Tasty

The taste just slips away
Taste – Ride

Anyone for high dose gin therapy?

On March 6th 2013, 4 years ago today, I had a drip infusion of “high dose” melphalan; the first part , and really the main event, of my stem cell transplant. (The actual transplant, a day later, was merely a salvage therapy to stop the melphalan from killing me.) Its consequences were physically gruelling, and it was the beginning of a month’s forced separation from my family (we weren’t finally reunited for 6 long, desolate weeks, during which time I missed Lyndon’s first birthday). But it was also the beginning of my recovery from the illness which had consumed me over the previous year.

And much to my amazement, my recovery seems, for now, to continue. I am feeling well. I haven’t succumbed to immune-compromised infection at all this winter. The pains in my bones seem all mechanical, rather than myelomal, and not getting noticeably any worse.

For the first time ever, I bunked a hospital appointment, last month. I was overseas, working, and I didn’t remember to cancel/reschedule in time. So I’m currently on just about the longest break I think I’ve ever taken from the haematology waiting room. I’m going back in next week, so I will get an update on the numbers then. But to be honest, up down or level I really do not care, as long as I feel well.

The only drip infusion I’ve had recently was this gin one, in a dubiously themed bar in Herne Hill. Gin tastes A LOT nicer than melphalan. And gin takes less time to recover from, too, no matter how high the dose.

Bon Anniversaire – A Side Note 

There is an app I have on my mobile telephone, which I like to call The-Most-Depressing-App-In-My-Phone-That-I-Cannot-Bring-Myself-To-Delete-Because-I-Am-A-Tortured-Soul. Perhaps I like being reminded of my years of good health, or perhaps I really am a tortured soul.

Not that I could ever forget the  importance of today’s date, but said app would make it next to impossible for me to forget My Myeloma diagnosis even if I wanted to. For the last few months, let’s say thrice weekly, the App in question has been reminding me of the quick deterioration of my body over the Summer of 2012. 

Whether in the form of several photographs of just my legs on my bed with EMan on my knees, a photo of me wearing a sling, me looking thinner or general comments about me not feeling very well, the reminders have been there. Given the length of my last blog, I thought the following would commemorate said anniversary, without getting too deep reflecting on our thoughts and feelings…

I saw the following pop up one day, and saved it, in preparation of my big 03.

  

My response when I saw this pop up on 20 June?

“I proved her wrong, didn’t I?”

How Housemate guffawed. Uncomfortably. 

See, myeloma is not always bad. 

The following comment proves my previous statement wrong FYI, but that’s okay. I had to be disconnected from an IV drip whilst naked the other week, so very little embarrasses me.

  
EJB x

Bon Anniversaire

Today marks three years since Myeloma officially came into my life. It’s three years since that junior doctor cried as she sat at the foot of my bed whilst she broke the bad news to my family and me. Is it an anniversary worth celebrating? No. It is however a significant milestone in my life and one which marked for better and mostly worse, a permanent change in the life of Miss Emma Jane Jones. Put it another way, the 17 August 2012 was life changing. And it wasn’t only life changing for me.

Since that date, I have been given a whole set of new dates to remember, celebrate and dwell. My first transplant on the 17 July 2013 for example, but that failed, so it was not quite the rebirth I advocated at the time. Then there was my second auto on 1 April 2015 and then my Allo on 23 July 2015. Only time will tell if the latter dates are ones worthy of celebration or just dates of mild significance. Mind you, the date my DNA changed will always be fairly significant won’t it?

For me though, this anniversary is the Big One. It’s the one that started everything off and although I wasn’t given the formal diagnosis until three days later, the 17 August will always be the day I got myeloma. The day I got myeloma. A ridiculous notion really, because my vertebrae did not fracture on that date, and the paraprotein did not suddenly appear in my blood on the 17 August three years ago. It is the date I knew why these things were changing in my body. It is much like my birthday, except with far more adolescent longing. On this date, I can feel melancholy and I can feel slightly sorry for myself than usual. I can, if that way inclined, try and recall the best and the worst of my three years, the highs and lows of each of 1095 days, I have fought through. And it is a fight, people may be trying to soften the vocabulary, but for me, I see this as a fight, a really, really big one.

