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!

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.

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!

IMG_1725

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.

IMG_1719 IMG_1716 IMG_1714 IMG_1728

Rusty…

My writing skills… my mental clarity… my English vocabulary… my concentration… my memory… all rather rusty, I’m afraid, after my vacation.

Is it the sea water and sunshine perhaps, like an old Fiat car…? Maybe holiday inertia or just being out of practice? I suspect the latter, and as I do want to get back into writing, because I enjoy it, I am starting off with a meandering post to ease me back into writing again and see where it leads…

Meandering river 2Meandering river 1

Details of medical stuff – yes, there are more to share – responses to the questions people have posed, the much-anticipated Grand Tour, along with other List for Living exploits will follow, once I regain a sense of how to write and hopefully make writing a more integral part of my day/week.

When I first began this blog, it was a space to express myself and what I was experiencing, in particular the emotional/psychological aspect of living with cancer, which continues to fascinate me; to keep a record of medical treatment (lest I forget); and to share what was going on with those who care about me and anyone else who wanted to know without having to keep repeating myself, especially when I was too fatigued to take phone calls. If by chance my blog helped others going through the same thing, then that was an added bonus.

From my stats I can see that my post on having the Hickman line inserted, for example, is a popular read. Now that really IS an exclusive audience! But I’m sure that level of detail about the procedure isn’t available elsewhere, so I’m pleased to help.

I notice a trend with many of the myeloma blogs I follow… When we’re in remission, or no longer in treatment, we generally have more energy and are able to get on with life, with doing things that we’ve not felt like or been able to do during treatment and therefore we have less hours on the sofa – more on bicycles, in aeroplanes, trains, workplaces or even running shoes (not me, but one myeloma friend is currently in training for a triathlon!), which tends to translate into less time/inclination to blog. We also have less to write about in terms of the myeloma per se and so we question what to do with our blogs, whether we will continue to write and if so, about what?

At least one blogger I follow hasn’t written anything for many months. This is a good thing for her, because she is now putting her energy into a much-loved job, her two children, husband and other non-myeloma-related activities. She must now be celebrating two years post-auto transplant, as she had hers four weeks before I had mine, in July 2011 and is still in remission. Long may that continue for her.

Sadly, there are also some bloggers who stopped because they became too ill or died. I don’t feel comfortable removing their blogs from my feed, or removing those who followed my blog from my list of followers, so they remain in memoriam.

As time has gone on, my motivation for blogging has changed. For a start, I discovered that I enjoy writing so much more than I could have imagined, given how much I hated written assignments for courses or reports at work. I like being able to share my thoughts; the audience can choose to read or not, but in the meantime, I can hold forth.

20130707-093228.jpg

There are times when I may have become carried away with entertaining rather than writing from the heart, which is fun, but may need tempering? I hope to be more grounded and congruent from now on. Feedback is most welcome…

Being told that I write well also encourages me to keep writing and makes me wonder what else I might want to write and how I might actually go about doing that, especially if I could earn an income from it. Any ideas, advice or suggestions?

Being in pretty good health these days, the blog is and will be much more focused on “Living my life”, than on “with myeloma”. Nonetheless, just going through treatment, even if it had led to a cure (as it does with some cancers), has had an impact on me and I am forever changed, as I think is anyone touched by cancer or any other life-threatening disease, including carers, friends and family. I feel I have gained so much from my experience and now have the chance to approach life differently. This is not a bad thing in my opinion.

Having said that, I AM still living with myeloma… I will almost certainly experience a relapse at some point. That knowledge is something I live with and it affects all my choices, whether humble or grand, on a virtually daily basis. Neither is this a bad thing.

Even in remission, I am definitely living WITH myeloma and all that it means. So, writing about how it is for me at this stage feels as important and intrigues me as much as the initial stages of diagnosis and treatment. I think it’s an issue that can be forgotten or abandoned by cancer bloggers as they take back their “normal” lives and maybe stop writing. I dare say they don’t stop thinking and having feelings about cancer, even if they’ve been told they’re cured. But maybe some are too busy, and maybe some make sure they are too busy, so they don’t have to think/feel/write about it?

