Mid Feb – A quicker update this time to share my latest blood test results which we are very relieved about as they show some further progress after getting a bit stuck on a plateau for the last 2 cycles. Plus a Rugby story and a Gordon Banks anecdote, I do spoil you lot.

After the early success of the first treatment cycle when my Paraprotein fell from 22 to 13 there was not much progress during cycles 2 and 3 which was concerning and we decided to make cycle 4 a bit more intensive. This seems to have helped and my Paraprotein has now dropped to 7 from 12 and my ‘Free Light Chains’ are now 50, down from 75 last time. These are the 2 key markers that I explained in the 4th update and to be making good progress again is really encouraging. Both markers are now at levels where the consultant feels we can go ahead with the transplant, below 10 on the Paraprotein count seems to be the magic number for him and with 4 cycles to go we would hope for more progress from here. I am half way through the 5th as I write.

As I mentioned before I have been finding it a bit tougher of late, not helped by a cold. I am over that now and back into 5th cycle feeling better generally but I have now developed some ‘peripheral neuropathy’ which is a common side effect from the chemo. This is basically damage to nerves and its mild for me at the moment with some tingling, hotness and numbness in my fingers and toes plus achy legs. I am hoping it does not get much worse. No signs yet, and it should improve after the chemo is finished.

I have made a chart to show the progress overall since the start, correction, my son Henry made the chart, thank you.

The armadillo incident… One of my oldest friends and fine fellow Bristolian Andrew very kindly sent me a copy of a new book charting the history of Bristol Rugby Club from it’s formation in 1888 to the present day. It’s big and I don’t promise to read all of the 640 pages but they did seem to fall open at this story from 1938 which made me laugh and struck me as being so typical of the sort of high jinks that over-exuberant rugby players have, and will, always get up to. Several of my friends reading this could well be reincarnations of the 1938 protagonists of this caper, you lot know who you are!

On Saturday 17th December 1938, Bristol travelled to Neath and lost 19-6. A few days later a letter arrives for the Chairman of Bristol, Jesse Milburn, from an international referee residing in Neath.

‘My dear Jesse, It is with the very greatest regret that I have to inform you that on the occasion of the recent visit of Bristol RFC to Neath, a member of the Bristol XV saw fit, after dinner, to remove from the Cambrian Hotel, one of the proprietor’s antiques, to wit, an armadillo.’ 

The letter goes on to say how annoyed the hotel owner is, how the armadillo has great sentimental value to him and cannot be replaced. It urges Bristol RFC to do all in it’s power to recover the stuffed armadillo, part of a collection of antiquities from the empire.

The letter continues… ‘I don’t know what you think, Jesse, but I am certainly of the opinion that this sort of thing is getting far to prevalent among a certain type of  rugger player , and the sooner it is stopped, the better it will be for the good name of  our grand old game’….’I will not pursue the matter further, but will confidently leave it in your hands, knowing full well that you will do all in your power to have this affair brought to a satisfactory conclusion.’

The subsequent Bristol committee minutes record the great lengths that the club went to try and recover the item but the players proved unhelpful, ‘what goes on tour stays on tour’ after all. It did emerge that the armadillo was in fact thrown out of the train home as it approached Bristol Temple Meads Station but the culprit was not named. I imagine that the Armadillo was unwittingly involved in some impromptu drinking game and made a sharp exit into the cold December air as a consequence. Despite asking Great Western Railways to undertake a search, appealing for sightings via newspaper articles and appealing to the City museum to try and find a replacement the Armadillo proved illusive and was finally declared missing in action. A grovelling apology seemed to mollify the hotelier and no further action was taken.

‘Safe as the Banks of England’ … Finally a lovely anecdote on the passing of 1966 world cup hero Gordon Banks R.I.P. During the 1970 World Cup in Mexico, Banks made saved a Pele header that seemed so certain to hit the net that Pele himself shouted ‘gooaallll’ as it flew off his head. Banks somehow scooped it over the bar at full stretch to make what is considered the best save ever. Legend has it that Bobby Moore jogged past afterwards, patted him on the back and said ‘stop giving away corners will you’.

Thanks again for all the support, back soon.

Scott

Early Feb 2019 – So pleased that January is over, it did drag on a bit. February brings the Six Nations Rugby, my 53rd Birthday and a bit more daylight!

I have just completed the 4th cycle of treatment and I must admit to finding it harder this time as it was deliberately a bit more intensive for the reasons described in the previous update. It has left me feeling tired with a few new side effects but nothing too serious and hopefully it will result in some faster progress so let’s see what the next set of tests reveal in a few weeks time. Now I have about a week off to regather and to get over a bit of a cold which caught up with me in the last few days, so time to take it easy, enjoy the rugby and look forward to a Birthday weekend with the family. There are another 4 rounds of treatment to go and then the transplant.

I have been thinking about Genetics and doing some reading which has been fascinating. It’s turned into quite a long note for the blog so there is not much room for other stuff this time, I seem to have run out of good rugby trivia for now anyway.

A lot of people ask me if my Myeloma is inherited or caused by genetic factors. The conversation is usually bit like this…

‘What symptoms did you have before being diagnosed?‘ – None whatsoever.

‘How was it spotted then?’ – I had a condition called MGUS* for many years which can progress to Myeloma. Everyone who gets Myeloma has MGUS first but the majority of people with MGUS never have a problem, most of them won’t know that they have it.

