Category Archives: Macmillan Cancer Support

The Do-Gooder

Many people can be forgiven for being under the impression that I spend all of my time, idle, lying on my sofa neglecting my looks and my blog, whilst wallowing in self pity. The truth is, that only accounts for 80 percent of my time. The rest of my sick leave is spent doing a myriad of exciting things that one day, I will find the time and brain function to tell you about. In the last week however, I have managed to devout approximately 10 percent of my energy to altruism. That’s right, altruism, for I, Emma Jane Jones am altruistic. I definitely did not do the things I am about to tell you about, so that I had something interesting to tell you about. I did them because at my very core, I am good and, I am selfless.

You have all heard the saying charity begins at home. Well in the last week, charity for me has actually meant thinking about me and only me. That’s home right? There has been a great deal of reflecting and delving into my personal world of myeloma, producing 2666 written words, one bout of insomnia, a photo shoot and the ability to speak to a room of medically trained people whilst wearing leather and having a hot flush.

I am yet to conclude whether these exercises have been healthy for me, but that is how I know that I am really an altruistic bunny rabbit requiring praise and awe. I have done two things for charity that you could say were difficult for me to do. They were difficult for me to do. On here, I only really talk about my current feelings. I rarely attempt to see a bigger picture. However, in two different ways, for two different charities, I have done just that. I have recounted and explored my journey from when I first felt a tinge of pain in my back to where I am now, which in case you were wondering, is called limbo. I rarely look back at my treatment, because my focus has to be going forward, and getting through the day when I do not know what forward looks like.

Looking back, firstly in words for Myeloma UK’s newsletter, was overwhelming. I did not expect to be overwhelmed, but I was. I don’t need to recount my considerably over the word limit story for you now (for that will indeed come), to say that it invoked some emotions that I would rather not have felt. It was one thing for me to recognise my stoicism and I do, it is quite another to see perhaps the mistakes I have made since I was diagnosed and to relive some of the nastiness I have encountered along the way.

The activity was accompanied this morning by something else that I would describe as ‘challenging’, but challenging on the most superficial level. This morning, in my flat, I, along with the dog, was the subject of a photo shoot. Not just any old mobile phone photo shoot after a few brewskis; this one featured an actual tripod.

When 80 percent of my time is spent being idle, the physical expansion of the my body is no surprise and being the main subject of any photograph, is now, not what I would describe as fun. It’s the end product that puts me off. Housemate however, seemed to find my posing quite funny, especially when I did so in front of some meringues. That’s right, meringues in a tin.

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It’s fine though, I think the difficulty I had in producing a genuine smile, will just be interrupted as constipation. That would be no lie in any tale about myeloma treatment.

The second of my endeavours this week, was for the little known charity fond of a coffee morning, called Macmillan Cancer Support. Some weeks ago, I was asked if I would be willing to share my story with some of their helpline staff, who were travelling to London to do some specialist training on myeloma. Maybe this is not that altruistic, but I was so pleased to be asked, I could not say no. In fact, I think I almost looked forward to it.

On Wednesday afternoon, I made my way to Huntley Street and sat through one presentation by a Medically Trained Person on myeloma treatment and escaped before a second person delivered one on stem cell transplants. I did not think my mind was strong enough for that, when an hour later I was to address the room on my many side effects from before diagnosis to my present. And address them I did, warts and all. Beforehand, I had discussed what I was going to say and I thought about it many times over and I almost remembered everything I had planned to mention. I did forget to say how my forgetfulness causes much frustration and difficulty in my everyday life. Go figure. I did not forget to talk about depression, isolation, friends, fertility and faeces. As you can imagine, it was a barrel of laughs. It was also very honest.

The person who planned the training said that I provided a human face to all the technical jargon they had sat through earlier in the afternoon… I am not one to toot my own horn [often], but I think my comments were well received, that, or they just felt sorry for me.

It’s Friday night now, and I have decided that now is the time to revert back to looking out for Number 1. Número Uno. Me. I am tired now.

Who knew that talking about oneself could be so selfless?