I don’t feel like I have a “normal life” to reclaim. Receiving a cancer diagnosis and going through the past two and half years of treatment created a huge hiatus in my life and I am now rebuilding it almost from scratch. This too is no bad thing. In fact, mostly it feels exciting.

Without a specific career, employment, partner or children, I feel much freer for now at least, to make different decisions about my life than I could before I was ill. It’s all about perspective, choices, attitude and priorities. I know I’m not having a unique experience here, but nonetheless, as clichéd as it is, I appreciate the opportunity to do things differently and of course I want to write about my experience of that process.

As those who’ve been following this blog will know, I am excited about my List for Living, which I am gaily tripping through. Of course, I want to share my experiences of ticking off items on it, but I also want to review, edit and add to it. Some items are no longer what I want, some having been done leave space for new ones to be added. I can’t possibly have a list that ever runs out, now can I? Where’s the fun in that?

So, I am looking forward to continuing to write and hoping you’ll continue to follow my journey, even if it’s less myeloma-related than before, but I’m hoping it will be very much about living… Not just the fun aspects, but ALL of it. I reckon that’s what being alive is all about.

So busy, don’t have time to wipe my…….

I’ve had a gentle nudge recently about the fact that I haven’t updated my blog for so long! And they’re right….there’s no point having one if you never write in it. 

There are a couple of reasons that I haven’t updated it. The first is work, and I’ll update you on that in a moment. The second is that I’ve been struggling a little with why I write my blog, whether it is worth writing it, and whether it looks very self-indulgent. I think this has been exacerbated recently having been following a different blog which, to me, whilst very well written, seems remarkably self-centred and theatrical – I have stopped reading it due to the frustration that it caused me to feel. But it made me worry a little that people may feel the same about me and my blog and the thought of that made me positively flinch! So I’ve spent the last month or so considering whether I should continue with it. But in the last couple of days, I have reminded myself that I started this blog for me and not for anyone else – on that basis, it doesn’t really matter what anyone else thinks. Now, any of you who know me well, will know that last statement is a bit of a joke really as it always matters to me what other people think. But, what has happened this week is that I had a really lovely email from someone who got in touch with me 2 years ago and who follows my blog. They thanked me for the support it gave them and the help it provided while they went through their SCT – and it made me cry that I had managed to help even one person through writing it. To me, that is what makes it worthwhile.

So, I will continue to update it, although quite possibly it is going to get limited to the holiday period when I have a little bit time now that I’m working! Working…..how good does that feel :-) I am so pleased to be back using my little brain and earning some money towards holidays etc! I have just had my first full pay check and god, did it put a smile on my face. It won’t change the world, but being back at work, makes me feel like I know what I am about again and that is a great feeling. The job is hard work…..but totally worthwhile as I am 100% committed to the organisation. I just need to work out my work-life balance, and stay well at the same time, and it will be absolutely perfect! As Nick says, we are still in the early days, so it is no wonder I am exhausted at the end of the week. And perhaps I will never be quite 100% as fit as I was before I had the transplant….but I’m definitely at 95% and that feels great. But to all of my friends, here is an upfront apology if I am a tad rubbish at staying in touch – it isn’t anything personal, just me getting used to work and drugs at the same time :-)

I’m also not sure whether I should mention this next thing….someone in the charity sector recently said that they thought it was brash to brag about achievements in fundraising etc.Image However, I am going to mention it….not purely because of my involvement but because so many of you, my friends and my family helped me to achieve it. Recently the chair of Myeloma UK asked me to meet her for lunch and she presented me with a beautiful engraved photoframe celebrating the £70,000 that we have raised over the past 3 years. And it really isn’t just me….so many people have helped me to raise that money and to spread the work about Myeloma UK and the work that they do. So whilst it is nice to be personally recognised, it really has been a massive team effort. And an especially big thank you should go to Nick, my Glitz and Glamour team (and their partners who put up with them helping me) and also my lovely 80 year old parents who have raised thousands of that total by doing fundraising with their church – it just goes to show that you are never too old (sorry mum and dad, I know you don’t think you’re old at all!)

