Faithless

I’m nervous. Cos I’m the left eye, you’re the right. Would it not be madness to fight?
We Come 1 – Faithless

I do wanna write. And I don’t. A lot to say. And nothing. I’ll try to avoid a long screed of whateversinmyhead, though it isn’t easy to get it in any better shape, right now.

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Start with the easy bit: the facts. After dropping dramatically in the first month on daratumumab, my light chains then went up, and up again in the second. Just when it seemed clear things weren’t working, the count dropped again a couple of weeks ago, which may not be enough to class as good news, but certainly isn’t bad news. Honestly, no-one knows what this means. But alongside a bad bone marrow sample, the doctors tell me they think my ‘eloma is “static”, which is different from, and not as good as a “plateau” (but better than “progression”). We’re awaiting the result of another whole body MRI, which should show up exactly what’s there. It’s really going to have to serve as the “definitive” measure of where I am. Prepare for the outcome to be as equivocal as possible. In my experience, it usually is. Meanwhile, I feel really rather good, and my blood counts are almost normal. I’m not getting much fatigue (some acupuncture seems to have really helped). And the pain is OK, though it notably gets worse when my results are worse… and then better again when the results improve.

Depending on the severity uncovered by the MRI, we could be urgently seeking a new treatment… or not. And overall, I could still be heading for stem cell transplant or CAR-T. Indeed, one of the questions right now is whether having one has any bearing on whether I can subsequently have the other! Though unless we can get my disease under control, I may not be fit for any of them. Working my way through the drugs is not a good prognostic, lets be honest. I have never had – and do not want – any numerical estimate of my life expectancy. I always work on the basis that, at any moment, I’ve about a 50:50 change of still being here 5 years from now. But being in treatment, and the treatment not working well, must heighten the risks.

That’s the status update. One consequence is that, just when we thought we could make plans for the summer, we had to stop. The latest medical advice for travel plans is “wait a couple of weeks”, and “the timing might be better in 2 or 3 months”. I’ve been living with that, pretty much continuously, for years now. We wait a couple of weeks, but a couple of weeks never comes. As for the better times coming… I could be in the midst of a stem cell transplant in 3 months, for all any of us knows. It’s not easy.
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What follows may or may not be helpful. Feel free to ignore me.

When I relapsed, I imagined a year of treatment, culminating in a transplant, and then a return to (relative) normal. But 18 months on, I’m not sure I’m any nearer to that. It’s forcing me to unpack a lot of my assumptions, which have been all jam-tomorrow, when I need jam-today. A string of failed treatments does a lot to focus the mind (and sap your faith). I’ve lived in this state of perpetual uncertainty for a long time now, and it’s not easy to convey what that’s like, to those who haven’t been there. If you have an hour and a half to spare, I’d recommend watching the BBC documentary “War in the blood”, (on iplayer until end of July – may not be accessible outside the UK). It gives a good introduction to “CAR-T” therapy – which is potentially where I’m headed. But more than that, the experiences of both the patients featured, and their nearests/dearests are much like mine. I found myself reading subtext in pretty much everything they said. Not easy watching though.

I am very grateful to a few people who give me the opportunity to talk while they listen, unencumbered by knowing me socially; notably my nurse, my counsellor and my Alexander teacher. I’m discovering some of my ways of rationalising are a long way from rational, not even healthy. One of my friends in myelomaville, Deb Gasgoyne recently wrote a piece on her feelings of Survivor Guilt. Reading it, I was reassured that I’m not the only one who has some rather perverse responses to my own predicament. What she wrote did a lot to jolt me in to facing up to some of my demons; to explore, explain and sort out some of what goes on in my head. I’m on a bit of a mission now to dump some of the unhealthy things I think. It’s not an easy process, but a constructive one.

I’m going to write some of it down, for the reasons I always do: I find it therapeutic (sunlight as antiseptic); it may help others in similar circumstances; and it might help people who know me understand me better. If you don’t want to read it, don’t!

