Welcome to the breasts, balls and bone blood gang

We met at a Mindfulness course at the Maggie’s Centre in Nottingham. I will write separately about the course, what I got from it and how I use mindfulness in my life these days – that deserves a whole post to itself.

One thing I do want to mention now though was the burgeoning of a new support system and friendships with some of my fellow course participants and a renewed connection with the Maggie’s Centre, which I had not visited since I stopped receiving counselling last year.

Some of the course participants decided to continue meeting regularly to practice, support and encourage ourselves and each other in using mindfulness along our individual journeys of living with cancer, and when the time comes, dying too I guess. Some members of the group have advanced, secondary or terminal cancer diagnoses. Whatever name is used to describe their condition, they are facing the likelihood of death sooner than the rest of us.

Two of the group are Rebecca and Uwe (neither of whom have a terminal diagnosis). Uwe is an older German man, who is short and stocky, with large round glasses that give him a slightly gnome-like look, without the regulation beard. He has an endearing vulnerable quality, which people respond readily to, as have I. He is probably the most familiar with and most committed to mindfulness. We have become close friends from hours sat around the kitchen table at Maggie’s sharing and revolutionising. Bloody anarchists!

Rebecca is younger than me, intelligent, passionate, creative, interested in so many things, and talkative. Can you see why we might get along? She has had a very rocky journey through cancerville, which I won’t go into here, but suffice to say, we have a similar attitude to living, dying and how we experience and respond to what happens in between. She has also been leading the Maggie’s singing group, which is going from strength to strength.

Rebecca has recently suffered, along with but probably entirely separate from the many complications of cancer treatment, a slipped disc. She spent more than twelve hours in pain awaiting an air or road ambulance to take her to hospital three weeks ago.

While she was well-looked after during her nine night hospital stay, they messed her around terribly when she was ready to leave – around day seven. Again she had to wait unnecessarily, this time for a Senior Occupational Therapist to assess her needs for returning home. This whole issue also deserves its own post, but it’s not my story, so it won’t happen here.

Fed up and frustrated, she walked… with the aid of crutches and her husband, out of that damn place, and went home on Wednesday night. Well done Becca! Patients taking charge!

Meanwhile, back at home, using a borrowed bed in her living room and various OT appliances, she made herself as comfy as possible, but was getting increasingly bored. Time for Uwe and I to go visit a couple of Sundays ago.

Armed with a large bar of Cadbury’s fruit and nut chocolate, plus a Terry’s chocolate orange, we turned up to find Becca moving quite well. At one point she even went upstairs and down again, I was well-impressed.

pomander 1When I visited her in hospital a few days earlier, we had spoken about creative stuff she could do while she was stuck at home. I came up with the idea of making orange pomanders, which I make most years, but actually haven’t done so this winter, so far. So that evening, I took oranges, cloves, ribbon and little skewers and handed them out. I showed them how to get started and let them at it. Meanwhile, I knitted.

The room was cosy, the tea flowed, sometimes made by me, sometimes by Becca, there was music and ambient lighting. The atmosphere was so lovely, I felt like I’d fallen into a Victorian Christmas scene or something.

And so we chatted gently and each did our creative thing, with little pauses of quiet, then someone would speak up and we got to know each other a little bit better. It was a special time and a very unplanned period of mindfulness that just happened because we were in the right space with the right people. Thank you both for that and for allowing me tell our tale. I’m looking forward to meeting up again. Hopefully in the new year, Becca will be up and about and we can meet up at Maggie’s again and continue our mindfulness practice.

Between us, we have breast cancer, prostate cancer and myeloma… Thus breasts, balls and bone blood!

Bureaucracy – An Update

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

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

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

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

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

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

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

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

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

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

EJB x

Acknowledgements

WARNING – This blog contains some uncharacteristic musings

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

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

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

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

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

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

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

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

I am very pleased to have met you.

