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.

Legs eleven…

No, I haven’t started playing Bingo!

DANCING-LEGSDANCING-LEGS 2

But I do have a new problem to report… it’s my legs… well, it’s my arms and legs…

Since around April this year, all my limb muscles have become very tight and stiff. You know when you’ve not done any exercise for ages and then you walk, run or cycle several miles (not that I ever run), or when you ride a horse after a long time… the next day, or even for a few days afterwards, the muscles you’re not used to using are stiff and you really feel like you’ve worked them.

Well, it’s like that, but I’ve not done any strenuous or new types of exercise AND it’s been going on for more than seven months with no let-up. It doesn’t get better, with exercise or rest… but at least it seems not to get worse either.

It always feels worst first thing in the morning, or if I’ve been sitting for some time, so as I get out of bed or get out of the car, I am so stiff that I move like someone with severe arthritis. And forget sitting cross-legged, kneeling and sitting back on my heels, crouching, or even my usual curled-up-on-the-couch position. It’s just too damned uncomfortable.

My Tai Chi teacher has noticed that I can’t get as low in some positions as I could previously and I have a creakier, less nimble gait when I go up stairs.

Min Jeong Seu- TattooWith my arms, I find it hard to reach the middle of my back, whether in the shower, to fasten my bra or take off a t-shirt. Even raising my arms straight up feels like a strain. Again, in Tai Chi, there are some moves that involve an arm stretch, which I find difficult or painful. And putting on socks and shoes takes time and energy, if I can reach at all.

I’m not in pain, just limited in what I can easily, comfortably and gracefully do. Everything is tight and inflexible.

After a few weeks of this, I realised it wasn’t just over-exercised muscles and it wasn’t going away. I began to think it might be a presentation of Graft versus Host Disease [GvHD]. Having decided to mention it to the consultant at my next clinic visit, I felt anxious lest they said it was a progressive type of GvHD that might not respond to treatment, or that it wasn’t GvHD at all… and then what…?

I saw Dr Chris that day – a new-to-me consultant. This was the same day as the comic clinic episode I wrote about last week.

Elizabeth Romhild - Helping HandsAnyway, I brought up the strange tightness in my arm and leg muscles. After clarifying that I am not taking statins, which apparently can have this effect, he suggested doing a blood test for the muscle enzyme CK or CPK, which stands for Creatine kinase or Creatine Phosphokinase.

We didn’t talk about what it might mean or what might need to happen if the test showed an abnormal result. I had a rather special holiday coming up, so the last thing I wanted was to be held back for treatment if the test showed positive.

Fortunately the CK test came back negative. In other words the enzyme was not in evidence, which is good as a positive result could mean myopathy – muscle disease/weakness. All was normal… at least in terms of my blood. This still left a big question mark… What was causing the stiffness? More to follow, but (only because it’s taking me so long to write it and I need to get up to date), here’s a quick spoiler alert…

Chronic GVHD can also affect the skin in a variety of ways, causing… sometimes a tightening and thickening of the skin, known as sclerosis. Sclerosis varies in its severity and can remain confined to the skin or it can spread across joints and tendons. This tightening of the joints and tendons can limit your range of motion and can make it difficult to bend and straighten your arms, legs, and other joints.

– quote from the National Bone Marrow Transplant Link (a US support website)

Photo credits, from top to bottom:
Dancing Legs bronze, by Elizabeth Romhild
Tattoo porcelain, by Min Jeong Seo
Helping Hands bronze, by Elizabeth Romhild

A comic moment in clinic

Having written a fair bit about dying recently, and with another post to come on the subject, not to mention some more medical posts, I’d first like to share an amusing anecdote from life at Transplant clinic…

imageWhen attending Transplant clinic, we can request which consultant we’d like to see for any particular appointment. I’ve mentioned previously that while I admire the knowledge and expertise of Prof. Russell, I don’t find it easy to ask him questions; he’s just not that chatty. I need to also mention that there have been times when his matter-of-fact approach has been reassuring.

imageNonetheless, for most appointments I’d still rather see Dr Jenny, who is also very experienced but will spend time answering queries and explaining treatment, etc. So I usually ask to see Jenny. It’s quite simple; the nurses put a note on my file and that does the trick.

