Category Archives: Remission

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.

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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.

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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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Filed under Cancer, chemotherapy treatment, fatigue, Health, Multiple Myeloma, Myeloma, Remission, Travel

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!

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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

 

 

 

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Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Travel, Uncategorized

Ain’t nothing but more bad news.

The post I had intended to write around the 7 months post transplant mark was going to be a slightly celebratory post about being able to enjoy “dirty” food having adhered to a clean diet for the first 6 months after my transplant. Following a clean diet means nothing unpasteurised, nothing live, no raw protein sources, superfastidious washing and peeling of fruit and vegetables, no open deli or bakery stuff and lots of other things. I didn’t majorly miss anything as my appetite was quite poor anyway. After 6 months I bought some of my favourite blue cheese, some unpeeled red grapes and was hoping to enjoy with a glass of red wine. The cheese was delicious but the grapes and the wine not so because of the GVHD in my mouth resulting in very altered taste. The taste is proportionately worse as the nutritional benefit of the food increases and I mostly enjoy extremely salty and/or sugary foods!

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Around the 6 month mark and except for the gruelling Cidofovir treatment I mentioned in my last post I felt I was getting stronger and less tired. I barely had time to enjoy my progress and recovery. So much has happened since that post 3 months ago I can do no more than briefly outline it otherwise I will continually be playing catch up which really isn’t what I wanted this blog to be about.

26 October

I got the devastating news that my light chains were rising from the test on 13 October, not just creeping up a little as they had been but going up sharply from 127mg to 634mg.  The plan to be off Cyclosporin (the immune suppression/anti rejection drug) and hopefully stimulate some more GVHD and graft v disease effect hadn’t worked  and wouldn’t work now that the myeloma burden was too high for my new immune system to have any control over it.

2 November

I started myeloma treatment which consists of Revlimid, an oral chemotherapy  which I take daily 3 weeks on and one week off and my old adversary dexamethasone, 40 mg once a week. I have had Revlimid before as part of VDR Pace but only for one cycle and I didn’t have any response to the regime. The hope is that now I have a fledgling new immune system, the myeloma may be resensitised to  Revlimid and/or it might provoke some GVHD.

5-7 November

A good weekend in London visiting a dear old friend taking in the excellent Weiwei exhibition, and the lovely Eltham Palace. I was tired but we managed to achieve a good mix of relaxing and doing.

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23-28 November

A shortish break to Gran Canaria with my lovely oldest friend (old as in length of friendship, not age). A bit of a mixed bag as I was not really well enough to enjoy it but felt pressure to do so because I had gone and thought it was an opportunity to get away whilst I was able to.  It was good to get some sun on my skin (through the factor 50 sunblock of course) and swim in the sea but I couldn’t enjoy the cuisine or the drink because of my altered taste apart from the divinely salty pimentos padron.

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30 November

I found out that at my last light chain test 0n 16 November, two weeks into the treatment my light chains had risen to 990mg. The plan remains the same which is to have 4 cycles of treatment, each cycle being 28 days. I was told to ignore this test, logically I know this is right for various reasons but emotionally I couldn’t. Given the depression I have been feeling combined with the treatment being so hard on me, it would have been some consolation to know that I was responding.  I wasn’t to be tested again to the end of the second cycle on 29 December and will shortly find out the results. Started my second cycle, no GVHD or major reactions so far, the boss thinks if GVHD hasn’t happened by now, it probably won’t. More bad news in a weird way.

21 December

Suspected urine infection with associated high temperature. Was reviewed in the Haematology day unit and discharged with antibiotics rather than being kept in. Phew! Some good news, the Adenovirus test was negative and the CT scan of my chest was clear in the sense that the persistent cough I have had for the past 4/5 months wasn’t caused by GVHD or anything else however it did show myeloma deposits in the cervical skeleton but they may have been there for a while and I’ve still got rhinovirus.

29 December

Started my third cycle and will find out the results of my light chain test probably tomorrow if they are back from the lab in time. I have been anxiously waiting the last 6 weeks for this result but today I feel strangely calm about it.

31 December

Clinic appointment………………………………..??????????????????????????

This is the post I have been too fatigued, depressed and anxious to write as I struggle to come to terms with this relapse less than 7 months after my allogeneic transplant and all that I have been through. I knew that myeloma would come back but hoped for longer. I can only write this today because I’ve got a little more energy and inclination from the dexamethasone. I am also aware that this makes painful reading, another reason for putting it off and that I don’t know what to say to people about how I’m feeling and I suspect most people don’t know how to respond. I think I just want to be able to express my feelings in their entirety, the good, bad and the silly and be listened to. More of this maybe another time.