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

EJB x

Share and Care

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

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

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

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

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

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

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

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

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

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

EJB x

The Good Fight

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

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

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

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

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

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

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

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

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

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

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

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

Isolation + boredom = insecurity + paranoia = tears + sadness

☔☔☔☔☔☔☔☔☔☔☔

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

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

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

EJB x

A pity party? No, a damn good myeloma party!

eecards pity party

A pity party is one “in which you spend your time feeling sorry for yourself
and whining endlessly about how crappy your life is.

(as defined by Urban Dictionary).

It would be very easy and understandable for any of us living with myeloma to have a pity party for ourselves from time to time. But, even with three myeloma patients in the same place, there was none of that going on in a sleepy Hertfordshire village a couple of weeks ago. Au contraire…

A new and previously-only-online blogging friend, Deborah moved from having smouldering or asymptomatic myeloma to full-blown proper serious myeloma on 7 January this year, just 3 days before her 50th birthday. I totally understand the devastation she felt, made so much worse by coming at a time of expected celebration.

Since then she has been in treatment, which has led to remission. She recently harvested her stem cells for a possible future transplant, but she is on a trial to see how long remission lasts following initial treatment before needing a transplant, so for now, her stem cells are in storage.

All would be well except that the treatment she had also caused peripheral neuropathy (a common side effect of Velcade/Bortezomib). So although she is in remission, she is now having to learn to manage intense pain.

Fortunately, she is getting a lot of help from pain specialists at the local hospice. Amazingly to both Deborah and myself, she found that hospices are not just a comfortable, caring place to die, they offer other services to enable sick people to live well with cancer and other life-shortening or terminal conditions.

One of the things that has kept her going through the first nightmarish six months of this strange unbidden journey has been the idea of holding a belated, summertime 50th birthday party and of using it to raise awareness of and funds for Myeloma UK.

Deborah, her husband Colin and sister Kate, along with generous and energetic friends and even complete strangers worked so dedicatedly to pull off one of the best parties I have ever been to.

Deborah and Colin are fortunate to live in an idyllic little farmhouse, with a barn and open space they can use, overlooking open fields and countryside. And because they are such warm generous people, they clearly attract the same. It was this generosity and warmth that made the party so special.

IMG_1710From the moment I arrived, I felt like an honoured guest. Deborah was delighted that I had come and welcomed me with a big hug, while Colin rushed off to fetch me a cool drink. Meanwhile, their best friends, Sue and Angela took charge of me. They let me stash my picnic in their mobile home’s fridge, took me and my bag up to the main bedroom that Deborah and Colin had generously given over to me for the night (they would be sleeping in their mobile home) and brought me to join them at their table. I was not going to be left lonely, that was certain.

IMG_1730Another myeloma blogging couple, Lorna and Mike were there. Mike has myeloma, Lorna mostly writes the blog. We’ve chatted online for some time and had a couple of failed attempts at meeting up over the last few months. It was great to finally meet them, as they joined me under the friendly auspices of Sue and Angela. We shared the table with other charming people: Colin’s sister Lorna and her family and Sue’s sister and husband. It was a gregarious little crowd who made me feel at ease almost immediately.

The effort that had been put into making the place look inviting was evident. A number of local companies had provided their services for free, to make it a night to remember and to help raise as much money as possible. There was pretty bunting everywhere, strings of fairy lights draped down the back wall of the barn, a disco ball on the ceiling and a stage for the musicians, all surrounded by large hay bales for people to sit on. Not to mention a variety of chairs and tables, covered in red checked gingham tablecloths placed around the grass space in front of the barn. It could have been a scene from a Country & Western movie, if only there were a few cowboy hats and spurs in evidence.

We had all brought picnic food as instructed, which as the sunlight faded, we shared, along with jugs of Pimms and a bottle of Prosecco. Later in the evening, Lorna’s home-made Limoncello also made an appearance, which might account for the look on their faces in this photo.