A couple of times though, Prof has taken my file, called my name and only when we’re already in his room has he noticed the note with Jenny’s name on it. His response has not always been particularly gracious, or at least that’s not how it comes across. He looks at the note and then says “oh, you don’t want to see me.”, leaving us both a bit uncomfortable and leaving me feeling like I should stay just to soothe his dented ego. I don’t stay, but I’d rather not have to go through that awkwardness.

On 23 May, I’m at clinic and Dr Jenny is away. Dr Harpreet, who was a Fellow at Nottingham, has now moved to Sheffield to take up a consultant position. This only means one thing… I’ll need to see Prof. Not my first choice when it comes to asking questions about my condition, especially atypical maladies, which is what I need to ask about that day, (more on this soon).

20131207-030240.jpgSo, I’ve had my blood taken and I’m sitting in the waiting area. Prof comes out of his consulting room again and again, plucking files out of the cabinet and calling the names of patients to see him.

All is well until I notice that some people who arrived after me are being seen while I am still waiting. I speak to a nurse, who confirms that the files are organised by appointment time. Given what I tell her though, she makes a point of pulling my file upright, so it stands vertically in the cabinet and is clearly visible… It cannot be missed.

Prof makes a few more file- and patient-seeking excursions and continues not to pick mine or call my name. I don’t know for sure but could it be that he is deliberately choosing not to see me because I usually choose not to see him… even though he knows that neither of my usual doctors is available? I am at once annoyed, flabbergasted, yet intrigued… amused and even in awe at how audacious and petty a doctor can be around something so serious. Laughable!

And yes, I do eventually get to see a consultant – the lovely Dr Chris Fox. Melissa, one of the specialist nurses smiles knowingly when I tell her what’s been happening. She says something to the effect of “Prof is a law unto himself.” She intervenes and saves the day by asking Chris to see me. There are two other doctors in clinic, but I’ve never consulted either of them. I assumed that they only deal with leukaemia or lymphoma patients. One of my leukaemia clinic buddies thinks Chris is the bees knees, so I am quite happy to be made a special case. But the incident certainly livened up my clinic visit.

18 month post-transplant review

IMG_2306Today is 18 months to the day after my allogeneic transplant. It’s my 18-month-iversary!

I’m alive, pretty well for the most part, looking and feeling good. So today is worthy of a celebration, although it is more of a quiet nod of acknowledgment than a champagne party.

Here’s a review of my current health status:

