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!

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

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!

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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!

 

 

 

 

 

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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Upping the ante

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

Some photo’s below although not of the MRI!

 

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

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

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

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!

 

 

 

Urine saves the day!

Since I started showing signs of relapse in January 2013, I have been living with a huge amount of uncertainty as anyone does with an incurable cancer, there are hopefully periods of remission and stable disease as well as time of treatment and recovery, but through all that time, my light chain results are a constant source of anxiety and stress.  I am still trying to cope with that feeling of always being on a knife edge. At the  clinic appointment at the end of each cycle the focus is on my latest results. Are they in normal range,  what happens if they are not, what happens if they are, will I have another stem cell transplant, when will that be? Am I normal (they can’t answer that!)? The last few months my kappa light chains have been teetering on the upper edge of normal range. What does FLC Kappa 3.3-19.4 mean to you? Nothing hopefully!

What does it mean to me?  Everything, it is the holy grail. It defines the normal range for kappa free light chains which we all have but which are elevated in the type of Myeloma I have. Being in normal range generally signifies complete remission. Before I started treatment after relapsing last year they went up to 6000. At diagnosis they were estimated to be over 10,000. Now they have been creeping up and are 44..3 according to the latest trial test results and 23.4 according to our lab results so since my last post Not Good Not Bad, they have become less good and not normal. Also as there have been 3 trial results consistently out of normal range I am considered to have relapsed according to the trial criteria. There was some concern at my last clinic appointment that I would be kicked off the trial. Plan A was to apply to the trial sponsors for approval to remain on the trial. It would take a few days to find out if I could. However it wasn’t clear what Plan B was going to be if we didn’t. I came away from my appointment feeling abandoned and confused as my consultant (whose last day it was) was returning to Australia and seemed very uncertain as to the alternatives. I guess it wasn’t going to be his problem anymore but I left with no follow up appointment, no Plan B and no start date for another cycle.

Just prior to my appointment I had booked a week’s holiday at a yoga retreat in Ibiza. Because I was in such an anxious state I nearly decided not to go, my anxiety compounded by coming off the steroid dose I had taken early in the week. But I did go and doing 3 hours of yoga a day in beautiful surroundings proved to be a great distraction.  I found the yoga both physically and mentally challenging and it was good for taking my mind off my situation. And yes I really was there for the yoga and not out clubbing every night! I have always wanted to go to Ibiza and it lived up to my expectations and is a beautiful island with a nice vibe (now does that sound a bit like I’ve been clubbing!).  Apart from doing yoga, I went to the nearby beach to watch the sunset most evenings, read and rested quite a lot, swam, sunbathed, took some walks and explored the island. I think the photos show just how chilled it was (it’s not me in the yoga poses!)

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I found out towards the end of the week in Ibiza that the trial people had said I could remain on the trial because my urine results were stable and that is what they look at in conjunction with the light chain blood tests I have been having. Yippee but unexpected reasoning. Every 28 days as part of the trial disease assessment tests I have to do a 24 hour urine collection which involves peeing into a large container over a 24 hour period and bringing it in to the hospital the next day. I initially thought they sent off the whole container to the trial lab in Paris but it turns out that they mix it and mix it and reduce it to a small pot to be sent off! Anyway I have never paid attention nor has my medical team to the results of those samples as the SFLC (serum free light chain test) is considered to be more accurate and obviously much more convenient. Prior to the trial the only other time I did a 24 hour urine collection was when being diagnosed. Quite why they place more reliance on this rather outdated urine test rather than the SFLC test I don’t know, it also seems odd that my medical team didn’t know that. Had they known that we could have avoided all the stress and uncertainty at my last clinic appointment.

So I get to stay on the trial and started a 13th cycle a week ago, thanks to my urine which remains frothy, see my post Frothy Urine for an explanation of why. I have stopped being concerned about that but really it is the only symptom I have that has been caused by myeloma and reminds me on a daily basis that I have myeloma at the moment. I feel fortunate compared to others I know who are dealing with bone pain and lots of other issues caused by Myeloma.

As to what the plan is, there isn’t one, it is really just a case of waiting for the results at the end of each 5 week cycle and then deciding whether I start another or go off trial and proceed to second autologous stem cell transplant.

In the meantime, here’s to my urine!

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Not Good Not Bad

Since my last post The Best Laid Plans I had a further light chain test, the results of which were pretty similar to the previous ones.  So not good not bad, just the same. Strangely, the last few hospital lab test results are in normal range but the trial test results are slightly out of normal range and in both sets of tests there has been little movement which my consultant finds reassuring. Perhaps the blood samples don’t travel well to where they are tested in France for the trial!

