Cancerversary reflections


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

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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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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!

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Short snippets

As regular readers may have noticed, my posts seem to have become rather erratic and infrequent. This is mostly because I can’t seem to focus well enough to write about what’s happening in as much clarity and detail as previously. I don’t know if this is a long-term effect of treatment, i.e. chemo brain, or just living with ongoing low-level anxiety…?

I find it hard to concentrate without being anxious and restless and hard to relax without being in semi-comatose resting mode. The middle ground where I’m sufficiently relaxed to sit down calmly and sufficiently focused to gather my thoughts seems quite elusive.

I write a lot in my head, or at least I have a lot of writing ideas that appear in my head, in bed, in the shower, getting ready to go out, driving or otherwise not in a position to sit down and actually put fingers to keyboard. Damn!

I can sometimes get it together to capture short mindful bursts of writing. So it occurred to me recently that perhaps I’d be better at writing blog posts more frequently, keeping them short and less convoluted, maybe even less informative, but in that way, maintaining a record of what’s happening to me and allowing readers to know what’s going on, at least in brief.

For me this would solve three issues:
– one of me not writing and then the seemingly immense mountain of backlog rearing up to frighten me off from ever writing again;
– two, when I speak to people I don’t see regularly, not having to recap everything that I’ve gone through when they ask me how I am and how I’ve been. Hopefully, they’ll know, if only the basics and it’ll be easier to fill in the gaps of what they’re interested to know more about.
– and finally, three, and most importantly for me, I will have a record of my journey through Myelomaville. It’s this that upsets me most, losing my way, losing my memory… also a result of chemo brain, or menopause, or age, or who knows what?

So, with my new resolve, this is a short snippety post. Hopefully to be followed by more… Watch this space!

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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.

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