Life continues 

For those of you who wish to continue following my thoughts and feelings on life and adventures in remission, with grateful recognition to an encouraging comment on my last post, I’ve started a new blog: acquiescent quiescence. I hope you’ll come on over. 

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The last post…?

Last Saturday was a huge day in my life history calendar. Six years ago I was diagnosed with multiple Myeloma.

Each year that passes makes that day, 4 Feb 2011, more and more significant and makes me more aware how lucky I am to have survived to this point, from an “incurable but treatable” cancer. I’ve got through all the treatments, two stem cell transplants and GvHD. And I’ve witnessed a number of fellow citizens of Myelomaville die or relapse and have to return to treatment.

What’s maybe more special about this year is that when I was first diagnosed, I was told that the average life expectancy with a myeloma diagnosis is 3-5 years. I amended and broadcast that as 5-10 years because I just couldn’t bear to give out such scary news to those who love me. So, I can now reveal that I have survived beyond the average I was given, which in the intervening years has also expanded. Myeloma is still deemed to be incurable, but there are many more people getting earlier diagnoses and due to incredibly fast-paced research and drug/transplant development for this disease, many more people are living much longer.

Having said that, I’m also aware of feeling guilty and sad that I’m not feeling totally celebratory about my survival. That’s just how it is; I don’t want to be persuaded, cheered up or ‘fixed’. Just heard.

These days, I’m mostly physically well, but with some lingering fatigue, loss of concentration and memory and varying anxiety. I do miss the energy and excitement of life on steroids. Adapting to a slower, calmer, more ‘normal’ way of being seems quite a challenge.

I’ve not felt like writing in the past year or so – well, there’s not been a lot to say. So this will probably be my last post… at least as long as I remain in remission. They say that the longer I survive, the longer I’m likely to survive… so who knows, it may be the last post ever… I’m not sure how I feel about that.

I feel irrevocably changed, on both a physical and emotional level. I am not the same person I was before. That’s ok, but I feel like I’m still working out who I am, what I want to be/do with my life.

In the meantime, I volunteer:
– as a member of Myeloma UK’s PEER Network, offering my experience and support over the phone to other myeloma patients facing an allogeneic stem cell transplant;
– with Anthony Nolan on their Register & Be a Lifesaver (R&Be) education programme, going into sixth forms and colleges to inform young people about what’s involved in donating stem cells, blood and organs, and recruiting them onto the stem cell register;
– with Nottingham Nightstop, offering occasional short-term overnight accommodation to homeless young women;
– I’ve also been out to Calais to help cook and prepare food for refugees at Dunkirk, with Refugee Community Kitchen. I hope to go again.

While my energy seems to fluctuate, with fatigue affecting me more some days than others, with no obvious rhythm, I have continued with Tai Chi, which I’ve been learning since I was first diagnosed. As for other interests, I’ve been drawn to the arts: painting, making ceramics, life drawing, printing, felt-making; and dance/movement, such as Butoh, Contact Improvisation and even getting involved in a performance art project. I am considering taking an Access/Foundation course in Fine Art at a local college, hoping to bring all these creative interests together.

I’ve learned Playback Theatre, which has become a big passion, not just for myself, but for how much it can be a cause for creating connection and community in the world, which I think we desperately need at this time. So as well as attending workshops and training, I am striving to develop a Playback Theatre company locally.

I still enjoy travelling, but less extravagantly (and less frequently) than a few years ago, without the fuel of steroids and without the propulsion of imminent death hanging over me. My last major trip was driving to Paris with a friend, to see Marianne Faithfull in concert at the post-bombing renovated Le Bataclan, then north to Calais to volunteer. My next trip may be to Budapest in April, or a driving tour with another friend in Southern Spain in May… to celebrate my five-year transplant anniversary.