  • The myeloma is in remission. Hurray!
  • I still have 100% chimerism. Hurray!
  • All blood counts are within normal range (apart from slightly raised eosinophils, which can be indicative of Graft versus Host Disease, so no-one is concerned about them)
  • Graft versus Host Disease [GvHD] continues to make my mouth dry, tight and sensitive. No treatment has worked, I still cannot cope with spicy or hot foods/drinks. Either it has slightly improved or I have adapted to it. It doesn’t bother me as much as it did previously.
  • GvHD, in combination with being post-menopausal, also continues to make my vagina dry, tight and sensitive. I get some benefit from using Vagifem oestrogen pessaries, but mostly I just live with it.
  • I had two smear tests. The first attempt was very painful, I bled and they didn’t manage to collect sufficient cells, so it had to be redone three months later. That was slightly less painful, with no bleeding and a successful collection. The result was clear. Hurray!
  • I have had a successful mammogram. All clear. Hurray!
  • For over six months, I have been experiencing tightness and loss of flexibility in my muscles, most noticeable in my legs and arms, but also affecting fingers and other muscles. It has been investigated, with no clear outcome. My consultant is now willing to consider that GvHD may be the cause (which is what I had said all along). I will write about this in more detail in another post.
  • I am seeing a Physiotherapist to help with the muscle problem but I’m not impressed so far. He has never come across these particular symptoms before, so he has given me a sheet of generic exercises to do daily, but I’ve only done them once. I don’t believe they will make any difference.
  • A recent MRI scan showed some deterioration of my T12, L1, L2 and L3 spinal vertebrae, most of which was evident in the skeletal survey carried out on diagnosis in 2011. A bone density scan was recommended however to check for osteoporosis. I’ve had the scan, but not seen the results yet.
  • I have completed the full course of Zometa (bone strengthener). Over two years, I’ve had eight four-weekly infusions, then eight eight-weekly infusions. After that, the risk of osteonecrosis of the jaw [ONJ] is deemed too high to continue taking the bisphosphonate medication.
  • Slightly more worryingly, my lung function has decreased over the past months, since the transplant. A CT scan has been requested to see if there is any lung damage caused by GvHD. The loss of lung function could just be residual effects from a recent cold virus. If it is GvHD, there is no treatment. It usually remains at the decreased level, but is unlikely to get worse.
  • As well as muscle tightness, I have recently been experiencing aching knee and elbow joints, particularly at night and on waking. This is very new and I haven’t mentioned it to a consultant yet.
  • I experience fatigue on a daily basis, usually feeling sleepy around 4-6pm, finding it difficult to do much in the evening, often sleeping for up to ten hours a night and finding it hard to get out of bed in the morning. It doesn’t really stop me from doing things I want to do, but perhaps it should…?
  • your brain after chemoOn top of the fatigue is chemo brain: short-term memory loss, inability to retrieve words, almost impossible to multi-task, short attention span, difficulty concentrating and reading, etc. I’m reading (or trying to read) a book to help me manage it. More on this subject in another post.
  • I am still taking anti-depressants. I weaned off them in the summer, but began experiencing anxiety again, so after discussion with my GP, I recommenced taking them. I now feel emotionally stable and will continue taking them for a while yet.
  • After all the excitement over sleep apnoea/UARS mentioned in previous posts, I don’t use the CPAP machine absolutely every night, as it still annoys/upsets me. However I do use it if I’m sharing a room, out of courtesy.
  • At an optician’s appointment, I found out that my eyes watering, which I thought was due to tiredness and fatigue, is actually a condition called dry eye. It is caused by Meibomian Gland Dysfunction. It is a common problem with age, although it can also be a side effect of taking Fluoxetine. Treatment is with an Eyebag and lubricant eye drops. I will write about the dry eye story in more detail in another post.
  • Weird side effect of who-knows-which-bit-of-treatment is that my nose always runs whenever I eat, hot and cold food alike. I don’t have a cold or an allergy… just a runny nose!
  • IMG_2623Daily, the prescribed drugs I take are Penicillin, Aciclovir and Fluoxetine. I add Menopace, a menopause vitamin supplement and have just started taking Omega-7 to help with the dry eye. According to the blurb, it may also help the mucous membranes of my mouth and vagina. I’ll let you know how I get on. In the meantime, I love how the added orangey-red capsules make my tablet boxes a lot more colourful.

And a quick review of my current activities:

  • Tai Chi classes continue twice a week and I now assist the teacher with a new beginners’ class
  • Volunteering for Citizens’ Eye Derby continues
  • Following a Mindfulness course at the Nottingham Maggie’s Centre, a few of us continue meeting weekly or fortnightly to support our mindfulness practice
  • I have started swimming once a week with a friend, usually doing a minimum of 30 lengths (half a mile)
  • I recently participated in a Playback Theatre UK annual gathering and am looking forward to further training and workshops
  • IMG_2614Having relearned to knit, I have begun a new project to make handwarmers – photos will follow when completed
  • I proudly write a four-weekly column for the Nottingham Post newspaper and am looking for other writing opportunities to earn an income.
  • I have my fingers in a few exciting, creative project pies, which are in various stages of coming into being. Life is exciting!
  • I am not blogging much, which I miss, but somehow don’t find time, energy or head space to write, even though I have lots to share.

