The kingdom of the sick

“Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.”
― Susan Sontag, Illness as Metaphor

Not being a big fan of New Years Eve I am not bothered to make an occasion out of it. I went to bed as usual around 10pm but got up to watch the multi coloured fire works fizzing and exploding into the dark smokey sky from my bedroom window.  I prefer New Years Day and the grey quiet days that follow, the seasonal frenzy is over and there are no diaries to be found anywhere in the shops!  It is a good opportunity to take stock of what has passed and what the new year might hold for me, 2016 was an annus horriblis for the world and for me health wise.  My last post was in May 2016 At last some good news and I am not even going to attempt to catch up in any detail.

Treatment wise, I continue on Revlimid, the much hated Dexamethasone and for the last few cycles a traditional chemo agent called Cyclophosphamide to try and strengthen the Revlimid and avoid the need for a double dose of Dex which I found unbearable. The boss describes my disease as stable but I feel like I am on the usual rollercoaster, my light chains varying each cycle between 100 to 800, bobbing up and down, currently 404mg/litre at the end of the 15th cycle. Although I find this treatment regime a real struggle and the toughest yet, I know I need to keep on it for as long as it is holding my disease stable before switching to a new treatment otherwise my options will start to run out fast. I have come to terms with the fact that I will most likely be on treatment for the rest of my life, that there will never be a period of drug free remission or my light chains getting into normal range, the best I can hope for is that any new treatment regime I start isn’t as hard as this one, perhaps more effective and gives me better quality of life.

I saw an excellent musical last year called  A Pacifists Guide to the War on Cancer. A funny and moving examination of life with cancer with a great song about entering the kingdom of the sick and hoping at some point to return to the kingdom of the well or maybe not. I was interested by the idea which I thought the writer of the play had come up with but later discovered that Susan Sontag wrote about in her essay, Illness as Metaphor.  Last year, more so than at any other time since my diagnosis I feel I have taken up permanent residence in this metaphoric kingdom which unless you have stayed there is I imagine hard to understand. I mean I look well don’t I?  It is a world where every day I am aware of my health, managing my health is a full time job. The hospital appointments and stays (four emergency admissions to hospital last year), countless blood tests, copious amounts of medication, persistent and continual viral infections, self administered daily injections, infusions, chronic gut issues, fatigue, insomnia, low mood and anxiety and so much waiting. Waiting to feel better, waiting for results, waiting for appointments, waiting in pharmacy, waiting for a bad moment to pass, waiting can be exhausting. I’m not saying it’s all grim, it is just different. I’ve got friends here, family too, I don’t have to pretend to be upbeat and I feel safe. We can share our experiences, our illnesses and our fears and disappointments without boring anyone except ourselves. I can be authentic.

I am increasingly disconnected from the well world. Fatigue, chemo brain,  loss of confidence and not being able to do the things I used to do in it contribute to this. I am happy for my friends currently in good health who are enjoying their lives, their work, pursuing their interests and passions but I’ll admit to a touch of envy and self pity too. I wouldn’t want them to not talk about stuff that they are doing or planning to do but it reminds me that I am not able plan anything like “normal “people do, much more than a few days in advance or arranging something then having to cancel it or not go, because of infection, steroid crashing or simply being too tired.

I am frequently asked where I’m off to next on my travels, anything planned? Answer is that it has become more difficult, more trouble than pleasure whilst on this treatment. Travel insurance is expensive, flying increases the risk of infection, I need to consider access to medical centres if I get ill and then there is the fatigue, steroid mood swings and gut issues that get in the way of enjoying the holiday and spoiling it for the people I am with.The desire is outweighed by the obstacles. Having said that I did have a lovely time in Cornwall in the summer last year, a road trip of sorts in my fancy new (to me) convertible and then the ferry over to the beautiful Scilly Isles. Swimming, walking, cycling and lots of boat trips to the remote off islands.  Because I was away for nearly three weeks, some of the time on my own, I didn’t matter if I had a bad day because there was time for me to have a good day.  In early September, a spontaneous break 0n my own to Copenhagen, the cheap flight which spurred me proving to be a false economy! I got to see some of the locations where my favourite Nordic noir dramas were filmed and ate lots of pickled herrings.

Since Copenhagen I have not been anywhere, apart from a spell in hospital with a high temperature when I got back. After several years of thinking about getting a dog or a cat, I finally decided on a older rescue cat and set aside October and November to settle her in. I was looking for a grey, minimalist, sleek, shorthaired cat and ended up with a very pretty fluffy white and ginger furry toy but I couldn’t be happier despite a rocky start when she nearly had as many health issues as me! She has transformed my life and I feel less lonely because of her presence. Stroking her and listening to her soft guttural purring is a great stress reliever. So here is me and Meg and just Meg.

In spite of all the moaning about the world I now inhabit, there are, have been and will be times of enjoyment and pleasure, things to appreciate and be grateful for. It is better if I try not to think of the future or the past and concentrate on living in the present. My focus must be on what I can do, not what I can’t do anymore and also not to give myself a hard time if I don’t “do” anything at all! In the words of Alan Bennett I’m keeping on keeping on.

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At last some good news..

Yet again it has been so long since I last posted that I am having to play catch up.  Time has passed so quickly, the exceptionally mild winter moved as swiftly as the swallows and swifts arrived into an early warm and sometimes very wet Spring, fruit trees laden with pink and white blossom and new green foliage eagerly bursting through the soil. I was in hospital the latter part of March and half way though April last year having my cord blood transplant and more or less missed out on Spring so it has been a real delight to witness it this time. However it has been extremely hard to find the energy, concentration and inclination over the last few months to update my blog. I have tried and done the odd bit at a time but now I’m just going to get an update out there whilst I’m having a steroid day!  It isn’t all I wanted it to be but if I put it off any longer, it may never happen. It is somewhat a technical update about treatment which hopefully you will get through in order to understand the backdrop to my world the last few months.  Life with myeloma and on treatment has been even more of a rollercoaster ride than usual. Coping with the side effects of the treatment, fatigue, chemo brain, depression and infections has taken its toll. Although it has been about 5 months since my last post, time has a different dimension for me with little to distinguish one day to the next, yet although I am doing less, it doesn’t feel like it is passing more slowly. An average day for me might consist of a hospital appointment, going shopping or an hour in the garden or a meet up with a friend or watching TV and that is all I can manage except on steroid days.