A lot of it begins with contradictory thoughts: I might still be here in 10 years; but it might all be over by Christmas. Both these things are true, and I’ve struggled to deal with the constant stress. I accuse myself of making up a melodrama. And if I talk about it, I feel like I’m attention-seeking. After all, I might still be talking about it for years to come! I’ve been quite intolerant of myself. It’s become more and more of an issue as I’ve worked my way through treatment after treatment. I project my self-critical thoughts onto other people, which is neither helpful, nor fair. Do I really believe anyone else actually thinks I’m making it all up? Not really. The only real critic is me; beating myself up for being honest.

Plus I have a tendency to denigrate my own experience. My bones get measurably worse after a couple of bad light chain scores, and then I get a better result and the pain fades. I’ve always interpreted that as insincerity: psychosomatic, not real. But this presupposes an underlying objective level of pain, and pain simply isn’t like that. I’m going to write a separate piece specifically addressing pain. In terms of the sorting out of what’s in my head, the point is that I’m endeavouring to stop denying my own experience. Yes, it hurts more when times are tough. Pain is physical and psychological.

I hurt a rib a couple of weeks ago, playing football with the boys. I mentioned it to my Alexander teacher, adding some qualification the gist of which was that I wasn’t doing anything too dramatic when it happened. Her reaction made me question what I had said. Just what, exactly, in a bit of gentle father-son football would make me responsible for hurting my ribs? I know full well that if I threw myself heedlessly across the pitch, that’d be asking for trouble. I know I have limits. When we took the boys indoor skydiving, and indoor surfing, last weekend, I did not participate. But having limits isn’t the same as knowing where they are. I could try to steer well clear of my limits, but that would basically mean spending the rest of my life in an armchair. If I attempt to live any more than that I’m inevitably going to overshoot sometimes, and suffer for it in pain or fatigue. What I don’t need to be doing, when that happens, is carrying blame. I suspect the only person who really blames me, is me. But that’s enough. It needs to stop.

Another area where I need to cease blaming myself, is the impact that my illness has on anyone else. I’m not responsible for it. I can be sad, but I’m not sorry. It’s not my fault. Why does this matter? Well because it’s a short distance from being sorry to thinking people would be better off without me, or if I’d never been here. There have certainly been times, this last year, when I have felt like that. Those are the darkest thoughts of all.

The other day I told my counsellor something to the effect that I’ve always felt like myeloma was sort of appropriate to me – complicated, a bit cryptic, heavy on the numbers. She gave me a very odd look. So much so that I’m already finding it hard to think I even believed what I said – but I know I did. I’ve always thought of my myeloma in those terms. As long ago as 2013 I wrote in dialm: “It is very in character, for me, to get a rare, complicated disease”. Of course, that’s nonsense. My experience of myeloma is filtered through the fact that it is happening to me. It is as it is because it is my experience (and other people experience their disease their own way). One quizzical look burst the bubble in my head. This “myeloma” thing is no more meaningful than random chance. It doesn’t have a personality. It is nothing more than a profoundly shitty software bug. I don’t think I’ve been mythologizing it, but any residual interest I had in it, beyond the practicalities for me, disappeared on the spot.

I don’t know how helpful any of that is for you as reader – its been difficult for me to articulate as writer. My physical condition is like the proverbial swimming duck: it might look calm on the surface, but it’s more turbulent underneath. My mental condition is similar. I’m grateful for feeling good and looking well, really I am, but I’m not deceived by it.
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Bloody

Seeking fame and fortune, we walk the streets of London, looking for the crossroads everywhere
Fame and Fortune – The Libertines

Inbloodyvisible *

I’ve complained before about the lack of awareness of blood cancer; all the euphemisms; the complicated names; the fragmentation. So I should be – indeed I am – delighted that Leukaemia & Lymphoma Research has rebranded as Bloodwise. Not least because it is now inclusive of myeloma in a way it wasn’t before.

A bit late now!

However, I’m less impressed that I only discovered this today (while googling for something I knew would be on the Leukaemia & Lymphoma Research website). Apparently, the rebrand happened in September, as part of “blood cancer awareness month”. I wasn’t even aware of blood cancer awareness month. And I’ve got bloody blood cancer. So the likelihood that anyone else has heard of any of this is approximately the square root of bloody bugger all.

Oh the irony. If only it wasn’t a matter of life and death. Gotta laugh, or you’d cry.

Still, you know now. Spread the word.

* Expletive tmesis. Isn’t English glorious?