‘So how did you know that you had that then?’ –  My eldest sister died from Myeloma and during her treatment I was tested to be a stem cell donor and I matched very well so further tests were completed which discovered my MGUS. Sadly my sister was never well enough to attempt the transplant but that’s how I have known that I have had what is probably best described as a ‘predisposition’ to the disease for a long time and this has been monitored with regular tests over the years.

‘Aha, so it’s inherited then’ – Not so fast! Sorry but it’s not that simple. It has been known for many years that people with a history of Myeloma in siblings have a higher chance than most of developing the disease but it is still not a particularly high chance. The reasons for this have not been well understood but research is beginning to uncover some clues. There are clearly genetic factors involved but to put it into perspective the risk of developing Myeloma only increases by about 3 times if you have a sibling with the disease, add the presence of MGUS and the risk rises. Other complications include the fact that the sample sizes are very small, fewer than 10 in 100,000 people develop Myeloma in the first place so the incidence of siblings with the disease is small and studies are very limited by this. Also there are other factors involved, men and obese people are slightly more likely to develop Myeloma but there is no obvious connection with other lifestyle factors such as smoking or drinking. The most striking factors are all race related – Black males are roughly twice as likely to get Myeloma than White males while the incidence of Myeloma in Asia is significantly lower. This seems to point the finger at genetic differences and the research is very interesting.

Unlocking the secrets of the Genome… In a fascinating special supplement for National Geographic titled ‘The Future of Medicine’ there is a great piece about how fast and cheap it has now become to have your Genome analysed. A volunteer for the publication has her full genome sequenced in a few days at a cost of about a thousand dollars. A quick bit of Googling puts this into amazing perspective – the original US state funded Human Genome Project was officially launched in 1990 with a budget of over $3bn and the ambition to find a technology to unlock the detail of the full human genome within 15 years. A ‘rough draft’ was complete in 10 years and the project was considered complete by 2003, 2 years ahead of schedule due to to the rapid advance of sequencing technology and computing power.

Huge genetic databases and ‘Genome Wide Association Studies’ are now commonplace, helping scientists unlock the secrets of the Genome to predict our individual likelihood of developing certain diseases. Understanding cancer is a top target, not surprising when you consider that Oncology products are the biggest selling globally for the drug companies by quite a margin with worldwide sales approaching a staggering $100bn a year. Myeloma sits at about 18th on the list of cancers you are most likely to get with around 6000 diagnoses in the UK each year compared to around 60000 women diagnosed with breast cancer. Even for Myeloma the market is enormous globally with leading drug Revlamid approaching $10bn in global sales and growing fast. In persuit of these vast markets spending on R&D by the drug companies is huge at over $150m each year. Spurred on by these big sales opportunities, the new insights offered up by the Genome and other evolving technologies it is not surprising that we are in a golden age for the discovery of much more effective and innovative drugs and medical techniques.

Genetics and Myeloma… Unfortunately this story is not leading to a simple answer! There is no dominant Gene issue that predicts Myeloma. In some cancers Genes have been identified that have very strong statistically predictive ability, most famously in the BRCA1 and BRCA2 genes that prompted Angelina Jolie to have surgery rather than accept her high risk of developing breast cancer. Despite this it has been discovered that even without the BRCA genes there are other groups of women with high genetic risks of developing the disease due to complex combinations of other genetic markers; there is a lot still to learn. My understanding of the Genetic work on Myeloma is that it is combinations of high risk areas of the genome that are most promising to help us understand any inherited linkage and chances of developing Myeloma rather than a clear indicator like a BRCA equivalent.

My best attempt at answering the same question now? Is it inherited?

I am going to stick with the word ‘predisposition’ to best describe my chances of having Myeloma but It may well be that due to genetic patterns that we don’t yet fully understand the chances were higher than I perceived. Without full comparison of my genome with my sister, which is obviously not possible, I will never really know whether we were similarly at high risk or not.

A final thought on this – the vast majority of Myeloma patients have no affected relative, this is in contrast to other cancers and particularly breast cancer. So it’s probably a bit inherited but there is much that we don’t understand and many other factors involved. Of the c.6000 newly diagnosed Myeloma cases in the past year in the UK only around 20 of us will have had a family member with the disease.

More information from Myeloma UK:   www.myeloma.org.uk/documents/is-myeloma-an-inherited-cancer-infosheet/

* MGUS is short for ‘Monoclonal Gammopathy of Unknown Significance’ and is defined by the presence of an abnormal protein called a paraprotein or M protein in the blood.

It would not be a blog for me without a good quote. I don’t watch Call the Midwife (honest) but I have been catching the last few minutes recently as I settle down for Les Miserables and there is often a closing speech which is very well written and delivered. This one from the episode before last was particularly good and quite moving…

We can decide to be happy, make much out of little, embrace the warmth of our ordinary days. Life unfolds as a mystery. An enterprise whose outcome cannot be foretold. We do not get what we expect. We stumble on cracks, are faced with imperfection. Bonds are tested and tightened. And our landscapes shift in sunshine and in shade. There is light. There is. Look for it. Look for it shining over your shoulder, on the past. It was light where you went once. It is light where you are now. It will be light where you will go again.