My fears now are not that I will die of transplant related mortality although there is still a 15 to 20% chance that I could in the 12 months post transplant but more that I will die from disease progression, that the treatment will not work as the myeloma becomes more aggressive and I will run out of treatment options quite soon. I don’t think I am afraid of actually dying though as Woody Allen says “I don’t want to be there when it happens!”  What I fear more is what my quality of life is going to be like in the interim and whether I will be able to do the things that matter to me. I fear having regrets. So far I have found the treatment so gruelling both on my body and mind (especially the dexamethasone crash for 3/4 days), I am barely able to find the energy to do or concentrate on anything due to the overwhelming fatigue, low level infections and insomnia. My mind swirls with crap and I can’t do living in the present very well. I am neither feeling positive about my future or strong, more a sense of failure. I certainly do not want to be told to cheer up, stay strong or be positive. I think my views on being positive are already known to most of my readers!

This time of year also has so many disturbing memories for me too, being 5 years since I was diagnosed, the kidney failure leading up to that and my first relapse around December 2012. This year was the toughest yet, got to say that was mostly to do with dex withdrawal but taking them on 23rd December gave me the energy to bomb down the motorway to Somerset where I spent Christmas with my sister and family. I had pre warned them that I would be tired, grumpy, withdrawn and irritable. I think it went ok and I managed to retreat to my bedroom when I needed to without feeling under pressure to be merry but finding enjoyment in being with my family, especially my lovely 8 year old niece who outclassed me at Mastermind (the old code cracker game, not the TV quiz).

Anyway I am feeling tired now but pleased and relieved that I have finally got round to doing this post. There is a whole lot more that I want to write and explore but that will hopefully have to be for another time.

In the meantime I wish you a happy new year.

“For last year’s words belong to last year’s language
And next year’s words await another voice.
And to make an end is to make a beginning.”

TS Elliott

 

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Filed under Cancer, chemotherapy treatment, Cord Blood Transplant, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant

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.

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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!

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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!

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Ain’t nothing but bad news

I started this post over a month ago but have never been well enough to finish it before something else happens that I want to write about so I am continually playing catch up or editing the post. Rather than completely revamp this one I just want to get it out there and hopefully do a further post quite quickly this time.

It seems as if the holy grail that is remission is slipping beyond my reach unfortunately. I ended my last post, Baby steps to Day 100 on a bit of a cliff hanger as I was awaiting my bone marrow biopsy results. The results were that I had 5 to 10% abnormal plasma cells in my bone marrow. The doctor that gave me the results seemed to think this was good until I pointed out that it was the same result as before the transplant. He then described my disease as stable and said the transplant was probably working and it was early days and I was still on immune suppressant drugs blah blah blah.

I was very gloomy but slightly cheered by the light chain results which showed a reduction from 44 to 29 the second downward result. Not normal range which is up to 19 but not far away. At least that was some good news……until I got the next result a couple of weeks later which was they had shot up to 99 and then the next results two weeks later that they had increased again to 147.  It looks to me like my transplant has failed but my medical team are not using the R word yet.  The boss’s plan is to get me off the immunosuppressant drugs that I have been on before and since the transplant as soon as possible. I am just on cyclosporine now.

Immunosuppressants (anti-rejection drugs), are intended to suppress the function of the donor’s immune system for a long time after the transplant to help reduce graft versus host disease and the risk of graft rejection. I probably would have been tapering down earlier had I not had acute skin GVHD and been on steroids for 4 months. The hope is that as I gradually come off the immunosuppressants I will get some GVHD and also some graft versus disease effect. If that doesn’t work over the next two or three months and my light chains continue to rise quite then I will have to start chemotherapy treatment. Not even 6 months from my transplant and the possibility of being back on treatment looms.

Even though I no longer count the number of relapses any more as I’ve not actually been in remission for sometime now, this news comes with huge disappointment after all I have been through with the transplant and continue to go through.  I’ve not told many people about my latest light chain results as I can’t bear the weight of their disappointment resounding my own. I would like to be able to convey some good news but there seems to have been little of that since my last post especially in the last couple of months.