I have always wanted to be a do-gooder. If I was not superstitious of having a bucket list, I could tick that right off. Um, I do not have a bucket list, so I will just say that it feels so much better than a monthly direct debit… Hang on, does that make it just a little bit selfish?

EJB x

P.S. Did you know that the people on the Macmillan helpline are trained nurses? It’s true.

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My Worth

With the exception of the first few weeks of my relapse when I near dehydrated myself due to the constant flow of tears, leading those close to me to believe that I had given up the good fight, I have spent the last two months being the brave old soul that I know and love. The smile you see, is not a fake one, I am committed to finding the best in the situation I find myself in. Even if that situation involves my ever expanding waist. I know I am doing well given my current predicament because my counsellor has told me so. The reason, I believe I am coping, is because when I feel a problem looming, I acknowledge it. Hiding it is unhealthy and let’s face it, I’m unhealthy enough as it is.

In the last fortnight, coming off the back of my dodgy stomach, I have noticed that I am at risk of rocking my battered paddle boat. I’m snappy and my sleep is broken by something that is not related to rolling from left to right or my weak bladder. At the forefront of my mind is money. My impending lack of money. It’s a multilayered mess of stress and uncertainty, both in the short and the long term.

On 30 August, I officially went onto nil pay, which means exactly what you think it means. Or at least I think it does. Until I went onto nil pay, I was unable to apply for the government handouts, which I hope are going to keep me afloat until the end of the latest volume of My Myeloma Tale. Due to my unexpected illness, I was a week late in applying for the three benefits I think I am going to require. At least, the three benefits the various faceless people I have spoken to on the telephone have told me I can apply for. The applications were long and they were tiresome, and despite the fact that all three are now in the post, I am not any clearer about how much money I am going to receive.

Thankfully, I am already in receipt of Personal Independence Payment, which was once called Disability Living Allowance. Since I was granted this money in December last year, I have used this money for the reason it is given to me, to help me live my life around my disability. Until I have confirmation from the Department of Work and Pensions and Islington Council, this money has become my main source of income. A source of income that does not cover my rent, let alone my food delivery or paying somebody to clean my flat.

I am also receiving some sort of sick leave entitlement, but it is not Statutory Sick Pay, which I was recently told I have exhausted. Prior to this, I sought advice from Macmillan and I used my own smarts to research the benefit system. It’s a pernickety system, and having discovered that I am not entitled to SSP, I no longer know if the several forms I completed last week are correct. As soon as I begin to question this, my brain explodes with questions, anxiety and paranoia over what money I will get or not get as a result. It goes something like this:

em>If I am no longer eligible for SSP, does this mean I am entitled to more of less money? Have I committed fraud by saying I am not receiving SSP but I am receiving the equivalent amount of money from another source? Why have I exhausted SSP, because Macmillan advised me that it resets after eight weeks of full time work and pay? I need to sort my pills out. The DWP guidance is unclear, do I need to phone another anonymous help desk number to get an answer, and if I do get an answer, how do I know it will be the correct one? Oh gods, I am tired. Does this mean that I should have applied for ESA instead of income support? If that is the case why wasn’t I informed that I had exhausted SSP and given the necessary form? WHY AM I STILL CONSTIPATED? I need to sleep. Can I afford to buy a can of Rio? Will I have to reapply for everything? Will the money come through before my rent is due on 15 October?

To date I have applied for Income Support via the Job Centre, which required a 45 minute phone call followed by a 14 page form received through my letterbox two days later. The application was also accompanied by two months worth of wage slips, a copy of my newly issued passport, my PIP entitlement letter and letters confirming my nil pay. For housing benefit, the form was a mere 29 pages plus seven support documents including those listed above and my tenancy agreement, my P60 and a copy of my bank statement. Only one telephone call was required asking if my tenancy agreement arrangements would fall within their rules for assistance. Yesterday, I completed my final form, which I requested eight days previously for Working Tax Credits. It was a form, that at this stage at least required no support documentation, but only asked for my financial situation up to April 2014. The forms cost me £10 in photocopying and £2 in stamps. Stamps!