So, what other news is there….not much really. Healthwise things are fairly stable. I seem to have a permanently low white blood count these days and I believe that this is to do with the 10mg revlimid that I take as maintenance therapy. However, the hospital is now working on a preventative basis and I receive G-CSF injections each week to try to boost my immunity and stop me from becoming chronically neutropenic. This seems to be working fairly well and stops me from being ill, although the slight downside is that it does cause me to feel fluey and achey the day after I inject. Still, it is far better to be well most of the time and at least this way, I know what is coming and can plan not to be socialising etc. I am not sure if it means that I am coming to the end of my time on revlimid….I really do hope not as it feels like my lifeline. I am sure I am wrong there and that my remission would have existed no matter what, but once you are on something like this, it is hard to think that it isn’t your miracle cure!

Finally, and because I am totally mean and want everyone else to cry like I did, I want to share a link to a podcast that I found inspirational and that really sums up how I feel about much of my life now that I have to share it with myeloma. This guy was given a terminal diagnosis so was in a worse place than me, but much of what he says rings very true…the patient guilt of having cancer etc. However, before you shut off, he is a very funny guy and the interview is uplifting and honest. Take a look at Steve Evans on the 16th May – it is available for another 19 days – I wish I could save it some way! He is pretty remarkable.http://www.bbc.co.uk/podcasts/series/dailybacon

 

Out of adversity…

“Out of adversity comes opportunity.”

– Benjamin Franklin

Tuesdays come around each week, regular as clockwork. These days Tuesdays see me going to Derby. Well, it makes a change from weekly visits to clinic… but that was on Thursdays. Anyway, my weekly visits to Derby started last summer through an exciting opportunity that came my way…

A few months after the stem cell transplant last year, I was beginning to feel stronger, a bit more human. I certainly wasn’t ready for paid employment, as I was very much still recuperating, but I wasn’t feeling too bad in between the languishing fatigue and I wanted to do something good with the energy I had. I find that doing good generally makes me feel good and feeling good is definitely part of my recovery plan.

I’ve always been a big fan of voluntary work and have volunteered for a variety of projects and organisations over the years, from mediation to mentoring, narrowboating to coaching youth at risk, reading with youngsters and Playback Theatre. And a few years ago, I initiated a Big Lunch in my neighbourhood to bring people together. Volunteering is a bit of a healthy addiction for me.

So, I had begun to think about volunteering as a way forward… a way to re-engage with people, to do something of value, to gradually re-build my confidence and stamina, to gently test my energy levels without putting myself under too much pressure and to hopefully shake off the growing anxiety and depression that was lurking. But I hadn’t actually made a move until I got a phone call from a friend.

Simon works for Community Action Derby, an organisation that supports local voluntary and community groups. Amongst other roles, Simon takes the lead on a community reporting project called Citizens’ Eye Derby, which uses digital media (video filming, interviewing, blogging) to tell stories and report on issues happening in and relevant to the local community, with the aim of raising awareness and improving life for people in Derby.

When he told me about the project, I thought it sounded interesting and exciting, which was exactly the response he wanted from me, because he wanted me to join the team. I think he also wanted to support me in my recovery. Thanks Simon! x

I had no prior experience of filming, not even making home videos of children or pets doing cute things, but Simon reads my blog and he thought that my writing skills would be an asset to the team. I could learn the filming and editing skills ‘on the job’.

That was back in July and I’ve been a voluntary community reporter since then. When I first started, I was a gibbering wreck, still quite lost in the pit of depression, lacking confidence and feeling that I had precious little to offer. I don’t think I contributed much initially, even in conversation. I was really not in a good place.

