Tag Archives: myeloma

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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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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Hard Graft

It has been a long time since my last post, Baby Talk Part Two,, 4 months in fact which was just before I was about to go into hospital for my cord blood transplant. Since then, I have not really felt like writing a post due to a combination of depression and fatigue, nor at times have I been physically able to do so. So much has happened in these 4 months that if I wrote about it in one post it would be far too long and boring, even I will concede that! So I will break down the updates into mile stones starting with my time in hospital and then do some further updates very shortly, except to say I’m still here and doing reasonably well day 111 post transplant!

My time in hospital was extremely tough going both mentally and physically, far tougher than I had anticipated.  When I signed the consent forms and was told that I would spend 4 to 6 weeks in hospital, what the side effects were and complications that might arise, it didn’t really sink in what the reality would be, how could it? I was admitted on Friday 20 March as planned and started my chemotherapy conditioning regime the same day, that was day -6, more chemo days -5 to -2 and then off to Christie’s by taxi on day -1 for total body irradiation. During that short trip I had my only glimpse of the outside world, the sky, the fruiting trees in Whitworth Park and Platt Fields park brimming with pink and white blossom in their full frothy glory. And that was really all I saw of the lovely spring we had as my room did not have an outside view, as you can see. I had those self pitying thoughts that creep up on me occasionally about why me, life’s not fair, why can’t I be like those people walking in the park, enjoying the sunshine, NORMAL HEALTHY PEOPLE!

10610786_872427842782180_774402706416010958_n-2     cherryblossom1

The purpose of the chemo and the radiation I had was to wipe out my bone marrow so it wouldn’t reject the new cord blood stem cells. On the 26th March I received cord blood stem cells from an Australian male and the other from a UK female by two simple injections into my Hickman line, one of them would hopefully eventually replace my immune system. No big deal in terms of the actual procedure but a huge deal in terms of the consequences.

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Now it was a question of waiting for my neutrophils to go to zero which would mean my bone marrow had been wiped out and the cord blood stem cells to engraft which I was told could take around 3 weeks during which time I would need to remain in hospital because I would be neutropenic and at high risk of infection. The first week passed fairly quickly as there was a lot going on and I wasn’t feeling any side effects from the chemo yet. I had quite a few visitors, tried to stay active within the confines of my room and was given antibiotics for a low temperature which the docs said could be a sign of infection as much as a high temperature. No infection was identified which is quite usual but antibiotics are given at the slightest whiff of infection as a precautionary measure.

The next 10 to 11 days  the side effects kicked in, nausea, vomiting, diarrhoea, fatigue, boredom, lack of appetite (especially with the disgusting hospital food on offer). I couldn’t concentrate on anything due to fatigue but I couldn’t sleep during the day due to the constant interruptions of nursing and support staff entering the room.  I also got a skin rash on my body which the docs seemed to think might be graft versus host disease (when the donor’s immune system attacks the recipients body). I was on drips all the time for this or that and occasionally oxygen because of low saturation levels. It was much harder than I imagined and harder than the two previous transplants I had using my own stem cells. I felt extremely low and started to question whether I had made the right decision although it was clearly too late to change my mind. I wondered how I was going to cope mentally with another couple of weeks in hospital. I couldn’t be bothered to get out of bed most of the time or watch all those TV box sets I had brought in with me or have visitors.  Looking back now it all seems like a horrible blur. My concept of time altered and time as I knew it didn’t exist. The days were long and passed slowly blending into the nights but the weeks were short. Time to me was defined by the daily routine of being in hospital, the regular observations, my bloods being taken, the cleaning staff coming in to their jobs, the tea trolley rounds, meal times, doctors visits, medication times and visiting times.

Then on day 15 post transplant after three weeks in hospital, a ward doctor told me I could go home as my neutrophils were more than one so I wasn’t neutropenic and the cord blood stem cells had engrafted. I was somewhat surprised as my consultant who was on holiday that week had said I would take around 3 weeks for engraftment and she would see me next week. Anyway I wasn’t going to argue and  feeling pleased to be going home off I eventually went with my mum and my sister. The next day following a high temperature during the night I was admitted via the day unit to a different general medical ward having lost my room on the haematology ward and pumped full of antibiotics for a suspected infection which was never identified. I was also neutropenic again. I felt frustrated that I had clearly been discharged too soon and was back in unprepared for a further stay in hospital. After a night or maybe two a room was found for me on Ward 44 where I remained  for a further week and two days until my temperature stabilised and I was no longer neutropenic. During this time I received a platelet top up and suffered anaphylactic shock, a severe reaction to the platelets which caused a rapid swelling of the throat and puffy itchy face and eyes. I pressed the buzzer and the young nurse that was looking after me eventually came and didn’t seem to know what to do when I told her what was going on. She told the support assistant to take my blood pressure, saying she would have to get my drug chart which was downstairs. I told her to get the doctor urgently as I could hardly breathe due to the swelling in my throat and a couple of minutes later the doctor came along with several other nurses.  I can’t remember what I was given other than oxygen but I gradually improved. I found this very scary as I could see from the look on the doctor’s face that she was worried. Ironic that my life threatening experience was not caused by the transplant procedure but by a routine platelets top up!