For those of you that have persevered all the way to the bottom of the page here I am going to reward you with the most amusing picture of myself that I have…

Bristol zoo, early 1970’s, clearly not impressed and I still don’t like monkeys!

Dairy Notes – Mid January 2019

It seems like quite a while since I last wrote but 2019 has not delivered much in terms of news or changes until now. I have continued to feel well, in fact the extra few days treatment break over Christmas was good for me and I have started the new year feeling as well as I have done since beginning the treatment.

Progress report: I have just had some blood tests back and a meeting with my consultant so now have a progress report to give. After the excellent start that I described in my fourth diary note the improvement has been much slower but still positive, my Paraprotein level is down to 12 while the ‘Free Light Chains’ are down to 75. So this is only a small improvement over the past month or so but still excellent compared to where I started (22 and 250 respectively). While obviously we were a little disappointed not to see a stronger follow through from the first tests there is still some improvement – particularly in the Free Light Chains which have fallen from 90 last time to 75. The consultant seems focused on this indicator as the most important at this stage. The direction of travel is the right one, in the context of the starting point I have made very good progress and it is likely that the rate of change varies throughout the treatment. I have been feeling well so we talked to the consultant about speeding up the dosage over the next few weeks and we will do this by trying an extra dose of the Chemotherapy injection and steroids each week. So that will mean 2 a week for 2 weeks, the consultant would have been happy to continue more slowly but it will be good for me to feel like we are getting back on the front foot a bit. I may regret it if the extra dosage proves difficult to handle. The consultant is probably just humouring me as I am so impatient and ask lots of awkward questions but it does show that the process is very flexible and although we are now starting cycle 4 out of 8 it will mean that the original plan has already gone a bit off piste.

“Smooth seas do not make skilful sailors.” – African Proverb.

I still feel that I have passed a big milestone that I was very focused on, namely the first three cycles of my treatment which are now complete. This period proved quite intense mentally as I had no idea really what to expect in terms of my reaction to all of the drugs, I have been constantly learning through some of the early side effects episodes and adapting my diet, exercise and lifestyle in general by trial and error throughout. It was natural to take the ‘one step at a time’ approach to getting through this last 2 and a bit months. So now this milestone is reached and it has gone as well as I could have expected. I have coped well with the drugs in general and they are beginning to work. All OK, but it’s done now and time to move on to the next challenges.

The next phase of treatment will be slightly less intense (after the next 2 weeks!); longer, and designed to deepen the response already achieved to prepare me for the stem cell transplant in April/May. It represents a different challenge and requires a different mindset, it’s a Marathon rather than the leap into the unknown that I have experienced and dealt with ‘day by day’ so far. I have resolved to focus on some key priorities during these months and top of the list is keeping as fit and well as I can. I want to do everything possible so that when it is time for the transplant I am in the best shape I can be. Logically this will help my chances of coping with the procedure and recovering afterwards. Despite my energy levels being reduced a little and the sleep/steroid effect persisting I am currently able to keep up a respectable amount of exercise including yoga, pilates, walking daily and more recently some light weights to try and counteract the muscle wastage caused by the steroids.

Aside from this I also need to keep myself mentally positive and stimulated. It’s going to be a long 3+ months before the transplant and in case you hadn’t noticed it’s winter which is unhelpful for the spirit at the best of times! After the transplant spring and summer will be coming, that’s a good thought!

‘Come what come may. Time and the hour runs through the roughest day’ Macbeth wonders if he will ever become King. Act 1, Scene 3, William Shakespeare.

I really like this quote that Samantha introduced to me when we met at University. I think she had Glandular fever at the time and was struggling to shake it off. It always comes to mind during difficult times when it’s hard to see the light at the end of the tunnel, I think it serves as an eloquent reminder that whatever the circumstances the clock is always moving along, even if it seems stuck in treacle.

Some uncomplimentary thoughts on statistics…

‘There are three kinds of lies; lies, damned lies, and statistics’ -A saying popularised by Mark Train who attributed British Prime minister Benjamin Disraeli with coining the phrase.

With cancer there are dozens of statistics lurking in literature and online that immediately catch your attention after diagnosis. Consultants and medical staff also use this data regularly during discussions, even if they generally qualify any statistical ‘fact’ when discussing the individual. With Myeloma, like any other a cancer, there are statistical average survival rates, response rates to the various drugs available, percentage chances of getting certain nasty side effects, risk grading factors based on genetics, percentage chances of dying in the first year etc etc etc. Plenty to completely terrify you if you take them at face value. I don’t, and I try to avoid them completely now as they seem largely irrelevant to me. They are also generally counterproductive in my determination to maintain a positive attitude.

Here are a just a few of the many good reasons why the statistics are a lie to me. Let’s take average survival rates for Myeloma, I won’t bother quoting them even if the sources were consistent, you can google them up if you want but bear in mind the following three of many reasons that they mean nothing to me.

First the average age at diagnosis is somewhere between 65 and 70 – I am 52, fewer than 10% of newly diagnosed patients are below 55.

On average the newly diagnosed patient has more advanced symptoms – I had none. In fact way less than half of newly diagnosed patients are well enough to embark on a stem cell transplant as I will. Outcomes after transplants are better.

Finally, the data is all historic, based on patients diagnosed in the past. There are now a raft of new drugs and therapies available that are demonstrably much better than what was available before. This includes one of the drugs I take which represents a massive leap forward in treatment standards.