Having spent most of my good hours last week repeatedly declaring my single status, looking at my weak bank balance and putting pen to paper to say that I need somebody else’s help, has surely made me question my existence. When I am not being melodramatic, it just makes me question the choices I have made and continue to make. I do not know how it is possible to fit your personal worth on a form, but that is what I have had to do, and it does not amount to much. And then I start to think:

‘What if I do not get housing benefit? What if they do not approve of the number of tickets I purchased for the London Film Festival even though they are going to get my good cylinder through Cycle 4? What if they do not accept the tenancy agreement? My back hurts. Will I have to apply again for the tax credits to reflect my nil pay? Why was there not space for this on the form? Is my landlord going to put up the rent? How am I going to get to the hospital? I have cancer.’

If all this was not enough, everything else going on around me has become a chore. Answering my phone is a chore. Speaking on the phone is chore. Emailing is a chore. Things that will only take a few minutes feel like they are the equivalent to writing a dissertation, hell, even keeping my blog up to date has felt like a chore. Like many things, I know that the minute I do them, I feel better, but I fear managing them in the first place. I do not trust my mood, which I fear is assisted by the Dexamethasone, Revlimid and Cyclophosphamide.

Think I am exaggerating? Well, I am fortunate enough to be going on an externally funded holiday in a fortnight, and last week, the tour operator said that I needed to get medical approval before I travelled. Not only did this cause me stress, but it caused Mama Jones to worry, which then increased my stress. I know it increased my stress level because I initially ignored it, shouted at my mother and made her mange it. There is only so much my drugs allow me to deal with in a given week. The situation was not helped by the fact that the Medically Trained Person who said that I could go on holiday was not in last week, and another Medically Trained Person said that they did not think it was a good idea. It was yet another thing to make me feel itchy. Fortunately, the approval came through yesterday, but it threatened one of the few things I have that I am genuinely looking forward to.

I am also in the middle of sorting out my long term financial security, and this, above everything else makes me feel pressured and most uncertain about my future. There is nothing I can do but wait and continue to believe that my treatment will be successful. In the short term, I have to make sure that I get out of bed everyday, because this week to date, the inclination to do so has left me. I used to me good a dealing with pressure, but this is not the electricity going off at a campsite full of irate customers; this is my life.

As with the pain in my back, I feel like all of this is taking my focus and energy I should be giving to my treatment, away from my treatment. I have felt worse in the last few weeks than I have in a long time, and I believe that this is only slightly related to my medication. Money is stressful and having cancer does not change that, although in an ideal world, it would do. It’s the reality of having cancer, and right now, I truly wish it was not. Chemotherapy is enough for me.

I will leave you with this thought. According to a handy leaflet from Macmillan, a single, childless person under the age of 34 can get a maximum £350 of benefits a month excluding PIP and ESA payments. This means that I will get between £850-2100 a month; I just have no idea where on that spectrum I am going to end up. What am I actually worth?

That equates to a sleepless night or two.

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Helpful

💶💷💵💴

EJB x

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An Altruistic Act Of Friendship

Attention, Attention, Attention!

It has finally happened.

I am not talking about me losing my hair, that was a week ago, but finally, after months of careful planning and fundraising, the dear sweet, Iana Peppiatt has finally shaved off his hair. His long, hippy like locks are no more. They have been deposited in a plastic bag in my kitchen bin. I believe what started out as the ramblings of a drunken man upset that his friend had been diagnosed with cancer, has ended with him losing his hair safety net and I believe he is far more attractive as a result. As one of the many spectators, privy to Wednesday night’s events commented, Ian is now going to get ‘so much fanny’. Not my words obviously, I would never be so crude.

So, the Big Head Shave was on Wednesday night. All the dignity I unexpectedly saved with how I did my deed was, rightly lost on Ian’s experience. Well, it was for charity after all. As noted, we had spectators, there was a live video feed, some awesome banter, alcohol and I made nibbles. I bloody love nibbles.