So the plan now is that there isn’t one! The situation remains the same. I have started my 12th cycle of treatment today and if my test results show any further rises the chances are I will have my second stem cell transplant sooner rather than later. If not I’ll continue with treatment hopefully until around August and then I will have a transplant. I feel much calmer about this now than I did when I wrote my last post. Right now I don’t have the energy to spend on being disappointed about not being able to plan etc because I have flu and am feeling pretty drained. It is not the way I would have liked to have come to terms with my situation but there it is (ideally I would have liked to come to accept the uncertainty of my situation through the path of spiritual enlightenment but we can’t have everything we want!).

I woke up in the early hours of Tuesday morning feeling shivery and with a temperature of 38.5. Oh dear, time to read the Haematology card I carry with me. it operates as a sort of get out of jail free card if I need to go to A&E. It means I should be seen sooner as someone with a compromised immune system and preferably in a isolation room.  Even so being in A&E is a hellish experience to be avoided.

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Although I am meant to contact the 24 hour haematology helpline with a temp of 37.5 and over, I knew they would tell me to go to A&E and I couldn’t face that so I piled on the duvets until I felt warmer and slept intermittently. Having survived the night, I then rang the trial nurse, Pippa at 9am. She arranged for me to go to the Haematology day unit and said I would be reviewed by a doctor.  Five hours later I was sent home with antibiotics after being tested, swabbed, examined and X rayed. My temperature had at least gone down but I felt exhausted. Nothing conclusive but the next day, the Italian doctor I saw rang me and said I had influenza and that he would arrange for me to be prescribed Tamiflu.  Flu?  Now I felt seriously ill!  So I have been resting but not bed resting, I am not very good at that, coughing a lot and producing copious amounts of snot. The worst thing though has been the combined effect of self pity, a lot of time spent alone and severe tiredness resulting in very negative flights of fancy about flu becoming pneumonia, treatment stopping, myeloma returning with a vengeance etc etc,  you know where this is going! I must admit too feeling a little like the cat below at times!

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As I am recovering, fortunately I am regaining my sense of perspective.  I hope that as my energy returns I don’t start getting frustrated and anxious about my situation and can retain that feeling of detachment that having the flu has given me.

Ps in case you are wondering, I have had the flu jab!

The best laid plans……

“The best laid schemes o’ Mice an’ Men,
Gang aft agley.
An’ lea’e us nought but grief an’ pain,
For promis’d joy!

(To A Mouse)”
― Robert Burns, The Works of Robert Burns

I was feeling quite elated following my last clinic appointment because after months of uncertainty about how long I would continue on treatment my consultant and I came up with a plan. The plan was to continue with this low dose treatment regime until around August, that would be 12 months since I started treatment, and then have my second stem cell transplant (which would be three years since my first one).  The reason being that I am tolerating it well with good quality of life.  I have learnt that spinning out something that is working for you for as long as possible is a good strategy when it comes to treating Myeloma. Living with Myeloma is a marathon not a sprint and as there isn’t a cure there is no hurry to get to the finish line. Come to think of it, there isn’t really a finish line. Of course the plan is subject to my light chains staying in normal range which they have been since November. If they started rising out of normal range then I would have the stem cell transplant as soon as possible.

So finally I had something to tell people, I had a plan, I could make plans, I could reach that bit further into the future, I could say yes to this or that invitation if it was before September. I started to lay tracks across my mental calendar for the next few months.  My mind was racing with delight. I would have a glorious summer. The next few months would be my myeloma salad days before the gruelling stem cell transplant process.

Then on Monday when I went to the Haematology Day Unit in for my weekly shot of  Velcade, I was given a print out of the most recent blood test result which was out of normal range and confirmed an upward trend over the last 3 tests. I felt instantly slumped, all my hopes and plans were shattered by an A4 sheet of paper. I have had many set backs and disappointments along this journey and this was another one (not even a particularly significant one) but for some reason it has hit me hard.

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Now the plan is to have another test on Monday and if that confirms the rise, I will be coming off treatment since we must assume that it is no longer holding me in remission. I will then have a stem cell transplant in the next 4 to 8 weeks.  If my light chains return to normal range then I suppose I am back on track but whatever the result I have already reigned in my plans. hopes and dreams. To avoid disappointment I can only plan around a month ahead at a time. I know plans can be cancelled or put on hold and perhaps it is better to make them than not but for me it was not necessarily the plans themselves that were the attraction but the freedom to be able to make them.