So, there we are then. Not the most riveting of posts, but I wanted to mark the day with an update, as much a record for myself as anything. I need to publish it now as it’s way past midnight and my anniversary is over. Roll on two years! Then I might have a more lively celebration.

In the meantime, I hope I can blog a bit more frequently. Any hints or tips on how to keep up with blogging regularly will be warmly welcomed.

Joyeux anniversaire à moi!

I’ve done it! I’ve survived the first year post-allogeneic (unrelated donor) stem cell transplant. That’s really quite something to celebrate, especially as I’ve not just survived, but I’m doing pretty well… you might even say thriving!

Thursday 16 May was the day to say:

:) Happy Birthday to me! :)

Something special was required to celebrate… Number one on my List for Living and gratefully inspired by Helen Fawkes was to go to Paris for lunch. How decadent! How crazy! And as one friend said, “Oooooo! Posh!” What better way to celebrate a momentous event like the first birthday of my baby immune system?! So I could say instead:

:) Joyeux anniversaire à moi! :)

I invited nine friends to join me. Some are fellow travellers on the myeloma/cancer journey, while others have accompanied me from the beginning with support and love along the way. So as well as a celebration, it was also an opportunity to acknowledge and thank good friends. Unfortunately, four of the nine couldn’t come for various reasons. I’m sorry you couldn’t be there, Debbie, Helen, Janette and Lynda.

A few weeks ago, I met my transplant twin, Julie, at clinic. I hadn’t seen her for a while as our appointments haven’t coincided and she had lost her phone, so we had temporarily lost touch. Of course I invited her too, as it would be her anniversary the same day. Sadly, although she was very enthusiastic about the idea, she wasn’t able to come either.

Two friends who could come wanted to go to Paris for a few days around that time anyway, so they booked their trips to coincide with my special day and would meet us on arrival at the Gare du Nord.

So the day arrived and saw just four of us travelling. The trip took on an even more decadent aspect as while Helen Fawkes lives in London, so Paris is only two and a half hours away, my little gang started the day in Nottingham so we had an additional two and a half hours each way. That meant a very early start… waking up at 5:00am! Fortunately the excitement of the day spurred me on to leap out of bed and be ready in good time, remembering tickets and passports, to head off for the station.

It was a 06:28 departure from Nottingham for Sam and Janet, with A and I joining six minutes later at Beeston. We’d booked first class tickets on the trains to and from London, so big comfy seats, lots of space and complimentary drinks and snacks helped to ease us awake.

During the morning, I received congratulatory text messages from everyone who’d been invited but wasn’t there, which made me feel like they were with us in spirit.

Going through Eurostar security at St Pancras, I chatted away merrily to a security guard, saying that we were going to Paris for the day. He reckoned we were leaving a bit late, taking a train at 09:17, to which I responded that we had started travelling at 6:30, which he acknowledged with a shrug and a smile and wished us a great day.

Both the London train and Eurostar journeys ran smoothly, bringing us to Paris for 12:47, where Rhiannon and Wendy were waiting together, welcoming us with big smiles and the obligatory continental bisous on both cheeks, as we came out of the terminus.

Despite an earlier agreement between three of our party, and despite Wendy advising me that only tourists wear them, I was alone in wearing a beret. But it came in handy during the day, as I was easily spotted when we became separated.

IMG_1167I’d booked a table at Brasserie Julien, dubbed “the most feminine of the Art Nouveau brasseries”, only a 15 minute walk away from the station. We were greeted warmly and received superb service, with plenty of joking, a mixture of Français and English being spoken by everyone. The best bit was when one of our party admitted to remembering just one French phrase from school… “Je voudrais un citron, s’il vous plaît” (I’d like a lemon please), which surprisingly but sadly was not needed all day. I’m sure we could have got her to use it if only we’d tried harder.