I hope Ian does not mind me saying this, but in the hour or so prior to the Big Head Shave, he was nervous. Probably the most nervous I have ever seen him, and I have known him for a good few years. At this time, I will admit, that I could have been nicer to him, but it was just too much fun winding him up…

He started the evening looking like this:

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And ended up looking like this:

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I was given the honours of firstly cutting the mane and then shaving it. I did not relish the prospect of doing this, but my when I started, my, did I enjoy myself. Housemate had to assist a little because I was probably being a little too delicate around the ears. Sure, I also got a little sweaty. The wool dress was probably a bad outfit choice for such a high pressure role involving a number of stray hairs, but I will remember that for the next time I am put in the position where I am responsible for removing one of my friend’s defining features. If you want to see just how much I enjoyed myself, take a peak at this…

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If you are tempted to see more, then the video footage is still available http://www.ustream.tv/recorded/30483575?utm_campaign=www.facebook.com&utm_source=30483575&utm_medium=social… One viewer commented that it was “The best TV ever”. Praise indeed. It is recommended viewing for anybody who thinks that shaving off your hair is not a big deal. It is. And the beauty of what happened on Wednesday, is that Ian did not need to do it. Ian did it to raise money, but also to make me feel better about what has happened to me. Way back when in October when we first started talking about it as I was losing those first few strands of hair and I was terrified, it gave me the strength to get on with it. Watching us reach our target on the Just Giving page, seemed somehow to make some sense of the madness that was happening around me, a madness that I had no control over. On Wednesday, when I watched Ian lose his hair, well, when I personally cut off that surprisingly soft ponytail, it did make me feel better. I do not know whether my feelings were selfish, but it did. Sod the charity, seeing somebody I know go through what I have had to go through, made me feel better and that includes being a witness to his fear beforehand. I found an inexplicably amount of comfort in his kindness and I will never be able to properly express to Ian what his sacrifice means to me. I do not think I would have been strong enough to do that for another person. I constantly think about a conversation I had with some friends in July, when my pain had started and I did not know why, and for some reason I said that I would never lose my hair for anything less than £20,000. How circumstances change.

Regardless of how it made me feel, it was for charity and Ian has smashed his target of £1000 and he is currently sitting on a total of £1345 all for Macmillan Cancer Support, who, I must say have supported me so wonderfully, as part of my Support Network during this hair raising experience. Even on Thursday, when I rocked up to the clinic in one of my wigs, their comments made me feel a little bit more confident in my synthetic hair. So, for the last time, even though our hair is gone, you can still donate. He shaved off his hair for goodness sake! http://www.justgiving.com/shavingmyhairwithEJBones And I do, truly thank those who have donated already. Your generosity has been the dogs bollocks.

I will finish this blog, again with a massive thank you to Ian. Ian who for so many years I have associated with his long hair. Defined sometimes. I have only known him with long hair, but the thing is, ten minutes after it happened, I felt like he had always had short hair. His altruistic good deed, showed me that hair is just hair and that his being and his personally remained in spite of him not having that moulting mane. I guess that this also applies to me, and boy, did that made me feel better. As big of a deal as it is for us personally, it, the hair, did not define us. And that is nice to know.

Ian Peppiatt, you are such a good egg. And for old time’s sake, here is a picture of us in our former glory.

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EJB x

P.S. Donate.

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Sex Education

It is a well known fact that I am a Single Lady. I was a single lady before my diagnosis and I am a single lady after it. It’s probably for the best, if I was attached before my diagnosis, that person would be a bit of an arse if they dumped me when they found out that my body was a mess and I was going to go bald. Somedays I wished there was an actual significant other to help me sleep, comfort me during the dark times and who says night night. Sure, Housemate says goodnight and good morning, but I am not his type, and most the time it is through my bedroom door. I cannot see amour happening any time soon, for I do not go anywhere and let’s be honest, I have bigger fish to fry. For the day love does return to my life in a requited form, Macmillan Cancer Support have thoughtfully and kindly produced a leaflet. It is no laughing matter, okay?

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Unfortunately, there is not a chapter in here about Myeloma and living with bone lesions and a squishy spine. I assume, My Myeloma and me just have to read between the lines.

One thing this leaflet is keen to point out is that intimacy is important. Stroking. I think that was kind of a given, but it’s good to know that it is still important for those of us suffering from cancer. December is usually a good time of the year for me in this regard, but not this year. The Wan Birthday curse is over. I will just have to snuggle up to EMan (the teddy bear) and at least this year I also have my pregnancy pillow to recreate having another body in my bed. Perhaps I should purchase a hot water bottle.

