the Hoover yesterday, and let me tell you, today, I very much ache, despite my double dosing last night. There are small adaptations to be sure, but adaptions that cost me money that I do not have, or ruin my few good hours a day with unnecessary pain.

It is not just your money I am after. I really and truly want the government to recognise me as ‘disabled’. It would well and truly make my disabled life much easier, if I were qualify for the national concessions. It would make my bus journey safer and it would give me more energy when I am being driven. It would mean that I would not always have to say why I am disabled.

I have been waiting for the outcome of my PIP claim, before I pursue local options, as it means that I would have to jump through less hoops.

I am becoming doubtful, that I will ever receive extra support. I mean, I get up and go to work, so why do I deserve any help?

I chased my claim last week, not by actually running after it, but by picking up the telephone and calling the DWP. After fifteen minutes, I was told that my claim had been received (they do not send acknowledgments or holding letters), and it had been forwarded to ATOS to process. It was forwarded to ATOS on the 26 September. Helpfully, I was told that this was a long time ago and it should have been processed by now, for this process should take between 6-8 weeks. I was then given a schpeel about the various stages of making a claim, and I was told that they may contact my Medically Trained People (paraphrasing) to see if I am truthful (paraphrasing again). That was exactly the same information I was given in September, and given the fact I had to provide contact details, I found this statement outrageously shocking. Oh, and I may be asked to attend a physical assessment. The DWP could not help me further, so I was given the telephone number of ATOS, to hasten a response directly.

Twenty minutes later, I spoke to a lady at ATOS, who informed me that they were in fact in receipt of my claim, and I needed to be aware that when my claim is being investigated, my Medically Trained People will be contacted and I may be asked to attend a physical assessment. I asked why it was taking so long, in my polite voice, stating the timescales I had just been given by the DWP, to which the the lady became agitated. According to her, the DWP had no right to say that to me, indeed, the DWP is to blame for the whole thing, because they underestimated the number of PIP claims to be processed when they introduced the new benefit, and presumably, contracted out the service. The lady was mad. I feel I calmed her down when I said “okay”. She then decided to tell me that when my claim is processed, I should expect for my Medically Trained People to be contacted and said I may be required to attend a physical assessment. It was good to know, because I had forgotten. We finished the conversation with me being told that there is no timescale by which my claim needs to be processed, when it is, I’ll be contacted by the post.

This is my first experience of the UK benefits system. I am very impressed by it.

I just know that when I finally receive the letter, the dog will have eaten it before I have a chance to read it.

EJB x

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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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How Not To Greet A Myeloma Patient – Part II

I feel for the people in My Network. I suspect, though I am not entirely sure of it, that with regards to me, they have to reach and maintain the delicate balance of treating me like normal, as the person they have always known whilst acknowledging that I do have an illness that is shitter than shit and for this reason, I do need the occasional TLC because I can be emotional and sensitive. Emotional and sensitive. Believe it sisters. I wish I was neither, but hey ho, life is not that kind. If I am honest, I do not know what the right balance is, so deity help The Network.

With some people it’s easy; it’s a given. Housemate for example, could tell me that I look like a sack of potatoes and smell like farts, and I’d still wash his pants. For others, I think it is more difficult, but after ten months, I think we are working through it and I am comfortable with the way things are. Bar the occasional bout of paranoia, anxiety and self loathing, but this existed long before I contracted this deadly disease. These people have seen me multiple times since I was diagnosed and have a good working knowledge of My Myeloma and what it and the changes mean, and I am most thankful to them for that. It doesn’t take a genius to work out that a knowledge of the cancer and my treatment, would assist people with knowing how to manage my mood and what I need on any given day.

For people who I do not see regularly and who do not know a great deal about myeloma, perhaps even, how to spell it, it is more difficult. I do not know how I would be if the situation was reversed. By ‘being’ what I mean, is I do not know how I would show that I care about somebody if they were 29 and had myeloma. It too is a delicate balance.

For me personally, there are certain things that I hate when it comes to me coming face to face with another human being, who I knew once upon a time. Loathe it actually, to the point where if I can predict it coming, I will not go. It is an inevitability that on seeing somebody who I have not seen for a while, My Myeloma is going to monopolise the conversation. It will now, forever be, that way, and there is not a great deal to be done about it. People care about me, I assume so anyway, and want to know how I am, yadda, yadda, yadda, blah, blah, blah. Blah. It is nice that they do obviously, but like I said, there are certain things, in regards to this, that I hate more than I hate cherries and I hate cherries.

Firstly, if you approach me and tilt you head to the side, I am automatically going to think ill of you. If the head tilt is accompanied by a frown and/or something that resembles a sympathetic noise, you would have lost me for the rest of the conversation. I have witnessed this on many occasions since I was diagnosed. At the start, I could stomach it, but now, ten months on, I cannot. Yes I have myeloma, and yes, I have a shortened life span, but, I do not want to see that in people’s faces when they talk to me. There is a difference between sympathy and pity, and the head tilters fall into the latter category and that is just not healthy for me nor for them. It’s a look, which makes me feel like a dead woman walking. Every time. I hate to point out the obvious, but this makes me sad. It makes maudlin thoughts set up camp in my head.