But over the months, I’ve not only been able to contribute and come out of the depression (thanks to good support and Fluoxetine [Prozac] as much as volunteering), but I’ve also learned heaps of new skills, and watched delightedly as my confidence has grown. I’ve met lovely new colleagues, both volunteers and paid staff, I’ve interviewed and filmed some really committed, admirable people. I really enjoy the work and the great team we have.

Initially, we worked on short films about different volunteering experiences, such as young people using hip-hop to engage with other young people, older people challenging feelings of no longer being of value, a visually impaired young woman supporting other disabled young people and one of our team members, Debbie’s experience of volunteering at the Paralympics.

As the team have developed skills and confidence, we are widening our repertoire, getting a bit bolder and tackling weightier issues, campaigns and problems affecting people in the community.

Having identified an issue we want to explore, we work in small project teams of 2-4 people. We usually start off by doing some research online or through contacts, trying to understand the issue as much as possible from all angles, to see what is already available in the public domain, including any other films or articles, to see what has not been said or asked and to discover any controversial views on the subject.

We draw up a preliminary storyboard: a flexible outline of what we want to cover, which direction we want to take, etc. Then we contact relevant organisations and individuals to explain what we do and find out if they would like to share their story with us.

The next step is to agree dates to interview and film the participants, having a conversation first about what we and they wish to cover, explaining how we work and allaying any concerns about ‘performing’. As well as speaking to the organisations involved, we especially want to capture the voices of individual local people who are affected, so an organisation will ask their users/participants/clients if anyone is willing to be filmed or recorded.

citizenseyederbyOnce the filming is completed, we usually have a lot of footage, out of which we need to create a film. This involves compiling and editing the clips into an order that makes sense, sometimes requiring a change in the initial storyboard, adding cutaway shots, voiceovers and titles, and finally the Citizens’ Eye logo.

The editing is definitely the longest part of the process, but it is so satisfying when there’s a watchable film that makes a strong point at the end of it. Once it’s ready, we upload it to our YouTube channel and to the Citizens’ Eye Derby website, where one of the team will write a blog post to introduce the video. And then we hit the PUBLISH key!

Please feel free to visit the website and subscribe to the blog if you’re interested to see how we develop.

The first film I was fully involved in focused on a truly supportive mini community that has developed amongst neighbours living in a cul-de-sac. I really enjoyed interviewing Arthur – he was so animated and had so much to share… There was a LOT of footage we didn’t use, as we try to keep the films as brief as possible, to keep the attention of our audience. I’m hoping we can go back to film him again about one of the other topics he was enthusiastic about.

On the weightier side, we recently published a film about the rise in the use of food banks in the city. Derby is not alone in seeing an increase in the number of people in food poverty. Austerity measures are cruel, demeaning and create poverty, not wealth. Sadly it’s a nationwide problem… and this in the seventh wealthiest nation in the world!

I’m very proud of this film because it’s the first project that I led and the project team of Suzie, Rebeca and I worked hard to make it an impactful piece of reporting. I hope you agree.

On the back of this type of work, Citizens’ Eye is now receiving attention and invitations from people/organisations wanting us to help spread their concern/issue, or wanting to share the work they are doing to improve things for the community. This is one of the aims of Citizens’ Eye, to help local people, groups, organisations to share their stories.

Watch out for upcoming films on cuts in supported housing, alcoholism in Derby, the work of the BME [Black and Minority Ethnic] Network and Local Area Co-ordination [LAC] – building social capital at the individual and community level.

As we grow, we also intend to share our skills and offer training to local groups so that they can create their own videos and blogs. With this in mind, two of us have been asked to work with Media Trust (who helped the project with initial training and support), to devise training that we would provide at no or minimal charge to help local groups get started with digital media promotion. This is a great opportunity for me to bring my training experience into play and to work with one of the team members who has a degree in Broadcast Media and professional experience of film production.