Finally home on 19 April I began the routine of twice weekly clinic appointments to check my bloods etc. I had another allergic reaction to platelets in the day unit even though I had been given what is called cover as a prophylactic to prevent this though it was dealt with much more quickly this time. Fortunately I have not needed anymore since then. I was weak and tired during this time, slept a lot and struggled to eat due to lack of appetite and feeling sick all the time. I felt depressed and anxious, and didn’t feel ready to have any visitors other than my parents who were staying to look after me.

Two weeks later I was off to hospital again in the middle of the night via A&E with a high temperature, diarrhoea and pain in my kidneys. I was pumped full of IV antibiotics, put on a saline drip and admitted to the acute medical unit. The temperature settled but then my consultant became quite concerned about the skin rash over my legs, arms and torso which was getting worse. She said it was definitely acute skin GVHD. I had to stay in another couple of days to have high dose IV Prednisolone, a corticosteroid similar to Dexamethasone which I have mentioned many times on this blog and not in a good way!

I was discharged 6 days later on May 7th, general election day in the UK, got home about 9pm and then went straight to the polling station to vote, not that it made any difference to the outcome.  After a total of 5 weeks in hospital began the long process of recovery. I was told that the new stem cells had engrafted and I had 30% donor cells which was an excellent start so soon after the transplant, but it was a bloody hard graft!

 

 

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Baby Talk Part One

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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.

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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!

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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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VDR Pace Chemotherapy – the Zombie of cocktails

A further quick medical update as promised following on from my last post, The end of an era.  At an appointment on on 10 September that had been arranged with the lead transplant Consultant to talk about the possibility of a donor transplant after my auto transplant I was given the bad news that the percentage of abnormal plasma cells in the bone marrow was around 5 to 15 % and ideally it should be under 10% prior to transplant.  In consequence, much of that meeting was taken up with what to do about this.

The doctors were suggesting that rather than go ahead with the transplant on 17 September, I have one cycle of VDT Pace which is very heavy duty combination of 7 different drugs involving 4 days of a continuous cocktail of four different drugs given intravenously as an inpatient. The purpose of that would be to try and reduce my myeloma levels to be in the best possible position prior to transplant. I didn’t know much about it other than it was usually given to patients when all else had failed so it was a shock to me to be considered in this category.

I questioned whether this was really necessary as the one round of PAD I had just completed reduced my light chains to 49 from 100 so why not have another cycle of that but the consultants seemed to think that this regime should blast it, the equivalent to a Zombie cocktail in terms of strength.  I am partial to a cocktail or two but would probably never have one of these as it just contains too much alcohol!

Zombiecocktail

Rather than questioning this further which would be my usual inclination I accepted it. I note this is more of a trend with me now, not that I have stopped keeping myself informed about Myeloma and treatments, just that I have given up thinking that there is a solution out there that is available to me and might be better.

For more detailed information about this treatment and the protocol, click on the this link, LNRCNDC001409_DTPACE1 . I didn’t have the T part (thalidomide) because I am intolerant to that so I had Revlimd instead. I also had Velcade added which technically makes it VDR Pace.

I started it on Thursday 18th September and I was allowed home the following Tuesday having tolerated the side effects fairly well apart from the main side effect of complete boredom whilst being attached to a drip! I think my facial expression says it all!

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The rest of the treatment was oral Revlimid for 21 days and one further Velcade injection. I felt nausea, fatigue and had mucositis (a sore ulcerated mouth caused by the chemo). I can no longer remember the experience distinctly as so much has happened since then, save to say it was extremely grim.

A bone marrow biopsy was arranged for 23 October and I got permission from the Doctor to go away on a short trip to Europe, a week after the cycle ended subject to my blood test results being reasonably ok.  I decided on Menorca and had a lovely time. The only limitation being I couldn’t swim because of the PICC line in my arm but I was very happy and surprisingly active considering what I had been through being able to cycle along lovely country lanes and walk along some of the ancient Cami De Cavells.  I fell in love with Mr Boatsman, a rather handsome French Shepherd Dog belonging to my B&B host. Hard to believe my cycle had only finished the week before. This felt a world away and helped take my mind off what was coming next, my stem cell tranplant scheduled for 5th November. More on that in my next post.