Lets start with a (fairly) brief recap…

Late December 2015

I ended the last post on a bit of a cliff hanger as I was waiting for my clinic appointment on 31 December to find out the result of the light chain test from the end of the second cycle. It was very bad news, they had risen sharply to 3600mg/l. The hope that Revlimid might have kickstarted some graft versus host disease and with that some graft versus myeloma effect or that my new cells would be resensitised to treatment were dashed. I was desperate to switch to a different treatment but there wasn’t anything left on the NHS that was available to me apart from Bendamustine, an old chemotherapy drug from the sixties which seems to have had a bit of a renaissance recently for treatment of relapsed myeloma but really is the last resort. Rather than that, the boss suggested I have a third cycle of the same treatment but increase the amount of Dexamethasone (the steroid) to 4omg x 4 days each fortnight over the 28 day cycle, an enormous dose and add Clarithromicin to the treatment regime. Clarithromicin is an antibiotic which has been shown in a recent study to overcome resistance to Revlimid, incidentally a study that I came across and informed my consultant about!  In part the reason for the high dose of Dex was to try and help bring down my creatinine levels as they were elevated which was a sign that my kidney function was not good. The high dose dex might also help to keep a lid on the rising light chains as by now I was starting to feel the effects of active myeloma such as raised calcium levels, anaemia, fatigue and the reduction in kidney function. I seriously thought that I was approaching the end of my myeloma journey and that I might have about 6 to 12 months left. Note the word “left” rather than “live”. The psychotherapist on the Haematology ward whom I had been seeing didn’t try to dissuade me from my view but suggested I try and prioritise what was truely important to me if I did only have that amount of time left. What would I pack in my suitcase for 6 months, what would I leave out? What for 12 months?  I found that analogy helped me put in place some plans for life rather than be waiting to die. I still haven’t packed my suitcase though!

January 2016

I started my third cycle of Revlimid, high dose dex (interestingly sex, always comes up on my predictive spelling instead of dex but I certainly wasn’t prescribed that!) and added daily Clarithromicin. A rather depressing and anxious start to 2016.

I got a high temperature about 10 days later and had to go to A&E, which is standard advice when you are a haematology patient on treatment or recovering from a transplant. After about 10 hours on a trolley in a side room there, I was transferred to a haematology ward and pumped full of IV antibiotics and fluids.  I ended up staying in just under a week as I was still getting temperature spikes and the medical team were waiting for the results of swabs and blood cultures. I was given two units of blood as I was extremely anaemic and I had stage 2 acute kidney disease which used to to be called acute renal failure which is what led to my diagnosis. There is only one more stage! I had a very frank conversation with the boss on the ward round and she agreed with me that as no cause of infection could be identified and in view of my other symptoms it was more likely that it was active myeloma which was causing these problems. I was taken off Revlimid whilst in hospital as having chemo when poorly isn’t a good idea and it didn’t seem to be working anyway.

Lack of sleep, dex withdrawal, stress, anxiety and fear all played on my mind and I did think I was heading to a position where I was too ill to have any more treatment and the light chains would rise rapidly out of control ultimately in my case clogging up my kidneys and causing end stage kidney failure. After a lot of patient advocacy, I was released on parole 5 days later, the condition being I had to attend the day unit for the next few days for IV fluids, antibiotics and top ups of  magnesium, phosphates and potassium. They were long tiring days but better than being stuck in hospital and my kidney function improved.

At my clinic appointment on 18 January I  found out the good news that my light chains had gone down to 1300.  Praise the Dexamethasone! I felt a huge sense of relief and the fear that I was approaching the “end” subsided.  I started a 4th cycle of the same high dose dex regime on 26th January.

I have already described in previous posts, particularly in Dexamethasone the good the bad and the ugly just how badly I am affected by it, more the withdrawal or the crash than the actual days of taking it which just causes me to be a bit hyper and gives me some energy.  It is the depression, irritability with myself and others, low mood, lack of sleep, shakiness in my voice and hands and lack of mobility due to muscle wasting that affect me so much. My physical appearance changes too, weight gain and redistribution of weight to the torso, the red moon face and hamster cheeks, humped neck, bloated stomach and hair thinning that when I see myself in the mirror I hardly recognise myself.

February

Half way through the 4th cycle when I was tested again my light chains were down to 500mg and by the end of the 4th cycle they were 344. Everyone was happy. It helped me cope with the side effects of the treatment, knowing that it was working.

March

In early March I went for a short break to Sicily with my friend and travelling companion, Jet. It was a bit of a mixed bag health wise as I had sickness and diarrhoea for some of the time and the usual fatigue. It was unseasonably cold and wet too at times but it was a change of scene and I really liked the vibrant folk art paintings of a local painter, Fiore, some of whose paintings were in our B&B but we also saw him at work in his studio. I loved the painted plastic table and chairs outside it. What a transformation of boring white plastic outdoor furniture enhanced by the bowl of Sicilian lemons!

On 26 March it was the one year anniversary of my cord blood transplant. There was nothing to celebrate about it apart from the fact of survival which is good of course, given I was given a 20% risk of mortality in the first 12 months. It was more a time to note and grieve the fact that it didn’t have the desired effect of my new immune system attacking the myeloma. I’m still not over the disappointment, but don’t know how to reach closure and let it go. Hopefully more about this in another post.  I didn’t have much time to dwell on this as on 28 March I was back in hospital again for a week with a high temperature, this time with parainfluenza 3 which in immune compromised patients can develop into pneumonia. I was given the usual IV antibiotics and fluids but had to stay in until my temperature was stable and they got results back from swabs and cultures so they could see what to treat any infection with. I hate being in hospital and didn’t feel ill enough to be there which I said to the doctors on more than one occasion but other than discharge myself and risk having to go back in again with a temp spike and lose my room, I didn’t have much choice. I was taken off Revlimid again and as my light chains had gone up to 440 at the end of the 5th cycle that caused me some anxiety.

April

On the weekend after I got out of hospital  I had just about recovered from the paraflu and felt well enough to travel to my parents to  celebrate my Mum’s 80th birthday, then I spent the following weekend in London with a friend taking in an exhibition about Monet and the modern garden and lots of good food. It felt good to be able to do these kind of “normal” things but when I got back I felt poorly and I came down with yet another viral infection with cough and cold symptoms, this time my old foe Adenovirus. I am only just getting over this nearly 2 months later and it has really wiped me out.  On 21 April I started a 7th cycle of Revlimid, Dex and Clarithromicin. Light chains were 98 at the end of the sixth cycle. That was a really spectactular drop especially as that cycle was messed up as I wasn’t on treatment for a week and a half.  I was delighted and relieved but slightly anxious that it could be a lab error. Also the boss pointed out recently that I did take a double dose of dexamethasone during that cycle.

May

Despite the fatigue and the virus, May has been a quite a busy month so far. In early May, I ventured out in the evening, a rare event, to a couple of dance performances. As a birthday present from my parents, I tried out my flying skills on a flight simulator which was surprisingly realistic and fun. I landed in Hong Kong and St Maarten in the Caribbean fairly successfully without taking off too many roofs!. Then over my birthday I celebrated with friends and family with lots of meals out and cake. I also did a lovely 5 mile walk in Dovedale in the Peak District. It was all quite exhausting especially as I was steroid crashing but I’m glad I did it. I really didn’t think when I was first diagnosed at 49 in 2010 that I would make it to 55. At that time there was a 40% chance of survival for 5 years.