On a better note, prior to finding out my light chain results, I had enjoyable weekends away visiting friends in Otley and Nottingham and family in Whitley Bay. I felt I was getting stronger and whilst in Nottingham managed a longish walk in Lambley through fields of ripe golden wheat just ready for harvesting on a lovely sunny day with huge puffy cumulus clouds floating around the big blue sky. And the next day,  a gentle cycle ride around Attenborough Nature Reserve alongside the languid river Trent. The first time back in the saddle for quite some time, it has given me the confidence to want to do more. I was feeling good. Now I really need to hold on to that feeling.

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Then a week or so later I got sick and all those good feelings combined with the news of the rise in light chains set off my anxieties and fears. I started getting temperature spikes every evening and some sort of urinary tract problem which was immensely painful. I was given broad spectrum antibiotics and numerous tests were carried out but the actual type of infection or infections could not be identified which is quite common other than that I had adenovirus ( a common respiratory infection with cough and cold like symptoms but which can be life threatening in post allo patients) yet again. I was told to call the out of hours helpline if my temperature went to 38″ or above. I knew if it did I would end up having to go to A&E and so every evening became a tense game of waiting and watching. The recent loss of yet another friend with Myeloma to sudden pneumonia after his second stem cell transplant played on my mind as did the fact that the last time I had temperature spikes like this was after I relapsed the first time and myeloma was becoming active again. Fortunately I have not had the temperature spikes for the last few weeks and the urinary problem has gone.

I am so bored and tired of it all, there seems to be no end point in sight other than the most feared one. I’m bored of telling everyone my bad results, bored of having infections and being tired all the time and no doubt everyone is bored of hearing about it. People move on with their lives and their daily business  and I feel like I am stuck in a no man’s land with no way out.

When someone asks how are you, how I answer depends on who is asking, the doctors and transplant nurses want to know the gory details of my bodily functions, fine, they like detail and need to know, but when I say I am really tired or my legs ache all the time, they don’t have an answer.  When family and friends ask, I feel it sometimes crosses too many boundaries to go into detail and there are many responses I could give and sometimes I just don’t know how I am. I am told by my medical team that I am doing really well but it certainly doesn’t feel like that. I think my best and most honest answer at the moment is I’m surviving.

“Does anything in nature despair except man? An animal with a foot caught in a trap does not seem to despair. It is too busy trying to survive. It is all closed in, to a kind of still, intense waiting. Is this a key? Keep busy with survival. Imitate the trees. Learn to lose in order to recover, and remember that nothing stays the same for long, not even pain, psychic pain. Sit it out. Let it all pass. Let it go.”

― May Sarton, Journal of a Solitude

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Baby Talk Part Two

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Firstly please ignore the post from last week, I was spewing out a quick draft whilst waiting to be seen at the hospital, clicked on what I thought was the button to save it but it turned out to be the one to publish it! Damn, those that follow my blog by email will have seen all my spelling mistakes and poor use of the English language!

Anyway back to Part 2 of Baby Talk. Just to refresh your memory from my last post, Baby Talk Part One, I’m at the post auto transplant meeting with the transplant boss. She’s told me the bad news that it looks like my stem cell transplant hasn’t worked, then she dropped the bombshell that I am unlikely to respond to Revlimid as the next line of treatment and then that the donor transplant as an option is a no goer as there will never be an adequate match for me. Can it get any worse?  For those reasons she suggested a cord blood transplant which she has never done for myeloma before but would be willing to give it a go.

She explained what is involved and the risks and benefits of the procedure. The risks are numerous from failure to engraft, meaning that the cord blood stem cells don’t take in my bone marrow so I could die because my bone marrow has been wiped out by the conditioning chemo I will receive prior to the transplant. Then there is high risk of infection whilst I am neutropenic and waiting for the new stem cells to engraft and also for the next year or so. A clean diet must be followed for 6 months and travelling abroad is not possible for 6 to 12 months. Hence all the holidays! And finally I am highly likely to develop some graft versus host disease which in the first 3 months or so is called acute and after that it would be considered chronic which could be a long term issue. GVHD is where the new stem cells don’t like being put into my environment (me being the host) and attack it causing skin, gut, mouth, liver or other organ problems which can be life threatening or “not compatible with life” as another doctor recently said to me.

And of course while all this is happening there is the possibility that the myeloma is coming back. The only good thing about getting GVHD is that hopefully it means that the new stem cells don’t like my myeloma cells either and attack them too, as long as the myeloma burden is not too high. And that in essence is how a donor transplant works whatever the source of the stem cells ie adult or cord blood. It is a form of immunotherapy, the aim of which is to replace my defective immune system with a new healthy one.