Our lunch began with champagne, with which we toasted not only Julie (in absentia) and me, but also Debbie, Helen, Janette and Lynda, as well as a friend in California whose birthday it was that day. We also raised a glass in memory of my friend, Abir, a Libyan woman Sam and I had both befriended at clinic, who sadly didn’t survive her stem cell transplant.

IMG_1173

IMG_1171While the food was not the very best I’ve ever tasted, I enjoyed my escargots and foie de veau, followed by crêpes Suzettes. But mostly I enjoyed the great company. Not being rushed, we took time to chat, giggle, eat and drink (an excellent Sancerre!), in a very relaxed manner under a beautiful stained glass roof, surrounded by Mucha-esque paintings.

Image 1Lunch lasted longer than I’d anticipated, but we still had time to jump in the Metro and head towards Montmartre, where we took the funiculaire up to Sacré Coeur, managing to avoid an opportunistic pickpocket en route. We had a wander around the Place du Tertre and a few of us sent postcards, but hélas, le temps passe vite quand on s’amuse (alas, time flies when you’re having fun)!

There was no time for a drink at a terrace cafe. And somehow we didn’t get around to buying a beret for Sam or Rhiannon. We made our way back to the Gare du Nord à pied, all of us wishing the afternoon could have been a bit longer.

We hugged goodbye to the two remaining in Paris and made our way up to the Eurostar check-in. The rest of the evening/night was spent rolling rapidly through Northern France and Southern England with any one of us yawning or nodding off at various times and none of us talking very much, but all of us brimming with grins, memories and bonhomie.

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Thank you to my lovely friends for joining me in this crazy idea and making it such a delightful day, more special for being so brief and so wanton. As Sam put it, “when else am I ever going to be invited to go to Paris just for the day?!” So eloquent, Sam! ;)

Identity shift

On 16 April, I was eleven months post-transplant. That’s almost a year! And what a celebration I’m going to have for my one-year anniversary, on 16 May! But for now, I’m quite content with quietly appreciating how well things are going, as is my consultant, whom I saw in clinic on Thursday that week. More on both these topics later.

After a six-week break, it all felt strangely alien, less comforting, less like ‘the community centre’ than usual. I saw a friend and one or two familiar faces, but it felt more like the kind of occasional hospital appointment that ‘normal’ people have from time to time, that you attend, see the clinician and leave promptly, to get on with your day – like a place you don’t belong and don’t wish to belong, unless you’re yearning to be a doctor, nurse or medical receptionist.

Going to regular clinic appointments has been a huge part of my life for over two years. As they are now decreasing in frequency, it feels strange, like I have to let go of something that however unwanted and unpleasant, was nonetheless a safe place, where I am amongst peers, people who understand, with whom I do not need to explain, a place where I belong and where very little is expected of me because I’m ill.

As another blogger, Helen writes:

When you have cancer your life is changed for ever. At times it seems to spin out of your control. There are big question marks against all the things you thought were certain.

And yet there is one thing you can reply on. The regularity of your treatment. The chemo sessions and all the other associated appointments are comforting. Having a medical schedule gives your life shape and it gives you back some control.

Three weeks ago, I took my first solo long-distance drive to West Wales (4-5 hours) since the transplant. I had been feeling quite anxious about it, as up till now, when I’ve travelled that far, a friend has shared the driving with me.

A44As I drove, with my choice of music playing loud enough to sing along, the roads clear, the winding pass to Aberystwyth absolutely gob-smackingly glorious, with the sun shining, the sunroof open, sunglasses on – yes, it was THAT sunny day! – I began to notice that I was okay.

I was doing something quite normal, without needing help or rest (or steroids!) :) .
Of course I was tired and needed a couple of Paracetamol once I arrived, but I did it… on my own! And who wouldn’t be tired and aching after driving 4-5 hours?

Great celebratory driving music!