I started an 8th cycle of treatment on 19 May. The dex dose has been reduced from 40 to 30mg for the first 4 days of the cycle to see how that goes. The boss thought my fatigue was due to the cumulative effects of the treatment and the viral infections.  I also found out the results from the 7th cycle, my light chains were up to 160 from 98. Although up a bit, I was relieved that the previous months result wasn’t likely to be a lab error as they were not far apart.

Ok that is the update done at last! I included some of the things I have managed to do as a reminder to myself that there have been some good times and productive enjoyable days, but mostly I feel like life has passing me by as the last couple of months have been really tough going, both emotionally and physically. There have been so many arrangements I have had to cancel or events that I wasn’t able to go too because I’ve been either been too tired, unwell, or just not the right mind to attend or all three. Then I berate myself for not going. I have learnt that fatigue is not about whether I sleep well or not, which I generally don’t, verging on insomnia at the moment, but like an insidious relentless brain fog. On steroid days I make all sorts of plans, have more energy and feel quite good. But in the crash period that follows all those plans go out of the window and I just try to get through the day. It means that going to weekly classes or getting involved in anything on a regular basis is really difficult to manage as I never know how I am going to be from one day to the next. My quality of life is fairly poor at the moment and that may not change as I will be on treatment for the rest of my life now. When the current treatment combo stops working as my myeloma develops resistance to it, I will switch to something else. There will be no periods of drug free remission, no more transplants, another donor transplant would be too toxic and unheard of. So my challenge remains as always to live in the moment and live as well as possible, accept my limitations, get the balance right and not give myself a hard time if I don’t always achieve it. As I like to think of myself as a pretty good card player, I find this quote very apt!

“Life is not a matter of holding good cards, but of playing a poor hand well.”

― Robert Louis Stevenson

 

 

 

I’ve gone viral!

Since my cord blood transplant I have been beset by one viral infection after another and sometimes two at the same time.  Apparently it is more common with cord blood transplants because the stem cells are immunologically naive, more so than their adult counterparts they have no antibodies or immunity imprint.

The main culprits have been parainfluenza type 3, adenovirus and rhinovirus (click on the links if you want to know more). Whilst my symptoms have not been much worse than a cough and a cold, these viruses, particularly adenovirus can be life threatening in immune suppressed patients after an allo transplant. This virus has been with me more or less since my transplant, sometimes when I am tested it has gone but then it comes back again. It means that when I attend clinic appointments or the day unit, I have to wear a mask as an infection control measure and sit in a separate waiting area on my own or with other patients with masks on too which is annoying as I can’t catch up with my transplant mates and my glasses get steamed up. It feels a bit lonely and isolating.

Initially I regarded having these viruses as a nuisance which they still are but I have come to realise that they could have serious consequences for me. I almost scared myself to death reading the following about adenovirus:-

“Viral infections may be associated with high morbidity and mortality in patients undergoing allogeneic hematopoietic stem cell transplantation (allo-HCT)1–3. Common viral infections after allo-HCT include those due to cytomegalovirus (CMV), Epstein-Barr virus, herpes simplex virus and varicella zoster virus. Other viruses, such as adenovirus, parainfluenza, respiratory syncytial virus, influenza, coxsackievirus, and rotavirus, are less common among allo-HCT recipients. However, adenoviral infection (AI) has been reported to be associated with significant morbidity and mortality in these severely immunocompromised patients.

Adenovirus is a double-stranded DNA virus that was first isolated in 1953 in a human adenoid tissue-derived cell culture. It has approximately 100 serotypes, at least 51 of which are known to infect humans 16. Infection occurs throughout the year but is most common from fall to spring. This virus can be transmitted by inhalation, inoculation into the conjunctival sacs, and probably the fecal-oral route. AI manifests as a number of clinical syndromes, including rhinitis, bronchitis, pneumonia, conjunctivitis, enteritis, hemorrhagic cystitis, and meningoencephalitis.”

(Extract from an article in the Bone Marrow Transplant Journal 2013 entitled “Adenoviral infections in adult allogeneic hematopoietic SCT recipients: a single centre experience” )

 

I’ve noticed now that persistent URTI’s (Upper Respiratory Tract Infections) as well as hypertension (high blood pressure) are listed as my co-morbidities in the letters from my consultant to my GP.

To try and boost my immune system to fight against these viral infections I have been having monthly infusions of immunoglobulins which having had 4 now don’t seem to be doing much good. I have also been on antibiotics most of the time which are really only of prophylactic effect since they don’t work on viral infections.

A few weeks ago on a Friday I was in the Haematology day unit for some reason I can’t now recall since I am there so often, when my lovely transplant nurse, Nijole, sprung on me the news that the boss wanted me to start a treatment called Cidofovir, to try and tackle the adenovirus. This was to start on Monday and would be administered 3 times a week taking around 4 hours to administer by infusion with fluids. I could feel tears start to well up and Nijole asked what was upsetting me. Between sobs I told her that on Monday I was starting the first lesson of the Spanish class that I had enrolled on so it meant I would have to miss it. What a baby! But what it represented to me was a step into the normal world, doing something other than being ill, recovering from my transplant and going to hospital. Nijole said we would work round it and I could have the treatment after the class had finished so I did go but the level was a bit too advanced for me so I have been bumped down to a another class on a Thursday afternoon after all that fuss!

And so I started this gruelling regime of antiviral treatment the following Monday which has been hard going. Early starts to get to the hospital in the morning following nights disturbed by coughing fits, my body wanted to lie in. On the days in between the treatment, I felt wiped out and nauseous. I had wrongly assumed it would just be for a week but then found out it would continue for 3/4 weeks.  It felt like going to work which incidentally it is just over a year since I gave up. No regrets about that, but on the other hand there’s not been much opportunity to actually miss it as pretty much since then I have had VDR pace, my second autologous transplant and my cord blood transplant. In all probability I would have been on the sick for the last year and there has barely been a day when I would have been capable of going to work. I don’t miss it but do miss my colleagues.

During the three weeks of Cidofovir stuck to a drip in the day unit, I inevitably encountered other patients with blood cancer also having treatment and chatted to some of them.  Sometimes it was a good way of passing the time but sometimes it was just depressing and I wished I’d kept my head down reading a book. There were post allo patients being treated for severe and various forms of GVHD  a couple of years or more on from their transplants which was scary. Some were very poorly.  I had to remind myself that the well ones wouldn’t be in the day unit requiring treatment. I felt quite wretched during this period especially when I found out afterwards that I still had adenovirus so the treatment had no effect and also had rhinovirus again. To add to the grimness, I also attended the funeral of a fellow myeloma patient at the MRI whom I had come to know quite well during the last couple of years. Of similar age and diagnosed at around the same time as me Jane had a donor transplant in 2012, enjoyed some remission and made the most of it but upon relapse her myeloma eventually stopped responding to treatment and took over. Her funeral was inevitably sad but a moving celebration of her life and what came across to me was that she didn’t let her illness stand in the way of doing the things she felt strongly about.  It drove home to me that I must do the same. I have a tendency to say to myself I’ll do this or that when I am better but I may never be better than I am now so I want to do what I can do now as far as possible and not put anything off until I’m recovered or in remission or not so tired. This GIF is quite apt, I need a new wall clock, maybe I should try and find one like this!