So the benefit is that it could give me a new immune system that deals with the myeloma cells and kills them in a way that my own fails to do. That is if I survive the procedure and don’t get any life threatening infections or GVHD. This graft versus myeloma benefit could last a long time, as I said before, a small proportion of patients may be considered “cured” and die of something else.  Or more likely according to the boss, I could get a year or two out of it before I relapse. I have to view it as extending my treatment options rather than being a cure. When I relapse I can be retreated with previous drugs that I may have been resistant to as my immune system will be different as well as being able to try any newer treatments that have come on to the market so it gives me more options (with the remote possibility of being curative) than I seem to have if I don’t have it.

If the autologous stem cell transplant had been effective then the decision would have been more difficult as I could perhaps count on 6 months or so remission, then a slow relapse before I needed to start treatment again. But the way it looks now is that my light chains are slowly creeping up and I would need to start treatment quite soon and that treatment might not work, if the boss’s fears prove to be correct. I’ve been quite heavily treated and the more treatment you have the harder and stronger a different myeloma clone comes back.

I left that meeting feeling overwhelmed and upset but more or less deciding to go ahead with the cord blood transplant assuming there were cords available and my light chains had not risen significantly higher. I would have a 3 month post transplant bone marrow biopsy to find out. Then I thought of more questions to ask after I left and had a second chat with the boss to talk it over again the next day. The talk was of having the transplant as quickly as possible and I needed to make a decision so that the cord blood tissue typing process which takes a few weeks and costs thousands of pounds could be commenced.

This was probably the most difficult decision that I would ever have to make. How do you decide? Toss a coin, ip dip, set up a poll on my blog and ask readers to vote, weigh up the evidence (there is hardly any), ask my friends what they would do (they don’t know), ask others I know with myeloma?  I was on the horns of a dilemma. The boss said there was no right or wrong choice, just the one that I felt sat right with me. Am I a risk taker in life, no not really, but maybe this was the right time to be one?  I am also very indecisive about the simplest of decisions which coupled with my cautious nature and resistance to change does not equip me very well to make decisions. Yes I had previously decided to have a donor transplant before but the risks were fewer, I was 3 years younger, in very good remission following my transplant and assuming I would have a fully matched adult donor available. At the second meeting I thought about asking the boss the question what would you do if you were advising your sister or if it was you, not sure whether to ask it or not as I thought most doctors would duck out of answering that question, but she volunteered the information saying that if she were me she would do it. I asked her if she was recommending that I have it with all the inherent risks and she said yes she thought it was my best option, not that there were many.

It was that strong expression of opinion which is quite unusual from doctors that helped me make my mind up to go ahead with it and she said she would initiate the cord blood matching process and arrange a bone marrow biopsy. I asked about going on holiday as it was only two months or so after my transplant and a little early for travel abroad and she said go for it, life is too short and so I did!

Between coming back from Egypt and going to Iceland I had a bone marrow biopsy and when I got back I got the results which were that I had 5 to 10% abnormal cells in my bone marrow. If it was much higher than this than the cord blood transplant wouldn’t go ahead and the doctors seemed to be pleased with the results and I was given an estimate of mid to late March for admission for my transplant which involves a stay in hospital of 4 to 6 weeks.  I have 10 cords that match and the absolute best two have been selected, one from within the UK and the other all the way from Australia! NO expense spared! I have passed the various pre transplant heart and lung tests, am feeling pretty fit and good to go.

I now have a date of the 20th March for admission and the start of the conditioning chemotherapy which will go on for 5 days, followed by total body irradiation on the 6th day and the cord blood stem cells infused in the same way as my own cells were last time on the 7th day. Then I have to wait for the new cells to engraft whilst becoming neutropenic. If they do engraft and my neutrophils pick up I’ll be allowed to leave, if they don’t then as a last resort I could be given my own stem cells back to rescue me as I still have some left. Then I will be closely monitored and on powerful immunosuppressant drugs for around 100 days afterwards.

The last month or so I have spent lovely precious time with my family and friends. I have been happy but also highly emotional in a good way,  everything and everyone seems better and brighter, like I am seeing the world through rose coloured glasses or maybe I truly have been living in the moment (or maybe I have taken drugs of a non medical nature).

I am nervous, scared and anxious and despite my views on positive thinking (see a previous post, hello relapse, goodbye remission)  feel that this is the time to take a risk and be positive as long as no one is telling me to be positive!