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, 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 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 an issue that was still 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 inexperienced 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 days 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

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 

Selfies

I searched out my companions, who were lost in crystal canyons. When the aimless blade of science slashed the pearly gates
Thrasher – Neil Young

A couple of interesting discussions about self-help/ support groups

This morning, I chance upon One to One on Radio 4, where Charlotte Smith is talking to Sarah O’Donoghue, about self help groups. Sarah’s son Charlie died in an accident. Charlotte has a rare and potentially fatal incurable illness called Lymphangioleiomyomatosis (or LAM). Sarah’s story really strikes me. She talks about the difference between “professionals” and people who have “been there”. And about the space and strength that a support group can give. Upon going online to find you the link, I discover that this is the second of two programmes. In the first, Charlotte was talking with Gill Hollis, who set up a self help group for people with LAM. They are both well worth a listen – and chime with a few of the things I’ve talked about recently on DialM.

Charlotte Smith meets Gill Hollis
(One to One, Radio 4, 3/02/15)

Charlotte Smith meets Sarah O’Donoghue
(One to One, Radio 4, 10/02/15)

I’d like to say a big Thank You, at this stage, to Phil and Scotty, who set up the myeloma under50s group, which has been invaluable to me.
There’s a bit of a “Why Don’t You?” * element to all of this, of course. Support is a means to an end, not an end in itself. Time, now, to turn off the PC?

* For those not of my generation: “Why Don’t You?” was a children’s TV show in the 70s and 80s, with a theme song that asked Why Don’t You Just Switch Off Your Television Set and Go Out and Do Something Less Boring Instead?”

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?

Post 33 – For those who are forgotten

I read a post a month or so ago by another myeloma patient about caregivers (god I hate that word though!) for myeloma patients. It made me stop and reflect a on the situation we live with in our house and the relentless care and support I get from my family and friends….but so much more than them, what Nick does for me on a daily basis.

Cancer is pretty terrible. There is no debating that, and, no matter how much as patients, we might look to everyone else that we are coping, that life is ok (when we are lucky enough to be able to say that) and that it doesn’t get us down, and no matter how much that may be true sometimes, living with cancer of any nature is hard work. There isn’t a day that goes by, where something doesn’t remind you of your cancer, of the treatment that you’ve had, or of what might come. At least that is the case for me.

But for all of that, and no matter how hard it is for me, I think that it is even harder for Nick. Yet he is my absolute rock and my strength whenever the going gets tough. He is the one that holds us together as a family when I’m ill or sad. He is the one that has to be strong for me and the children when I’ve lost the ability to be strong myself. And with all of it, he is the one, that should things turn for the worse one day, has to live with the contemplation that he might be left without me in his life anymore.

Please don’t get me wrong. We’re in a very strong position with my health at the moment. There is nothing to suggest a relapse is on the cards – I am well, my blood results are good, I’ve just had an MRI that shows no signs of any myeloma in my bones. But as I live with my fears, and address them on a daily basis as we make decisions (where to live, whether to work, how to bring up the kids), the burden that places on me often gets pushed onto him.

As many of you know, I am pretty engrossed with my fundraising too. Now Nick supports me 100% with this and has always encouraged me to do it. He can see the positivity that it allows me to place on our situation. I think that we both believe that it has given me a real purpose. However, the downside is that it means that he also never gets a break from the myeloma. As I write this, I realise that perhaps I have been very selfish over the past four years. I have always asked him about my fundraising exploits first but I’m not sure I have truly ever allowed him to think that saying ‘no’ to them is an option. Even now, as I draw to a close with my 40 Challenges B440, he knows I’m already wondering how I can get the last £15k raised that would take us to the £100,000 fundraising total. And I don’t know how to stop.

But I am genuinely worried that I am expecting too much of him. He works so hard to support me and the kids, often working 13 hour days at the moment. And on top of that he then comes home and finds he needs to help with the ironing, the clearing, kids activities etc. Recently he has also taken on more than his fair share in helping me to deal with the death of my mum. He does it all without a complaint. Not many men would. I don’t think I take it for granted but I do wonder if there needs to be more thought on my part about what he has had to give up to support me so fully.