I understand that is generally considered uncouth to discuss such things publicly, but I can do what I want. I have cancer. Dear Dad, do not read any further, you will not like it. Plus Macmillan Cancer Support think it is a good idea, and I do what they advise in most circumstances. Though I did stop myself from picking up the guidance on an early death yesterday, we are not there yet.

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So, let us start at the very beginning. Below are some useful tips for the Singles.

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Questionable fertility? Check. Reduced lifespan? Check. A change in body? Check. I’m a catch. I’m a catch! Is anybody interested? If you are, at least you know in all likelihood, you’ll be set free from the commitment by your 60s. Maybe not, there could be a miracle. The allogenic transplant can be a cure in some rare instances according to the gospel of Wikipedia.

If we can get by that hurdle, this considerate guidance is rather helpful. Do take note.

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This will clearly require a change in tack on my part.

I don’t want to make anybody take pity on me, but I think the third paragraph is noteworthy. I have interpreted it as therapeutic. I am pretty sure I could still produce a good snog when my mouth does not taste of tin. That’ll be next week by the way.

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That is it for now, there are more pages, but I have picked out the sections relevant to me.

As ever, I am pleased to me able to bring to you the realities of being a twenty something with cancer. Desperation.

EJB x

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Uplifting Decor 🎨

When it comes to decor in the Macmillan Centre, I think they have gone for mood enhancing colours.

On the second floor, where I visit six days out of every 21 for my treatment, there is a lot of red. I think they were hoping to create a warm, welcoming environment full of ‘happy’ reds and not the sort of imaginary one would find in ‘Enduring Love’ . For those of you, not familiar with the book or concerned that I am under the influence of this morning’s diazepam, do not be alarmed. I think about this all the time, so it cannot be gibberish. Bad reds conjure up images of danger, blood and death. My nurse today described it as an angry colour.Great for a chemotherapy floor and its patients.

Fortunately, I fall in the happy camp and as I sit in the reception area, happier than I was when I entered the building because I was just complemented by a male
on my appearance, I look at the inspirational, slightly cheesy art and I feel comforted. I am now sharing it with you. Some pictures of a floor.

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The Macmillan Coffee Mornings

Today, in offices across the country people participated in what Macmillan Cancer Support billed as ‘The World’s Biggest Coffee Morning’. Given my recent diagnosis, my office was one such office who participated and I am truly thankful to Laura, Cathy, Middlesborough and all the other bakers who contributed and helped to organise the event to raise money for Macmillan. I am also truly thankful that my body decided to have a normal immune system, so that I was able to get myself to the office and enjoy a cuppa and cake with them. The fact that my body was behaving (ish, I have no idea why my pain is worse this week) meant that I was able to show my gratitude in person, and, ssssh, I had spent the week willing my body to allow me to attend. I even made my own little contribution to the baked goods with an overly crumbly banana and chocolate cake.

Since my first day of treatment, the support I have received from Macmillan has been incredible. Before I entered the Macmillan Centre at UCH, if I am honest, I really had no intention of using the Support Centre, I don’t know why I thought this, maybe I thought that I had enough support already. Now, I find myself going in to see the suppor workers whenever I am in the Clinic. My friends have been there with me and one described it as a ‘sanctuary’ and for me, it is. At least once a week, I find myself going in there for my own little coffee morning, except I don’t like coffee so I have a cup of tea instead. The people who work in there make me feel better, they are now another part of my immense Support Network. I have taken full advantage of the services they offer, which includes relaxation therapies, wig fittings and the scarf tying lesson. My counselling is also organised via Macmillan. So, essentially, what I am saying to you, is that Macmillan deserve all the money they can get. They make my days better.

Back to Our Coffee Morning and to other people who make my days better… The morning was a roaring success. So many people came to the ground floor, ate cake, drank tea and donated. It was also a perfect excuse for me to catch up with my colleagues and anybody or is anybody knows how much I love a chat and the opportunity to talk about myself. It was brilliant and crucially, they achieved what they set out to do and that was to raise money Macmillan. The final total was a rather respectable £372.04 and a franc. Good work and thank you. I really need to find another way of saying thank you.