Clearly I need to strike a balance between looking after myself, not overdoing it, avoiding risk of infection and doing the things I want to do. Travel abroad is probably still out whilst I am tapering off the immune suppressants and have infections but there are other things I can do and have done. During this sweet gentle autumn we have been enjoying I have played tennis, been on cycle rides and even an anti austerity demo! Oh and of course, learning Spanish!

Vivir el momento que puede!

 

 

 

 

 

 

 

 

 

Baby Steps to Day 100

Picking up from my last post, Hard Graft, I was discharged from what I hoped would be my final stay in hospital on May 7th, day 41 post transplant. I had started an extremely high dose of IV prednisolone, (a corticosteroid similar to Dexamethasone) and was sent home with tablets of 175 mg to try and get my acute skin graft versus host disease under control. Those who have read my post on Dexamethasone, will know that I don’t get on with steroids, having very little of the highs and all of the lows. Although Prednisolone is less harsh than Dex, I soon started experiencing some of the side effects of these steroids such as insomnia which combined with the fatigue I was already experiencing made me feel very wiped out.

This was me, Day 43 + transplant when I managed a steroid assisted 20 min walk, baby steps!

Still I did get some of the manic energy that steroids can give you, for me it was being slightly hyper, careless, rushing around, thinking that I’m capable of doing anything, being implusive. I’ve certainly had some incidents which I attribute to being on steroids such as:-

– Breaking my favorite bowls when I was rushing to put them in the cupboard

– Rushing to get back to the car as the time limit for parking was up and falling over just before I get there spilling my shopping.  A kind young woman cyclist stopped and helped me up, gathering my shopping together. no harm done just grazes and bruises.

– Making impulsive purchases without doing sufficient research such as an expensive swing seat for the garden which I saw online which turned out to be totally unsuitable.

– Slicing a banana to put into my porridge but putting it into the cup of tea I was making and the teabag into the porridge!

– Putting my newly acquired electric kettle on the gas hob to heat up.

– More seriously, a fall when I hit my face on the edge of a wheelbarrow when I was rushing up a step from the garden. Fortunately I had no more than cuts and grazes and a bruised upper lip.

– Scraping my car along the metal gate when I was parking it in the driveway, again rushing, an error of judgement, trying to cut corners.

After a couple of weeks of being on steroids, I developed the usual side effects, such as a puffy round face and a double chin, steroid induced diabetes, redistribution of body fat to the stomach and back. After another couple of weeks muscle wasting began to occur in my arms, legs and buttocks. I was also extremely shaky especially my hands, legs and my voice. I looked, sounded and felt like a nervous wreck. A couple of weeks after that, the shaking combined with the progressive muscle wasting and lack of strength in my legs meant I was also having difficulty walking. I started using a walking stick for stability but could not go far, getting up the stairs and moving from standing to sitting was hard.

Mood wise, I was irritable, short tempered and depressed, not really wanting to see anyone. I was also extremely anxious, worrying about everything from whether the transplant would work, whether I would die, whether the infections I had would turn into something more life threatening.

What I described in my post on dexamethasone is exactly the same as my experience on prednisolone.

I am depressed, tired and shaky, mentally and physically, I am easily irritated by myself and others, restless and edgy. Nothing I do or say feels right but I don’t know what would feel right. I find it difficult to be with people because I feel socially inept and lacking in confidence. My voice is gruff (another side effect) and my hearing slightly dulled so there is a real sense of being disconnected. I note I referred to feeling disconnected in my last post as well, Nothing to say and wonder if that was the dex effect too without me realising it?

As my skin rash was clearing up the prednislone dose started reducing by 25mg weekly and a little more slowly when I got to below 50mg. By Day 97 the 2nd July, I was on 15mg but was still suffering from shakiness and walking problems however I was sleeping better at night which was a big relief

For someone meant to be resting and in recovery my days were busy with applying numerous creams for the skin rashes, taking the medication, attending clinic twice weekly to start with and then weekly, having visitors.  The days shortened and  the health chores or a hospital appointment would be a full days activity with the rest of the day for resting. I had a day and night on call rota of friends in May to help with shopping, lifts and anything else I needed which was great. But in June started the walking difficulties as well.  After the initial flurry of calls,  visitors and offers of help when I came out of hospital died down, I felt quite lonely and forgotten about. People think if y0u’re out of hospital you must be better but all it means after a stem cell transplant is that your neutrophils are above 1 and are stable so you are no longer neutropenic. The hard slog of recovering from an allogeneic transplant  goes on for 6 to 12 months. I was also fairly incommnicado as well due to the steroid effect. I watched a lot of tennis lying on the couch in the afternoon, the French Open, Queens and Wimbledon, what a godsend!

In early July I took my first trip away from the safety net of my own home and went by train to visit my parents for a few days. The train journey from Manchester to Hereford is a pleasant one and for the first time in a good few months I saw proper countryside from the train window, fields of yellow and green, big skies and the rolling Shropshire hills. I felt happy and a little lighter in my heart.

The trip was a good one and miraculously the shakiness disappeared as did the anxiety. Maybe they fuelled each other? I was able to write, type, do up buttons, use a knife and fork properly, hold a glass or a cup and lots of other useful things that we take for granted . It was day 100 post transplant on Sunday 5th July and we celebrated this milestone with a bottle of prosecco although I couldn’t drink any because it tasted disgusting as my sense of taste has been affected by the chemotherapy.

Day 100 is a small milestone in the life of a post allogeneic transplant patient because its the day when symptoms of  GHVD are no longer considered to be acute and any symptoms that start after that are considered chronic. I also had a bone marrow biopsy to determine the level of abnormal cells in my bone marrow on day 97 to see how the transplant was working on the myeloma. I think that the first 100 days have the highest risk of transplant related mortality so I was relieved to have passed that point. By Day 100 I’d had two chimerism tests which showed I was 100% the donor’s blood cells.

This means that I have 100% bone marrow and consequently blood cells of one of the cord bloods. It turned out to be the Australian male cord blood that won over the UK female one. So am I an aussie! Not exactly as whilst my blood is, the rest of my body is still me so I would have different DNA results depending on whether the DNA test was taken from my blood or say my hair (if I had any!). This is good, the other outcomes could be no chimerism or mixed chimerism. Whilst it is a good sign, it does not necessarily mean that the my new new blood cells are recognising my myeloma as foreign and so attacking them and so with some apprehension I awaited the results of the bone marrow biopsy.

More on that in my next update to follow shortly, sorry about the cliffhanger!