I could go on but it’s clear to me that I don’t fit in with anything close to an average and this helps me to maintain a positive outlook.

A bit more Rugby trivia, particularly for the Bristolians out there…

England v Wales at Twickenham in Jan 1927 was the first live Radio commentary of any British sporting event. An innovative plan was hatched for the commentator to divide the pitch into 8 squares which were numbered so that he could describe where play was taking place. The Sunday newspapers helpfully published this numbered pitch plan for fans to cut out and use when listening and while the commentator concentrated on describing the play his assistant was calling out the square numbers in the background. I occasionally listen to a Rugby match on the radio, and I think they should reintroduce this method as it’s very easy to lose track of where the play is.

‘I was in an open cockpit with what looked to me like a bit of fuselage and a few pieces of wire between me and eternity’

England won the game in 1927 by 11 – 9 and the England Hooker (my old position) was Bristol Rugby Club legend Sam Tucker who won 27 caps between 1922 and 1931. He was one of the first specialist hookers as previously the front row lads would just pack down however they felt like it when they arrived at the scrum. By 1930 he had won 22 caps and had been on a Grand Slam winning team but he was dropped for the Wales game in Cardiff. On the morning of the game England lost a front row to injury and a hasty call to Bristol was made to tell Sam to get himself to Cardiff a.s.a.p. With only 2 and a half hours to spare he grabbed his boots and managed to arrange a flight from Filton Airfield in a 2 seat bi-plane, his first ever experience of flying. He landed in a field on the outskirts of Cardiff where he hitched a lift to the city centre in a coal lorry. With no ticket, getting into the ground was not an easy task but he managed to make it to the England changing room with 5 minutes until kickoff. Spare a thought for Bath player Norman Mathews who had already been presented his debut England shirt and was ready to take the field as Sam Tuckers’ replacement when Sam made it in time to take his place. Tucker played well, and England won 3 – 11. He retained his place and poor Norman Matthews never did get an England cap.

In summary we are still on track, coping well, and remaining positive. The next few weeks may be a bit tougher with the extra treatment but I am really glad that we are doing this and hopefully it will get the pesky black dog to take a few more steps back. Finally, here is a picture taken after completing the London Triathlon in 2005, £2668 raised for the International Myeloma Foundation in a time of 3 hours 11 mins. I said never again but the bike and wet-suit are still in the shed so you never know – that’s the steroids talking!

I hope the new year is treating you all well, goodbye for now.

 

 

Diary Notes, Christmas 2018.

Writing from the hospital on the 28th Dec, first treatment day after the Christmas break.

We have had a very good Christmas so far; a treatment break for over a week, side effect free for now, and still feeling upbeat after the encouraging progress so far. 2019 holds new challenges and worries but that’s for next year and I will regather my resolve for that shortly, for now I am having a mini-break and what better distraction than a family Christmas.

With time to reflect on all that has passed in 2018 it has been a year for us with some wonderful moments and achievements that should not be left overshadowed. We are very proud of our (now grown up) children, Henry graduated with a First from Durham and has started an exciting new job while Lily nailed 3 A stars and an A at A level and has settled into Birmingham Uni for 4 years of Chemical Engineering. They are the stars on our tree. We also had the great news recently that Samantha remains clear from any sign of the breast cancer that she suffered 3 years ago. Add to that some wonderful holidays, great times with family and friends, small golf improvements, almost winning a photography prize and the warmth of summer.

In fact I feel a strong sense of appreciation of all that is good in our lives at this time, even small pleasures that were taken for granted have begun to reveal themselves again. Is this a Secret Santa from my illness? From the big black hairy interloper? I think so; even though he does not have a charitable bone in his body. In return I will give him a cardboard box from the presents to lie down in; he is looking a bit rough.

Returning to the subject of steroids (just a brief rant sorry) I have decided that there is absolutely no upside from these apart from the very important role they play in my treatment. They keep me awake at night, make me a bit irritable, and more than a bit OCD. OK so I was probably a teeny bit ‘over tidy’ anyway but now I can’t walk past the tiniest spot of dirt or something out of place without noticing. A mess in a cupboard or shed is still fine as long as I can’t see it.

And finally, in case you are thinking that at least I will be growing some muscles at last, they are the wrong type! The Anabolic ones are good at that but the ones I take actually have the opposite effect and cause muscles to shrink – so unfair!

Rugby trivia; one of my Christmas presents this year is a book called ‘Rugby’s Strangest Matches’ which documents unusual incidents at games throughout the history of Rugby. I am finding some of the history of the game that the author reveals rather more interesting than the incidents that have occurred but its a fun read.

The very first international match was between Scotland and England at Raeburn Place Edinburgh in 1871 in front of a 2000 crowd. Raeburn Place is the home ground of Edinburgh ‘Accies’ who’s current members can proudly boast playing on the oldest international rugby ground in the world. The teams of 20 consisted of 13 forwards and 7 backs, it sounds like a lot of rugby was confined to the 26 forwards enjoying a giant maul and pushing contest until a few years later when the 15 man game was endorsed as the new standard.