Finally, I want to say thank you to all of you who’ve read my posts and commented, supported, empathised, shared your own stories and cheered on from the sidelines. This post is mostly to let you know I am alive and getting on with my life “just like any other bugger”. Thanks for being there. x

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Destination: Cure – “it can only grow from here”

In July I attended a Reception for the All Party Parliamentary Group on stem cell transplantation at the Houses of Parliament. This is a group of MPs who support, campaign around and are interested in stem cell transplants, at a governmental policy level.

Last year I was invited by Anthony Nolan to attend a meeting of the APPG on SCTs to talk about my own experiences post-transplant, which was an interesting experience for me and I hope that it was effective in informing MPs and other interested parties about what what we face and what can happen after a transplant.

Anthony Nolan’s campaign last year, A Road Map for Recovery was to ensure good quality treatment and care at any point post-transplant, wherever we may live in England, rather than rely on the policies of the local CCGs [Clinical Commissioning Groups], who take over the funding of treatment after 100 days post-transplant, which is a fairly arbitrary date and can mean a fairly arbitrary decision on what care we may receive dependent on where we live. I’ve been very lucky living so close to one of the UK’s centres of excellence in haematology. Not everyone can say the same.

Here’s the Road Map for Recovery report, in which my story appears on page 23: http://www.anthonynolan.org/sites/default/files/PPA_report_FINAL_WEB.pdf

As George says in the video below, the transplant is only the beginning. I think the majority of people would probably think that once you’ve had and recovered from a transplant, that’s it: cured! It’s not quite so simple. I’ve been very lucky, but I know a number of people who received a transplant but died from an infection or from GvHD [Graft versus Host Disease], both of which are common issues post-transplant.

With Destination Cure, Anthony Nolan is campaigning to ensure that the destination for every person with blood cancer is a cure. See more at: http://www.anthonynolan.org/8-ways-you-could-save-life/campaign-us/destination-cure#sthash.IXZMpVfl.dpuf

If you look really closely, you may see me standing at the back as David Burrowes MP speaks to the gathering. And for once, I wasn’t on camera, speaking or interviewed on the video. A rare moment indeed!

Unfortunately my own MP, Anna Soubry, was not able to come to the Reception, but she has assured me that she is aware of and supports the work of Anthony Nolan.

If you have a spare 30 seconds, please contact your MP to encourage them to support the campaign:
http://emailanthonynolan.org.uk/In/89188354/0/YP1coRxgRFEfwALDvHWiXjYef15AZ0nklOwoOUAYnNx/

Again, as George says, your support could make a lifesaving difference for people like me.

And if  you’ve not registered as a potential donor already, please consider – it only takes a few moments and a few spits. You could be that person who saves someone’s life!

You could also donate blood, which many myeloma/blood cancer/transplant patients need. I’ve needed a few blood transfusions along the way: https://my.blood.co.uk/Account/Register

Under 30? You can register with Anthony Nolan: http://www.anthonynolan.org/8-ways-you-could-save-life/donate-your-stem-cells/apply-join-our-register

Over 30, and under 50? You can register with the British Bone Marrow Registry via the Blood Service when you next/first give blood. Here is the link to the register: http://www.nhsbt.nhs.uk/bonemarrow/

Under 55? You can register with Delete Blood Cancer, another charity: https://www.deletebloodcancer.org.uk/en/register-now

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Relatively normal

Jet - Liverpool 2007

Before (July 2007)

SCT face

During (August 2011)

11108671_10206492955139971_5824759539053057141_n

After… “Normal” (June 2015)

 

 

 

Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and in remarkably good shape.

I’m one of the lucky ones. Yes, my auto transplant failed very quickly, but since my allo transplant, I’ve had really very few issues. I’ve had very few infections or hospital admissions and certainly nothing too serious. I’ve had some Graft versus Host Disease [GvHD], but it has been only mild to moderate. (Makes it sound like the shipping bulletin.) Nothing life-threatening. And these days it’s all stable and very mild.