I intend to blog about my experience in hospital to try and while away those 4 to 6 weeks in an isolation room but in the meantime wish me luck!

 

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2014 in review

The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog.

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

Just before a very cold and white Christmas in 2010 I was diagnosed with multiple myeloma. I literally collapsed into a heap in the corridor of the Manchester Royal Infirmary when I found out what that meant. I thought my life was over and I would be dead within months.  I was right about  life being over as I had experienced it before myeloma but thankfully wrong about my demise being imminent. Since then life has been different, far more challenging both physically and emotionally, but bizarrely more rewarding and dynamic. Four years on, 2 autologous stem cell transplants, several different types of treatment, multiple relapses, hundreds of blood tests, hospital visits, 9 bone marrow biopsies and numerous holidays later, I am still here! That I am celebrating that is good but bittersweet as it serves to remind me of the loss of my previous healthy life and the passing of others with myeloma who didn’t make it to 2015.

Thanks to all those who have followed and commented on my blog in 2014. That my blog has been looked at 19,000 times is amazing albeit that the most popular post is still frothy urine, as it was in 2013! And I still have it!

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SKOL!

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And finally, my second stem cell transplant….

My second autologous stem cell transplant happened at last on Friday 7 November. This procedure has been looming like a pirate ship bobbing up and down on the horizon since my light chains started increasing in January 2013. It was there in the distance but I suppose it was only when Velcade stopped working in around July this year that the pirate ship came closer to shore. It was cancelled in September because my bone marrow biopsy showed the presence of around 10 to 15% abnormal cells so I had one round of VDR Pace which I described in my last post. It was re-scheduled for 12 November, about three weeks after the VDR Pace finished but was brought forward when it was found out that my light chains hadn’t gone down after the VDR Pace but had in fact gone up a bit, much to my disappointment.  The aim was to admit me on 3 November but then as there was no bed available I ended up having the chemotherapy as an outpatient on Thursday 6th November and was treated as an outpatient for the first 5 days. I found the chopping and changing about very frustrating but somehow seemed to remain fairly calm about it, accepting that there wasn’t much I could do that would have any effect on the situation.

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Anyway I’ve had “it” now and am day 44 post transplant so long is it since my last post! As I didn’t start my blog until after my first transplant, I want to explain in a bit more hopefully non technical detail about what is involved. To call it a transplant is slightly misleading as really it is a massive dose of a chemotherapy agent called Melphalan which is a form of mustard gas coincidentally. I had this on what is called “Day – 1” as an outpatient. It was administered as an infusion over 20 minutes or so into my PICC line but prior to this and afterwards I was given lots of fluids through a drip as well. I started around 2pm and was finished by 9pm. I was tired but otherwise ok.

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The selfie is of me having the Melphalan whilst sucking an ice lolly. It is thought that sucking ice so the mouth is numb whilst you are having the chemo can help avoid reduce or avoid mucositis (a sore ulcerated month caused by chemotherapy). I had about 5 ice lollys and don’t want another ice lolly in my life again! I compared VDR Pace as being equivalent to a Zombie Cocktail in my last post because it is a mixture of a number of different cytotoxic agents. I would say Melphalan is the equivalent  of absinthe, the strongest alcohol that can be legally bought. The dose administered was enough to destroy my bone marrow so it can’t make any blood cells and I would die!

This is where the transplant part comes into play. Stem cells to the rescue! The day after the melphalan, called Day Zero, I was given back my own stem cells via an infusion over about 10 to 15 minutes, no big deal and certainly not an operation as some people understandably think I had. My stem cells were collected in July 2011 prior to my first transplant via my peripheral bloodstream. There was enough for 3 or more transplants collected and the cells have been stored at some ridiculously low temperature.  The newly transplanted cells are there to replace my body’s source of blood cells after the bone marrow and its stem cells are destroyed by the melphalan.  More like a rescue operation assisted by daily injections which promote the growth of white blood cells given around day 7.  Waiting for the new stem cells to engraft is the worst phase of the procedure and I was neutropenic, meaning I had no white blood cells or neutrophils which are the cells that fight infection.

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In the photo above kindly taken by the lab technician that brought the stem cells over to the ward, the bag of reddish coloured fluid is my stem cells, they went in over about 10 to 15 mins, no big deal. I felt fine. Afterwards I went to the cinema! I was told to come back for a planned admission 4 days later. Over the weekend I felt reasonably ok with my parents staying to keep an eye on me, but by Tuesday, Day 4, I was feeling quite weak and nauseous and was ready to go into hospital. I then spent the next 9 nights in hospital in an isolation room whilst my neutrophils went to zero and was allowed home on Day 13 when they had risen above 1. I got off fairly lightly as some people are in hospital for 3 to 4 weeks.