No injury replacements, let alone tactical substitutions, were allowed until the 1968/9 season so players often continued to play on with very serious injuries, during the 1893 Wales v England game in Cardiff one of the Welsh centres played much of the game with a broken collar bone so he could only catch and pass with one hand and eventually he ‘retired to the touchline’. There were no points awarded for scoring a try until 1886; touching the ball down merely entitled the team to have a ‘try’ at the kick for goal and some points – that’s why it’s called a Try. Oh and Scotland won, in fact Scotland and Wales dominated the home nations for the first decade or so.

Our thoughts have been with our lovely friends Mary and Stef over Christmas. Stef is one of the 2 people that I mentioned has been diagnosed with smouldering Myeloma this year and in a cruel twist of luck Mary his wife was diagnosed with a brain tumour just a few weeks ago. Mary has bravely undergone surgery to remove the tumour and somehow made it home for Christmas, we hope they have found a way to find some peace and enjoyment with their 4 boys over the past few days. I know they read this so a big hug to you both, I know your resolve is strong and I hope we can see you soon. XXX

That’s all folks. Yesterday I started the last of my first 3 treatment cycles so that will be finished in 3 weeks time then the treatment slows down a bit for the next 5 cycles. there will also be more blood test results to report on in a few weeks time. You will be glad to hear that I have nothing more to say about Moby Dick so I will wish you all a very successful and fulfilling 2019; enjoy the rest of the festive season!

Scott.

A very round Robin in the garden. Instagram @beachymeech

Short diary note after meeting my consultant this morning 19/12/2018.

I mentioned in the previous blog that my blood tests suggested some positive response to the treatment already. Today I had this confirmed by the consultant with  discussion of the full detail. Some of this is complex but then some of those following these posts are experts so I will go with all the data and try to explain a bit. There is not going to be a test at the end so feel free to fast forward after the next paragraph.

The key message is that things are going as well as they could be at this stage, we are delighted, there are no givens with Myeloma so this is important news. Equally its very early days and there are greater challenges ahead, notably my planned stem cell transplant in the spring. But one step at a time.

Myeloma is cancer of the plasma cells made in bone marrow, cancerous plasma cells crowd out the useful ones in the bones suppressing the immune system and ultimately causing bone damage. The incidence of Myeloma in the bones can be measured with a bone biopsy but this is quite a performance and painful; I had one before diagnosis but this won’t be repeated for a while thankfully. Normal plasma cells make antibodies while Myeloma plasma cells make abnormal, useless ones, called Paraproteins which appear in the blood. Each Paraprotein is made up of 2 heavy chains and 2 light ones. Hence the key part of the blood test for Myeloma is the measurement of these Paraproteins and their makeup between heavy and light chains. A rise in Paraprotein levels and particularly a rise in the light chains is a high risk indicator for Myeloma onset. And the first results are in..

These detailed blood test results are the first since my treatment started so the reference point is just before that at diagnosis in October. Tests were taken after the first cycle so only 4 weeks in.

Paraprotein (IgG type) level has fallen from 22 g/L to 13g/L

Serum Kappa Free Light Chains fallen from 250 mg/L to 89 mg/L

Kappa/Lambda free light chain ratio fallen from 116 to 33 – that’s one for the Ninja’s only, will try to explain if you have a spare hour but its good anyway.

So if that’s what is happening in my blood what is happening in my bones? – the short answer is that the fall in Paraprotein should be reflecting a similar proportionate fall in the Myeloma levels of my Plasma cells. The worst parts of my bone biopsy showed some very high concentration of Myeloma, 80% in one of the tests, so if my Paraprotein has nearly halved then so should this, roughly. It needs to go a lot lot lower before I am ready for the transplant but its a strong start and the response should continue.

Paraprotein:

Most of you are forgiven for giving up or nodding off by now, please don’t unfollow me! After my last treatment on Tuesday this week I have a bit of a break over Christmas until starting the next and 3rd cycle on Friday 28th Dec.

I will write again over Christmas before then with (close to) zero medical content I promise.

A very happy Christmas to you all and be in touch soon.

Scott

 

Diary Notes – Winter Solstice 2018 approaching!

After a short but positive progress update I will be going a bit off piste today. I have found myself developing quite a strong philosophy towards my Myeloma which has taken me by surprise but equally has stuck with me for some time now. Myeloma is invisible so maybe this is just a way of of giving it an image and character that I can relate to. Anyway I do find it helpful so after some debate I have decided that I would like to share this with you and it has been good therapy for me to put it into words. It may seem a bit weird at first but please stick with it!

First the news, there has been an elephant in the room that I have deliberately not mentioned so far, will my treatment work? The good news is that the results from my first full blood test since starting suggest that the answer is yes. Despite having the best available treatment and care there really are no certainties with Myeloma and some patients fail to respond so obviously this is a huge relief to us. I have now completed 2 of the 8 planned treatment cycles that are intended to prepare me for the stem cell transplant in the spring so it is still very early days but the test results show that there is a clear reduction in the level of cancerous cells in my blood.

The Black Dog represents different things across cultures around the world but there are 2 main themes…

In British and other folklore the black dog is generally a ghostly beast that unleashes terror in the night time. A hell-hound immortalised by Conan Doyle’s Hound of the Baskervilles.  ‘A hound it was, an enormous coal-black hound, but not such a hound as mortal eyes have ever seen!’ Some of the British regional names conjure the image well, from ‘Hairy Jack’ in Lincolnshire, ‘Black Shuck’ in Norfolk, ‘Muckle Black Tyke’ in Scotland through to ‘Moddey Dhoo’ in the Isle of Man. Most are considered evil and sighting one an ill omen but there are some rare exceptions where the beast is considered altogether more benevolent. Maybe it’s my west country roots showing but I particularly like the rather kind version of the beast that is said to lurk the moors of Somerset. ‘Gurt Dog’ is believed to protect and guide folk to the extent that children could play alone on the Quantock Hills while safely guarded by Gurt Dog. I have often felt that some of the cider down there has hallucinogenic qualities!

