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

Posted in * Myeloma | 3 Comments

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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Taking the ups with the downs

I began my last post (in June!) with “So, with my new resolve to write shorter, more frequent posts, here’s the next one…”

And I did write that one post. Apparently, more frequent posting was not to be. I have been unable to concentrate on anything at all for months. I’m not sure if it’s because of the steroids I’ve been taking since last December, chemo brain, anxiety/depression or a mixture of all of these. The fact is it doesn’t really matter what’s causing it. But it does upset me, sometimes more than others.

So this is a concerted effort to maintain a record for myself and other interested parties and to not let this blog whither and die the death of no posts and no readers. It will not be one of my most literary posts, I’m sure.

Timehop 18 months

Yesterday was 16 November, marking exactly two and a half years post-transplant. It would have passed by unnoticed, if it hadn’t been for Timehop.

Such is my current state that I didn’t feel at all celebratory. I suppose as time passes, surviving becomes less newsworthy. Having said that, I intend to celebrate my three year anniversary in May. I’ve no idea how, but I’m open to suggestions…

A few months ago, I began a post, which was to be a year in photos. I take a LOT of photos. I thought if I could post photos, it wouldn’t require much writing and I could still share my journey. It didn’t happen. I couldn’t concentrate sufficiently to even do that.

So, mentally, this is how it is for me right now…

Partly anxiety – not of anything specific, but possibly due to a sense of needing to do everything I want to do, right now because at some point it could be too late. No one warns you about that side-effect. I suppose there is also a subconscious awareness that a relapse will occur at some point and while I really don’t spend time thinking about or worrying about when that could happen, it must play a part in this low-level generalised anxiety.

Partly effects of steroids – high as a kite; running around doing everything all at the same time, which is not the same as multi-tasking – more like no-tasking, as it is rare for me to actually complete a task. Rushing around; going everywhere; being interested in all kinds of things; taking up all manner of exciting opportunities and putting myself forward for an impossible variety of voluntary and/or creative activities. Speeding even when I sit still – the surface calm is a lie. My mind is usually rushing along like a river in flood, often causing the same amount of chaos. I wear everyone else out with my mania and then finally myself, when I just crash, my mood swings and I just need to sleep and cry a lot.

Partly chemo brain and chemo fatigue – I can’t remember things, I can’t do some of the things I used to be really good at, things that require a very small amount of concentration, my brain gets so very tired so easily and quickly. Any mental task I consider needs to be very quick and easy, otherwise I just fade out and can’t maintain focus. I can rarely remember why I turned around in the kitchen to do or fetch something. I mean literally, as I turn, the thought vanishes into vapour and I’m left in a dither, frustrated and more anxious. That thing I can’t recall may be of vital importance…

Even writing this is making me feel tired and unfocused. I can’t recall all I wanted to write. I think I may have to stop here and just post this and hope I can return to write another day about what is happening physically and medically.

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Blurred lines…?

So, with my new resolve to write shorter, more frequent posts, here’s the next one…

My Hickman line half fell out on Friday 13 June. I don’t believe the date was to blame. I do wonder though, if perhaps nurse Emma cutting the stitch the day before had anything to with it…? It was over three weeks from being inserted so the tissue should have grafted, but clearly it hadn’t.

After a shower, I noticed the cuff on the line was visible and half way down the tubing. At first I thought the cuff had slipped down, but soon realised that the cuff is firmly attached to the line. This cuff should lie under the skin at the point where the line exits my chest; it’s main purpose being to act as an anchor to keep the line IN my chest. Fail! The line itself had partially slipped out.

20140630-010043-3643421.jpg“There is a small cuff around the central line. It can be felt under the skin, just above the exit site. The tissue under the skin grows around this cuff in about three weeks and holds the line safely in place.” – quote from the Macmillan website

Foolishly, I pushed it back in and then realised that I had just left myself open to a high risk of infection. I called my specialist nurse who agreed it had been foolish, but there was nothing to be done except to keep a watchful eye for any signs of redness, swelling, soreness and feeling ill. As I was going away for the weekend, I took a thermometer with me just in case.

imageimageFortunately, none of the above happened and I had a great weekend away celebrating a friend’s 50th birthday and staying at The Ceramic House in Brighton, which was hugely inspiring.

However, on my return, throughout Sunday night, I was very ill with sickness and diarrhoea, several times, mostly at the same time. It was horrendous. I absolutely HATE being sick. But I was relieved that it had nothing to do with the line. Phew!

I got over that in a few days of resting, including my friend V, who was visiting from Belgium, having the same thing on the Tuesday night, so her visit wasn’t quite as ‘outgoing’ as we’d hoped. Nonetheless we still managed a day of charity shop shopping and a cinema visit, plus a walk in my gorgeous nature reserve, where I managed to collect 17 mosquito bites that itched and itched like hell, with no respite from Cetirizine or Piriton. My legs are now so cratered from scratching that they look like a fleshy moonscape.

imageThe next occurrence was on Thursday 19 June, exactly one month to the day after having it inserted, the line completely fell out. There I was in my bathroom and Clack! I look down on the bathroom floor and my line is lying there with spatters of blood on the floor and the basin pedestal, and more to the point, NOT in my chest.

This time, I made no attempt to put it back in place.

Fortunately, due to problems accessing the line for the ECP treatment, which is the reason I have the line in the first place, I had booked myself into clinic that day to see what to do next. (I’ll write about ECP in a separate post). I saw Dr Emma, who’s the main consultant for GvHD and ECP. Unsurprisingly, she asked for an urgent appointment to have a new line inserted so I could continue with treatment.