The music began with a singer called David Mills, whose fine voice and great choice of classic songs managed to get all ages up dancing. Later The CC Smugglers, who were also playing for free, kicked up their heels to give us a very exuberant set too. But the pièce de résistance was when they were joined on stage for a very special song by a celebrity…

Some of you will recall a song from 1995 by Pulp, called Disco 2000, which features a girl called Deborah:

“Oh, we were born within one hour of each other
Our mothers said we could be sister and brother
Your name is Deborah, Deborah
It never suited you.”

Yes, this is the very same Deborah, who grew up with Jarvis Cocker, the lead singer of Pulp. She hoped he would turn up, in fact in the weeks leading up to the party, she rarely failed to mention her hope in her daily blog updates. But until he appeared, she wasn’t sure if he would come. However, he not only turned up but quickly taught the Smugglers the chords for the song and leaped onto the stage to join them in singing it to Deborah, who was absolutely thrilled to pieces. The rest of us were pretty wowed too.

As well as good music and a delightful setting, there was a raffle with some very attractive prizes. I seemed to be sitting at the lucky table… well, lucky for almost everyone at the table. One couple won VIP tickets to see Elton John in concert, another received tickets to Leeds Festival, along with an unusual piece of jewellery.

But Lorna and Mike hit the jackpot! They not only won a patio container full of geraniums, an afternoon at a health spa, but most impressively two VIP tickets to the V Festival with Beyoncé headlining. Gallantly they returned the spa voucher to be raffled again, but there was no way anyone could have persuaded them to give up the V Festival tickets. They were absolutely thrilled and everyone at the table was delighted for them.

As the evening crept into night, and the alcohol crept into bloodstreams, it began to get a little calmer and Colin lit the bonfire, which many of us simply sat and stared at lazily, when we weren’t frantically brushing away low flying sparks blown in our direction by a mischievous breeze.

Very gradually people started to leave, but those of us who were staying overnight stayed up chatting near the fire, until finally weariness got the better of us and we drifted off to our respective sleeping quarters.

The following morning, I shared breakfast with Sue and Angela and we talked for hours, sharing life stories and setting the foundations for what I hope will be a good friendship. Most people had left by lunchtime, including Sue and Angela, with promises to stay in touch. So in the afternoon, in the garden, there we were, the myeloma crew… Deborah and Colin, Mike and Lorna, and me.

It was good to be able to talk on a deeper, more serious level about our feelings about having myeloma or being the partner of someone with myeloma, our hopes and fears, even some denials. I often chat about our situation with my friend Wendy, I sometimes participate in online forums and I’ve had numerous conversations with transplant buddies at clinic, but this was the first time I’d been part of an accidental ‘myeloma support group’. It certainly wasn’t a pity party; even though we spoke about dying, we are all so much more aware of our desire for and need to live in the moment.

myeloma_uk

As well as being a wonderful evening with lovely people,
the party raised over £1,500 for Myeloma UK.
I know Deborah is deservedly proud of this achievement.
Well done everyone!

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L to R: Deborah, Me, Lorna, sister Kate, Mike. Colin was next to Deborah but our photographer managed to cut him out of the frame. Sorry Colin!

And here are a few more photos from the party.

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How Not To Greet A Myeloma Patient – Part II

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

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

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

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

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

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

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

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

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

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

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

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

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

EJB x

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

Humming along

Some days the world just seems to have it in for us. Today I woke up to a strange noise. It was the noise, a difference in the room ambiance that waked me. It was an angry little hum that penetrated my skull more than flowed through my ears. At first the noise wasn’t located, it seemed to eminate from everywhere at once. But cocking my head and walking in a circle finally gave it away. It turned out to be the Comcast DVR. I suspect that one of the disk drives inside it had developed what disk drive manufacturers call a “sticktion.” That’s a very stupid way of saying the bearing was frozen, thus preventing the disk from turning. The hum was the protest of the electromagnet of the drive motor. Wow, what a really annoying noise.