I’ve been discharged from Respiratory clinic, now that I’ve passed the milestone of the first two years post-transplant – the peak risk period for lung GvHD. My lungs, while not recovering any function, have not lost any either. In fact they have remained stable since I started treatment. I was sad to say goodbye to the lovely Dr Fogarty.

I still have regular ECP [extracorporeal photopheresis] treatment to keep stable or maybe even further improve the minimal GvHD (lung, scleroderma, mouth, vagina) I have now. The ECP treatments are now only every eight weeks and may well decrease in frequency after my next GvHD clinic appointment. I still attend Transplant clinic, but that is also around 8-12 weekly. It’s all a lot less prominent in my diary and in my life, thus the vagueness.

With my discharge from Respiratory monitoring, I was also able to stop taking Azithromycin and a Becotide (steroid) inhaler. I still take a good old handful of tablets – Aciclovir, Penicillin, Imatinib, Omeprazole and Prednisolone, but this latter is now down to only 4mg a day and I’m on track to reduce it by 1mg each month. So hopefully by November, I won’t be taking any steroids. I also take a supplement of Glucosamine Sulphate and Chondroitin; I went through a period of leg, hand and foot cramps and joint pains, which have fortunately stopped since taking the supplement. I’m hoping to stop taking them soon too.

Strangely, as my clinical needs diminish, attending appointments has changed from being a regular and quite enjoyable part of my weekly/monthly routine to more of an inconvenience or chore, something that gets in the way of the other things I was doing, whereas previously, they WERE the things I was doing. I never thought I’d get to feel like that and I’m not sure I like it. It’s the normalising of my life, which many people would hugely welcome, that I actually find tricky to manage psychologically. I had a role as a patient; I’m not really sure of my purpose now.

Don’t get me wrong… As those of you who know me in real life, or on Facebook, will be aware, I do a lot – volunteering, Playback Theatre, networking, painting and other creative arts, training and workshops, knitting, socialising, travelling. People frequently advise me to slow down and take it easy. But that’s not me, that’s not what I’m drawn to do. I still want to make an impact on the world; make a difference; be creative; see, do and be as much as I can; make the most of my life.

Finding a balance between those desires and the need to relax, rest and ground myself has always been difficult for me. Maybe that’s why ‘returning to normal’ feels so hard, because now I also return to my ‘normal’ (pre-cancer) way of being in the world and have to manage myself in a way that I haven’t needed to do while I was really ill or recovering from treatment. For most of the past four years, I have managed – I know not how – to find a very zen-like state of acceptance without really trying. An acceptance not just of having cancer and facing death, but also of myself, my purpose, the meaning (or lack thereof) of life and the world around me. For most of that time, I was relatively free of anxiety.

I am certain that will sound very bizarre to anyone who has not been in this situation, and maybe for some who have been in a similar place but have reacted differently to me, it may be hard to comprehend. But there you have it! That’s my truth.

And now… In so many ways, I’m ‘back to normal’…

And yet, it’s not quite the same. I can forget to some degree and much of the time what I’ve been through and that the myeloma will likely return. It is still deemed incurable after all. And I don’t spend much mental energy thinking about it, but it is still there. An ever-present fine haze over my life.

But it’s when I do forget that I get caught up again in the day-to-day anxieties of ‘normal’ life; I lose a sense of meaning and purpose in my life. So the haze is really not a bad thing; in fact I appreciate its presence. I appreciate being able to hold on to that potential relapse as a reminder to keep making my life count, to make it mine, to make it worthwhile, to make it something I can look back on and be pleased with how I spent my time, to be able to die knowing I have no regrets.

Phoebe Snow, singing a beautiful version of the Billie Holliday song, ‘No Regrets’. Phoebe Snow died in April 2011, not long after my diagnosis. I hope she died with no regrets either.

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Cancerversary reflections

 

A friend sent me this article this morning, à propos of my anniversary. It seems very apt. 

http://www.curetoday.com/community/janet-freeman-daily/2015/05/reflections-on-a-cancerversary

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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.

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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 any long haul flights 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!

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