While I was driving, I had a revelation – a minor epiphany. I realised that, for over two years, I have had an identity as an ill person. And I have been ill, so that’s not only hardly surprising, but it’s totally allowed. With that unbidden identity came some advantages, advantages that I am loath to give up. But now that I am beginning to feel well… perhaps it’s time to ditch the old identity? Perhaps it’s time to quit thinking of myself as an ill person? Perhaps it’s time to give up the sneaky advantages? To see myself differently? To take up life’s challenges with a slightly shifted perspective? So I decided to no longer think of myself as an ill person. It seemed like a radical, and slightly scary idea.

Whereas following the autologous transplant, I noticed improvements in my stamina, morale and general recovery on a week-by-week basis, over a fairly short period of time (around 3 months), recuperating from the allogeneic transplant has been much slower and longer, not to mention a bumpier and more anxious ride. At times it has felt like a permanent state, something that would never end – that I would always be in recovery.

To some degree I’d grown to accept it and I’d adapted to it. But although acceptance allows me to be okay with my current reality, adapting to it can be a way to retreat from the world and no longer reach for the things I want, maybe no longer even allow myself to want. Well, if you can’t have or do something, it’s better not to want it than to feel frustrated and disappointed.

So giving up my identity, my status, as an ill person feels like quite a daunting, psychological giant step. But, at this point, a realistic one… Although the recuperation process is not completely over yet, I definitely notice improvements, maybe not week-by-week, but certainly month-by-month. I look back at what I was able to do or how much rest I needed after doing things and I see that these days the doing is more and the resting is less.

Finally and slowly, I’m learning to trust the process, to trust that my energy is improving and will improve enough to have a good life, that my appetite for life is growing stronger and will continue to grow, that I am in remission and that there is a good chance of a long remission. I may have turned some invisible corner…

It’s a strange state to be in. When someone asks me how I am, or, something that happens ever more frequently these days, when someone tells me how well I look, I still find myself wanting to add on a protective get-out clause, a leftover from being ‘an ill person’, like “I’m ok… BUT I do still get very tired.” I am re-training myself to respond with a beaming smile and a hearty “Yes, I’m doing really well.”

No, I’m not exactly the same as I was, I’m not completely well as I knew myself three years ago. I do still suffer with fatigue, I do need to manage my energy and I can’t easily do certain chores without getting back pain, but I have friends with all sorts of pains and conditions that they manage, take tablets for and live with. They don’t constantly tell me exactly how their condition is unless it has flared up or they’ve had a crisis. And more importantly, they get on with life, within the restrictions of their health conditions. So what’s the difference?

Thinking of myself as a well person, or at least not an ill person makes a real difference to how I face life and how I spend my time. Successfully driving to Wales felt like a real challenge and was a gratifying eye-opener. Once I arrived, I applied my new-found sense of ability (as opposed to disability) to pull my weight and play a more active part in activities. Not using my illness, or fear as a reason not to do things. And not needing quite so much looking after, although that’s always nice from time to time… even if you’re not ill.

IMG_1062So while I didn’t do much washing up – that really hurts my back – I did manage to sweep the kitchen floor at the hostel. I wasn’t up to the disorienting hubbub of the large group, but I happily connected with friends in ones and twos. I didn’t go for any long walks or cycle rides, like some of my very active friends, but I did walk up the mount at Mwnt with some of them. Admittedly we took the path with a gentle incline. Enjoying the view from the top and seeing a porpoise was wonderful.

I wonder if the reason I felt so odd at clinic last week was due to my internal identity shift… Maybe I don’t belong there right now… at least not in the same way as I have done for the last two years…?

It’s only a vague sense just now and I feel reluctant to put it into words in public, in case I’m expected to run out into the world, take up full-time work, take up full responsibilities, give up the welfare benefits I receive, give up my blue badge, not to mention other support that I get because I’m ill. I also have a vague unease about tempting fate. But it’s a beginning and the very fact that I am able to willingly embrace no longer being an ill person, is probably a reliable sign that it may no longer be the case.

The ‘C’ word

I’ve put off writing this post for a few weeks because I’ve been getting my own head around the ramifications, before sharing it with the world and having to deal with people’s reactions, as much as anything else.

At my clinic visit on 10 January, Dr Jenny said I don’t need to come back for four weeks. Good news!