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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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Fighting Talk

This is the second post exploring “cancer cliches”, the first one being keep your chin up.  More to follow on looking well, being positive, being brave and well I could go on and no doubt will!

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When the British tennis player, Elena Baltacha died from liver cancer recently, I posted on Facebook that it was sad news but that I wished the press wouldn’t say she had lost her battle with cancer.  It seemed to strike a chord as I got quite a few comments agreeing with me. This may be controversial but I really dislike fighting talk in relation to cancer and particularly dislike hearing of people in the public eye losing their fight or battle with cancer or even beating cancer. though for some reason there is less of  the latter!  It demeans our lives if all it comes down in the end is that we lost our battle with cancer. Cancer is not like a game of tennis which you can win or lose and have some influence over depending on how well you play. I am sure that Elena Baltacha showed true grit in dealing with her diagnosis and illness but she was never going to win her battle. If I lose my battle with cancer does that mean that I’ve not fought it hard enough or that somehow I haven’t done enough to beat it, come up with the right strategy, lived the right way, had the right diet, had the right attitude etc etc ? Have I somehow failed?

Does the fact that I only got 15 months remission from my first stem cell transplant whereas some get 5 years plus mean I am not fighting it hard enough or just unlucky that my disease is more aggressive.

James Steinberg

Is cancer something I can fight against or is it just a disease following its pathological course in my body which will hopefully be abated temporarily by chemotherapy or some other treatment.  Cancer is random, recovery is random, it is not a battle, it is a disease. Does someone who has heart disease or diabetes lose their battle with it or does this just apply to cancer?   It just seems to apply to cancer maybe because it is the disease that we are all frightened of getting and probably know someone that has been affected by cancer as more than 1 in 3 people will get some form of cancer in the UK.

I appreciate that for some people fighting talk and imagery may help them deal better with their cancer but I am not at war with my body.  There have been times when feeling rotten on chemotherapy,  I have tried to console myself with the thought that at least the horrible treatment is killing off my cancer cells, imagining that I have one less bad cell to deal with.  Please note I am not talking about VISUALISATION here or invading armies!  I can’t stand that either. I also see why cancer charities use words like fight, beat, stand up to cancer etc to raise awareness and funds. They have more impact and imply that there is something we can do to beat cancer but it places too much responsibility on us which is unrealistic. Cancer will only be beaten through advancements in medical science, earlier diagnosis and awareness but not by individuals fighting their own battles. Of course the idea that somehow you can personally beat cancer leads to a whole industry of alternative remedies, therapies and diets etc etc which in my view cynically exploit desperate cancer patients.  I just looked online and here is a few examples below. There are many more.

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So I may be gritty, I may be strong, I may even be resolute at times but I am not battling or fighting my cancer and if anyone writes in my obituary that I lost my battle to myeloma, I will come back from my grave and kill them. Now that is fighting talk!

 

 

 

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Keep your chin up!

I’m intending to write a series of posts exploring some of the classic cliches and phrases that I have come across since my diagnosis with cancer. My last post Why I won’t be getting run over by a bus any time soon was the first of these and is about the chances of getting run over by a bus and the reality of living with a life shortening diagnosis. This post is about the phrase “keep your chin up” which has been said to me on more than a few occasions. Now if it is said to me on the basis that keeping my chin up will help to mask the double chin I currently have (I blame that on the steroids!) then fine, it may be a little blunt but yes it is good advice for minimising a double chin! Hey I might even get one of these!

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However I think it is generally said to encourage me to stay strong and positive in the face of adversity, not to cry with my chin down.  More on positivity in a future post as part of this series but the phrase grates on me and I have been trying to figure out why.  I think it is because it takes away from my right to feel down or upset and places the onus on me to alter my mood rather than perhaps empathising with me, for example, by saying yes you’re in a pretty shitty situation and I’m here for you.  I know people mean well when they say it but there are times when I don’t want to or can’t keep my chin up. I may just want to express my grief, depression or fears or whatever and be a blubbering wreck without being told to keep my chin up, stay positive etc etc.  I have a sneaking suspicion that this is more for the benefit of other people than me. Its my party and I’ll cry if I want to comes to mind.

I really like this RSA short animation below on the power of empathy and it helped me understand the difference between sympathy and empathy.

And I’m not saying that I am the perfect empathiser, far from it, I’m just saying!! You will be relieved to hear that I am mostly “keeping my chin up” these days, being on a much reduced dose of steroids has helped with my low mood and paranoia when withdrawing from them in my week off treatment. I am maintaining remission but still on treatment ( a medical update will follow shortly).  Life is pretty good in spite of the endless visits to hospital for treatment and review, I’ve just come back from a few days break abroad in this place.  See if y0u can guess where? All will be revealed in my next post!

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