Baby Talk Part One

 

 

 

 

 

 

I haven’t updated my blog for a while as I dont know where to begin as usual. So much has happened since my post about my second stem cell transplant that I’ve not been able to step off the emotional (more so than the physical at the moment) roller coaster that is living with myeloma for a break.  I had hoped for a few months of not having to think so much about myeloma and the course of my disease, just a bit of time off for good behaviour!  Four months on and I have pretty much recovered from the physical effects of the transplant. I have a spotty face, dry eyes, occasional bouts of diarrhoea and usually wake up feeling like I have a hangover from hell!  I’ve been on two fantastic and completely opposite holidays, the first in Egypt exploring the underwater wonders of the Red Sea and then a few days later to Iceland exploring the land of ice and fire.

                  

The reason why I crammed these holidays in to such a short space of time will become apparent later on in this post.  That is the good news, the bad news is that a couple of months ago I found out that my stem cell transplant hasn’t had much effect on my light chains so it is unlikely that I’ll have much more time free of treatment.

The  further blow is that the boss here at the Manchester Royal Infirmary thinks I will be resistant to the next line of treatment, Revlimid, as it was one of several drugs in the VDR Pace regime that I had before my transplant to which I also didn’t respond. After Revlimid there is only one further new line of treatment currently available on the NHS called Pomalidamide and the boss didn’t seem to have a good view of that either. I asked her how long she thought I’d got, the answer was one to one and half years. I was completely shocked on two levels…….that my stem cell transplant hadn’t worked and that my disease may be resistant/refractory to Revlimid which I was saving for a rainy day. The timescale for living was sharply brought into focus and my awareness of my mortality became very real again in a flash. I am probably more conscious of this than most people I know because of living with an incurable life shortening disease where the chances of surviving more than 5 years from diagnosis are only 45% but even knowing this I have sometimes felt or even assumed somehow that I am going to live much longer. The failing aggressive treatments and multiple relapses have now provided a much needed reality check! Hence the holidays to Egypt and Iceland.

The purpose of the meeting with the boss whom I don’t normally see was to discuss a donor transplant, technically called an allogeneic transplant. This has been lurking in the background to my first and second transplants ie an auto followed by a donor transplant, usually within 4 to 6 months of the auto. Because it is tandem to the auto, it is called a reduced intensity allogeneic transplant (a RIC allo for short). The idea is that you get the high dose of Melphalan that I described in my post on the auto transplant and then your own stem cells back to rescue your bone marrow. This hopefully keeps the myeloma at bay whilst you have the donor transplant a few months later where the chemo given is generally less intense and designed to dampen down your immune system so the new donor cells can engraft and hopefully recognise the myeloma cells as foreign and attack them.

A RIC allo was suggested by the boss after my first transplant in 2011, it being offered to younger high risk patients like me as it may give a longer remission and in a small number of cases be potentially curative. Maybe about 10% of patients live for 10 years or more after an allogeneic transplant. At present in the myeloma field there is no other treatment that can be potentially curative in this way. Sounds great, why wouldn’t I have it? Because on the downside it carries a significant risk of transplant related mortality and chronic graft versus host disease which could severely affect my quality of life. The generally quoted figures for transplant related mortality for an auto are around 2/3 %, for a RIC allo it is more like 20% depending on exactly what type are having.  I agonised over the decision the first time around, should I take my chances and see how long I got from my auto, some people get years, or should I take the risk and go for it as it is best performed upon first response?  I bravely or foolishly decided to go for it only to later find out that there was only a 7/10 matched unrelated donor (my brother and sister weren’t a match either) so the RIC allo couldn’t go ahead and the plan was shelved until, if and when I had my second stem cell transplant in the hope that a suitable donor might have come on the register by then.

When I relapsed, the prospects seemed slightly better as I was told that there was a 9/10 match which might be a possibility.  My approach was to take it one step at a time, get through my treatment and my second stem cell transplant and then have another discussion with the boss. I did have a preliminary discussion with her before I started VDR Pace and she told me that upon further analysis the 9/10 match wasn’t ideal as there was a weight issue ie the donor weighed a lot less than me so I might not get enough stem cells for my body weight from her. I suggested I go on a diet but the boss didn’t think that was a good idea when recovering from my transplant! In any event there was a mismatch at an important level which meant there was a much greater risk of mortality from the transplant.  She suggested I might have a cord blood transplant as an alternative.

This is where umbilical cord blood is used as a source of donor stem cells taken from babies whose mothers who have kindly agreed to donate their baby’s umbilical cord. It is then typed, stored in a cord bank and registered with the Anthony Nolan Trust. There is less chance of a mismatch because the stem cells are immunologically naive. As an adult I would need two cords.

It has rarely been done in myeloma patients and there is very little to go on in terms of its effect on disease control in myeloma patients. The further disadvantage is that there is no possibility of a donor lymphocyte top up which is possible in the usual type of donor transplant to try and stimulate graft versus myeloma effect if a patient is showing signs of disease progression. At one point the boss said it would be experimental and she wasn’t sure that she would be willing to do it. We left it that I would get through my autologous stem cell transplant and decide after that and she would contact a Haematology boss at the City Hospital, Nottingham, a renowned transplant centre, whom she thought might have done some for myeloma. I also asked her to find out more about my tissue type as I was thinking about starting a more personalised Anthony Nolan campaign to try and find a match with the aim of getting more recruits to the register and wondered what my genetic background might be.

She found out that there had been two cord blood transplants carried out by the boss in Nottingham for myeloma patients, one was doing very well and the other not so well, so not very helpful but both were still alive! I did a trawl of the internet and found a study from France on the use of cord blood transplants in 17 relapsed myeloma patients which seemed to demonstrate a graft v myeloma effect and similar survival stats to RIC allo studies which she found encouraging. On that basis she said she would be prepared to do it. She also had a response from the tissue typing people at Anthony Nolan about my tissue type :-

“For Wendy’s HLA type, she has one half of her type which has been seen quite a lot in European populations – mainly from Eastern Europe, but it’s most common in Croatia, Poland& France (about 6-11%).

The other half of her type has never been reported in any known populations. There is something very similar (A antigen mismatched) in a few European populations (especially Germany/Netherlands).

New haplotypes arise by genetic crossing over, and it isn’t too unusual for HLA-A to be crossed over when a new embryo is created. My best guess is that somewhere in Wendy’s ancestry (and it’s not possible to know at which point) a new haplotype was created in this way, and that the descendents with this haplotype have not spread far enough yet to make it common. This is why it’s fairly easy for us to find a 9/10 match, but not a 10/10. Wendy’s HLA antigens are not desperately uncommon in themselves, it’s just that because the genes in the HLA complex are very tightly linked together, this particular combination aren’t usually found together.

Hope its not too confusing”

Wow, I’m annoyingly rare, a new haplotype, is half of me alien? A lot of this is way over my head but I finally knew there was no point in clinging on to the hope that if I waited a bit longer I might get a 10/10 match or even a suitable 9/10 match as there would always be a mismatch at a major level. So before I had my autologous transplant I knew my options afterwards were either going to be the experimental cord blood transplant or see how long I got from my second transplant and maybe have Revlimid maintenance. I tried to put this out of my head until I had the further meeting with the boss about two months after the transplant and concentrated on getting through it and living day to day.  If I thought about it too much it would spoil my determination to live in the present. And that is what I have to do. That is enough to take in in one post, Part 2 coming soon!