As it happened, yet again, the four-week gap had to be postponed, as I was going to be away on 7 Feb, so I had to make it three weeks (31 Jan), but the principle remains: I no longer need such close monitoring.

That wasn’t the only thing she said…

At the end of the consultation, I asked about the allo transplant…

An allogeneic transplant is a much more risky procedure than the auto – the mortality rate for an auto transplant is around 1-2%, whereas for a mini-allo, it can be 10-15%. Not only mortality, but the risk is higher for complications, infections and problematic Graft versus Host Disease [GvHD]. These are the main reasons why they don’t offer an allo transplant to everyone and why it’s not the first transplant offered to myeloma patients, even to young, healthy myeloma patients.

So, to reiterate, getting to nine months post-transplant, in remission, with only mild oral GvHD, fatigue, one cold and one two-night stay in hospital for a virus-induced high temperature is brilliant.

I’ve taken it a bit for granted, but every now and again, I pull myself up, take stock and realise how lucky I am that it’s all gone as smoothly as it has. As I’ve mentioned before, I know of other transplantees who have had more serious issues, needed further treatment or a ‘top-up’, some who are still going through treatment, pain and anxiety months on from their transplant and of course, there are those who have died.

My question to Dr Jenny was whether the allo transplant has a higher chance of a longer remission than the auto. In fact, I have already achieved almost a two-times longer remission, given that the initial transplant failed after only five months and here I am coming on for ten months.

Jenny’s response quite threw me… She mentioned the ‘C’ word… No, not THAT ‘C’ word! We already know about THAT ‘C’ word. She said the word: ‘CURE’. Astonished, I was!

What she said went a bit like this… Up to two years, patients are at the highest risk of relapsing, serious GvHD problems or other complications, including the possibility of dying – thus the close monitoring. But, in the majority of myeloma cases – bearing in mind that they don’t have thousands of cases to base this on, as an allogeneic transplant for myeloma is still fairly new science – if you’re in remission at two years, you’ll probably be ok up to five years.

With leukaemia, patients are considered cured if they are in remission at two years. With myeloma, while they broach the ‘C’ word… and it may be possible… there can be late relapses, as late as 10-12-15 years, so they can’t say that you’re cured if you’re in remission at two years, or even at eight years. Until there are no late relapses, myeloma is deemed incurable. Only if someone dies of old age or a non-myeloma-related illness would they say absolutely that the myeloma had been cured.

The point that she was making, which I had to take time to take in, was that if you’re in remission at two years, you’ll probably be ok up to five years. Almost a cure then…? It sounds quite tentative… wishful thinking perhaps?

As with everything else in myelomaville, there are no guarantees, relapses can happen at any time and just because the majority have one experience, there’s no way to know whether any of us are part of that majority or not. Everyone’s journey is different. So, while I see this as good news and it provides a bit of optimism, it actually doesn’t allay any fears of relapsing. And it doesn’t make me celebrate, so if you read this and want to encourage me to jump for joy, please don’t, as I’m not. I’ll just wait and see and carry on living.

I think it may also be because it was in February that I received my diagnosis two years ago. And last year I began my second stage of treatment, following the relapse, around this time. Perhaps once every ‘first’ anniversary has been successfully passed, I may be able to relax more and believe in a long remission…?

I’m approaching my first four-weekly appointment next Thursday, so going to clinic is more of an anomaly than a regular part of my weekly routine. I already have the beginning of a slight nervousness that other people have mentioned when they go for blood tests and clinic appointments… maybe this will be the time they give me bad news…? This is a new feeling, one I’ve not had before. I wonder if this will be my new normal?

The possible ‘cure’ being dangled like a carrot before me feels quite strange too… It’s a bit like a mirage, I can’t quite get hold of it, but it twinkles and teases me and I can’t be sure that it’s really there. Will I be in remission in May next year? Will I go on to see five years or more? Will I be one of those who lives on for many years, even to die of something non-myeloma-related? And do I want that? I’d kinda got used to the idea that I knew what I’d die from. Has that all been thrown to the wind? Can I consider the ‘C’ word as a real possibility?