Now, I kissed a lot of people today. All I am saying, is, you better have been healthy.

In case you do not believe me, below is photographic evidence of the super fun morning. Yes, I have become a person who enjoys a coffee morning. I blame the myeloma.

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Meanwhile, in Lincolnshire….

Big Sister and Mamma Jones also organised coffee mornings in their offices. Their events even featured in the local paper. Get them. Big Sister raised £115 and given the size of her office, this is more than credible. I don’t need to thank them, I like to think they intrinsically know what it means to me. Check out this cake display:

Are You Having A Scarf?

As you can imagine, or indeed, if you are a regular reader of this blog, I am somewhat preoccupied with my diminishing locks at the moment.

Wednesday was horrific, I wrote all about it, but today, I have tried, and I believe succeeded, to some extent, to see the current situation in a more positive light. Yes, I am losing my hair, but let us not forget, I am still undergoing treatment against My Myeloma. And said treatment, may just be working. I bloody hope it is. I cannot lose sight of my target. My one and only target.

My blood count came back today as normal. When I say normal, in the words of Haemo Dad, my Full Blood Count was “normal for a normal person, not a person with cancer”. Even my bloody calcium, the pre diagnosis indicator, the thing that got me admitted to UCH in the first place, was normal, but then, that has been normal since I was released from my cell four weeks ago. I am trying not get ahead of myself, I can’t. I know that my paraprotein is the important thing and I have no idea what he is doing right now, but a normal person’s blood results? Well, I think I can live with that. My fingers are crossed that this sort of thing will continue, especially next week as we move once again into the potential ‘immune system crash territory’. No snogging post next Thursday. Damn. Actually, perhaps I could just check for inflection first. It’s only fair others get to play with my thermometer as well…

But, really, let’s get back to my hair….

Yesterday, I paid thanks to the onsite Macmillan Support Team, and after 40 hours, I can honestly say that they made my day better yesterday and they made my day better today. I don’t think it is possible to expect more or receive more from such a service. Why were they good today, I hear you ask? Well, after today’s treatment, chemotherapy treatment, that I now do not need to have for another 17 days, I ventured to the ground floor where the centre is located with my friend Zeb, and played with some scarves. Trust me, it proved to be more fun than it sounds.

As with actual hair, I am beginning to learn that there are several things a woman can do to make themselves feel more attractive when they do not have hair. Prior to My Myeloma, I was also preoccupied with looking more attractive, so why should this be any different? As I said yesterday, My Myeloma does not define me. My vanity on the other hand….. (FYI, pre diagnosis, I may have had an addiction to 25+ weekly pints , which I see now was something of a hindrance in my quest for long lasting sexiness.)

I have already listed how I plan to look more attractive post hair, so do not fear, I have no desire to participate in any form of regurgitation right now. Just rest assured, I have plans now. I feel some of my control coming back. I know I will lose it again, but for the time being, I have hold of some of the reigns. That includes attempting to not think about what is happening on my head until at least Sunday. It’s a sanity test.

So, in the interests of not regurgitating and preventing further insomnia, below are some photographs of the scarf fitting session. Warning! I will not have hair when I attempt to rock this look for you next, I need to buy some decent scarves, for I am not really a pink scarf sort of girl, oh, and I have already forgotten the tying techniques. I am sure that as this time approaches, I will play my damsel card and all will work it itself out in the end. Thanks to George on Wednesday, I have also started seriously dreaming about the turban. I can make a turban sexy. I am ‘hawt!’ Make no mistake of that fact you Fucking Myeloma. Make no mistake.

Best wishes, EJB

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This Is Not Paranoia

This morning I said that I was shedding. The hair, my hair, was moulting. As my day progressed, it quickly became apparent that this was indeed the case. Worse still, it became clear that my hair is now officially falling out.

This morning I hoped that I would have another 4 weeks of my luscious, long locks. I do not think now that this is the case. Realistically, this is not the case. I am not hoping for a miracle. I am banking my miracle for my survival.