The incarceration was unpleasant but bearable and actually the time passed reasonably quickly. I watched a lot of TV, listened to the radio, went online and managed some light reading in between trying to sleep and spending time on the phone! I had a few visitors too. I was lucky enough not to get any infections. Coming out was great but in some ways felt scary because the recovery process was only just beginning and I was on my own now without the medical attention and care that I had in hospital. I didn’t miss the constant stream of staff coming into my room though!

The chart below is a really good description of the different phases to the stem cell transplant for those of you who don’t know. At Day 44 I am now in phase 4 or early convalescence. I have had nothing but a common cold in terms of infection which is still the greatest risk I face and my energy levels are returning with me able to do more and rest less as time goes on and my blood counts gradually return to normal.

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What the medics don’t really talk about is the emotional effect of having a stem cell transplant. It is quite common to feel depressed as I did after my first stem cell transplant. After diagnosis, the whole emphasis of the treatment was focused on undergoing a stem cell transplant so everything that happens is a build up to that point. After it happened, it was like now what? I had a sense of anti climax combined with physical weakness. I felt abandoned by my medical team as appointments become less frequent and suffered a loss of confidence which took a while to come back. On top of that I suffered from anxiety about when my myeloma would come back as it does.

But so far after my second transplant I don’t feel depressed, maybe because I know, having experienced relapse,  that this is not the end goal, the holy grail that I was hoping for the first time around and I have less expectations about remission and my light chains being in normal range. I’d like to think that maybe I have learnt the importance of living in the present. I have made a substantial recovery much more quickly than the first time around as well and have already realised that I don’t want to defer doing things until after I have recovered if I feel well enough to do them now. Although I am aware that I need to be careful not to overdo it, avoid crowded places, follow a clean diet, blah,blah blah!

This was going to be a fairly jubilant post about how well I feel so soon after the transplant but it is tempered by the fact that I found out recently that a friend with myeloma died a few months ago whilst having his second stem cell transplant in hospital. He had a wealth of knowledge about myeloma which he was happy to share with me along with a mutual love of tennis.  Another online friend with whom I was in regular contact died shortly after her second stem cell transplant, her body just couldn’t take anymore. She was an artist, photographer and a teacher. A third online friend and fellow blogger who relapsed around the same time as me also died a couple of months ago. They were of a similar age to me and were diagnosed around the same time. This is the sad reality of our situation, I hang out with people for whom death is circling around, not knowing when it will close in, until it does we must try to live with death and to live as well as we can. I am not just talking about people like myself living with a substantial life shortening illness although we have a greater sense of awareness of our own mortality, I am talking about all of us.

So farewell Martin, Eva and Carole.

“While I thought that I was learning how to live, I have been learning how to die”. ~Leonardo Da Vinci

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The end of an era

I am sitting tentatively in front of my lap top opened at my blog not knowing quite where to start with a new post.   Much has happened since my last post that if I don’t make a start, my blog will be as adrift as I am!  So as in the lyrics of Do Re Mi from the Sound of Music:-

“Let’s start at the very beginning
A very good place to start”

The beginning for me is my last post, The Party’s Over.  To recap, I had just started a new more intensive treatment regime called PAD to try and reduce my light chains before having a second autologous stem cell transplant. That treatment finished on 31 August and a stem cell transplant was scheduled for 10th September.  I had pre transplant tests such as a blood tests, swabs for infection, ECG, lung function test and 24 hour urine collection (my favourite!) on 26 August and signed the consent forms. A bone marrow biopsy was arranged for the 2nd September. A couple of days after the tests, the hospital rang to say I had an infection, Parainfluenza 3 virus which had started to manifest itself that day with a sore throat and runny nose which I thought was probably just a cold.  A drug to prevent the virus from multiplying (Ritavarin) and preventative antibiotics were prescribed and for the first week I really was quite poorly.