I’ve noticed how many question marks appear in this post. It would seem that Dr Jenny’s use of the ‘C’ word has done more to raise questions and uncertainty than to alleviate any qualms. Hmmm… :|

I’d like to dedicate this post to a clinic buddy, Sam, who is today celebrating her one year anniversary of her second transplant for leukaemia. She’s had quite a tough time, but is now doing well, has returned to work part-time and feels like she can finally believe in the future. Halfway to being cured, eh?
Happy anniversary, Sam! x

Keeping my eye on the ball

One of the vulnerabilities for patients after a donor transplant is Pneumocystis pneumonia (PCP). According to Wiki: “Pneumocystis is commonly found in the lungs of healthy people, but, being a source of opportunistic infection, it can cause a lung infection in people with a weak immune system. Pneumocystis pneumonia is especially seen in people with cancer, HIV/AIDS and the use of medications that affect the immune system.” Wiki also says: “The mortality of untreated PCP is very high.

For these reasons, they give transplant patients prophylactic (preventive) antibiotics for the first six months, when we’re most susceptible to PCP infection. For most patients, this is in the form of Septrin (co-trimoxazole), or as one of my leukaemia buddies calls it, “the Monday, Thursday tablets” because she had to take them on Mondays and Thursdays.

Septrin is in a group of antibiotics called sulphonamides, to which according to my medical records, I am severely allergic – apparently I had an anaphylactic reaction. That’s scary! I remember nothing of it, but here’s the strange thing… When I was a child, I had regular chest infections, which I am pretty sure they treated with Septrin… without any repercussion. However, given the medical note, it was wiser not to take that risk, so I had the alternative: Pentamidine, which has to be administered by a nebuliser, rather than tablets.

The day before the stem cells were transplanted, I had my first Pentamidine nebuliser, or as the nurses call it, “Pent neb”. I wrote about it in ‘Stem cell transplant details‘. There was an issue with the drug not completely dispersing that first time, so Prof suggested that instead of waiting four weeks for my first out-patient Pent neb, I should have it in two weeks, which I duly did.

After that, it was supposed to be four-weekly. I had the first two on 31 May and 28 June, but after that, I didn’t realise that I needed to book the next one and no one reminded me. I think I was expecting the doctors to tell me each time. In September, I realised I’d not had Pentamidine for a while, so at clinic I asked what was happening with it. Dr Jenny was surprised that I hadn’t had it since June. I promptly booked one for the following week and continued for two more months.

Pinup-KeepYourEyeOnTheBall

I learned a valuable lesson though… to keep my own eyes on my ball. Not always easy with mental fatigue, but it wouldn’t be a doctor or nurse in hospital if I had contracted pneumonia, so the buck stops here.

There is nothing painful about having the nebuliser, but it’s not much fun either. I had to sit in a tiny room on my own. No one, not even nurses, can come in while it’s on, or for two hours afterwards, as it’s cytotoxic. Fortunately, it’s a good time for reading or using my computer – thank goodness for the hospital wifi and the lovely Shaniece, the receptionist who regularly gets me a guest log-on from the IT department. In fact, I’ve written a number of blog updates in that chair.

Pentamidine nebuliserThe worst bit is that holding a plastic mouthpiece in my mouth for up to an hour causes dribbling… I quickly learnt to take a handful of paper towels into the room with me to wipe away any stray saliva. It was either that or dripping on my MacBook and books, not to mention the drool stains down my front. How very attractive!

As you can imagine, I was happy to no longer need it after 29 November. Not that you can tell from this photo.

When I was in hospital two weeks ago, they did blood cultures to check if I had anything nasty. This week, Dr Jenny told me that everything they’d tested for was negative. So even more than no longer having to have the nebuliser, I am very happy to report that, despite the missed nebulisers during the summer, I have remained pneumonia-free. Yay!