Upping the ante

I haven’t posted a medical update for a while partly because there hasn’t been much to report and partly because I’ve been enjoying life and this fabulous hot summer we are having in the UK seems to find a way of taking up most of my free time. I have been away a lot, trips include to Somerset to visit family, Orgiva in Andalucia to visit a friend  and a visit to Otley to see the Tour de France Grand Depart and more recently a short break in the Manchester Royal Infirmary!

Some photo’s below although not of the MRI!

 

S    

So here goes. I have nearly completed the 14th cycle which is now a 5 weekly cycle with Velcade once a week for the first 4 weeks plus of course the dreaded Dex (steroids) which is a fairly low dose now and I have remained on the Onyx Endeavour trial (see my post Urine saves the Day) My last Velcade injection was yesterday. It is usually on Mondays but on Sunday night after a fun weekend in Nottingham visiting friends I had to go to A&E with a high temperature (39,2*), anything 38* or over is considered reportable plus I’d had diarrhoea and was feeling shivery. Damn nuisance. I arrived 10pm and eventually was given IV antibiotics and told I would be admitted. I lay on a hospital trolley in a hot room with bright lights and the sounds of other patients groaning and kicking off which wasn’t conducive to sleep.  At 4am I was admitted to a bed in a side room on the Acute Medical Unit, slightly better but not a minute’s peace with interruptions for observations, forms to be gone through,drips to be attended to and no pillow! Managed to doze till around 8.30am when I was brought some welcome tea and soggy toast. And then the usual wait to see the ward doctor and much later on a doctor from haematology. I persuaded the haematology doctor to discharge me with oral antibiotics  as my temperature was stable and I hadn’t had any diarrhoea for a while. He agreed on the basis that I said I would have some one with me that evening and would call haematology if my temperature went up again. Yes of course I said to both although a little vague on the former so I was eventually discharged early evening, phew!  An initial diagnosis was viral gastroenteritis.

I am much better for being at home and resting and the diarrhoea is on the way out!! These things happen when on treatment and any infections have to be taken seriously because of my lowered immune system but fortunately this is the first admission I’ve had in the 12 months since I started treatment and apart from the flu I’ve got off fairly lightly. However the love affair with velcade may be coming to an end soon as my kappa light chains have risen again out of normal range even on our lab tests (see my post not good not bad ). At my last clinic appointment on 27 June, it was agreed that I would have another 5 week cycle at an increased dose (from 1.0 to 1.3 so about 30%) but if that didn’t either keep my light chains in check or even better to decrease then I would proceed to an autologous stem cell transplant either without further treatment or with a more intensive cycle of chemotherapy depending on how high my numbers have risen and/or the results of a further bone marrow biopsy.

My next clinic appointment is tomorrow and I will find out the results of the light chain test I had done on Monday (this was after my 3rd Velcade injection). I feel surprisingly calm about finding out the results tomorrow which will determine the next stage of my journey. I realise that I may be leaving my readers on tenterhooks, a little taster of how I feel most of the time but the  waiting is nearly over and I promise to do another update shortly on the outcome!

A Room With A View

“Though life is very glorious, it is difficult.”
―     E.M. Forster,     A Room with a View / Howards End

 

 

 

 

 

 

Another of my favourite books by one of my favourite authors.

The title being apt because I have had my own room with a view of sorts recently.  I took an unplanned short break for a couple of nights in the Manchester Royal Infirmary, not quite the same as Italy!  During this recent glorious spell of hot dry weather I had been feeling a little cold and shivery and was wearing warm winter clothing in the office with the window closed, very unlike me. When I came back from work on Wednesday I was exhausted and was intending to take some paracetamol and lie down but something made me take my temperature with the old velcade thermometer I had been given when I first started chemotherapy and it was 39.1, quite high then. The advice when I was on chemotherapy and after my transplant was to contact the haematology department if your temperature was over 37.5 but did that apply when not on treatment?

I wasn’t sure so I thought I would ring the out of hours haematology line at my hospital. I explained I had relapsing myeloma and my temperature was 39.1 and the person I spoke to advised me that I should go to A&E as I may need antibiotics. I anticipated that they would say that, from past experiences, having attended several times whilst on treatment.

I rang a friend who kindly gave me a lift. I wondered about packing an overnight bag but decided that I would probably be home later and it wasn’t necessary. I duly arrived and showed my haematology alert card which means that I shouldn’t be left in the main waiting area too long and within a short space of time I saw the triage nurse. My temperature had dropped to 37.9 by then and I was beginning to wonder whether I should just go home!

I was then taken to a side room in the amber area. About 3 hours later I saw a doctor who said he didn’t want to give me antibiotics yet but wanted to admit me for observation as a high temperature and fever was a sign of infection. That was about 9pm and I was left there until about 3.30am with a break for a chest xray, after which I was eventually moved to a bay on the acute medical unit. It was a truly awful experience trying to sleep on a trolley with bright lights and continual noise! When they took my temperature again at 4am it had gone back up to 38.4.

From there I was later moved again to a haematology ward after I saw my haematology consultant who said he wanted to keep me in another night for observation and give me some intravenous antibiotics.  It was a different ward to where I had my stem cell transplant but a similar set up with haematology nurses who reassuringly knew what they were doing and with what they were dealing. I was sharing a large room with another patient undergoing a stem cell transplant who was very poorly and the room had ceiling to floor windows with a view of the a car park with some grassy areas beyond it and a modern section of the hospital on the far side of the road. Certainly one of the best views to be had from a hospital bed in the MRI!

Well before I got the intravenous antibiotics, my temperature had stabilised and I felt ok but exhausted through lack of sleep for more than 24 hours. My consultant told me I couldn’t possibly start treatment with an infection in my body as it could end up being much much worse and I expressed my frustration that treatment had been delayed to the point where I had got an infection and now couldn’t start treatment. He tried to explain in a rather abrasive manner that it wasn’t vital that I started treatment straight away as my kidney function was fine and my blood counts were normal but I didn’t really take it in and just felt that my myeloma would spiral out of control untreated. After he had gone I am afraid that I just broke down and cried and cried and cried!  I felt alone and as out of control as I perceived my myeloma to be.

I calmed down a little later on in part due to a chance encounter with my former lovely consultant in the coffee bar who reassured me with far more empathy than my consultant showed, that it would be ok to delay treatment and it wouldn’t affect the outcome although I didn’t ask her what damage if any, was being caused by my rising kappa light chains now at 1032 mg/litre.

So with all the endless waiting around for tests, doctors, nurses and medication over the next 24 hours and in the absence of a working TV or a decent mobile signal, wifi or even a book I had no distractions in my room with a view.