Of course, you can see and feel the date differently, which I occasionally do. For as sad as my diagnosis was and as much as I do not want to have myeloma, the 17 August is also the anniversary of me growing up. My Myeloma has forced me to do many things I have not wished to do and experience,  but it also forced me to become an adult. Not the adult I once envisaged with a mortgage, children and a shed; the sort I am jealous of now. I am an adult who is forced to sponge of the State and her parents, but I became an adult nevertheless. I look at my contemporaries and sometimes I think to myself, ‘how would you have managed it?’ It’s a question without an answer, and it is a question I would not wish upon anybody ever having to find the answer to. I do not like myself for thinking it, but even when I think about that question in relation to me, I question how I have managed it all, and I am proud of myself. Even at the moment, when I seem to question daily my strength to continue with my allo treatment, I am proud of myself for coping. I think us myeloma sufferers deserve far more kudos for merely coping. I bet you any amount of money, because I do not have any money to make any sort of meaningful bet, that three years ago, I would have thrown anybody out of my cubicle if they dared to say that the 17 August would be a date that I would eventually be proud of. 

Even though my pride only accounts for some of my feeling towards this day. My diagnosis was the making of me. 

It was indeed a Big Day. 

I could do what I have done in previous years and list all the treatment I have endured in such a short amount of time. I could go through the physical side effects I have experienced many times over and have been forced to become accustomed to. I could even talk about how long I statistically have left in this world,  but I will not be doing any of that today.  This year feels different to me. Maybe it is because I am no longer at UCH and things seem temporary at St Bart’s. Though, really My Myeloma feels more than just the facts and the figures. Since my last anniversary, I feel like so much has changed; I do not know if it is a tangible change or just a non-drug related feeling in my gut.

Perhaps, prior to this last year, when I embarked on a nine month treatment programme followed by two SCT, I believed nothing had really permanently changed. I mean, I knew things had changed, but there was a part of me that still believed that my life could at some point at an unknown time and date, just slot back until place. I know that will not happen now. My 13 months of near constant treatment shown me that.

Until this last year, I also believed that I had a well established Support Network in place. I believed that all the perceived letting down I had experienced in that first year, was the only letting down I was going to experience in My Myeloma journey. My relapse last June corrected that misunderstanding. I feel far more let down post relapse than during any other time during my illness. Make a leaflet about that Myeloma UK, some people, those without myeloma, just cannot handle the fact that myeloma is a cancer that is chronic. That it goes on forever.

It is a strange thing to say, when I feel so well supported and loved now, but I have had to grieve the fact that some people got bored of my cancer and thus they got bored of me. It felt like they had tasted and enjoyed the 11 months of freedom remission had given me, and thought that taking it all on again with another relapse was too difficult a task to take. My stock went down. There were some people who made promises of support and friendship, not always actual promises you understand, but their presence alone throughout the early days of my illness, made me naïve enough to believe there was  something special and enduring in place. A promise of friendship. All I would say of this to anybody else in the same position as me, is, be warned of the glory seeker. When I am stuck in no man’s land, where there is no guaranteed end in sight, and the cancer keeps coming back along with my unpredictable fatigue, and those around me are moving on because they can, people and their promises can disappear. I have seen many of those promises, accompanied by those friendships end up on the proverbial scrap heap. 

It’s made for a difficult year and one where I have had to learn to stand on my own two feet. Fortunately, there is a flip side to this and if my relapse had taught me anything, it was who I could trust to stand side by side with me, as my treatment and their lives continue to develop. It does not always have to be either or, even though I am still prone to bouts of paranoia on this subject. Let’s not kid ourselves, I’m only physically well rounded. 

My relapse showed me that early on in my treatment, I made mistakes. I criticised my friends’ behaviour, in some cases I did so publicly and I regret that now. They were struggling like I was and they showed their struggle differently to how how presented mine. In the last few months, I have seen so much evidence of the support I have during my transplants, that I feel confident that even on my lowest days, I’ll have at least one person willing to pull me through the darkness. We just need to work on how I let people know. 

As it currently all stands, I know that My Support Network is well founded and passionate. It is mine, it is invaluable and I know that it is built on trust, even though I do not get to see its members as much as I would like to and I am pretty certain that is a feeling that works both ways. Rather strangely, or should that be tellingly, My Support Network is made up of people I have known for years either because they are related to me (obviously) or because they have had the good fortune of being my friend long before I knew what myeloma was. It has taken a while and the occasional misunderstanding, but I know who will be there when I need them. Some people will need to be asked for help and others won’t, but that is just the way things have always been and thus, it is the way things should be. I just wish there was more I could personally do to make my friendships equal again. Homemade cards only get me so far. 