What follows, in this particularly scenario is the ‘how are you?’ A simple, caring question to be sure, but again, if during my whole response to said question, if the person continues to look like they have one ear heavier than the other, I am going to get frustrated. The frustration grows if their concerned demeanour switches to confusion. A week or so ago, I happened to find myself in the situation where I was confronted with several people who had too much wax in their ears. I am no stranger to the roadshow, but around every corner was a head tilter intent on talking to me like I have had a lobotomy. This brings me on to the second thing I loathe. They would not leave me alone, nor drop the subject of myeloma.

Myeloma, myeloma, myeloma, myeloma, myeloma. Bloody myeloma.

Way back when, many moons ago, I said that I did not want My Myeloma to define me. At the time, I was referring to me and my personality, my being. I did not consider what other people’s perception of me would be, and whether in their mind, I was going to be become my illness. I have been thinking about this for a fortnight, and unfortunately, for the people who would not take my standard briefing about my illness and demanded more, in their eyes, I am no longer just Emma. I am Emma with myeloma. I could basically be myeloma. Correction, I could be cancer, for myeloma may be too specific.

I have spent months trying to perfect the polite response to the ‘how are you?’ and then move to subject on.* I even practice it at home. Two weeks ago however, I learned that in some cases, this was not sufficient. When I responded saying I was fine, people doubted the sincerity of my reply and said, ‘no really, how are you?’, whilst looking at me like I was having a nose bleed. My internal monologue’s response to this was straightforward, it simply said ‘I do not want or need a counselling session, go away (or something um, similar).’ What actually came out of my mouth was ‘I’m fine, I manage and I cannot ask for more.’

The point I am trying to make, and I am using a lot of words to make it, is that the inquisitive head tilters make me feel like I am dying. Not only do they make me feel like I am dying, but they make me feel like I am a child dying only after my personality and 29 years of life have been brutally murdered, buried, eaten by maggots and forgotten. And all the time I feel this way, I look back at them smiling, because I do not want to appear rude or weak. I freely acknowledge that myeloma has made me boring, and it stops me from doing what I want to do 80% of the time, but it has not become all of me. Not yet. I have more to offer than My Myeloma, for I am not and should not be defined by it. Some people, just did not get this message.

In all honesty, I would be upset if somebody did not acknowledge ‘the situation’, but there must be a better way than making me feel like I am less than I am. There is a better way, I just cannot quite put my finger on defining it, but it does exist. If it did not exist, I would go about this earth irritated by everybody and everything, when in reality, there are only a handful of people who have made me feel like the end is nigh. The best meetings I find now, are the ones in which I do not think about them afterwards.

Talk to me about My Myeloma by any means, but be aware, there is more to offer. Maybe, and this is just a suggestion, we could talk about you? Just for a little bit.

My name is Emma Jane Jones and I am an ungrateful monster. With myeloma.

EJB x

* There are still several occasions in which I find the need to talk about my illness and I do. Like a said, a delicate balance.

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Empathy

It took longer than I anticipated after my diagnosis to be able to empathise with the lives of others.

From the start, and I know this because I wrote a blog about it, I said that I did not want things to change with my friends or family, I said that I was the same and I was able to support people if they needed it. I am not talking about supporting people in supporting me, that would just get complicated, what I meant was, in spite of My Myeloma, I could still be a friend.

The problem with this sentiment, as true as it was and still is, my mind, at times, has been otherwise engaged. And then some. As much as it pains me to admit it, when your existence has just been turned upside down and you are taking an obscene amount of medication, the trials and tribulations of everyday life, in the grand scheme of things, do not seem that important, and even on the occasions when I knew they were, getting my brain to engage, was difficult. I am referring to other people’s problems here, I readily admit that My Myeloma exaggerates everything in my life.

For a long time, I genuinely believed that I had lost all my empathy, in particular, my ability to sympathise. For a long time therefore, I feared that My Myeloma was turning me into a rather horrible person. The kind of person I only allow my family to see… I would look at people being happy or sad and, predominantly, all I would feel was a blankness that I knew was wrong. It is not that I did not care. I believe the fact that I knew what I was feeling was wrong, shows that I did care, it’s just I did not know how that worked alongside my self preservation mode, which has a big sign on it that says ‘my life is worse than yours, so get over it’… Evidentially, I *may* have felt a little bit of something other than the blankness. Something green. I continued to worry and dwell about people alone in my bed, like I have always done, being careful to never actually show them that I care (you really are lucky if you get a text message, the man hours that go into one of those puppies is immense), but for a lot of the time, I did not know how those thoughts could possibly fit in with my new life. I feel it is important to make note of the last point, in case you are reading this, thinking that I am a selfish monster. I promise you that that is almost certainly not the case.