Today has proven to be the toughest day since my diagnosis. I have always known that there was a chance of me losing my hair. I have been preoccupied with this thought. I expected it. I just believed, wished, that I would have at least 3 months before I had to manage this hurdle. As I said earlier in the week, everybody experiences their chemotherapy differently and for some reason, my chemotherapy, my treatment, has decided that now is the time for me to go through this physical metamorphosis. Right now. A friend asked me today why, despite everything else I have faced in my battle thus far, losing my hair is, for the time being at least, proving to me the most difficult obstacle. My answer was simple. With the exception of the stick and the limited mobility, I do not look like a person who has cancer. Going bald, losing the hair that I have had since I was born, and potentially other hair as well if I want to be graphic, will make me look like I have cancer. It will make me look sick. This is physical. This is visible for all the world to see, well the hair on my head and my face anyway, I am no lush. My Myeloma, to some extent, I could hide from the public. I cannot hide losing my hair. It’s falling out and everybody is going to see that. You just need to look at my kitchen floor for this evidence. I have to live with this and I have to manage this. And after today, I know that I will. Many people have been through this before me and I know that more will follow in my wake.

There have been endless people on hand to support me today. From the pragmatic Housemate who said exactly what I needed to hear this morning by saying that this does not need to be mollified, to Big Sister and Mamma Jones, to the wonderful Macmillan support team who told me it was okay to cry and be angry and who said that I did not need to be the positive rock I am trying to be everyday, to my dear George who sat with me during my wig referral and reassured me all the way through the afternoon and beyond that I could deal with this, to everybody I spoke to on the phone and to my friends who came round tonight and cooked me dinner, and to me, who somehow found the inner strength to wash my hair this evening and witness the damage done to my follicles.

I have cried today and I am angry. Crucially, and I probably did need people to tell me this, I know that it is okay for me to feel this way. Cancer is not fun. Today, it was perfectly acceptable for me to cry in public and in private. The situation is what it is, but I am entitled to feel the injustice and outrage.

I have plans afoot, of course I do. This is me writing, thinking and planning after all. I spent £180 on costume jewellery and a further £120 on Mac Cosmetics this evening. Just so I know that I have more tools to enhance myself despite having no hair. I have, as I mentioned earlier had my NHS wig referral and that will be ordered tomorrow. Next Tuesday, I am going to go and try on a variety of wigs so I can get used to my face decorated by hair that is not my own. Tomorrow, I am going to have a lesson on how to tie a headscarf around my balding head. I intend to cash in or ask for every favour under the sun, just to make this transformation that little bit easier for me. The people in my life should best prepare themselves for this now. There is a chance, given how emotive I find this subject, that I am going to be unreasonable. I can only apologise in advance for this.

I have no idea how I am going to feel as this loss progresses. I have thought about the endless scenarios and discussed them as well, but this is unchartered territory for this particular Jones.

The temporary loss of control terrifies me, but I am confident that I will regain my control when it is necessary for me to do so. That much I know about me.

So, I end tonight’s blog, at a loss, in more ways than one and some photographs, so you know and more importantly, I know, that this is not paranoia and I am losing my hair.

A means to an end.

EJB x

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Bad Comedy

I have a problem and it is not Multiple Myeloma… I think I have regressed to my childhood and I am now obsessed with the Police Academy films. Not Number 7 – ‘Mission to Moscow’; I still have standards. That film doesn’t exist, for the same reason ‘Indiana Jones and The Crystal Skull’ does not exist.

The rest of the Police Academy films though? Awesome. Multilayered and complex screenplays about good overpowering evil, examining our personal responsibility to challenge corruption at all levels in order for us to maintain a decent and healthy society. The questions of morality addressed through the first six films, is unparalleled within the American comedy franchise genre. The writer/s and producers achieve this with such subtly and precision, it is almost subliminal.

Maybe it is time for me to see that MacMillan Counsellor….

Live Odds

Last week, I said that I had some good news that I was waiting to share with you. I think I can share it with you now, on the condition that once it is out there, that it is not discussed again for at least three months. This rule is for me. As it turns out, the good news is once again bittersweet. Maybe bittersweet is the wrong word. Scary and surreal. The news is scary and will involve me making a decision, that in my 28 years, I never thought I would have to make.