The other popular symbolism for the Black Dog is that it represents a metaphor for depression. Winston Churchill referred to periods when the ‘Black Dog’ was upon him and in Australia the Black Dog Institute is an organisation dedicated to research and practical help for those suffering from depression. The imagery is popular in art and literature…

“A light seen suddenly in the storm, snow
Coming from all sides, like flakes
Of sleep, and myself
On the road to the dark barn
Halfway there, a black dog is near me.”
— Robert Bly, Melancholia, in The Light Around the Body, 1967.

So where is all this leading? Don’t worry, I have not been wandering the Quantock Hills  in a dark mood drinking Scrumpy over the weekend! For some time now I have had a mental image of a black dog following me and slowly catching up. That creature had been my MGUS, the blood condition that I had for many years and which led to my Myeloma. I don’t think of it in a particularly depressing way and I am really not sure where this came from, possibly a dim echo of the big scary black dog in our own culture. Anyway, the metaphor has persisted and I feel like sharing the idea as it has become embedded in the way I feel about living with this uninvited visitor in my life.

My MGUS blood tests were typically 2-3 times a year at Kings Collage Hospital in South London. MGUS is a condition where there is an abnormal protein in the blood that suggests a possibility of developing Myeloma. In the early years I was nervous about the outcome of each test to say the least, Samantha and I found it difficult to come to terms with the uncertainty but then there was over a decade when the tests revealed that nothing was really changing so it became quite routine – ‘A distant ship smoke on the horizon’. When things started to change around 6 months ago with my test results showing warning signs the metaphor of the black dog occurred to me and it has stuck. After following me at a distance for all that time he was catching up at last, growing stronger and faster, impossible to ignore.

On October 19th this year, the day I was diagnosed, he was suddenly right there beside me. After the inevitable period of complete shock and difficulty processing the news it occurred to me quite quickly that the only way forward was to try to learn to live with this brute and accept him into my home. It’s not as hard as it sounds, I don’t agonise about why he chose me or have any illusions about how dangerous he is but the better I know him the better I feel that I can accept his presence and get on with my life. I have to respect him while we try and get him under control – diminish his threat. He has had it his own way for too long! Growing ever stronger with no resistance other than my own immune system.

Well you are not having all your own way now are you? If this treatment is hurting me then it gives me great comfort that he is hurting too, maybe more so. In this sense we are in this together, we both start this treatment in good shape, he has grown big and strong but I am also fit and well with no symptoms. It will impact us both. So it’s a symbiotic relationship, almost a bond, respectful enemies living together. He is generally quiet, just sat there with me brooding, smart and dangerous. Now that the treatment is having some effect I have indulged myself in the occasional bit of sledging particularly when I have not felt so well: ‘Feeling that matey? You don’t look so clever yourself today’ or more likely something unprintable. Give us some time and we may even start to get along a bit!

By now you may have Pink Floyd’s ‘Comfortably Numb’ playing in the back of your mind and you are probably thinking that Numb doesn’t get close, Scott has clearly lost his marbles and the bats have left the roost. Don’t worry I really am fine, as long as someone waters this plant growing out of my head!

The book that I mentioned in the previous blog ‘The Cancer Whisperer’ by Sophie Sabbage turned out to be a very inspirational read. Sophie was diagnosed with terminal cancer and writes about how she put a plan in place that helped her and can help others. One of the key elements is knowledge and using that to build a dialogue with your consultant, taking some ownership of the treatment process and feeling that you have some influence. She rejects the other option of being a passive patient arguing that your consultant is the expert on the treatment options and medicines but that only you are an expert on yourself. She explains this better herself… ‘Educating yourself about your particular form of cancer is one of the most important and empowering things you can do after you’ve received your diagnosis. Either you can leave this to your doctors and do what they say, or you can find out exactly what you’re dealing with and what treatments are available (or not). Then you can partner with your doctor and other practitioners with more confidence, intelligence and freedom to chose your own path.’ 

This is excellent advice and because I had a head-start, knowing all about Myeloma before full diagnosis, I have been able to feel engaged with the process which brings with it a level of confidence I don’t think I would have otherwise. My consultant is learning to live with my endless questions and I regularly send him data from new drug trials to make sure he is keeping up!

I am now well over my self imposed 1000 word target so will leave it there for now and save some other stuff for the Christmas edition. Thanks for reading, thanks for supporting and all the best for Christmas. I am very much looking forward to our somewhat simpler version of Christmas Day than usual. Lastly a couple of quotes which sum things up pretty well for me…

‘Keep your friends close and your enemies closer’ – Sun-tzu,

‘That which is clearly known hath less terror than that which is hinted and guessed at’― Arthur Conan Doyle, The Hound of the Baskervilles.

