Tag Archives: Cancer

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!

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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.

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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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Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma

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!

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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.

 

 

 

 

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Viva Las Velcade!

This post is about the wonderful Velcade, the chemotherapy that I am on. If you want to know more about it you can click on the link.  I have started my 10th cycle of Velcade and Dexamathasone on the Endeavor trial, (very aptly named as it certainly feels like an endeavor!). My disease is stable and my kappa light chains in normal range since the end of the 5th cycle (see my post And on the sixth cycle). So good news, I’m still in remission!.

Hey, this warrants the inclusion of the dancing cat from an old post! I love the dancing cat but have some reluctance about putting him on again because  the post that I used it on to celebrate the fact that a previous test result that was sky high was erroneous but later on I learnt that it was right, the test that was wrong etc. I do hope that the dancing cat isn’t a bad omen.

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What the heck, lets throw in the ballerinas as well!

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I’ve been on continuous treatment for over 6 months now. I have become so used to this extraordinary way of living that it is not extraordinary to me anymore. I have attended the haematology day unit Mondays and Thursdays for the first two weeks of every cycle to receive a subcutaneous injection of Velcade (that makes 36 times). I leave work around lunchtime then go the day unit.  I sometimes have blood tests first and observations are always done. The Velcade comes out of the fridge having been ordered from pharmacy especially for me. The curtains are drawn around my chemo chair to give some privacy and I expose my bruised and battered stomach for the nurse to find a new site in which to inject the Velcade. She pinches some fat (of which fortunately there is plenty) between her fingers and injects the velcade over a period of around 10 seconds. It stings whilst it is going in and after I have had my observations done 15 minutes later I am free to go. The whole process generally takes around an hour but sometimes longer depending on how busy the day unit is.

I have never felt any immediate side effects and quite often go food shopping on my way home and or go for a run. I may feel tired later but that is counteracted by the steroids that I take on the day of and the day after treatment. A couple of days after the injection, the site starts to redden and bruise and gets extremely itchy and sore. I’ve been experimenting with different lotions and potions, aloe vera gel provides some relief. Other than fatigue which has lessened over time, I suffer from constipation and more recently aching calves. My legs feel like I have walked 10 miles but I have done nothing at all. This could be due to nerve damage caused by the Velcade, one of the main side effects of Velcade is peripheral neuorpathy but this is usually in the hands and feet. My consultant is keeping an eye on it.  The other side effects I experience are more to do with the steroids but as the dose has been reduced these have lessened.

Since my light chains went into normal range, the dose of Velcade and Dex has gradually been reduced to minimise the side effects. The previous 9 cycles involved 4 doses of velcade over a 21 day period, the 10th cycle is less dose intensive and involves 4 doses of velcade over a 35 day period. This is the lowest dose possible on the trial and the idea is for it to be more of a maintenance dose. I will have another stem cell transplant this year but I don’t know when. It rather depends on whether and how long my remission is maintained on the maintenance dose as at some point my disease will become resistant to it.  I never know what will happen from cycle to cycle or how many more cycles I will have and neither does my consultant, we just review matters at my clinic appointment at the end of each cycle. I have got used to living with uncertainty like this but it is tiresome to explain to others in the normal world.

When I finally started chemotherapy last August I assumed that my life would be on hold, that the side effects would be too great to really do much and that I would wait until after treatment to recommence my life but although the first couple of cycles were a bit rough, things have got better.  I suppose my body has got used to Velcade and the reduced dose of steroids has really eased the low mood I talked of in dexamethasone the good the bad and the ugly. Life is too precious to ever be on hold, even on bad days, it is for living now to the best of my ability, whether on chemotherapy, in remission (or both) or even when relapsing.  It is almost impossible to make any plans but in my week off treatment at the end of each cycle, I have taken trips to Majorca, Cornwall, Barcelona, Somerset, London and Lanzarote (yes that was where the photographs were taken in my last post, Keep your chin up).  I’ve also been working (to pay for all these breaks!), playing tennis, walking, getting back into running,  and in a couple of weeks time I’ll be dog sledding in Finnish Lapland!

And so I have my extraordinary routine which I have incorporated into my fairly ordinary life.

Viva Las Velcade!

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Taken in El Golfo, Lanzarote

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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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Why I won’t be getting run over by a bus any time soon!

How many times have I heard that I could get run over by a bus any time or other such platitudes about how none of us know when our number is up when I talk about my life shortening diagnosis.  I know it is partly because people don’t know what to say and yes it is true there is a very remote chance I could get run over by a bus…………..

About 2 in 1000000000 to be precise

I think it is far far more likely that I will die of a Myeloma related cause, in fact I would gamble my life on it!

I love this video, I don’t know why it makes me laugh so much, Jesus is being so positive and upbeat singing I will survive and then what happens…I won’t spoil the ending!

I know of 5 people between the age of 35 and 60 with Myeloma who have died recently. Three through the online myeloma community and two others in the public eye, Felix Dexter who was on the comedy show, The Real McCoy a while back and a biochemist, Professor Michael Neuberger who ironically was involved in life saving work on the immune system.

Over time I have become less affected by hearing of deaths of people I know of caused by Myeloma than I used to be.  In an oldish post In a Clod  I expressed how I felt about the death of “Outdoor Paul”. Such untimely deaths always serve to remind me that this is likely to be my fate too at some point sooner than most people of my age and whilst some will say in an attempt to blunt this fact that any of us could get run over by a bus any time, I find that cliche very annoying. I know it is meant to convey the point that although death is a certainty none of us know when it is going to happen or how but saying that takes away from the most profound effect that the knowledge of my likely early death has on my life. It degrades my experience.

Having a life shortening illness is something I have to deal with but for those don’t have their awareness of their demise in quite as much focus as I do, it is hard to talk about.  I nearly got caught out myself when I was having lunch with a myeloma mate recently and he referred to an event that would happen when he was 58 (6 years time) and then remarked that he would probably be dead by then so he wouldn’t see it happen.  I was initially shocked and the words “oh you won’t be” were nearly out of my mouth before I shut it and changed it to something like I hope you won’t be.

And I hope I won’t be too but I’ve had to adjust and accept that this might be the case. In some ways there is a liberating element to having a life shortening illness.  For example, I have

– cancelled payments into the pathetic personal pension I had

– ceased caring about how I am going to support myself financially in old age

– stopped fearing death and that I might be extremely old, out of my mind, lonely and a burden on others

– stopped shelving plans and dreams of what I am going to do when I retire, and am DOING THEM NOW, as far as possible.

Oh yes, I am living the dream (said with more than a touch of irony and a little bitterness if I am honest)!

I am pretty sure of what I am going to die of and roughly how long I have got but for those that don’t, here is another classic song from the old maestro Leonard Cohen to give you some food for thought. This post is really just an excuse to play another song by him. I am a just a little obsessed at the moment!

And who by fire, who by water,
Who in the sunshine, who in the night time,
Who by high ordeal, who by common trial,
Who in your merry merry month of may,
Who by very slow decay,
And who shall I say is calling?And who in her lonely slip, who by barbiturate,
Who in these realms of love, who by something blunt,
And who by avalanche, who by powder,
Who for his greed, who for his hunger,
And who shall I say is calling?And who by brave assent, who by accident,
Who in solitude, who in this mirror,
Who by his lady’s command, who by his own hand,
Who in mortal chains, who in power,
And who shall I say is calling?

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Filed under Cancer, Health, Life and death, Multiple Myeloma, Myeloma, Uncategorized

And on the sixth cycle …..

Velcade gave me complete remission!

I’m half way through my seventh cycle of Velcade and Dexamathasone and the time from the start of treatment in August seems to have whizzed by. In some ways I am surprised by how normal life has been. I have had an excellent response to treatment, my kappa light chains are now in normal range and I am in complete remission.  The plan is to strengthen that response with another couple of cycles followed by a stem cell transplant (from my own stem cells) and then possibly a donor stem cell transplant a few months later. I try not to think too far ahead to these procedures, as the latter especially is not without considerable risks.

I am fortunate that apart from the awful dex, (see my post, Dexamethasone, the good the bad and the ugly) the side effects of the treatment have been fairly minimal and I’ve tolerated it well without all the numerous infections and issues I had on my initial chemotherapy. Managing to work, rest and play including trips to Palma, Cornwall, London to see the ATP world tour mens tennis finals. I also went to Barcelona and Girona a couple of weeks ago where I took these photos of the sparkly Christmas decorations and the stunning Sagrada Familia by Gaudi. I was disappointed to see that it still hasn’t been finished though!  I’ve also started playing tennis again after recovering from a painful  and debilitating nerve compression problem in my neck (which I am pleased to say turned out to be nothing to do with myeloma). Oh and I’ve also started running again mostly on dex days! In fact the outward appearance of my life is so “normal” that I think people forget I am on chemotherapy!

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For the past few years this time of year has been associated with bad things happening in my life.  It was just before Christmas in December 2010 that I was diagnosed with myeloma, I described how that was in my post The Nightmare before Christmas.  And this time last year I found out that my light chains had risen out of normal range which turned out to be the start of an upward trend signifying relapse and a turbulent and stressful 2013 at times. I’m hoping this Christmas on my 7th cycle will be completely uneventful, with the only thing hanging over me caused by over indulgence!

It is three years today since I was diagnosed with myeloma  so today is a milestone of sorts. According to the most recent UK stats for survival  from Cancer Research UK  (http://www.cancerresearch.uk.org/cancer-info/cancerstats/types/myeloma/survival/multiple-myeloma-survival-statistics)

I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive 5 years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or the 14.9% that survive 10 years? Who knows?  I hope so and I know there have been further improvements in overall survival rates since this study due to the newer and better treatments but realistically there is a very strong possibility that I won’t make my 60th birthday or even my 55th.  Of course I feel sad about that but on the upside, at least I won’t have the stress of planning how to celebrate it!  However there will be the pressure of trying to make the most of the birthdays I am around for as as well as the dilemma of how to live a significantly shortened life.

The milestones like birthdays, number of years post diagnosis, stem cell transplant anniversaries etc are great but counting the milestones as simply the passage of time is meaningless. It is about how we spend the time between each milestone that matters.  I can’t very well live every day as if it is my last but want to make sure that I spend as much of my precious time as possible doing things I enjoy, being with people I love and care about and having fun.  So no pressure then! The counter balance to this is accepting the times when I am  feeling down, fatigued, ill, horrible, anti social etc etc are not a waste of my precious time and that I don’t have to do anything for the sake of “making the most of whatever life I have left”.

I love the lyrics to this song by Leonard Cohen, (A Thousand Kisses Deep). I don’t know what they mean to him but to me they sum up my experience of living with myeloma, the periods of remission, relapse and dealing with a reduced like expectancy.

The ponies run, the girls are young,
The odds are there to beat.
You win a while, and then it’s done –
Your little winning streak.
And summoned now to deal
With your invincible defeat,
You live your life as if it’s real,
A Thousand Kisses Deep.

I’m turning tricks, I’m getting fixed,
I’m back on Boogie Street.
You lose your grip, and then you slip
Into the Masterpiece.
And maybe I had miles to drive,
And promises to keep:
You ditch it all to stay alive,
A Thousand Kisses Deep.

Felices fiestas

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Filed under Cancer, chemotherapy treatment, Life and death, Multiple Myeloma, Myeloma, Relapse, Remission, Stem cell transplant, Uncategorized