This coincided with my last day at work on 27 August 2014.  I made the huge decision to stop working a couple of months prior having been considering it for some time. I have been fortunate to be well enough to work since my diagnosis, with a couple of months off initially and some further time off to recover from my first transplant.  My employer has been supportive enough to accommodate my time off for treatment and allow me to work flexible hours. Working has given me a decent income as well as a routine and structure to my life which is outside of the world of cancer. A connection to the “normal world”.  What it hasn’t given me, especially since relapse, is much job satisfaction, as I couldn’t manage a case load anymore for operational reasons and was assisting other colleagues with their work. There was an understanding with my employer that when I was in remission again I would have my own caseload.  However I came to realise that wouldn’t be possible because there would always be uncertainty about how long I would be in remission.  There would be periods of remission and periods of treatment or even periods of remission whilst on treatment and/or periods of no treatment or remission. It’s complicated!  I would always be struggling about whether to drag myself into work when feeling lousy, not to mention being exposed in the open plan air conditioned offices to infections. Not being a productive employee was also affecting my self esteem.

I always had in mind that I would give up work after my second transplant to spend my time doing other things or even nothing, but as that transplant has been shelved for so long whilst in remission from low dose Velcade, it dawned on me that I didn’t know if and when I would get to that point and the time was now, Carpe Diem, as they say!

“Happiness, not in another place but this place…not for another hour, but this hour.”
― Walt Whitman

I want to do things that I enjoy even though I am not sure what those things might be! Some cautioned me that I shouldn’t shut doors that didn’t need to be shut and that work gave a purpose to life other than living with myeloma. Others were concerned about whether I would be able to afford to stop working. The former rather than the latter concerned me more but I decided that working to give purpose to life was a rather conventional view of what may constitute a purpose and there were other things I could do to give meaning to my life.  Although I don’t discount the value of work as a link to the normal world, it has become increasingly difficult to be part of that. As for purpose, what does that mean? I love the quote below:-

“Cat: Where are you going?
Alice: Which way should I go?
Cat: That depends on where you are going.
Alice: I don’t know.
Cat: Then it doesn’t matter which way you go.”
― Lewis Carroll, Alice in Wonderland

I had a break from writing this post to do some work in the garden. Sometimes I go into the garden purposively to do a specific job whether it be pruning a bush, weeding a border etc. Sometimes I go as on this occasion not knowing what I will do until I do it. I cut down some dead flower stems and tidied up a border so was this my purpose without me consciously realising it? Does there have to be a purpose or as Cat says “then it doesn’t matter which way you go”.  There you are, philosophy in action!

My last day at work was quite emotional, marking the end of over 20 years of being a solicitor, and the end of that part of my life and connection with that world.  Now I just want to be! I didn’t particularly want to celebrate what was being called my  “retirement on ill health grounds”. I would not have been able to chose to give up work at the age of 53 if I didn’t have myeloma as I would like everyone else be waiting until my pension pot was big enough for me to retire. Now I don’t care about that! The next day I started feeling poorly with para influenza virus and was quite concerned as to whether I would be able to go on the trip to Verona that was planned for 4 September. I had my bone marrow biopsy on 2 September and discussed whether I was fit enough to go, coincidentally with an Italian doctor from Turin. He said I should see how I felt and that hopefully the drugs would work to contain the virus. I did turn a bit of a corner and so went with the intention of taking it easy but this is more or less impossible when in a beautiful town like Verona where there is so much to see and do. I was stressed and anxious about flying back on the 9th September and my stem cell transplant being on 10th September. I felt I had little time to prepare or pack for a possible three week spell in hospital or to recover from the virus.

Anyway I went and was glad I did despite coughing and spluttering my way round Verona and Bologna. I even went to see Aida at the famous outdoor arena which was fantastic.

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Prior to going away I had asked the transplant co-ordinator if my transplant might be put off until the 17th September to allow me more time to recover from the virus. She said they were already full for that week but that might change. When I got back on Tuesday, I went straight from the airport to the hospital for more swabs and was told that they had decided to put it off the transplant until the following week as I had tested positive for the virus before I went to Verona and they did not want me to be admitted with an infection. I was much relieved to have a little more time to recover and prepare. The next day I had my PICC line fitted and a pre arranged appointment with the transplant lead consultant to discuss the possibility of having a donor transplant after my auto transplant. What was discussed at that appointment has altered the plan once again!  I will deal with this in my next post but to give you a clue, I still haven’t had my transplant!

 

 

 

 

 

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The Party’s Over

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At my clinic appointment on the 1st August, I found out that my kappa light chains had risen quite considerably from 54 to 195mg/litre (up to 19 is normal). So it seems that the increased dose of  Velcade that I referred to in my last post Upping the Ante had no effect.