I watched from the chair by the window, people sitting on the grass basking in lovely sunshine, smiling, drinking, eating, being happy and going about their business, in contrast to my sterile prison like environment. I gloomily realised a view of my future, of admissions to hospital, treatments, clinic appointments, transplants, a life over which I had no control but which was shaped and determined by medics, numbers and endless blood tests. This would be the life ahead for me and I would never experience that careless abandonment of those people outside sitting on the grass. It would be a life that set me apart from my friends and peers whom I am already conscious of boring with the latest tales of my relapse and kappa light chain figures. It can only get worse in the future and I don’t want to burden my friends with that but neither can I pretend to be unaffected by it. I don’t want talk about it but I do want to talk about it. I am in danger of becoming alienated from the world my friends and peers inhabit, of planning for their future retirement, booking holidays, downsizing, celebrating their 60th birthdays and making assumptions about their futures which I cant make.

And I know my future will be about more than that and there will be good times ahead but right now I am feeling a little bleak and don’t want to or cant feel positive or “keep my chin up”. I try to live from day to day but my two days away didn’t help to keep my spirits up.

“I never think of the future – it comes soon enough.”
―     Albert Einstein

One year on

It will be exactly a year on Saturday since I had my autologous stem cell transplant (called autologous because my own stem cells were used). The day they are given back to you is called Day Zero, the days before minus 1 minus two etc. On -1 day, I had enough of a chemotherapy drug called Melphalan to kill me in an isolation room at the Manchester Royal Infirmary Ward 44 but on day zero  (1st September 2011) I was rescued by having my own stem cells put back which had previously been collected from my blood stream and frozen.  In my case I just had one bag back as there was a high concentration of stem cells in my collection and had harvested 4 bags in total, the other 3 bags are still in a freezer stored at some ridiculous number below zero. It took about 20 minutes by infusion. An anti hystamine is given prior to the infusion to minimise any reaction. Its no big deal on a physical level and I didnt have any reaction other than to emit a smell of sweetcorn which is very common. I couldnt smell it to start with but the nurse could. Once administered the baby stem cells needed to develop to form my new immune system as Melphalan was in the process of destroying my old one.
I waited impatiently in my isolation room for my neutrophil count to drop to zero which meant I had no immunity and takes about a week to kick in. I was allowed home over the first weekend as I was not neutropenic. Then as I got down to a lower neutrophil count, the side effects of the chemotherapy such as mouth sores, sickness and diarrhoea, nausea, loss of appetite and extreme fatigue develop and continue for about a week. My recollection of this phase is somewhat of a blur but I know that I got off lightly compared to some people with the side effects. My main issue was fatigue and lack of concentration. I had taken lots of books, audio books, DVDs, IPod and my laptop in with me but found it difficult to concentrate on anything for longer than 15 to 20 minutes. The TV in the room didnt work very well so I couldnt distract myself with that but the one thing that I did enjoy was the complete series of the danish version of the Killing which was gripping!
What stem cells look like (not mine)

I gradually started to feel less fatigued and more bored. My appetite returned and unusually for someone going through this process I wanted to eat but not what was the standard hospital fare. I started ordering off the Halal menu as the food was fresher and more interesting but perhaps a bit spicy for my delicate stomach. Then I discovered the West Indian menu and the Kosher menu but on the one Sunday I was there I had the roast dinner.  I couldnt eat it, it was so disgusting! Soggy and tasteless.

On day 14 I was allowed to go home as my neutrophil count had gone upto 3.2 so I was considered sufficiently recovered enough to be discharged home but had to be extremely careful with food hygiene and avoiding risk of infection for the first few weeks. I was tired and depressed, taking to the bed for most of the afternoon and was very short of breath hardly able to climb the stairs. However gradually everything improved. After my bone marrow biopsy around 3 months post transplant I was told I had a very good partial response as the percentage of abnormal cells in my bone marrow was less than 5% and my light chains were in normal range. I dont really understand why I didnt have a complete response but it was something to do with there being some paraprotein although too negligible too measure.

I had a new immune system.  When I went to see my acupuncturist, Amy Lai, she said I had crossed over to the other side and welcomed me. A beautiful canadian/indian actress called Lisa Ray claims to feel reborn since her stem cell transplant. I think if I looked like her I would feel reborn too!

So what do I feel?

I do feel like I am living a normal life again and like Lisa Ray (although she declined to take maintenance drugs, I didnt have the choice) I am drug free because the NHS wont pay for me to take effective maintenance drugs which have been proven to double the length of remission. Oh well.

Its scary how I have returned to a normal life on the surface. I am back at work, going on holiday, exercising, socialising, planning things (upto about 6 months ahead).  I can almost pretend that I  wasnt diagnosed with an incurable life limiting illness. Last year seems unreal and I dont pass a day without my mind making a connection with some aspect of my illness or recalling some details or incident from last year. Between December 2010 and December 2011 I spent 28 days staying in hospital altogether (kidney failure, diarrhoea and stem cell transplant). Not to mention the numerous hours put in at the haematology day unit with appointments and treatments and all the waiting in between. I suppose it is not surprising that I cant just put it behind me. Now its once a month for Zometa (the bone strengthener) and a three month clinic appointment. I sometimes strangely miss the hospital visits and the care and attention I had whilst there.

So I am going to be celebrating on Saturday, am I one year old in my new life so it is my first birthday or is it an anniversary? Or both!! Whatever it is I want to celebrate. My new immune system is one year old  but is still in its infancy as evidenced by the countless viral infections I have suffered but hopefully like me is getting stronger although my immune system will always be compromised.

I still have to live with the uncertainty of when the Myeloma will return. The standard advice is that it extends remission by 12 to 18 months but I dont know how long the remission would have been from the treatment alone so that doesnt help. There are people I know of who have been in remission for over 10 years and continuing but then there are people who dont even get 12 months before they relapse. The good response I had to the transplant doesnt mean that my remission will last longer. The way I feel now is that I cant believe I ever had Myeloma and I find it difficult to accept that it will come back because I am in good health. I almost look at last year as a gap year, time out to have cancer instead of travelling the world and having a life changing experience but although I didnt travel the world I did have a life changing experience. My life changed irrevocably last year and will never be the same again and now I am trying to inhabit a new normality, a way of being that means that I still try and make the most of life and not take anything for granted but daring to think a little further ahead and make plans for the future.

From the Run to the Runs

 

Nearly three weeks after the elation of running the 10k and about a week after I got back from a holiday in Italy,  I got a very bad episode of sickness and diarrhoea. Oh the highs and the lows.

No one I had been with or eaten with had got it so it was something I picked up all by myself.  Sunday night and Monday day  were the worst and I had to cancel my monthly bone strengthener treatment (Zometa) at the Haematology Day Unit as I wasn’t well enough to go in and also you are not supposed to attend if you have had sickness or diarrhoea within the last 24 hours.  By Tuesday, I was getting a cold as well. I rang my GP and he suggested I take antibiotics but as it was getting to closing time it would be too late to issue a prescription. I remembered I had an emergency supply at home so he told me to take them.  I started to feel better over that evening and the next day the trend continued so I went in for my Zometa on Wednesday morning. I had wanted to go because before Zometa is administered a blood test is taken to check kidney function. I knew I was being paranoid but some of the symptoms I was feeling with the infection were similar to those I had when I went into acute kidney failure which were shortness of breath, tiredness, lack of appetite so I was relieved that my glomular filtration rate was over 90.  Relief but I am annoyed with myself for the unnecessary anxiety I felt.