I turned the box off and was surprised when the noise continued. Its like flipping a light switch off and the light stays on anyway. Everything you know tells you this is wrong, a warp in reality. Albert Einstein be damned. I got a flashlight and confirmed that a black hole was not forming inside the DVR. I already have one Comcast black hole; it sucks the matter from my wallet insatiably. The last thing I need is one that eats the contents of my house. I moved a few knicknacks away just in case. I tried the time tested repair of smacking the DVR box. That caused the hum to warble uncertainly, but then it regained its confidence and went back to humming its single note tune. I had no doubt that this cretinous piece of technology had its origins in China. I was partially right, it came from Taiwan. That’s China with a paint job.

I yanked the power cable from the rear of the device and the hum stopped. Peace once again reigned and a rainbow appeared, arcing from the pillow on my bed over to the bathroom door. I decided that it was more of an arrow than a rainbow, suggesting that the toilet might be a good place to store the faulty piece of crap. If only my toilet could produce a nuclear class flush.

I called Comcast support to request an exchange. I explained that the unit was making a loud and annoying hum and that I had to literally unplug it to make it stop. The person on the support line groveled and apologized that my life had been catastrophically ruined by such an unfortunate disaster. I was then instructed to turn it on and proceed to the settings window. I inquired as to whether there was a setting which was able to turn the hum on and off. They said no, but there were steps that must be taken to troubleshoot the problem. “But, the DVR works just fine.” I said. “It just makes this awful hum.”  I could have sworn the support lady made a clandestine ‘harrumph’ before getting a patronizing tone with which she asked me to please follow instructions. I said okay and pressed the menu button. Being unplugged, of course, there was no reaction from the DVR. I reported this to the support lady. Fight fire with fire, I always say.

There were a few moments of silence after which she announced that upon checking my line, the unit was not showing up in my connected equipment list. “Your DVR is malfunctioning,” she announced as though she’d just discovered a cure for Ebola. “You need to take it to your local Comcast office and exchange it for a functional model.” Wow. Those support people are on the ball, aren’t they? She said that she would approve the swap and I could make it at my convenience anytime in the next two weeks. I thanked her for her wisdom and time, hanging up as she asked if there was anything else she cou…

There was a line at the Comcast store and I felt smug about being able to st on my scooter instead of shifting my weight from one foot to the other like everyone else in the line. I quietly read a book on my Nexus 7, occasionally bumping forward on the control joystick to move with the pace of the line. It took about 20 minutes and then it was my turn. I explained to the lady that the DVR was making a loud and annoying hum and that support had approved my swapping it out. She looked at me funny and explained that I hadn’t needed to call support. For something like this I could just bring in the offending unit and swap it out.  ”Okay. I said, “I’d like to swap it out.” She beamed at me as though I’d just graduated medical school and had proposed to her ugly and always-whining daughter. In a very David Copperfield like move, she turned a circle and my old DVR disappeared and a new one appeared in its place. I snatched it from the counter and plopped it into my lap before she could invoke some hidden Comcast policy that would incur a fee. I spun and rolled out the door as she thanked me for using Comcast and asked if there was anything else she cou…

At home I plugged the device in and turned it on. According to the guide, I had two available channels. Since I have a Digital Premiere account I pay a mere twelve thousand dollars a month for, I was disturbed by the vast emptiness of the channel guide. Then I noticed the little card that said to register the device I should go to a Comcast website and log in with my username and password. I did so and it told me that I had new and unregistered equipment and that I should activate it NOW. I thought that if it was so important that they had to yell about it, they should damn well activate it themselves. For crying out loud, I just went to the Comcast store and the system recognized the device as legitimate, why did I have to involve myself in a registration process. What a pain. I had all these step to perform. It asked me “Activate this device? Y/N” and I clicked “Y.” The DVR immediately began to work, I could tell by the full TV guide and the fact that a QVC channel immediately tried to sell me some freshwater pearls. I grabbed the remote and switched to the Discovery Channel where Flo was trying yet again to get interested in Progressive Insurance. Ha! I had Progressive but switched to Geico when I discovered they could save me just over $500 a year. Flo was sure that Progressive could save me hundreds if I was to switch to Progressive. I wondered how many times I would have to switch back and forth between the companies before they had to start paying me to use them.