Anyway, on the subject of my Support Network, I am making myself blush and as you are not all on anti sickness pills like me, I will put an end to the subject soon, I promise.  I could have just said what I am about to say five paragraphs ago;  My Support Network is irreplaceable. It may be irreplaceable, but crucially, my personal strength and journey through My Myeloma should not be defined and determined by it, and post relapse, when the droppings happened liked flies, I had to accept this the hard way and quickly.

My ability to cope with myeloma, is a much broader achievement than my Support Network. I personally, will always feel isolated by my illness and I have spent three years learning how to cope with this. I do not have all the answers, but I have more than I did last year, so who knows what I will be saying next year? And the year after that? And the year after that? 

Last night, as I was trying to drift off to sleep, I began to worry that with three years of near-constant treatment, there was a possibility  that soon, I might not have the strength to continue fighting should my current treatment fail. My current treatment, which I am nearly halfway though, is not exactly a walk in the park and trust me when I say, I have many a down day. I am fully aware that I will have more down days over the next x days. I will fail to get out of bed a few more times, find myself physically unrecognisable and cry over missing events with my  friends. I worried so much about my occasional thoughts of giving up, that I envisaged quite a different blog to the one you are currently reading. 

I haven’t only experienced treatment, relapse and drugs in my third year of myeloma. In the last year, somebody dear to me lost his fight against myeloma. He became dearer to me, selfishly, with my own diagnosis three years ago. He was somebody who I never saw being remotely negative about the bastard that is myeloma apart from rebranding Velcade, “Cillit Bang”.  I fear negativity is my default position the minute the going gets remotely tough. His eldest daughter also gave me an invaluable crash course in myeloma and continues to offer me considerable patience. Her Dad did not have a sibling donor and thus could not have an Allo SCT, instead  he had two auto SCTs and several other treatments such is the norm for current myeloma treatment on the NHS. He was given velcade and among many of the things, he suffered from steroid insomnia. He did not know it, but he was My Myeloma rock, and the only other person with myeloma I needed to know. My current treatment is the first treatment I have had that he did not have in some incarnation or another. I remind myself that I  feel poorly because I am lucky enough to have a sibling donor, and last week when I couldn’t get out of bed, I thought about him and his family, (and not because I had just watched The Man With The Golden Gun remembering a holiday we had) and I got out of bed. That’s all I really want to say about that. 

Three years after my diagnosis, in the middle of a transplant where I had to sign to say I was aware of all the risks that could happen during it, I am ever aware of my life and the chance of my death. I am also ever aware of the chance of my death being further away than the statistics that I will not talk about, and current literature would suggest. 

It’s been three years of changing and developing treatments and a changing and developing me. I don’t know how to end my acknowledgement of my anniversary, so I am just going to say goodbye and thank you for reading my blogs. I promise they will continue.

EJB x 

Happy Birthday

Today I am officially three years old.

Three years ago today I had a stem cell transplant which is the main reason I’m still here.

Celebrations today were extremely low key, unlike two years ago or even last year. Three good friends sent me messages and I went for dim sum lunch with another good friend who gave me a lovely card.

IMG_9258After lunch, I treated myself to a Belgian chocolate birthday cake, complete with candles. I ate a slice, while I reflected on the meaning of existence and the fact that I’m still here three years on. Not everyone has fared so well.

I even sang Happy Birthday to myself. It amused me, so I hope it amuses you too.

Four years on

As you’ll be aware if you’re a regular reader, there hasn’t been much ‘regular’ reading going on here for some time.

But, today is the four year anniversary of my myeloma diagnosis, so it warrants acknowledgement at the very least.

This morning, I was greeted with a post from Alex, who writes the blog, Dial M for Myeloma. In today’s entry, Live Longer Longer, he writes and shares data about how the longer we stay alive, the better are our odds for continuing to do so. He cites another blog by Gary Petersen, Myeloma Survival, in particular this post entitled The longer you live, the longer you live, which includes the following charts.

Life expectancy myeloma Death rates myeloma

From these charts, it is possible to see that having survived for four years since being diagnosed (and treated), my life expectancy has risen from two to seven years and my chance of dying is decreasing year on year, with only 7% of people at this point dying, compared to 23% in the first year.

This data alone is enough to celebrate.

Added to this is the fact that the ECP [extra-corporeal photopheresis] treatment I have been receiving for the past year, to treat/manage GvHD [Graft versus Host Disease] seems to be working. I realise I’ve not written about it yet and that I’ve made several promises to do so, so I hope you’ll continue to bear with me until I can get my head in the right space to concentrate sufficiently to write about it.