Someone once asked Woody Allen if there was anything he would do differently if he could live his life again and he said ‘Well I wouldn’t read Moby Dick’

Scott

https://www.myeloma.org.uk/

A very interesting read about Myeloma treatment advances….

https://www.kqed.org/futureofyou/442147/once-lethal-multiple-myeloma-may-be-in-a-golden-age-of-treatment

 

 

Diary Notes – Early December 2018

The past few weeks have been a mixed bag to say the least. Firstly I would like to thank you all for the great support and for signing up for the updates, I now have an audience! Almost as many followers as I have on Instagram. On reflection my first post was a bit heavy on the medical detail so there is less of that this time. Most importantly I have been feeling well in the past few days after some head ache issues and other minor side effects. And the steroid side effects are ongoing but manageable – feeling energetic and a bit OCD on the days I take them and struggling to sleep at night. Generally speaking it’s still going well 5 weeks in, with none of the more worrying side effects appearing yet.

My treatment continues to represent a learning curve and if I needed any reminder that some strong drugs are involved, my blood tests over the past three weeks revealed that my platelet count fell from 150 to 67 before bouncing up to a more normal 251 after a scheduled treatment break. Platelets are the ones that clot your blood, nothing to worry about as apparently 67 is still plenty. I was advised to try not to cut myself – will do my best!

The other bit of advice I always get is to make sure I am drinking enough to protect my kidneys and flush through all the toxins. In the first few weeks I clearly took this to heart, drinking copious amounts of water. Here is some easy self help I thought – surely it’s not possible to drink too much water is it? Well I probably did overdo it and got a bit over-hydrated, I think I have found a good balance now.

I have had a few rashes, a bit of a red eye and a few other minor things but so far these have all been short lived and the nurses all feel that this sort of thing is par for the course. As I write I am feeling well and importantly my platelets and other blood counts are looking pretty normal. That’s the medical update out of the way!

A terribly sad and impossibly unlikely coincidence has occurred in the last few weeks. Two friends of ours have both also been diagnosed with Myeloma recently, both at the ‘smouldering’ stage which means that they will be watched carefully for now rather than having treatment straight away. This news has been difficult to take in, it is painful knowing full well what they and their families are going through. I do hope that we can help each other in some way and that I can be of some support by sharing my experiences and knowledge gained by being ahead of them on the road. Not surprisingly Samantha and I feel empathy for these friends particularly acutely at this time.

I cannot help from being struck by the almost impossible odds of this occurring. We live within a few miles of each other and are a similar age. Being generous, there are only about 200 people who I would say I know this well. The UK population is now about 66 million and only about 6000 people are diagnosed with Myeloma each year, the chances of three of those 6000 people knowing each other must be remote to say the very least. One for you mathematicians out there.

On a happier note the highlight of the past few weeks was the convincing win by England over Australia. No seriously the real highlight was our daughter Lily popping home for a visit from Uni the Sunday before last. Our son Henry has just managed to navigate his first two weeks in a full time job so there was a lot to catch up on and much to feel proud about. Here we are enjoying a Sunday walk in Epping Forest near home.

‘A good laugh is a mighty good thing, a rather too scarce a good thing’  Herman Melville

Despite the very difficult news from our friends and my own situation I have found a lot to laugh at in the past few weeks. I chose this quote from Melville not because it is particularly good but because I found it ironic coming from the man who wrote Moby Dick. I defy you to find a good laugh in that! Its one of the most humourless, impossibly boring, and longest books I have ever attempted. A few good chapters when the whale finally shows up on page 595 (yes really) does not make it worth it! – ‘There she blows! – there she blows! A hump like a snowhill! It’s Moby Dick!’ Skip the rest and its a good short read from there.

A friend recommended a book about dealing with cancer by embracing it and unlocking the possibilities of living life to the fullest despite the cancer, sounds good! Anyway I searched for it on my Kindle which recommends other books on the same subject that you might like. The book I was looking for is called ‘The Cancer Whisperer’. What made me laugh is that the one listed next to it was called ‘FUCK YOU CANCER!’. Quite a contrast! I might get them both.

Eddie Jones, the England Rugby coach, does make me laugh. After the excellent win over Australia (back to that again) he was asked about the performance of the Winger Joe Cokanasiga (try saying that after a few strong ones). This bloke is quite a unit and smashed his way through for a great try then nearly did it again. Eddie was getting asked if he was comparable to the legendary Jonah Lomu and clearly trying to play this down replied that we should ‘Wait until he gets proper pants. He’ll be able to play a bit, he’s gone shopping now!’ I have no idea what he was on about either!

Samantha found an old exercise book that Lily our daughter had used as an occasional Diary when she was about 8. One page listed good things and bad things about school. The ‘Good things’ were all a bit halfhearted – ‘Some lessons are good’, ‘Some teachers are good’, ‘Uniform is OK’, best subjects are Drama, Art, PE and Tech.

She is much more expressive about the ‘Bad things’ – ‘Most teachers are bad’, ‘It lasts too long’, ‘French is pointless’ and best of all ‘Maths is like Hell!!!’ This reflected the title of the bad things column below and who would have predicted 2 A stars at double maths A level!

That’s it for now, other than another happy highlight to report from last weekend. Bristol beat Leicester 41-10. Who would have predicted that at the start of the season – enjoyed that!

All the best for the festive season, and I hope to post again over the next few weeks before the turkeys start to arrive.

Keeping positive!

Scott.