I sighed contentedly and shut off the television. I wasn’t really in the mood to watch the tube, I’d only wanted to make sure it was ready to go when the time came that I did want to give up a few brain cells in trade for amusement. I pressed the OFF switch and the screen went black.

Then the DVR started to make this annoying humming noise.

 

Mums

Yesterday, as I waited in the clinic for my appointment I was greeted by an uncommon sight, another young person. I should be more specific, there are always twenty somethings around, the nurses for example predominantly appear to fall within my age bracket. You will also find a lot of visitors who were born in the 1980s hanging around with their loved ones. You do not see many young patients. Yesterday however waiting for treatment with all the other cancer patients, was a young man, in his early twenties, sitting with his mum.

I did a lot of waiting yesterday, so I used some of my ninety minute wait for treatment to watch them. It passed the time. He didn’t have to wait as long as me, and before he was called through to what I call the Cannula Bay, the young man and his mum were partaking in some jovial conversation. He was mostly playing on his phone and she was smiling, looking like a mum with a bag of food products. He was wearing jeans, a t shirt and a nice loafer. He looked normal and were it not for some bandages on his arm and the slab of pills I saw him take, you would have thought that his mother was the patient because in the law of averages, that would be the most likely scenario and the one I see every time I am in the clinic. After half an hour of watching them and a packet of Skips later, the young man received the enviable tap on the shoulder and was called through to the Cannula Bay. He got up, walked through the reception chairs and gave his mum a quick tap on the shoulder. His mum watched as he walked out of sight into the Bay, and then as soon as he was seated, she turned, looked at the red and white floor with the inspirational quotes and began to cry.

I then hijacked her private moment, and also started to cry.

By the time the young man returned, I was still waiting, but his mum had composed herself and produced a muffin for her offspring and they made their way to the big red comfy chairs at the back of the floor. And there they sat and remained for the duration of my treatment, occasionally breaking from speaking to each other to speak to the Medically Trained People. He was receiving drugs via a cannula and all the while, the mum held a sturdy smile on her face and continued to produce food products as and when they were required.

I do not know how mums do it.

I know that cancer in a child is not the worst thing that can happen to a parent, but it is not exactly a celebration. I do not think a mum can prepare for this. There is not an insurance for this and I sincerely hope it is not something parents envisage. Future, should only be for the good stuff.

A mum should not think about having to care for their child with cancer, let alone have to care for their child with cancer.

This isn’t supposed to happen.

First Post in 2012

I don’t like that I’m so inconsistent in my blogging here. My intentions were good when I created this blog. They remained good throughout the years even. But I just can’t seem to get to it on THIS blog.

I started out with three blogs (on three different locations). My purpose for each blog was not clear…to me. I thought I’d had a plan in my mind, but I really didn’t. I’d hoped that in time it’d just work out and I’d figure it out. It hasn’t happened. Yet.

What mainly keeps me linked to this blog is that every once in a while I receive comments that touch my heart, inspire me, or plain old get my attention. Last November I made friends with a wonderful lady who had commented. We send emails back-and-forth periodically (she’s better at it than me). (NOTE TO SELF: I need to not only write her, but get pictures together and send her a package. Maybe I can accomplish this by July.)

I also receive a load of spam associated with it. Comments do not show unless I approve them. There are options for the comments to approve, trash, or assign as spam. For some reason, I suddenly started receiving lots of spam comments. Over the years I’d accumulated over 1500 spammed comments. For some reason I deleted them. I think I opened the gates for those spammers to spam me again. Perhaps in time the spam will once again slow down…once I respam the spammers. *sigh* I don’t even understand what the purpose is for spammers, but they must be really sorry people/groups.

Anyway — here is my first offical post for 2012. Thus far my MM is remaining dormant. I am not taking Revlimid or any other treatment for it. As I explained in previous posts, my doctor told me that the current regimen is to place MM patients in partial remissions as I am in, on a maintenance dosage. It’d probably be Revlimid and I don’t know if it’d include a steroid or anything else. Since I’ve maintained very well without it for over four years, he’s leaving well enough alone.

Again, as I’ve stated in previous posts, I do have spinal cord damage and have major issues with it. The tumor I’d had at my T8 caused my spinal cord to atrophy. I don’t function well from about the waist on down. That includes walking and even moving my legs and feet, let alone eliminating (urinating and bowel functioning). With not functioning well comes extreme discomfort and pain. There’s a difference between the two and one is not any easier to cope with than the other. That might be a good topic for another entry in that maybe I can reach another individual dealing with the same thing.

While frankly I hate having to deal with this spinal cord damage because of the pain and discomfort, I think just as challenging for me is that I do not know of one other individual in the same predicament as me: MM’r in partial remission & doing fairly good but has spinal cord damage with similar effects as me. As weird as it sounds, I envy women who get breast cancer as opposed to this. They at least have common issues and can bond. They can relate with what the other women are experiencing. Even other people with MM seem to have much in common. At least it seems that way to me. I’ve not come across another individual who got MM, went into a partial remission and doing relatively well considering the MM progression–but then have to deal with the crippling & demobilizing effects of damage to the spine. My spinal cord damage does seem to be getting worse, too, which is a little alarming to me. I get around, drive to the store and to most doctor appointments, and such – but it is difficult. And it’s getting more difficult. But I still can do it. It would be so helpful to talk to another in the same predicament.

I’ve checked out support groups, asked the nurse practitioners, doctors, and other medical personnel I come in contact with if they knew of one, but to no success. I haven’t tried in a while, so it may be time to search some more.

I do belong to a MM support group and I highly recommend anyone with MM to find one. The one in my area is a great group. They have bbq’s and special meetings throughout the year and are supportive of each other. Over the years I’ve lost contact with them. It’s weird I say this as I don’t attend the meetings – but I am on their mailing list. It’s like I’m a lurker…lol. They’ve just started sending out meeting minutes. I had attended only a few meetings at the start but discontinued when I started having problems getting around. They are about an hour’s drive away and in the depths of the city. Last I attended they are on an upper floor but I do recall there is an elevator. I’m not sure I have the physical strength to first make the drive, then make the walk to the meeting room, then have the stamina to endure the meeting and make it back home. This is something I should reconsider. Perhaps during the nice summer weather I can try to attend a meeting and get reacquainted. If there is another in my personal predicament, by being an active participant in the group would be a way meet them.

I need to try to muster the courage and the strength to perhaps give one of those meetings a try. But I also must have the wisdom not to bite off more than I can chew. As I type this I know that it’s not feasible for me to drive that far to a meeting – as good as it would be for me. I will still ponder it to make sure it absolutely is not feasible…that I’m not wimping out. Sometimes I get myself in trouble when I’m afraid I’m being a wimp and I get myself out on a limb I have no business being on.

This post is disorganized. There’s really no central theme or point in it, is there? Well, I guess I did touch base.

I plan on writing again, perhaps one entry to focus on just where I am in my mobility or lack of. It will either be helpful to another with similar symptoms OR I may meet someone with whom we can share our ideas and what works for us.

Also, I will post pics of my patio. As I’d mentioned in an earlier post, I planned on enjoying my patio this summer. I’ve been sensing that I am slowly getting worse in this spinal cord damage. I don’t even want to admit it, but I suspect I will eventually be wheelchair bound. *sigh* In the meantime, I am going to do as much as I can to enjoy what independence I have left. That stated, I planted lots of flowers and veggie stuff. My patio is full of various potted plants. I got that new umbrella I needed. I love it. In another post I will not only describe my patio but I hope to post pictures of it. But I will inform that I have four different tomato plants (all with tomatoes on them already), four green pepper plants (one with two nice sized peppers already!), herbs of thyme, rosemary, cilantro, & parsley, and spinach. Then I have violas, impatients, gerbara daisies, another kind of purplish-white daisy, and some other lovely flowers that I forgot the name. I’ll list all that in the post.

Until next entry….hopefully in a timely manner…God bless!