I often joke about Nick not being much of a social animal, but as I write this, I wonder if part of that is because living and caring for a cancer patient ( and the family) and living with the whole ‘what if’ scenario is just absolutely exhausting. And living with someone like me who sometimes forgets the right priorities and becomes too focussed on things like fundraising, must make it especially hard.

I needed to write this post. I needed to remind myself of just how amazingly lucky I am to have Nick beside me. He is the best (even if I’m rotten at showing that to him at times)- the best support , the best dad, the best husband I could wish for, and most importantly, the best friend I could wish for to laugh and confide in.

And I needed everyone else to know just quite how much I love him….He is amazingly special.

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 an pretty sure that in my early twenties, I was the alway 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 chose 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

Post 19 – Myeloma Awareness Week

This week is the perfect opportunity for me to write a new post. It is Myeloma Awareness Week. And I have myeloma…just in case people didn’t know!
But I think I have written quite a lot recently about what myeloma actually is. So I thought I’d use this post to write a little about what Myeloma UK do and why I am so passionate about fundraising for them. They are not like many other charities I am aware of…they 100% put patients needs at the forefront of their work. I know that if I go to them with a suggestion or idea, they listen. They have even on a number of occasions implemented things I have talked to them about. I love that about them…they aren’t too proud to learn from their ‘patients/families’. I wish all charities were more like that.

So, what do Myeloma UK do. Gosh, where to start really. Perhaps with what has impacted me on a day to day basis. Support.

1. SUPPORT TO PATIENTS AND FAMILIES

Myeloma UK help patients and families in so many ways;

  • Info days: They hold a number of info days that allow patients to meet other patients and learn about myeloma. That may sound simple. But there aren’t hundreds of people with myeloma in a town….and you can feel really alone when you have this cancer. So meeting other people is key. And they get the best professionals at these events sharing their knowledge. I have been to two, and plan to go to the new Oxford one this year. Even down the line, they help with making sure that patients and families know about what is on the horizon….without trying to offer false hope.
  • Infoline – This is crucial to many patients who don’t know how else to get the answers. There are so many people who don’t want to read the internet (and they might be right! It is often scary and gives out of date and worse case information!). The infoline has amazing staff (special mention to Ellen!) who really know how to help patients with medical and emotional information. They also have the ability to put people in touch with other patients and carers who are part of the PEER NETWORK. I help with this and I hope I am able to help people who are newly diagnosed, scared and who just need some reassurances.
  • Myeloma Support Groups – Whilst these groups aren’t specifically run or organised by Myeloma UK, they are supported by them and again, are crucial to some patients and families. I’ve never gone to one of these as there isn’t one really close to me…and I’ve found my support via the Discussion forum and in later years, via Facebook friends. But I know many people who have found these really useful.
  • Discussion Forum – This is a fantastic forum that is provided by, and moderated by, Myeloma UK. It allows patients to go online and find other people who are going through the same cancer, similar side effects and symptoms, and the same emotional questions that they are worrying about. When I was first diagnosed in 2009, this was what kept me going. I found so many friends through this site and whilst I don’t get onto it a lot nowadays (a good sign, because it shows that things are going well for me and I’m busy!), I know that it will come back into its own when one day I relapse (as I am sure will happen :-( )

2. RESEARCH

The next MAJOR thing that Myeloma UK are instrumental in achieving, is a massive impact in the research field. They are the only UK charity focused on the discovery, development and access to new effective treatments for myeloma and they invest approximately £1.5m a year on world-leading research! That puts my fundraising into perspective really, but also makes me determined to keep going with it. Without patients and families like ours raising money, this investment wouldn’t be possible. And this investment is helping to;

  • find new drugs, preferably with lesser side effects
  • find out what causes myeloma
  • understand why patients react differently to different drugs
  • potentially help to in the future, find a cure for myeloma

They do all of this by setting up clinical trials with the newest drugs, their Genetics discovery programme, and research with patients ensuring that the right areas of myeloma are researched as time goes on.