For further reading, Myeloma UK are the best place to start…

https://www.myeloma.org.uk/

My username is @beachymeech on Instagram if anyone is tempted.

Diary notes – November 2018.

Third and last week of first Treatment ‘cycle’ – enclosed ‘The Plan’ below for reference.

Writing from room 201, Chemo Unit, The Holly, Buckhurst Hill, UK.

My overwhelming emotion over the past few weeks has been the positive feeling of getting started, the fightback has begun.

It’s only just over a month since my full diagnosis and I am into week 3 of treatment so things have moved fast since diagnosis but the long hot summer of tests, uncertainty and waiting to start was a slow torture. The discipline, order, and routine forming nature of ‘The Plan’ restores some calm, grounding and purpose. Getting on with it has been cathartic.

I have generally felt well enough over these early days to do a lot of normal stuff that suddenly feels like a great pleasure, mowing the lawn never seemed so good!

More importantly I feel that Samantha and I have used the time well. There have been many people to tell about my illness and this has taken time and care. Communicating bad news can be difficult and exhausting, you have to pick your moments when it feels right and different approaches work better for different people.

We have had the opportunity to see all of our close family in person and spoken with many friends. The support has been wonderful and overwhelming, many people find it hard to know what to say (as do I when I am in similar situations) but then there are the eloquent ones who can deliver some motivational gems!

All of the talking, explaining, hugging, emotion has been great therapy. I have a positive outlook and hopefully this has helped everyone else to be positive about my situation.

I like to think that this will create a bit of a positive feedback loop, that I will benefit from this, perhaps during difficult times when my support group have that early reference of positivity to remind me of when I am feeling less optimistic or unwell.

I say that I have generally felt quite well and while this is true it has already been a bit up and down and there have been challenging days, particularly recently.

The Immunotherapy drug is something that I had a small allergic reaction to initially but now has no obvious effect and the Chemo (Velcade) will probably have a more cumulative effect that my consultant expects could take a few more weeks.

So the side effects I have been experiencing so far are largely down to the cocktail of ‘other stuff’ and it seems to me that it’s the Steroid that is the prime suspect – Dexamethasone.

It’s an important part of the treatment as it works with the Chemo to improve it’s efficacy but I have to say that I completely underestimated the potential impact, particularly at high doses.

Sleep has been a big problem, if feels like I am constantly overdosed on caffeine, jetlagged, and restless but its not unmanageable and I am learning how best to cope with it via a strange mix of meditation, sleeping tablets, exercise and the occasional glass of wine which sadly looks like getting phased out due to the other current challenge.

This is hydration, and again I need to learn to manage this better as it’s so important. I am drinking loads as instructed, at least 5 litres a day to flush through all the drugs, toxins and hopefully some dead cancer cells but it seems that just drinking water diligently day and night is not really enough in itself.

I am finding that a heavy meal can dehydrate me, maybe all the fluids just sit in my stomach, held up by the food for long enough to cause a problem. Alcohol dehydrates me fast too so these 2 things in combination, as appealing as they seemed last Sunday, led to 2 fairly rubbish days and even worse nights than usual. Achy, headaches, slightly feverish, constipated. Now resolved and back to ‘normal’ –  need to keep learning and adapting.

Will try the glass of wine with a light breakfast next time!

So overall so far so good, thanks so much for all the kindness and messages of support.

Scott.

An email from a French friend..

I am so sorry to hear about the unexpected and distressing news that has turned your life and your family’s life upside down. Nothing prepares for this news and it takes of a lot of courage to face this situation. But I trust that your calm, bright and positive frame of mind and the love of your family have kept the clouds of doubt and anxiety at bay and kept you focused on the steps to remission.

 

‘The Plan’

My treatment plan started on November the 7th 2018. While acknowledging that it could change along the way as circumstances dictate it is a detailed roadmap for six months or so which, with luck, gets me to a position of remission.

It has 2 distinct stages:

The first stage is a long series of ‘cycles’ of Chemo and Immunotherapy treatment designed to substantially reduce the level of Myeloma, this is designed to take about 5 months.

Stage two is a Stem cell transplant which will be 3-4 weeks in hospital. Stem cell harvesting, high dose chemotherapy, stem cell replacement, then recovery. More details nearer the time!

Stage one has 8 ‘cycles’, 3 short then 5 long when the treatment starts to get stretched out after Christmas. The logic is that the early 3 cycles are intense in order to have a strong impact, later on less drugs are needed to keep up the momentum of disease reduction. It may also be the case that side effects will be building up so slowing the pace makes sense from this perspective too.

My current focus is the first 3 short cycles which take me through to the first week of January, this feels like a good initial target and milestone, one day at a time.

Each of these first 3 cycles is 3 weeks long and consists of:

• Weekly Immunotherapy infusions (tuesdays for most of the day via IV)
• Chemo twice a week (a quick injection on tuesday and friday
• High dose steroids to support the Chemo (20mg Dexamethasone 4 times a week)
• ‘Other stuff’ – drugs to protect my Kidneys, Bones, Stomach. Antivirals, Antihistamine, etc.

For someone used to the occasional Ibuprofen for a hangover the stack of drugs lined up on day 1 was a bit daunting. Luckily needles don’t bother me too much and my cancer Nurse Hilary says I have great veins! It’s also surprising how you get used to popping loads of pills, it soon seems like the new normal.