The new,  young and pleasant doctor I saw who has replaced the lead myeloma specialist, Dr Gibbs, who sadly (probably not for him!) went back to Australia wasn’t quite sure what to do next although it was clear that I would coming off trial. He asked me to attend clinic the following Wednesday to allow him time to speak with his colleagues about the best way forward. I appreciated the fact that he did not try to hide his inexperience.

I spent a rather wet weekend staying near Penrith in Cumbria with some friends. I was pretty anxious and gloomy about what is effectively a second relapse, my anxiety and fears exacerbated by steroid withdrawal. However the gentle beauty of the Eden Valley, the moody majestic peaks of the Lakes, even in the pouring rain,  combined with the company of good friends helped take my mind off my situation.

On Wednesday I saw the same Doctor again. He suggested that I had one cycle of PAD which is a more intensive treatment regime and lasts 21 days, the aim of which would be to knock the light chains down to closer to normal range. After completion of the cycle I will have a bone marrow biopsy to assess the percentage of abnormal plasma cells in my bone marrow and if less than 10%, I will be having my second autologous stem cell transplant probably around mid to late September. The party is over!

I have had the PAD regime before, two cycles in fact during my induction treatment prior to my first transplant. It includes Velcade, a very high pulse of Dexamethasone each week and a standard chemotherapy agent called Doxurubicin.   There is the possibility that my disease has already become resistant to Velcade but it is at a much higher dose on the PAD regime and works synergistically with Doxurubicin so fingers crossed, it is a tough regime but bearable if only for one cycle.

I am now on Day 15 of the cycle and have finished the treatments in the day unit but what is left this last week is the worst for me, the dreaded steroids.   I’ve already described in my post Dexamathasone just how awful I find them.  I have been on a very low dose over the last 6 months (just 16mg a week) and found the effects minimal . The first week of this new regime I was on 160mg!!  Not so bad the days on, apart from sleepless nights, but the crash from Friday to Sunday is unbearable.

It’s not going to be a pleasant or easy next few months but at least it is a plan, the absence of which I have struggled with over the last 6 months or so.  I knew that Velcade wouldn’t last forever and that I would be having a second stem cell transplant, it was just a question of when.  I would have liked more control over the timing and to have avoided the need for further chemotherapy but it is virtually impossible to have any control over the course of this disease. I suppose I could have chosen to have had the transplant when I had reached complete remission after 5 cycles at the end of November but I decided with my consultant to continue on the trial on a lower dose and extend the cycle to a five weekly one. I guess this was a bit of an experiment for him as velcade as maintenance therapy is quite new and untested. My quality of life was pretty good and as I have learnt there is no rush to proceed to the next treatment/procedure as none of them are curative. If something is working with minimal side effects then why stop it?  The downside is living with a very stressful level of uncertainty, having to waiting for results at end of each cycle to determine if I should start another cycle but I was learning to live with it.

I started this new regime exactly 12 months to the day after starting treatment following relapse when my light chains were 6000mg/litre and I  was becoming quite ill with myeloma again. I’m in a different place now, both mentally and physically. It will also be just over three years since my first transplant on 1 September 2011. There seem to be numerous coincidences date wise in my journey with myeloma, I think they exist for all of us but perhaps they are more firmly implanted in my memory. There are significant ones that I will probably never forget such as the date of diagnosis, date of transplant, date of starting a new treatment, date of relapse as well as anniversaries of the same. And of course I have had to become fanatical about writing down on my calendar, dates and appointments for clinic and treatment, having attended hospital over 100 times this past 12 months for treatment!

I thought when I started treatment a year ago that my life would be curtailed by the effects of the treatment but after a tough first few cycles I have enjoyed pretty good quality of life. I’ve been able to carry on working, play tennis, take part in a triathlon, go on hikes and of course holidays of which there have been many!  In essence I’ve had the outward veneer of a “normal” life but beneath the surface is my cancer world, with its endless hospital appointments, tests, fatigue, stress and infections. I find it hard to integrate the two worlds, part of me doesn’t want to (and hasn’t really had to) but as I move closer towards a second transplant I don’t think I will have much choice.

I went for a lovely walk yesterday below Kinder in the Peak District, the heather on the moors was abundant and beautiful with a fragrant aroma of honey, the leaves have started to fall and the sun was mellow and low. The school holidays are coming to an end and autumn is almost here. Approaching my transplant and the next stage of my journey feels like going back to school after the summer holidays.  New uniform, new classes, teachers, a little more grown up, apprehension mingled with curiosity about what lies ahead.

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