3. SUPPORT AND RESOURCES FOR HEALTH PROFESSIONALS

4. POLICY AND PUBLIC AFFAIRS

Now I’m no expert on what this actually means apart from that I know that they work really hard to build relationships with the people that they need to, to ensure that they achieve their aims and objectives. Nick works in the pharma industry, and has been massively impressed with what the charity, and especially their Chief Executive, Eric (Low) has achieved with organisations like NICE – drug progression in timescales that are highly unusual. They work tirelessly to build relationships and to learn from those around them. And their achievements have been massive. So much so, that Eric even got awarded an OBE in 2012! Without any knowledge that it had been applied for….he is far too modest to have wanted it himself.

 

I am sure that I have missed lots that they do…..they are truly amazing and I am honoured to have the opportunity to know the Myeloma UK team. I hope I have many years to do fundraising for them that can help them with the work that they do- they are truly impressive. I would also like to give a special shout out to their Chairman, Judy Dewinter. Judy, works tirelessly for the best interests of the charity, but has also been a massive support to me as an individual. She does it all quietly in the background too. I was lucky enough to make friends with Judy in the early stages of my myeloma….and know how much she throws her heart and soul into all that she does for Myeloma UK. She made a huge difference to me. All in all, they are a massively impressive team….and I am proud to be associated with them (even if I would rather not have myeloma!)

If you’ve stuck with this post to the end, thank you…..I know it was a long, serious one!

40th-birthday

If you would like to sponsor me with my #40ChallengesB440, please either

go to http://www.justgiving.com/Deb-Gascoyne

or

text ‘DEBG99 £X’ to 70070

e.g ‘DEBG99 £40′ if you want to donate £40

On being judged

Trigger Warning: This is a rant. There is some mild swearing. I am angry!

I have had a rather upsetting little contretemps with a so-called friend…

It happened after I posted this on Facebook: “Today will include hair colouring (if I get a shift on), Tai Chi, knitting, meeting the editor of a local paper about writing for them, completing a DLA form and a scholarship application for Playback training, then maybe some writing and more knitting in my chair. Phew!”

My friend [sic] asked “Do you need a scholarship?”

Now, maybe that could be seen as a harmless enquiry, but my guts reacted with a clench – I felt I was being judged.

So I checked it out with her… And yes, I was being judged. She claimed that she wasn’t judging me, she just “…had to wonder at [my] application for a scholarship… considering [my] jet set lifestyle and recent shopping sprees, is all.”

Have we known each other for over twenty years? Have I been supportive of her health issues? Do I trust her to make valid decisions about her life? Yes, on all counts.

Did she read my recent post about my not normal life? Does she understand anything about my situation? Does she get it? Did someone not tell me that she has been nominated judge and jury over my life for the day? I think perhaps not, on all counts.

Because I am making the most of my time and funds…

Because I am travelling and doing as much as I can, spending money much more freely than ever before (on other people as well as myself), admittedly with some support from my family, but mostly using savings that I would otherwise have saved until I retire. By the way, that will be the retirement savings that are unlikely to be needed because that will be the retirement age I am unlikely to reach – not even the retirement age that used to be expected (60), let alone the age one has to attain now, due to government budget changes, in order to get the state pension(66)…

Because of my deliberate openness in sharing all of my activities, not hiding, being proud, bold and quite decadent at present… after over two years of feeling sick, fatigued, disabled, isolated, in treatment, being prodded and poked with cannulas, biopsy needles, chemo and other drugs, undergoing tests and procedures, experiencing a variety of side effects, a couple of hospital admissions and regular visits to clinic and Daycase, none of which is over… (More on current treatment shortly, once I have regained my equilibrium.)

And yes, perhaps I am playing the cancer card. Well, guess what, surprise surprise, I have cancer. I have an incurable cancer. I have every right to play the cancer card.

Because of all this, she is “… sometimes shocked by [my] apparent lack of awareness around [my] privilege.” So has she decided that perhaps I should “use [my] savings to do Playback and leave the funds for people less fortunate.”

This is all without knowing anything about my awareness of privilege, or how the scholarship funding is determined, or about any conversations I have had with the Playback School, or about the strong support I have from the school and without any empathic enquiry… In fact without knowing very much at all about anything, only that she felt “uncomfortable”.

I believe “uncomfortable” is a red herring. I think envy is playing a role here. I did suggest that, but understandably was met with denial and the counter that “[she] too live[s] with a lifelong, sometimes, life-threatening condition”.