Because the ECP is working, I am now much more flexible and mobile than I was this time last year with scleroderma GvHD. My lungs have remained stable and not deteriorated and I have fewer issues from other GvHD areas such as mouth, eyes, vagina and guts. So while I am still taking Prednisolone (steroids), I’m only on 7mg per day and even better news, from the initial fortnightly ECP treatment, I went to 4-weekly some months ago and just last week we agreed to 8-weekly.

Hey, I’m almost “cured”!

But not…

No, it doesn’t work like that and even if it did, the experience I’ve been through in these last four years remains with me, the incurability of myeloma remains with me, the daily medication and regular (even if less frequent) hospital appointments remain with me, the high cost of travel insurance remains with me, the awareness of my mortality remains with me, as does the loss of people I’ve come to know in myelomaville/cancerville who are no longer alive.

In fact I attended a funeral two weeks ago of a friend, who didn’t survive two years from diagnosis. “Her name was Deborah, it never suited her.” Yes, she was that same Deborah that Pulp sang about in Disco 2000. She sure threw a good party… Wow! What a night! I’m glad I knew her and was able to offer support to her and her close friends and family.

My contacts list now has a number of people on it who have died. I keep them as a reminder of how much their journeys, their attitudes, their sharing, their support have all influenced me. Their absence affects me with both sadness and a warm touch of gladness to have known them, either in person or online, through blogging or Facebook groups.

Witnessing the death of people I’ve come to know, while sad, also motivates me to continue making the most of the time I have, whether or not I beat the odds. As Alex puts it, “The myeloma patient’s objective being, ultimately, to die of something else.” It may sound strange to say, but I’m not sure if that is my objective. The idea of dying of something else disrupts the script I have in my head and puts me into the same unknowingness that every other averagely healthy person experiences. Weirdly, I like having a sense of what I might expect, even though I don’t know when and I’d like it to be some time away. See above charts!

So, whether in knowingness or unknowingness, I am here today and all being well, hope to be back here in a few weeks time, after a trip to see family in the USA. I’ve been unable to contemplate long haul flight for over a year, due to an increased risk of infection because of the high dose of steroids and the recirculated air on planes. I’m excited!

And who knows… Maybe I’ll get back into writing more here. There’s plenty to tell!

Amnaesia

I rue the day that I ever met you, and deeply regret you getting close to me. I cannot wait to deeply neglect you, deeply forget you.
Poems – Tricky

About bloody time

Last weekend was spent with dear friends. On Saturday afternoon one of them received a text message wishing them a happy wedding anniversary. It came as a mild surprise to them, as they had both completely forgotten! We all agreed that if you are going to forget your wedding anniversary, much best to do so together. Not normally so good if you do it alone.

Some things are best remembered, others are best forgotten.

I read an email today of a post from a friend’s myeloma blog. (The post, coincidentally, is dated yesterday). She begins
“Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room… with him telling me…”
I don’t think any more of it, until an hour later when I am walking down the street, and it occurs to me that the (2nd) anniversary of my myeloma diagnosis is approaching too. When was the fateful phone call, I wonder?

And then it strikes me. It was July 17th. Yesterday. Yesterday I was busy flying home from New York. Yesterday I was busy writing something for a client. Yesterday I was talking with builders and architects. Yesterday I was out for pizza with my children. Yesterday, I forgot.

Oh rapture. I can’t tell you how good I feel.

Post 22 – Happy Anniversary (No.1 & No.2)

Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room in Wycombe Hospital with him telling me that unfortunately the Bone Marrow Biopsy that he had been so sure would come back clear, had nearly 10% myeloma in it. It was all a bit of a blur really. I had ‘Smouldering’ or ‘Asymptomatic myeloma’

We came home with this diagnosis being told that it could stay like that for years. Smouldering myeloma (how sexy does that sound for a cancer!) meant that I had no real symptoms. No bone damage, no sever anaemia (just minor), low calcium levels and no kidney damage. We were still pretty shocked at that time. I told friends and family but kept hoping that I was being my usual ‘drama queen’ self and that it wouldn’t come to anything and that I would be watched for many years. Everyone kept telling me that I could be fine for many years without treatment. 

The first few months were really scary. I read too much online. Figures saying that I only had 2-5 years to live. Stories of how myeloma negatively affected people’s lives. Nick would regularly walk in the room in the early days with me sobbing over the laptop as I read about what my life might possibly look like, or heard about another myeloma patient who had passed away. And then I started fundraising. It gave me a bit of a focus with it all and I truly believe that it helps me to stay positive about what I am now living with.