If I had not been ill…
If my employment contract had not ended shortly after I was diagnosed…
leaving me with free time without having to go back to work quickly…
If I had not needed to regain my confidence and rebuild my stamina…
If I had not been faced with the adversity of myeloma…
If I had not written about it…
I would not have known that I can write… and nor would my friend, Simon.

If, if, if… I may not have had this opportunity, from which who knows what other opportunities may arise… like maybe making a short film of my own? (See my List for Living).

Thank you Benjamin Franklin, for your wise words!

All views expressed are my own and are not necessarily shared by Community Action Derby, Citizens’ Eye Derby or other members of the team.

“Thou art a boil, a plague sore, an embossed carbuncle in my corrupted blood.”

– William Shakespeare, King Lear

Okay, that’s it for the supremely apt (with the corrupted blood and all) highbrow culture…

Now let’s get down to the nitty-gritty, lowbrow, down-to-earth, graphic bit…

I have a boil on my back.

Below are some photos as evidence.

I’ve mostly taken photos so I can actually see it…

As it’s on my back, I can’t see it directly without the use of a mirror.

So, now that I have these photos, I thought it only fair to share them with you.

I’m writing these sentences as individual paragraphs, so those of you who don’t wish to see them can choose not to look.

Close your eyes if you’re at all squeamish!

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Mon 18 March Wed 21 March Sat 23 March

Don’t worry, I don’t have three boils, just the one, gradually progressing over the past week or so.

Some years ago, one of the cats I lived with caught me with a claw on the side of my back, just above my waist. At the time, nothing in particular happened, except that I got a slightly raised, normal-skin-coloured, bump. In the intervening years, it has remained a slightly raised, normal-skin-coloured, bump. It didn’t hurt, it wasn’t infected, it didn’t grow or shrink and it certainly didn’t look as livid as these photos do; it was just there – a bit like a birthmark.

For some strange reason, last week, it began to hurt, turn red, hot and painful and grew larger. Annoyingly, it sits there all angry-looking, just above my waistline, so whether I’m wearing jeans or leggings or tights, it’s just in the wrong place. To be honest, actually anywhere would be the wrong place, but this is a very uncomfortable place.

Clearly it is now infected. I put it down to my compromised immune system. As I’ve mentioned previously, despite taking prophylactic antibiotics every day, I am still at risk of infections.

I was going to see the doctor on Monday anyway, so I showed this to her at the same time. She prescribed co-amoxyclav, which is a broad-spectrum antibiotic, often used for skin and soft tissue infections. Despite taking it for almost a week, so far, as you can see from today’s photo, it is definitely NOT shrinking. However, joy of joys, I am experiencing other effects from the drugs, in my gastric system and bowels. :(

I fear another visit to my doctor is required and I fear she will want to lance it. Ouch!!!!

If anyone is interested, I just found this video of a boil being lanced. It is not too gory, but please don’t feel you need to watch it. I will not think that you are an uncaring, unsupportive person if you don’t watch it. I think you may be quite a sensible person if you don’t watch it. I almost wish I hadn’t watched it. But at least I know what to expect now.

Having said that, it’s much less appealing than the video I posted in a blog post about head shaving because I wanted to see what to expect. I’m re-posting this here in honour of two of my myeloma blog buddies who’ve both just gone through the big head shave. Hats off (or should I say ‘hair off’?) to you, Deborah and Emma Jane – not that you really had a choice in the matter. I hope you both find peace with your new look and enjoy the lovely soft new growth when it comes.

Having survived eight bone marrow biopsies, I reckon I can handle this lancing malarkey… maybe not quite a walk in the park, but I’m a big (in spirit if not in body), strong, sometimes brave, myeloma patient, so I guess I’ll just have to face it… repeating my friend’s comforting phrase… “It’s all going to be fine.”

Even though on my List for Living, I said I want to create a short film or video, I promise not to film this. I can hear the sighs of relief from here. :)