The reason for my delay in sharing it, is that I had to discuss the consequences with my doctors, and I had my first trial appointment today. The news is amazing and is against some significant odds… Last Thursday, my sister received a call from UCH to inform her that she was a match to my stem cell. There was a 25% chance of this being the case. I had not allowed myself to even think this was possible because the odds were so low, and I really have been suffering in the luck department of late, and when Big Sister told me last Thursday morning, I cried with relief and I cried tears of hope. It seems that my life now rests on a careful balance of odds and statistics. It is not fair, and I am allowing myself to dwell on it today, but when I wake up tomorrow, I know that I would have moved on. It is imperative to my well being and thus my recovery that I do.

A match to my stem cell means that I, hopefully, will be eligible for a donor stem cell transplant. I also discovered today that Big Sister, who is quite simply amazing, I may have mentioned this before, is not only a match, but the best sort of match for me. A negative and a negative. There are more medical terms involved, but I did not write them down, and as I said yesterday, my short term memory is somewhat lacking because I am a walking pharmacy.

So that is the good news.

The bad news, or the less good news, is that we cannot even consider this stem cell transplant until at least 90% of my MM has gone. The crux therefore, is that I have to continue with my current treatment and hope that it works. There is approximately a 50% chance of the trial working. These odds cannot be more definitive because it is still in trial. If it works, I would then be eligible for the stem cell transplant. If it does not work, then I will have to undergo another treatment programme before it can be considered. Yet more odds. I am not even considering the odds involved smashing this MM into hibernation, I daren’t.

My energy now then, as it was yesterday, is successfully getting through my trial. It has to work.

The donor stem cell transplant is called an allogenic transplant, which was described to me today as a ‘high risk procedure’. The details are sketchy, because we need to wait for the Myeloma to go before I meet with the transplant team and find out more, which will be in at least three months time. It is for this same logic, that I only discovered today what the transplant involves, the doctors did not want to get my hopes up when I was in hospital. What I did find out, and this is the scary, scary part, is that there is a 10-20% chance of mortality with this procedure. Put it another way, this procedure, historically, can result in a 10-20% chance of death. Equals my death. The risks lie in what happens to my immune system in the 6 weeks I would have to be in hospital undergoing the treatment, and the three months afterwards as my body takes to the transplant, and the odds of me rejecting the donor stem cell. Alternatively, there is a 80-90% success rate. Perversely, if successful, the transplant will give me the highest odds of a long remission before my next relapse. This means it will give me the best odds of leading a normal life. A life where I can carry on where I left off 4 weeks ago. I can meet a nice man and get married. Or live in sin. I am not fussy. The man could be a farmer and we can have special cuddles in the morning in the pantry after he has milked the cows and the kids, I may have (yet more decreased odds) have gone to school.

Understandably, I have thought about this all day and I have discussed it with my nearest and dearest. All have said, rightly, that everyday there is a chance of people dying. Every time somebody leaves their house. Or even in their house. As Big Sister said today, there is a chance of me completing the trial successfully, without the stem cell transplant, crossing the road and being hit by a car. Odds and chance. Odds and chance. Odds and chance. If I think about it this way, the odds I was given today seem less daunting.

I do not intend on thinking about all of this again for a while. Two days ago, I thought my life would return to normal by Christmas; this is likely not to be the case now. I will be going on half pay, I really am ever the pragmatist. So I have set myself a new milestone for success. My 29th birthday in May. That’s the new goal and by hook or by crook, I am going to see that birthday and I am going to have one fucking awesome party. I promise you that. I am promising myself that. For sure.

Bloody mortality. Bloody odds. Bloody chance.

I don’t want my life to rest on odds, but for the time being at least, they are going to feature. I am just going to have to try my damnedest to improve these odds, by any means. That is the way this goes. That is where my positivity comes in. Rest assured though, when I wake up tomorrow, my focus will return. My glass will be half full. My immediate focus will return to getting rid of this myeloma, as it was yesterday, and as it has been since I was diagnosed 27 days ago.

All of this, so that in three or four months time, my Big Sister can give me the best chance of living and these are the odds I like.

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