As I did all of this my paraprotein levels (the blood measurement they use to look at disease progression) kept rising slowly. But I still had no real symptoms. And then they started to get concerned at how high these levels were rising, at the fact I was becoming more anaemic and that I had some pain in my back that they were concerned could be the start of bone pain. I transferred to the Marsden in Surrey to ensure I got the best care, and in November 2011, my treatment started. 6 months of various chemotherapy to try to reduce my paraprotein levels so that I could have a Stem Cell Transplant (SCT).

Tomorrow is Anniversary No.2….3 years since I had my SCT. And with that I feel amazingly lucky. So many people that I know haven’t had 3 years of remission. With it comes the knowledge that when I relapse at some stage, that another transplant is possible, and that with that comes potentially half the length of time again that I get from this current remission. That is assuming that they haven’t moved away from the use of transplants (and that IS likely to happen at some stage.

A Stem Cell Transplant is REALLY invasive. I felt like I’d been run over by a bus. It was probably the worst thing I have ever been through in my life and ideally I will never have to go through it again. But I know I quite probably will. It is a really lonely experience. You are just so ill that you (well I at any rate) don’t want to see anyone for 3 weeks. Even the visits from Nick were hard as I was too tired to talk to him or do anything. I didn’t even get out of my room for about two weeks. But it did the job for me….it has given me another 3 years of a relatively healthy lifestyle. I think I do more than lots of people who are healthy…something I couldn’t contemplate when I walked out of hospital nearly 3 years ago. 

Being diagnosed with cancer is bizarre. It seems surreal and like it can’t really be happening to you. And like someone must have got it wrong. I still sometimes find the whole thing very surreal. Whilst once in a blue moon, I worry about dying early etc, I’m don’t think I really believe that it will happen. Fingers crossed the research will continue to progress so that this ‘head in the clouds’ mentality is a truth! I’m back now to the stage I was when I was smouldering. Believing that things will stay good. And that is great.

I will spend today reflecting a little on the past 5 years and how far I have come on my journey with myeloma. And I will also be remembering my lovely friends, and their families, who have not been as lucky as me. Pamela, Amanda, Sharon, Penny, Isabelle, Sean, Bridget and Paul….just a few names of people who were my online and ‘in person’ friends. It really brings a lump into my throat. 

And I will also be grateful to all of you who have supported Nick, me and the family through everything. We are so lucky to have you all. xxxx

40th-birthday

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

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

or

text ‘DEBG99 £X’ to 70070

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

30

I am thirty years old. I have just turned thirty years old. It is no coincidence. Today, the 24 May, happens to be my birthday.

Great Stuff. Super. Cool..

I would prefer if it were not my birthday today. I would have said the same thing last year, but I will say it again, I no longer feel like celebrating my birth. Sure I like the cards, attention and presents but I have cancer to fill that void.* My birthday to me, represents not that I am getting older but that I am getting closer to my death. You might say that this is the same for everybody, for that is what ageing is. I think, the difference is that myeloma odds tell me, I have had more birthdays than I am still to experience and that is not something my peers can say. I do not feel like celebrating that.

. Don’t believe the stats, don’t believe the stats. Hypothetically, if I were to allow myself a brief period to fully embrace the stats, the birthday would be the time to do so. Along that line then, I have eight birthdays left. Eight whole birthdays. Add in a milestone birthday into this mix of negative thinking and what do you get?

I have experienced over three quarters of my life and I have a mere quarter of it left.

This of course, then begs the question about whether I wasted my first 30 years. I am sure it is normal to go through some sort of reflection, even if it is only to consider the cause of non-existent wrinkles when one turns 30. I have tried to go through the usual, getting older type of reflection, but the problem with reflection is that it leads to planning or some sort of hope, and I cannot do that long term.

I cannot buy a house, have a family, maintain a garden if I had a house and I am perpetually single. There are so many aspects of my life that on the face of it, makes me look like I have not grown up at all. Some of these things are not caused by My Myeloma, but they are not helped by it. Going forward, they will prove much harder or even impossible to get and that is because of myeloma. When I reflect, like I am today because I am forced into it by the date, I would say that I should have got myself these things when I was ‘healthy’. It is all one big cycle that I do not need to bore you with. Needless to say, it does not make me feel good about myself. It usually ends with me being jobless, single and living with my mother supported by the State, before I die prematurely because that is what myeloma does. It kills people as well as ruining their birthdays.