Are you confused yet? I am and I have been thinking about this for months. It’s like peeling an onion. Multilayered.

I have discovered that celebrating with others is far easier than commiserating with them. I actually like it when people get good news or indeed, if the people I love are happy. It is rather pleasant to see a smile on a face now and again. After the initial shock of my diagnosis had worn off, I actually found comfort in it. Let us be honest, if I could not be happy for other people by now, I would never be happy in Mylomaville would I? So, as I have seen friends fall in love, buy houses, move in with their pumping partners, get a new job, release an album on iTunes, get engaged or build a Lego airport, I am genuinely pleased for them and it makes me smile, and it most definitely gives me something to talk about, which is always a bonus.

It also means that I am not a total disgrace to the human race and that I am a nice-ish person. Score.

Happiness therefore, is not the problem.

The crux of the problem therefore, really does hinge on my levels of sympathy for others or the lack there of.

I do not speak for all myeloma sufferers when I say that when something happens like getting a cancer for which there is no cure, all the stuff you used to over think and worry about, while they may still be present, pale in insignificance compared to The Diagnosis. They no longer keep you awake at night and only rarely do you cringe with embarrassment when you recollect previous indiscretions. That alone is a learning curve and unfortunately, it is a journey one has to take by themselves.

For me, in my life, I am the only one suffering from myeloma, nobody else in My Network is, and so their lives continue. People can support me, but ultimately their barometer stays the same. The bar for them, of what is shit, has not been raised (or should that be lowered?) like it has for me. What matters to them and keeps them up at night, whilst it may seem trivial to me now, it isn’t for them and strangely enough, that fact is not a personal attack on me. Getting my head around this was beyond difficult and it continues to be so.

For a long time, I did not believe that these two realities could coexist.

I have made many a song and dance about how I wanted people to treat me in exactly the same way as they did before my diagnosis, but my desire for normality, did not really take into account that things had changed. What would have once been normal conversations about a crappy week, were perceived by me to be thoughtless gloating about the lives of fabulous twenty somethings, something that I cannot even aspire to. The anger and jealously this created within me, made me bitter, paranoid and more angry. Garnering any sympathy after these little worms had wrapped around my brain, was next to impossible.

After a while, an undisclosed period of time, because even I do not know when it all suddenly clicked in my head, I realised I could be sympathetic and I could be the friend I remembered. Only if I tried really, really hard. Actually, it is possible if I throw away the bad thoughts as soon as the creep in to my head. Sensitivity also helps. FYI.

Until this happened, I could manage tales of woe if they were presented to me in such a way that acknowledged my situation. I know this sounds self indulgent, but I could not have somebody using adjectives like ‘worst’ to me about their lives, because they don’t know what ‘worst’ is. Perhaps I don’t know what it is either. We know our ‘worst’ and that is it. To prevent myself from being in a situation where I had to challenge my compassion, I avoided certain people, I had to. Yet another thing to make me doubt myself and my relationships, but that self preservation mode is there for a reason. It stops me from screaming at people, telling them that they are lucky and they should just shut their faces and enjoy the weather/their bad date/their day at work/the crappy pub/their train journey/their dinner, because there may come a time when they personally long for a time, in a galaxy far, far away, when these are the biggest issues of their day/week/year. Issues, which leave no lasting mark and can be healed quite easily. Probably with a Twix.

You see, I am like, so totally over it.

I guess, very inarticulately, what I am trying to say is that the sheer weight of My Myeloma overpowers everything else. I want to act and feel a certain way, akin to how people treat me, or once treated me, but the myeloma seems to always want to pull me in another direction. I could just about manage its shadow if my life were just me, but it is not. My Life includes The Network and everything that happened to them before I was diagnosed still happens to them; people still get sad and people still get happy for genuine and superficial reasons and I want to be a part of that. I have to remember that I was once one of those people who would cry over spilt milk.* Somewhere deep in my memory, I have to remember what I was like, so I can metaphorically hold my friends’ hands because I would never actually hold their hands, whenever they feel blue. It is always going to be difficult for me to sympathise because My Myeloma is so much bigger, there is no escaping that, but I hope that I am getting somewhere closer to a point where My Myeloma does not polarise. In terms of my friendship and what I can offer, out is the irrational anger at inconsequential pastimes and in, is cautious reinforcement fitted with an emergency sympathetic noise button. I hope.

Unless of course you have a cold, but that is worthy of another blog completely.

EJB x

P.S. Myeloma may have sucked out all my sympathy, but it has strangely replaced it with an unhealthy dose of over sentimentality. It’s a true story. You should just hear all the nice things I say about you behind your backs.

* To be clear, before the diagnosis, I would never have actually cried over spilt milk. It was a turn of phrase. I probably would have just gone really quiet and hid under my duvet for a bit and/or got drunk.

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