Now envy is a strange thing, isn’t it? I am pretty sure she would not wish to swap with me, to have an incurable cancer shortening her life. And if she did have cancer, I am confident that she too would grab every opportunity to take up training, volunteer, make a difference, travel, spend on herself and other people and do all those things that one puts on a ‘when-I-have-time’ or ‘when-I-retire’ list, or what I have called my List for Living.

Privilege is another strange thing. Yes, I am privileged to come from a family with money to support me and that for many people facing cancer, even in the UK, where we have the NHS, not to mention other countries where treatment is dependent on having the funds to pay or the ability to fight/negotiate with an insurance company, where no money = no treatment, end of story. Yes, I am very lucky not to be facing poverty on top of ill health, pain and an incurable cancer. However, I believe that I am using my privilege to make a difference.

Aside from the fact that judging people based on your perception of their experience is really not acceptable, not helpful in terms of changing the other person’s behaviour, if that is her intention, and it’s definitely not empathic. By the way, this friend is in training to become a counsellor… She is not the first of this ilk, nor I doubt will be the last. Hmmm… Walking a mile in someone else’s shoes comes to mind.

I resent being put in a position of feeling the need to justify my choices, my spending, my application for help with funding, my reasons for asking for help. And I am not about to start here.

Oh yes, I was tempted to lay it all out here, but that idea makes me even more angry. I am not asking for her or anyone else’s permission. I do not wish to be judged full stop! If you cannot support me in my decisions and activities, then go and whisper about it to someone else who cares for your opinion. Because that is all it is.

I resent the stress and self-doubt that having this conversation has caused me. I resent my politics being called into question: “I often wonder where your ‘politics’ actually are.” I beg your pardon?! WTF???!

One thing that has changed for me during these past three years is a strengthening of my bullshit radar. While I have become softer, more compassionate, more appreciative and more generous (especially while on steroids) towards those whom I love and who love me, not to mention towards strangers and charitable organisations, I have also become a lot clearer about and quicker to respond to behaviour that is unsupportive, detrimental to my well-being, or even downright toxic.

I will no longer tolerate people who purport to be friends but behave like enemies. I believe the current terminology is ‘frenemy’. I already have an internal frenemy, in the form of myeloma! That, at least, is just going about its own business, which just happens to be detrimental to my health, but I don’t perceive it to be actively malicious. It’s not out to get me. And it was never a friend, so I do not feel hurt by betrayal.

In the past, in the years before cancer, if I encountered challenges like this, I would spend many troubled hours soul-searching and berating myself for my failings. I would take on all sorts of crap that other people threw at me. I am not saying I was always right, that I never made mistakes – of course I did – I still do. But often I was so keen to make things right, to avoid confrontation, to take the blame for things, to question myself before anyone else, to please people rather than validate myself, that I would twist myself into all sorts of painful positions to put things right that many times were not my wrongs.

These days, I will not do that so readily. I am a lot more in touch with my gut feelings and I trust them more than I ever did. I can admit being wrong when I believe I am, and I do my utmost to put things right when I mess up, but I can also stand up for myself in ways I wouldn’t have dared to do before. I feel stronger and more assertive than ever and less afraid of the discomfort that challenge and confrontation brings.

Some of this new-found strength of character is from going through all I have experienced in the last three years. It has brought out a warrior spirit in me. Some of that is due to the influence of a friend, whose directness and fiercely protective attitude around me has allowed me to experience a stronger sense of myself and my value. Standing up for myself is valid. This friend’s bullshit detector is on full-strength and for the most part I trust her, even when we don’t always agree on the best way to deal with the crap.

So, all the haters out there, please take note: You are no longer dealing with a doormat. I do not need nor want your heartless, envious judgements or your lack of trust in me. If that is what you bring to me in the name of friendship, then I no longer need your friendship. Fortunately, along with everything else I have encountered on this journey, I have found plenty of good friends, a strengthened bond with my family and people who were just waiting to appear in my life, people who accept, support, care for and love me. And the feeling is strongly reciprocated. I am fiercely loyal to my friends, grateful to and proud of them.

Ok, I think I’m done. Rant over. Thank you for reading. Supportive comments are welcome. Anything else, please take elsewhere.