I have received many nice cards and in some, the sender has asked whether I can believe I am thirty in the way I put it in theirs. The answer to the question is a yes, I do believe I am 30 but I do not believe I will make it to 45.

And that is the 24 May.

Anticipating these fine thoughts, I decided the best thing to do was to invite myself to Berlin today. I can almost trick myself into thinking that that is what my day is about.

Happy Trip to Berlin Day. I’m going to the airport!

EJB x

* I think I need to be absolutely clear on this point. I may not enjoy the act of my birthday nor the reminder that it hammers to my forehead about my life being different now, but, the attention and messages one receives on their birthday are welcome.

It’s complicated and I am needy.

Recording my anniversary

I’ve not written a blog post for ages. Lots of stuff, both medical and fun, has happened and is happening. Nothing serious or life-threatening on the medical side, although the visit from the Critical Care Unit nurse while I was in hospital with the infection the other week was a tad disconcerting. However, I’m out of hospital and well… and yet not writing.

Whatever the reasons, which I won’t get into here, I’m annoyed that I’m not finding the motivation, space and time to write, as I’d like to keep up a steady record of this odd journey I’m on.

Today, however, I was on a train with my iPad, so it was an ideal opportunity to just write. I especially want to publish a post today because it’s the two year anniversary of my stem cell transplant and as such needs to be acknowledged here.

I am acknowledging this momentous achievement in other ways too…

20140517-082548.jpgI’ve been to London today (thus the train journey) to be recorded in interview about my experiences post-transplant. It’s for a video Anthony Nolan are making as part of their ‘A Road Map for Recovery’ campaign. They are pushing for a change in how late effects post-transplant care is funded and managed. They have already used some of my story in the campaign report (I’m on page 23).

At present, the first 100 days post-transplant is funded by NHS England, whereas afterwards, it’s down to the regional Clinical Commissioning Groups (replacing Primary Care Trusts), which means that patient care could vary depending on where they live.

Funding-wise, it’s that cliché of a ‘postcode lottery’, but for patients, it’s just their recovery, their symptoms, their treatment, their experience and most importantly, their life. People do not fall into defined milestones as simply as funding criteria do. Anthony Nolan want all post-transplant care to be covered by NHS England so that every patient has access to quality care no matter how many days after the transplant they need treatment or support.

As part of the campaign, Anthony Nolan are creating a short animated video to put across the experiences of transplant patients, so politicians and health budget authorities can understand better how it is for us. They think my story is an excellent example for the campaign. I had very few medical needs in the first hundred days, and only minor issues in the first year. Almost all of the Graft versus Host Disease [GvHD] that has needed treatment began a year or more after my transplant. I have been very lucky in that my care has been seamless and excellent throughout. But others will have not had such a good experience.

I am more than happy, honoured even, to speak about my experiences, even the indelicate bits. Being articulate helps, although being succinct required some prompting, which won’t surprise anyone who knows me.

After the interview recording and before I took the train home, I had a joyful half hour cycling on one of the many hire bicycles available all over London. You can easily just hire a bike for half an hour to get somewhere and drop it off at your destination, for just £2. It’s one of the best £2 I’ve ever spent I think, taking a bike from Pimlico, along the river to Westminster, up Whitehall to Trafalgar Square and then to Charing Cross, where I neatly slid it back into a cycle stand and continued on to St Pancras station by tube. I thoroughly recommend it. What was even more special for me was that this was the first cycle ride I’ve done this year. It felt really good.

20140517-074201.jpgWhen I arrived home, I was greeted by a close friend, without whom, this journey would have been a hell of a lot harder. She brought me a wonderful anniversary gift… a beautiful cookery book that I’ve lusted after for a while: Jerusalem, by Yotam Ottolenghi and Sami Tamimi. They share not just recipes, but also histories and anecdotes from all the different communities that make up today’s culinary experience in Jerusalem, with the obligatory enticing photographs.

Even if I never cook anything from it, I will get great pleasure from just opening its pages. I was touched by receiving any gift at all and delighted with this one in particular.

20140517-002740.jpgLater this evening, we went out for dinner at one of Nottingham’s top restaurants, World Service. Being an avid Masterchef fan, I expected tiny portions of beautifully presented foods, served on pieces of slate and adorned with ‘foam’ and ‘micro herbs’. However, I can report that, while pleasingly presented, the food was served on plates, looking like food, tasting excellent and in a relaxed and relaxing environment… and all washed down with a rather decadent bottle of Sancerre.