I think this may have happened anyway. The previous plan, when the line had only partially slipped out, was to have a tubogram. Yes, that really is what it’s called. It would have meant returning to radiology for them to check where it was positioned and possibly reposition it, or if necessary, remove it and insert a new line.

There was a chance I could go in the following day, but I was very pleased when I found out that wasn’t going to happen. My visitor was still with me and was actually leaving that day, so I wouldn’t have been able to accompany her to the station. And I would still have to find a friend to be with me afterwards. I now have this procedure under sedation, after which, they insist that you are supervised for several hours afterwards.

So, on Tuesday, 24 June, I had offers from two friends, Tracey to come over around noon and take me into hospital and Janet to collect me afterwards and spend the evening with me. I was also feeling much improved from the nasty bug, so it boded well.

Tracey dropped me off around 1pm at Daycase for a 2pm procedure. First they check observations, do the usual pre-procedure checks and give me a gown. I also asked them to cannulate me before going up to Radiology as they often have difficulty with my recalcitrant veins upstairs. The Haematology nurses are much more adept with my tricky blood vessels. Even so, it took three attempts by three different nurses before nurse Jeff succeeded with an easy and painless baby cannula.

There was a long delay before going up to Radiology, partly caused by a consultant for an earlier patient arriving late and partly due to a new protocol, where sedated patients cannot now return to Daycase to recover, in case anything occurs that means they can’t leave before Daycase closes at 7pm. This new protocol had not been effectively communicated to the Transplant Specialist nurses, so Lisa, who had arranged the procedure for me, had not booked a bed on a ward for me. This meant that Daycase nurse, Cath was running around with a phone attached to her ear, begging the Bed Manager to find me a bed in which to recover.

She was successful, eventually! But both of these factors together meant that I didn’t go up for my 2pm procedure until around 4:30. And I didn’t get into theatre until almost 5pm. I was not a happy bunny. In fact I was a very grumpy, hungry, thirsty bunny. I had not eaten since 10:15, nor drunk anything since 12:00. The patronising ‘darling’ and ‘sweetheart’ comments from the radiology nurse did NOT help at all.

However, once I was in theatre, all went without a hitch. The team all introduced themselves to me and discussed what would happen, taking into account my preferences, including drawing an X to mark the preferred exit spot on my upper right breast. I really appreciated the good practice of an inclusive and respectful conversation. It feels like you’re all in it together, rather than being a slab of meat to be cut into and shipped out.

I was reacquainted with radiology nurse Chris, who had been just starting to learn how to fit PICC lines when I had mine fitted for the allo transplant two years ago. He’s now very proficient in PICC line insertion and repositioning, but not yet inserting Hickman lines. It felt comfortable to have a chat and joke with someone who almost felt like an old friend, as he administered the sedation.

The previous two line insertions (in February and May) were also done under sedation and as far as I was concerned, I was knocked out for the entire time. This may or may not be the whole truth… They say that sedation causes amnesia, so it may be that I was conscious but so completely forgot what happened that I decided I must have been unconscious. Without asking the radiology team, I have no way of knowing.

However, this time, I remember being awake and the sting of the cut into my skin, but not much else. This time, I didn’t sleep afterwards, which is I think, why I recall the experience. Around 6pm they wheeled me on a gurney to the Surgical Short Stay Unit (SSSU) to recover, where I was sufficiently awake to jump off and up onto the bed and demanded food and drink straight away.

I was supposed to stay there for three hours with half-hourly observations. After an hour though, I’d had enough. I felt fine, I was awake and the last place I wanted to be was sat unnecessarily in a hospital bed, just waiting to be discharged. I spoke to the SHO on duty, Dr Scarlet (in the conservatory with the candlestick… Sorry, old Cluedo reference!), who completely understood but advised me that if I left, I would have to sign a disclaimer to say I was going against medical advice.

I called Janet and as soon as she arrived, I grabbed my bag to leave. But oh no, I now had to wait for them to draft the disclaimer. Ten minutes later, a nurse came with a very repetitive letter for me to sign. If it mentioned that I was supposed to but was refusing to ‘stay three hours for monitoring’ once, it said it about four times. Nonetheless, I read it thoroughly and signed before they changed their minds and added a fifth ‘three hours for monitoring’.

In the end, I got out of there at 7:40pm, which was almost three hours after the procedure. If I’d stayed the expected three hours from arrival in SSSU, I wouldn’t have left before 9pm. Instead, Janet and I got a Chinese take-away, chatted, knitted and watched some easy TV. She went home as I went to bed, around 10:30. I was very ready to sleep by then, complete with the stretchy t-shirt bra that the radiologist, Dr Kate, had advised me to wear at night, to ensure I don’t roll over and catch or dislodge my precious new line while asleep. I am wearing it nightly for the first week.

image                                              image
So far, and I’m saying this with caution, it seems to be settling in well, with only some tightness at my neck, but less bleeding than the last one. I will find out later today if it actually works, when I attend for the continuation of my ECP treatment.

Having read this through before publishing it, I have to laugh… Despite my best intentions, I’ve still managed to write an epic tale. With thanks to Pippa for encouraging me to join her for a couple of hours of writing, which got me back into it again. Who knows, maybe the next one will be short and sweet, but don’t hold your breath!

Posted in * Myeloma, Graft versus Host Disease | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments