Category Archives: Cancer

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

Dexamethasone: the good, the bad and the ugly

I have a hate/hate relationship with Dexamethasone, but I have to acknowledge that it has knocked my light chains down all on its own prior to starting treatment  and whether I like it or not, it is part of my treatment and I have to get on with it. This is about my relationship with Dex.

The Good Stuff

Dexamethasone is a corticosteroid seemingly used in all treatment combinations for myeloma and sometimes on its own, in fact Dexamethasone, given in high doses, is the most active single agent for the treatment of myeloma.  I find this quite astonishing given the development of the many new drugs over recent years.  Dex also increases the ability of chemotherapeutic agents to destroy myeloma cells as well as helping reduce inflammation and allergic reactions to chemotherapy. Quite why or how it is so effective in the treatment of myeloma nobody seems to know.  It appears to cause programmed cell death, also known as apoptosis and can trigger the destruction of myeloma cells.  So that is really good.  I know this absolutely as before I started treatment waiting for the trial to start I was given two 4 day courses of Dex with about a month in between to try and keep the myeloma under control. Before I started the second course my light chains had gone sky high to 6400 but a couple of weeks later they had dropped to 2900.

However it does come with many strings attached in the form of side effects. The good ones for me are:-

1. More energy on the days I take them. I don’t take them everyday but on days 1,2,4,5,8,9,11 and 12 of my 21 day cycle, I take them on the day I have Velcade and the day after. Thanks to Dex, I have danced, stayed up later than usual, played tennis,  tidied up the garden for the winter and cooked dinner for friends.  Dex has helped overcome the fatigue caused by the chemotherapy. I am usually more upbeat and confident on dex days.

2. Erm, can’t think of anymore good things………

Although not a side effect, I quite like the fact that the tablets I take are supplied by Onyx (the trial sponsors) and the writing on the box is in German with a leaflet stuck  onto the box in many languages. The tablets are also quite pretty as they have a curvy criss cross pattern and they are 5mg per tablet whereas the UK standard ones are 2mg. My trial bloods are sent to a lab in France to be tested so I feel as if I am participating in some special stylish european project!

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The Bad

1. Insomnia and sleep disturbance. I am often wide awake at 3 or 4 in the morning, unable to get back to sleep but also unable to do anything useful with this time other than stressing about how I am going to get up for work in the morning.

2. Dex gives me an insatiable appetite for sugary junk food and this is precisely the kind of food that I shouldn’t be eating at the moment because I have steroid induced diabetes. Dex raises my blood sugar levels on the days I take it and I have to be careful what I eat ie cut out the sugary, refined foods which are what I crave.  I monitor my blood sugar levels with a testing kit although it has never been made clear to me what I should do if they are too high or what symptoms I might experience. The docs wanted to put me on Insulin but I said I would try and manage it through diet. However on the days I don’t take dex, I eat plenty of cake and anything else I can find in the cupboard or the fridge.

3. Following on from the above, not surprisingly is weight gain, can’t sleep, have something to eat, crave food, raid the fridge etc etc, I can still find plenty of non sugary junk food to eat. Weight gain is pretty common on steroids, unfortunately corticosteroids are not the type of steroids which can turn fat into muscle, I think those are anabolic steroids.

4. Muscle wasting,  I have gone from a fit triathlon competitor to a soggy shape in the space of a few months. Oh how the mighty have fallen!

5. On from the above, I wish I could channel the energy that dex gives into doing some exercise but unfortunately another side effect that I experience is heavy legs, they sometimes feel like they are filled with concrete which of course makes it difficult to run, walk or do anything much.

6. Slightly blurred vision, like my glasses always need cleaning.

7. Hirsutism and thinning of hair on the scalp.  I have more facial hair and a faint moustache but my hair is thinning on my scalp. Not very attractive!

8. Red round face, often called a moon face, the classic sign of taking steroids. People on steroids should have their own Moonies cult!

moonface

Whilst googling images of a moon face, I came across this image below about Cushings Syndrome which is a hormonal disorder caused by prolonged exposure of the body’s tissues to high levels of the hormone cortisol. Long term use of dexamethasone can lead to Cushings Syndrome and it appears that I already have quite a few of the symptoms!

Lady

What I experience above is awful but I can put up with having a moon face (with a moustache), being overweight and exhausted in the knowledge that Dex is helping my treatment work and when I stop taking it these symptoms will eventually disappear.  In the meantime I can work on my vanity issues!

The Ugly

This is much harder to deal with.  The ugly happens more when I am withdrawing from dex especially in week 3 of my cycle.  My consultant wrote on the consent form that I signed before starting treatment that it caused “emotional lability”, the medical definition of which is “a condition of excessive emotional reactions and frequent mood changes”.

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

I have to keep reminding myself that what I am experiencing is a purely chemical reaction in my body to the lack of the steroid it has become accustomed to and that once I stop taking it eventually I will return to my “normal” state of mind. Not sure what that is these days as this year so far has been full of emotional turbulence. Whatever it is, I look forward to finding out, who wants to be normal anyway!

“It may be normal, darling; but I’d rather be natural.”
― Truman CapoteBreakfast at Tiffany’s

 

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Filed under Cancer, chemotherapy treatment, Health, Multiple Myeloma, Myeloma, Relapse, Uncategorized

Nothing to say?

I have been struggling to write a new post since Butterfly on a Bush written just after I started treatment. I knew that I would find it difficult whilst on treatment but I am trying to figure out why that is. I don’t want to stress about it but all the same I would like to post an update.

So far I have had a really good response to the treatment which has brought my kappa light chains down from nearly 3000 to 188 at the end of the third cycle. They did actually go down to 50 but went back up to 180 at my last test result.  Of course, I am hugely relieved that the treatment is working to bring the myeloma under control and I am physically much better than I was before I started treatment, as the symptoms I was having caused by myeloma being active have disappeared. However the rise concerns me, is it just a blip, a response to a viral infection or an indication that my disease has already become resistant to velcade? The answer will be determined by the next test result, as usual, it is wait and see.

I started my blog a few months after my stem cell transplant. My blog was intended to be about my reaction to living with a life shortening and incurable blood cancer and how I deal with that rather than the nitty gritty of treatment, side effects and the technical aspects of my disease although you all know about my kappa light chains and frothy urine! I lacked the composure and ability to reflect on my emotional journey during my initial treatment leading to the stem cell transplant. I was just dealing with it the shock and trauma of it all and was very depressed.

Since starting treatment for relapse, I find I am more composed but with little to say about how I feel about this period. From January to August, I have been relapsing and to use a cliche, it has been a roller coaster of a journey, the inaccurate test results, whether I could go to India, whether I could do the triathlon, what treatment, waiting for the trial, my light chains rapidly rising making me unwell with myeloma. I was in a highly charged emotional state during this period, it was exciting in a perverse way but also draining and stressful. Now that I have actually started treatment I have settled into a rather dull routine of  Monday and Thursday  visits to the Haematology day unit for the first two weeks of each cycle to receive an injection of velcade into my stomach and the third week off steroids and velcade with a clinic appointment at the end of each cycle to review my progress and side effects. I fit in going to work in between these appointments if I feel up to it.

Now that I have a treatment schedule and have entered the myeloma world again, I am less stressed than I was, flatter and calmer  but am struggling to to accept the way my life is right now and so gloomy about the future, feeling increasingly disconnected from the “normal” world that I was able to be part of during my remission. I have lost confidence, feel edgy and slightly uncomfortable in the normal world, different to everyone else. I think I am suffering from post traumatic relapse disorder, if there is such a condition, there is now I have just invented it! I have almost reverted to the mental state I was in when first diagnosed, like why me, it’s not fair, my life is over etc etc. I thought I had come to terms with all of that. Added to that pot of misery is the disappointment of relapsing relatively soon after my stem cell transplant (some people get years, why not me?) and the question of how long I can survive has lead me to becoming increasingly obsessed with researching the net on latest treatments for myeloma, studies and statistics as if knowledge is power. I am not sure it is helping me as I have no control over my disease progression, only over how I cope with it emotionally.

I am as always trying to live in the moment, and there have been some good ones, I went to the beautiful island of Majorca for a few days to visit some friends and swam and sunbathed, went to the Yorkshire Dales to see some friends, walked along the lovely river and watched a local inter village cricket tournament, a now en route to Cornwall for a few days. I feel a certain degree of pressure to plan nice things in my week off treatment but just because I am off treatment doesn’t mean that all the side effects magically disappear, the fatigue stays and the effects of steroid withdrawal such as mood swings, irritability, paranoia, depression and shakiness kick in.  Sometimes I prefer just to be home alone watching the blackbirds eat the little grapes off my vine!

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So in summary, it seems for someone with nothing to say, I have found quite a lot to say.

“These are the days that must happen to you.”
― Walt Whitman

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Butterfly On a Bush

A few days ago on a bright and breezy day I was pegging out washing on the line when I saw from behind one of my T shirts the most beautiful peacock butterfly land on the mauve flower head of a buddleia bush.  It was struggling to stay on the flower because of the gusts of wind blowing it around and it was flapping its wings to try and stabilise itself. I ran back into the house to get my camera and hoped it would still be there when I got back. It was and I managed to take a couple of shots of it.  It was clinging on resolutely, occasionally fluttering off unable to stay on but kept coming back to land.  The fragility of the butterfly’s situation reminded me of my own recently as I have been desperately holding on waiting for treatment to start, both emotionally and physically.

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Since my post the Myeloma Trilogy, I have completed my first cycle of treatment. The Onyx trial finally opened on 9 August, I was the first patient and my trial tests really were whisked off to a lab in Paris (which spookily was my fantasy involving Lizbeth Salander in the Myeloma Trilogy post) and I was so hoping to be randomised to the new drug, Carfilzomib but there was only a 50/50 chance.  Just my luck I got the old drug, Velcade, which I could have started off trial two months ago off trial before I starting feeling the ill effects of having active myeloma. I was devastated and inconsolable, the poor trial nurse who broke the news to me didn’t know what to say and then had to perform a bone marrow biopsy on me!  At this point in time, it wasn’t that I wanted the new drug because I thought it would be a more effective treatment, it was because I had waited all this time for the trial to open to the detriment of my health when I could have started the old drug off trial before that happened.

Oh well, I have become resigned to it now like many other things I have become resigned to over the course of my journey with Myeloma, the loss of control is probably one of the hardest issues to deal with. The second cycle starts tomorrow and I hope that after two cycles there will be a significant reduction in my kappa light chains. I have my treatment schedule now but plans seem impossible as it is unpredictable how I am going to feel or what I can do on a day to day basis. A holiday in Italy has been cancelled as well as a tennis holiday in Greece at the end of this month so I am feeling rather sorry for myself. My self pity has been deepened by the excrutiating shoulder and arm pain I have at the moment caused by a trapped nerve in my neck which may or may not be related to myeloma or the treatment. I will be having an MRI scan to see what is going on soon I hope.

However I have managed to do some more enjoyable things in between hospital visits and prior to my trapped nerve such as canoeing down the river wye with some friends from Kerne Bridge to Symonds Yat in a 3 person kayak which was lovely. Oh and did I mention that I managed to do the bike section in the Salford Triathlon two weeks ago?? It was hard going but I took it easy and let go of my natural competitive inclinations and “allowed” everyone else to overtake me. My team mates did brilliantly too and at the end I felt overwhelming relief, firstly because I had been able to do it and secondly because it was all over now and I didn’t have to stress about it anymore. Action photos below, the small one of me coming off the bridge I really like but I cant improve on the quality or size without buying it as it was taken by a commercial photographer. I certainly look the part, who would know that I was week one into chemotherapy treatment and that earlier that morning I had struggled to get up the stairs to the registration area for the triathlon due to my shortness of breath!

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The Loneliness Of The Long Distance Runner

Alan Sillitoe 's novel

I am obviously not a long distance runner, not even a short distance runner at the moment but the solitary nature of running is used as a metaphor in this excellent short story as the main character turns to long distance running as a way of escaping both emotionally and physically from his desperate situation.

Taking part in a triathlon this year and doing the 10k last year has become something similar to me, a way of escaping the world of myeloma both mentally and physically. It signifies that I can do normal things (though some would say that it is mad not normal) and reach a level of fitness which has no place in the world of myeloma. I truly appreciate having been able to be fit and active since my stem cell transplant if not fitter than before diagnosis without bone pain or in fact any pain that some of my fellow myeloma suffers have as a legacy of myeloma even when in remission.  As for the loneliness, living with myeloma can be lonely and scary. I appreciate the acknowledgement of this by a long distance friend who doesn’t have myeloma in a comment made by Prue about my last post, the Myeloma Trilogy  “I reckon it must be quite a lonely place at times…so this is a hello!!!

However I am pleased to say that I won’t be on my own doing the Salford Triathlon next Sunday. My individual place has been substituted for a team place and I am grateful to two friends for doing the swim section and the run section at the end. I still intend to do the middle 20k bike section but have someone on standby if I cant.  I have had to accept that I am not in a position health wise to do all of it and stopped the intensive training a good few weeks ago, finding myself breathless and exhausted. Anyone that knows me will know that I hate to admit defeat and don’t like giving up but now I have accepted it I am pleased and excited to be doing it as part of a team and hugely relieved that the pressure (all of which was self inflicted) is off.  The photos below were taken at a open water swim in a lake in Cheshire on a lovely sunny day and yes that is me gliding through the water with a Myeloma UK swim cap on! Just to prove I had been doing the training!

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So neither lonely nor a runner but I will be taking part in the Salford Triathlon on Sunday 18th August and I hope you will support me. You should be able to click on the Just Giving Link on my blog to take you to our  Just Giving Page.  Needless to say I am raising money for Myeloma UK.

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The Myeloma Trilogy

My blog updates recently have been about these strange and difficult times I am going through with my relapse and whilst this update doesn’t bring any good news I wanted to take a more light hearted approach to my current situation with more than a passing nod to my passion for Nordic Noir which started for me with the Millennium Trilogy by the late Stieg Larsson with its complex and compelling central character, Lisbeth Salander.

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So here is my version

Part 1

The Girl with the High Kappa Light Chains (aka The Girl with The Dragon Tattoo)

Below is a representation of a light and heavy chain component of a protein so if ever I was to have a tattoo I suppose I could have this motif repeated in a chain round my muscular biceps (not!) but I think I would prefer a dragon tattoo!

forms-IgMforms-IgMforms-IgM                                 girl-dragon-tattoo-cp01

My kappa light chains have risen again to 2725 from 1975 mg/litre or something like that. I felt upset and disappointed that the course of dexamethasone I had been given (see my post Trials and Tribulations)  to try and hold the myeloma at bay hadn’t appeared to have had any effect (or maybe it stopped them being higher who knows?).  This time though I am finding it hard to shrug the high number off so easily as I am now displaying symptoms of active myeloma which are causing me not to feel so well for the first time since relapse was confirmed.

One feature of my rising kappa light chains over the last few months (which doesn’t make me unwell) has been the reappearance of frothy urine which is foamy and bubbly in appearance, like a lager top or bubble bath. For those that are curious this is what it looks like in the toilet bowl! I am back to drinking 3 litres of fluids a day to keep my kidneys being flushed out.

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I have written in detail about it in a previous post, Frothy Urine. I noticed it when I was first diagnosed and had acute renal failure but as my light chains went down with treatment and eventually into normal range it tailed off and became intermittent and at the point when I wrote about it, it was because of residual kidney damage meaning my kidneys leaked proteins occasionally. This surprisingly has turned out to be my most googled tag line after myeloma so clearly a lot of people have anxieties about protineuria and although it can be a sign of something serious it isn’t necessarily so. At the moment it is being caused by my high kappa light chains as excess light chain proteins are being excreted into my urine through my kidneys. The concern is that my kidneys could become clogged up with those proteins as they did last time and cause casts to form which prevent the kidneys from functioning. I am now being monitored for my kidney function weekly and at the last test my kidney function was slightly abnormal but nothing to worry about. Another sign that my myeloma is becoming active though

Part 2

The Girl Who Displayed High Fever (aka The Girl Who Played with Fire)

Since I last wrote about my temperature spikes which resulted in the dreadful 2 day stay in hospital,  A Room with a View, I  have had quite a lot more although I managed to get away with attending the Haematology day unit 2 times instead of being admitted. I was observed, blood tests and cultures taken and sent home with no cause of infection established. About two weeks ago I started getting a temperature of 38 degrees centigrade daily and was feeling shivery and unwell. I was given a course of oral antibiotics but these had no effect and the only thing that helped was taking paracetamol but of course this masks infection and only lowers the temperature temporarily. This period caused me much anxiety and resentment, but being reassured that there was no infection, later became more of a debilitating nuisance requiring a lot of resting and keeping warm or cool depending on my body temperature. The doctors are putting it down to myeloma related fevers. But I  camped at a music and arts festival a couple of weeks ago straight after escaping the day unit, had my fevers, took paracetamol and had a good time in the circumstances. The friend I was meeting up with there checked out where the nearest A&E was and promised to take me there if I needed to go. I didn’t. I have played tennis a couple of times too which I really enjoyed.

On the fire theme, my red blood cell count is below the usual range for females, not much but enough to make me slightly anaemic which explains my increasing fatigue and low energy of late feeling short of breath and wondering how I will ever be able to do any triathlon training, let alone the triathlon in 3 weeks time (an update on the triathlon is coming very soon). Again this is a common symptom of myeloma, (and also a side effect of the chemotherapy that is used to treat myeloma).  I mentioned feeling resentment before and what I resent is that I am now experiencing symptoms of myeloma which are starting to impact upon my health without actually being to take any benefit from having any chemotherapy to treat them. The only positive to the misery of being on toxic chemotherapy is the expectation that it is reducing the disease burden. Yet apart from the Dexamethasone I am still waiting to start treatment so nothing is happening except I am not so well right now when I could be not so well on chemotherapy but at least getting the benefit! I always wanted to be fit and well when I started treatment but it seems that the balancing act has tipped too far in favour of waiting for the trial to open rather than starting treatment off trial.

Part 3

The Girl Who Kicked Ass on Dex (aka The Girl Who Kicked the Hornet’s Nest)

Yes I have once again been given a short course of Dexamethasone, this time more to keep my kidney function stable which I hope works more successfully than the last course did for keeping my myeloma at bay. When I took the first 20mg on Saturday mornng I felt my fatigue go and became filled with a surge of energy which was just what I needed as I had a 101 things to do that weekend that I hadn’t had the energy to do in the week. It seems to have stopped the fevers too which is great. What fabulous stuff , I know I’ll crash when I stop taking them but it’s worth it for now. What I really need is to start treatment and I was fully expecting to when I went to my clinic appointment last Friday to start something off trial if the trial wasn’t open but my consultant it seems had other ideas. He told me that Onyx trial still hasn’t opened at my hospital but it is getting closer to being ready as they had the initiation meeting the day before and at least he had a pack in his hand with the trial details. It could be open next Friday with me having a bone marrow biopsy and some other tests required for the trial and then starting treatment just over a week later as the dexamethasone needs to be clear of my system for 14 days before I can start the treatment. He made a cursory offer of treatment off trial there and then but I had 5 minutes left before I had to leave to have a skeletal xray survey so it seemed pointless to do that if the trial is really that near to starting. So can I hold on? Will it be worth it, I hope so?

In my dexy state, I have this fantasy that I could send Lisbeth Salander on a mission to get the Onyx Trial to the MRI. There are quite a few Onyx trial centres running in France so she could set off on her motorbike from Stockholm in her black leathers looking gorgeous and ride south to France. She could fake some ID to get into the  hospital (I visualise this as being somewhere in Paris) break into their IT centre, hack into the Onyx trial data, copy it and then hack into the Central Manchester Healthcare Trust database and copy everything over creating me as their first patient. She would design the randomisation process so that I could only get Carfilzomib, the newer drug. So when I go to my appointment (perhaps with her?) this Friday, it is miraculously open, I sign up, get randomised to Carfilzomib! The drug is delivered and off I go!

Here is Lisbeth Salander in action on her motorbike and me on my motorbike during my rebellious student days. I don’t look quite as cool and mean as Lisbeth Salander but hey I look quite cool. I seem to remember I liked posing on it more than I did riding it!

motorbile                                              P1020568

Once more I must be a patient patient and hope that I can get started on treatment soon. In part because I have not been feeling quite so good recently,  I am ready and resigned to leaving the normal world behind me for a while and entering the myeloma world I talked about in my last post (trials and tribulations).  Letting the chemotherapy do its work and hope that it does and that I can manage the side effects.

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Skal to that as they say in Swedish

ps oh no that couldn’t possibly be, in that glass she is holding could it???

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Trials and Tribulations

Life is rather strange at the moment. I have relapsed but I am not on any treatment. I am quite well physically yet my kappa light chains were approaching 2000mg/litre at the last test on 21 June.  Another sharp rise then by about 850mg, I wish I was IT adequate so I could put graphs on my blog posts. Normal is up to 19mg per litre. However much as I might like to be normal, I am not!  I am adjusting to these figures each time and they now really mean very little.  I found myself saying to a friend who also has myeloma ” they’re only 2000″!! I remember when I first found out I was relapsing I was devastated that they had risen over 100 but at that point I was dealing with the trauma of relapse. Now I have got used to the fact that I have relapsed, that the light chains are not going to go back down of their own accord and I need to start treatment at some point probably quite soon.

I have the same physical well being as I did when I was properly in remission and my light chains were in normal range.  I am told that my relapse is biochemical rather than clinical as I have normal range blood results and kidney function and am showing no signs of bone damage ie pain! Therefore the only way it is detected is by the free light chain test of my blood serum. The last few weeks since my stay in hospital with a high temperature (see my last post, A Room with a View )  I have  seen my own consultant twice and went to St James Hospital in Leeds for a second opinion from Professor Gordon Cook which was extremely helpful. The purpose of the second opinion was to discuss treatment strategies, both immediate and long term.  We have discussed trials. One excellent trial c0-ordinated by Myeloma UK has been ruled out (the MUK5 trial) as my exit strategy isn’t compatible with the trial objectives. However another very similar trial aptly called the Endeavor Trial looks suitable for me as it compares a new drug which is not available off trial (Carfilzomib) against an older version of a similar drug (Bortezomib). There is a 50/50 chance of getting the new drug but it is not open at the Manchester Royal Infirmary yet. I keep being told shortly or two to three weeks but that has turned into a few months now as the trial sponsors seem to be prevaricating. Which is why I am waiting and waiting and waiting.

To hold the myeloma at bay, I was given a 4 day course of high dose dexamethasone  a couple of weeks ago ( a steroid commonly used as part of treatment of myeloma). I experienced a very bad reaction to dexamethasone whilst on treatment before. During the  days of the cycle I took it  I suffered from insomnia, carb/junk food cravings and shakiness.  The plus side is energy surges. Long term use resulted in  blurred vision, muscle wasting, heavy aching legs and tinnitus. During the intervals I wasn’t taking it I suffered withdrawal symptoms such as irritability, severe low mood and lack of concentration. I thought that as the recent dose was just a one off 4 day course,  I wouldn’t get these effects but guess what I did!  Not the long term ones but the short term ones. The good part of it was having energy for a works night out and drinking rather too many mojitos, then going to a friend’s house gathering that lovely first weekend of the start of summer in the Cotswolds and being able to do some rather energetic disco dancing for quite a long time! No photos of that I am afraid.

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The downside was that for 2 to 3 days after taking the course I felt extremely low and irritable to the point where I had decided that I wasn’t going to take any treatment for my relapse if it was going to make me feel like this and I would rather let my disease take its course! I can find that laughable now but I really did feel like that at the time. It doesn’t bode well for the commencement of the suggested 6 to 8 cycles of treatment which will include dexamethasone and one of the drugs mentioned above. Will I be able to tolerate it both mentally and physically?

But whilst I am waiting to start treatment either on a trial or off trial, I feel like I inhabit two alternate worlds at the moment

The Normal World

Where myeloma is not mentioned. Work is extremely demanding right now as I am busy dealing with another kind of fast approaching trial, the highest value  claim and most interesting case I have ever handled. I want to see it through to conclusion.  I am making arrangements for conferences, meetings and court hearings to take place over the next few weeks without knowing whether I’ll be able to attend them. I am continuing with all my other usual activities including training for the Salford Triathlon on the 18th August which involves 6 training sessions a week. More about the triathlon in a post to follow soon but if you want to sponsor me or find out more just click on the just giving link on my blog.  Then there is of course much to enjoy about this glorious spell of  Mediterranean  style weather we are experiencing in the UK at the moment.

The Myeloma World

In this world I am a relapsed cancer patient not yet on treatment, being clinically managed by Haematologists, with very little control over what happens. Spending a lot of time thinking and talking about my chromosome abnormalities, clinical trials, drugs, treatment combinations, stem cell transplants, kidney function, kappa light chains, treatment strategies and having endless blood tests. This world consists of mostly waiting for results and at the moment a trial to open and uncertainty. Different friends came with me to my last two appointments and both were amazed by the level of knowledge I had about myeloma and the treatment of it. When I start treatment this will mostly become my world again.

Which World?

Well I don’t have much choice. I know I have to start treatment and once I start it I will have a routine and some say feel better mentally for it.  The anxiety caused by waiting and worrying that I am going to get kidney failure, bone damage or a serious infection would be replaced by the anxiety  that I will no doubt feel about coping the side effects of the treatment and whether it will work but I am already feeling anxious about that now so I suppose starting treatment removes one layer of anxiety!.