20140516-233706.jpgLast year, a group of six of us went to Paris for the day to celebrate my one year anniversary. It felt like a very big deal. This year feels important but I didn’t want anything so grand or glamorous. I’m feeling quieter, more reserved and reflective, so I wanted something much lower key and closer to home.

20140517-004304.jpgThis year, a different group of six of us are going for afternoon tea at Chatsworth House tomorrow afternoon. Some of us may go for crayfish and champagne in true celebratory style, but that’s not obligatory, just tea, sandwiches, pastries and a scone, preceded by a gentle walk on the estate will be lovely. Just doing something elegant and special yet quite simple seems totally apt and I am looking forward to it in a calm, happy way, rather than the slightly crazed excitement of last year.

This year I’m in a different place with my emotions and my attitude. I think I am more accepting of steadily continuing to live and working out how I want to do that, compared to last year’s thrill and manic delight in still being alive.

Who knows how I shall feel at three years? But it feels good to consider a three year celebration as a highly likely event. So, I want to thank not just friends and family for accompanying me on this journey, but also express huge gratitude to all the haematology, respiratory and other staff who have helped to keep me alive, mobile and well.

The sadness of so many losses

I began writing this a couple of months ago but didn’t finish the draft I’d started. Today though I’ve been reminded again of the sadness of loss; it comes and goes with a regular dull rhythm.

On this Spring Equinox, a time of equal day night, a time of equal life and death, it seems apt to complete and publish this post to acknowledge again this aspect of living with myeloma… living with dying, living with old and new friends, in particular, who may and do die. This is the ever-present counter to the busy life I and others actively pursue.

There’s a couple I see regularly in clinic. He had a transplant and has been dealing with skin GvHD for some months. He is very quiet, reserved. She is his wife and usually the one who chats with me. Every time I saw them, his face was a vivid shade of red and his skin looked very uncomfortable, but otherwise he seemed okay if a bit despondent.

A few weeks ago I saw the wife in the office of the ever-supportive Transplant Co-ordinator, Lynne. When I saw her in there alone, I was already concerned. I asked how her husband was and she said he was in the Critical Care Unit, what used to be called Intensive Care. She looked pale, limp and anxious. I didn’t have any words but reached out to touch her shoulder.

I haven’t seen them since, so when I saw Lynne today, I asked her about him. She drew me into an empty room and said it wasn’t good news. I asked if he had died and she nodded. Both of them, the husband and wife could only be in their early-to-mid-40’s. Another reminder of the fragility of the community I now belong to.

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Garden 16.06.09 071My beautiful, slightly feral cat, Willow, who lived with me for over thirteen years, began to have more frequent visits to the vet than I had clinic appointments. As frequently happens in older cats, her kidneys were deteriorating and she had high blood pressure.

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We tried for some weeks to manage her ailments with pills and special diet food, but gradually she was eating less and less, losing weight, sleeping more and more and she started getting quite wobbly when she walked. Trying to give her pills was stressful for her and me. So I had to make the decision to put her to sleep. As you can imagine, it’s not an easy decision. I didn’t want to wait until she was really obviously in pain or dying.

IMG_2266Even now, I think perhaps I left it a bit late for the most compassionate time, but she died peacefully, with the vet coming to my home and Willow curled on my lap (which she never did in living) as she drifted off and became limp. Amazingly, she did just look like she was asleep.

My friend and I both cried. Later we buried her in the lawn of my garden. Placed in the curled up, looking-like-she-was-just-sleeping position and gently covering her with soft warm earth, like a blanket.

I planted crocus, miniature iris and miniature narcissi bulbs above her in the grass, some of which have begun to crop up in the last few weeks. That feels good.

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SanderIn October, I heard that a Dutch man, Sander, whose blog (written in English) I followed and who also had an allogeneic stem cell transplant, died. I never met him and we didn’t have much interaction, but nonetheless, I felt a connection, maybe because he was Dutch. He was about ten years older than me, with a love of music and travel, a wife and two grown sons. I had the feeling we would get on if we were to meet.

There have been other myeloma buddies who have died… Dai, a Welsh man in his late 50’s, who moved to Nottingham from Wales for better treatment of myeloma. We met online via the Myeloma UK Discussion Forum and then in person at a Myeloma UK Patient and Family InfoDay in 2011. He died in November 2013.