It also took me back to almost the exact same time a year ago when I was admitted to hospital for 4 days with chronic diarrhoea, the cause of which was unknown. It started when I was on a short break in the Algarve. I thought it would get better when I got back but it didn’t, it got worse and so I rang the doctor on the haematology ward and she said that I should probably go to A&E. It was Saturday night and I didn’t want to go and sit for hours in A&E  so she agreed I should go first thing on Sunday morning if it wasn’t improving.

I drove myself there on Sunday morning expecting to be back in a few hours as I had planned to go with friends to the Chorlton Open Gardens Day (why I thought I was going to be able to attend that is beyond me) but I ended up being admitted, put on a drip and blood and stool samples taken.

Because of my infection and risk of infection due to just completing my last round of chemotherapy I was put in an isolation room on the Medical Assessment Unit which is a pretty dismal ward where people are put because there is nowhere else for them to go and they cant stay in A&E. I had to call some friends to bring some pyjamas in for me and some other stuff and drive my car to another car park.  The room was hot, small, stuffy and noisy.

I then got moved to a room on the acute medical ward and spent another couple of days there. it had a pay TV so at least I could watch Wimbledon. They weren’t giving me any antibiotics to treat it until they had established the cause. It was at the time of the outbursts of ecoli in Europe which was eventually linked to a bean sprout producer in Germany I think so the medics were concerned that it could have been ecoli but then ruled it out as there were no reported outbreaks in Portugal and tests were negative.

The only good thing about being in hospital is that I bumped into my haematology consultant whilst I was having a walkabout and she told me that there was good news about the results of my bone marrow biopsy which I had done the week before.  There needed to be less than 10% abnormal cells before I could proceed to the stem cell transplant stage of my treatment and when I saw her in clinic on Friday she confirmed it was less than 5%.  So I was discharged on 22 June with some phosphate supplements as my phosphates were low and then gradually got better but running to the toilet 14/15 times a day is not a pleasant experience! Below is an extract from my discharge sheet.

So with having a compromised immune system I was worried that I was going to end up in hospital again but this time my body fought it and I recovered within 48 hours and also was able to attend the Chorlton Open Gardens this year which was on Sunday 24th June. About 25 gardens in Chorlton were open to the public in aid of Freedom against Torture Charity and I managed to get round 15 of them, all of which were lovely, some of which were stunning and inspiring. Here is a photo of a pond I particularly liked.

So all good again.  I think I was particularly anxious this time because of the uncanny timing with the episode last year, the symptoms of fatigue and shortness of breath which were part and parcel of my infection which I was worried was to do with my kidneys and because over the last two months or so 4 people of around my age with myeloma that I know of have died because of serious infections. When I hear about this I feel extremely sad for them and their families, scared and down too because it is a reminder of what may happen to me. Not likely whilst in remission but I DONT KNOW HOW LONG THAT IS GOING TO LAST! I have a clinic appointment next Friday when I should find out my latest free light chain results, wish I could stop feeling anxious.

Just read a very good quote from Daily Encouragement by Daisaku Ikeda which a facebook friend posted.

The important thing is to advance brightly and strive to be victorious at each moment, right where we are; to begin something here and now instead of fretting and worrying over what will happen. This is the starting point for transforming our lives.

This was such a timely post for me, thanks RF!

Another cold!

The day after my clinic appointment on Friday 13th April,  I got another cold which came from nowhere, a slight sore throat, tiredness and then the next day a full on cold when I woke up in the morning.  This is my third cold in the seven months since my stem cell transplant and they tend to linger. The one I got between Christmas and New Year lasted about 5 weeks!  I dont understand why exactly but know I am more prone to infections and that my immune system, even in remission, will always be compromised which is perhaps why they last longer as well.  It could also be something to do with building up immunity  post transplant which is why I had to have my childhood vaccinations again (for more on this see my childhood vaccinations post).  It seems to be a common issue amongst my myeloma friends.

As it was persisting and as I had got a weekend trip planned to Palma, I went to see my GP last Thursday and he gave me a 5 day course of antibiotics. Why, I asked as a cold is a viral infection not a bacterial infection?  He said really as a preventative measure as he didn’t want it to turn into pneumonia. Mmm!  When I was on treatment I had numerous colds and coughs and other infections and was given antibiotics as a matter of course. I also had an E Coli infection in my urine which was spotted by my GP fortunately and very powerful antibiotic given to treat it. I turned out to be allergic to Penicillin which I had never previously been allergic to as well as some of the anti prophylactic drugs I was taking.  I developed sensitivities and allergies to all sorts of things whilst on treatment.

Anyway I am slowly getting better and went to Palma and am so glad I didn’t cancel as it did cross my mind that I shouldnt overdo things but my GP told me it would do me good to get a bit of sunshine so off I went!

I had arranged to stay with some friends who are living over there for a few months and had a great time, the sun was out mostly and it was warm. I had warned my friends that I wouldn’t be up to much because of my cold but all that went out the window when I got there!  A meal out on Friday when I arrived, a full day of sightseeing around Palma on Saturday, a hair-raising drive through the Tramontera mountains followed by a couple of hours on the beach at Deia on Sunday and on Monday, I took the wooden train to Soller, then a boat trip to Sa Calobra and then back to Palma just in time to catch my flight back to Manchester.

Phew!

I am delighted that I seem to have recovered from my stem cell transplant so quickly. I was advised 3 to 6 months is about the average time it takes.  Not long after I was out of hospital,  I spent a long weekend in the Peak District walking around 4 to 5 miles a day,  a day trip to the Peak District about 4 weeks after my transplant when I had a walk, hired a bike and biked along the Monsall Trail, a weekend in London which was pretty active, followed by a weekend in Dublin (equally active),  a full on weekend in November to Alicante.   A more restful week in Tenerife in February and then a very physically active week in Sweden in March. Oh and returned to work initially a few hours a day working from home a few weeks afterwards and then back to the office.

I seem to have lived life to the full since my transplant. It’s not conscious, it’s more that the opportunities have presented themselves and I have taken them, the only real bucket list choice was to go to Swedish Lapland to hopefully see the Northern Lights as it has been something I have always wanted to do and once it became clear that I wasnt going to have the donor transplant I got it booked.  I am mindful on a daily basis that my life is shortened but can’t live everyday as if it’s the last, it is just not practical or possible. I think I am just trying to make the most of the opportunities that arise, put myself out there a bit more and try things out which perhaps I wouldnt have done before, partly because I was in a relationship and partly because like most people I took my health or my future lifespan for granted.

In spite of all that I do, I would love to have a day when I didnt think about something connected to my illness, when I just forgot about it and took my life for granted like everyone else around me.