On the other hand, I oscillate between wanting to get treatment underway and wanting to delay it further whilst I am feeling so well so I could enjoy the rest of the summer and do the triathlon and perhaps even approach the 2 year anniversary of my stem cell transplant on 1st September free of treatment? I guess the decision is out of my hands. To use my currently much overused phrase “I’ll keep you posted”

“I wanted a perfect ending. Now I’ve learned, the hard way, that some poems don’t rhyme, and some stories don’t have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next. Delicious Ambiguity.”
―     Gilda Radner

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A Room With A View

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

 

 

 

 

 

 

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

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

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

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

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

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

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

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

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

hospital room

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

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

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

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The test that was right that was wrong that was right

“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
―     Rainer Maria Rilke

monet garden

When I got back from Paris a week last Friday on the Eurostar trip with my parents to see Monet’s garden, amongst my post was an odd letter from the Haematology department saying my appointment with the consultant had been cancelled and that an appointment had been arranged for Friday 17th May instead at 12pm. By the time I got the letter it was too late to ring them to say I had only just got back so it had to wait until Monday. I didn’t really worry about it but rang on Monday and spoke to the appointment secretary and explained that I had been away and unable to attend. I asked why it had been brought forward and was told something like the doctor was trying to clear down his list for 31 May when my appointment had been scheduled for.  It was rearranged for 24 May.

I duly attended, expecting to discuss the erroneous test result (see my last posts, falling off the plateau  and back on the plateau ) and perhaps to have another discussion about what treatment I might have when I do relapse bearing in mind that my kappa light chains were only 117 mg/litre, there was no immediate concerns.  I had the last appointment and when I arrived clinic was extremely busy but as I was having Zometa  (a bone strengthening treatment) as well, I went to the day unit for my bloods to be taken and my kidney function tested as usual. I had Zometa at about 3pm and still hadn’t seen my consultant but as I was leaving the day unit I bumped into him and the haematology specialist nurse as they were coming to find me. Seeing the nurse there as well made me feel slightly anxious as she doesn’t normally sit in on my appointments. We went into his consulting room and he then told me that unfortunately the first test showing the massive rise in my light chains to 617 mg/litre was in fact correct and it was the retest that was wrong. I was completely stunned. He said that both tests had been retested several times and that it was confirmed. The lab were unable to give any explanation as to how they got the retest result so wrong.

My consultant said on that basis I was now relapsing and we needed to sort out a treatment plan pretty quickly. We discussed different options but my head was in a complete spin and I couldn’t really concentrate on what he was saying. I am to ring up in a few days time to find out the result of the light chain test taken on Friday and if my kappa light chains are over 1000, I have to make an urgent appointment to see my consultant and have my kidney function tested which is a big concern and possibly start treatment straight away. If they are less than 1000 I will see him on 14 June by which time a trial may be available which might be a good option for me. So unless by some bizarre chance my light chain test this time shows a massive reduction in my light chains, I will be starting treatment very soon and all my plans of doing the triathlon in August and a couple of holidays in September will be out of the window.

After the appointment, I was in shock and disbelief.  It felt a little surreal. I debated whether to go to a friend’s 60th birthday meal that evening but I did and it was fine but that night I couldn’t sleep and the following morning I was low and tearful and was thinking of putting off my friends visit to me for the weekend that thinking that my mood would be so low I wouldn’t want to see them.  I went to my outdoor fitness session in the local park hoping that it would raise my serotonin levels but it didn’t really have that effect, instead I was worrying about whether too much exercise would be stressing my body!

My friends arrived, it was a lovely day, I told them the bad news and by the afternoon my mood had completely lifted and I was dancing to salsa music round the kitchen and the garden whilst making dinner. I am still feeling okay, after all I am in no worse position than I was when I found out that my light chains had risen to 617 on 19 April. I adjusted to that after the initial shock and disappointment, then had the elation of finding out that test was supposedly wrong, had cocktails on my birthday with friends, went to London and then Paris in a celebratory mood ( I probably wouldn’t have gone if I had known my light chains were over 600). Monet’s garden was truly beautiful (aside from the drama of my mother falling over and breaking her wrist) and Paris was well Paris, the city of light!

It is a cliché, but life at the moment is truly like being on a roller coaster!

coaster

In fact dealing with the emotional effects of having myeloma is far more challenging than the physical effects at least for me so far. It has truly been a mind blowing experience. How I can go from feeling so desperately low and alone on Saturday morning to happy and elated by late afternoon is just as strange as the recent sequence of test results.

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