And Sean, who although he lived in Chester, had his major treatment in Liverpool, so I felt a connection. Although like with Sander, we never actually met, I followed his blog and he followed mine. He had a stem cell transplant from his brother and a further Donor Lymphocyte Infusion [DLI]. He died in May 2012 aged 46.

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Annie with hose June 2005A few weeks later, not long before the Winter festivities, I bumped into a friend of a friend, Ali in a local supermarket. In the course of conversation, she said how sad it was about our mutual friend, Annie. I felt the hairs go up on my neck. Just the way she said it, I kind of already knew before asking what she meant. She was astonished that I didn’t know, that none of our mutual contacts had informed me. I was too.

Annie, who was a similar age to me and the last time I’d seen her had been in average health, had been admitted to hospital in the summer, with a stomach complaint. While there, they had investigated a persistent cough she’d had for months. She was diagnosed with lung cancer and died within three weeks. Ali was visibly upset telling me. They’d been close friends. I was shocked and sad.

I met Annie and Ali together when I took a group of school leavers on the Nottingham Narrowboat Project about 12 years ago. Annie worked for the project and Ali was working with her as crew. I was so inspired by the experience that I volunteered on the project as a Skipper’s Mate, then later trained to be a Skipper. I have worked on a number of trips with Annie, as well as other Skippers. I only stopped volunteering when I became ill. I’ve seen Annie a few times since, as she lived on a boat not too far from me, so I would sometimes pop in for a chat if I was walking or cycling along the canal.

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May 17.10.09And finally, or probably not… my beloved border collie, May, with whom I lived with my previous partner, Jane. May was found as a stray and handed over to the dog warden with no background history. Jane and I were looking for a dog. We found May at a kennels with just seven days for her owners to come forward or be put to sleep. They didn’t, but thankfully we did.

Despite her fears which led her to occasionally snap or jump up at people, she was a most adoring, sensitive, loyal beast. If she was here with me this evening, she’d have been cuddling up to me, sensing my sadness and attempting to comfort me. What a love!

When Jane and I separated, she lived with Jane and visited me every other weekend, until a point when it just wasn’t working well in the summer of 2010. That was around the time I was frequently visiting my mum in Liverpool because she was recovering from a difficult operation. I was also feeling the fatigue effects of being anaemic from having myeloma, without knowing that I was ill. I wasn’t diagnosed for another six months. We agreed that May would live with Jane, which was sad but also a relief.

More recently, I’d spent time with Jane and May, going for walks together from time to time, so I saw her gradually becoming more and more lame, more and more deaf, but then in the last few months of last year, she began to experience dementia. Poor Jane ended up sleeping downstairs with her, as May would wake up in the night confused and stressed and would bark for no obvious reason.

As this carried on for several weeks, Jane was worn out and it was affecting her health and poor May was not going to improve, despite the vet trying various medication, including valium. There was no joy left in her, in fact she wasn’t entirely ‘there’. To just be sedated to continue living… for what? It was a difficult decision. These decisions always are with a beloved pet.

May liked cream

May liked cream

Jane and I talked it through and made the decision to put May to sleep on a Friday, rather than waiting all weekend. I went over and Jane’s parents were also there. It was a sad gathering, but we were all able to cuddle and stroke her. Whether she was aware of it, who knows? The vets came and gave the injection. Like with Willow, it was very gentle and while it was sad, it was also a relief to let her go, to be at peace.

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Amidst all this, I and my fellow incurable cancer buddies continue living in the face of death. And while I find it hard to hear this from someone who is currently in decent health, who is most likely to live into old age, I am allowed to say this… We are all living in the face of death.

With that thought, here’s a link to an exhibition by photographer, Rankin that was on last year at Liverpool’s Walker Art Gallery, Alive: In the Face of Death, challenging the taboo around talking about dying. I wish I’d seen the exhibition.

sandra-by-rankinOne of the people he photographed, Sandra said this: “Having cancer has made me more aware of how we are here for a very short time and how we should aim to live in the moment. When the time comes, I will embrace death and accept it with grace.” I hope I may too.

Tonight I am also remembering the lovely Libyan woman I met in clinic and whom I still think about, my friend Abir, who also spent her final days in the Critical Care Unit. Sadly I don’t have a photo of her, but I can see her face clearly in my mind.

If that’s all there is my friends, then let’s keep dancing
Let’s break out the booze and have a ball
If that’s all there is…

– sung by Peggy Lee (written by Jerry Leiber and Mike Stoller)

dancing catdancing catdancing catdancing catdancing cat