Update XXIV – Milestones

It’s been a while since my last communication, partly due to a lack of inspiration during lockdown but also because there is no real change for me on the health front so I don’t really want to bother you all quite so regularly. The maintenance treatment seems to be doing what it says on the tin – maintaining my remission, so as long as this remains the case I will be on a go-slow when it comes to the blogging. Having said that the last few months have been noteworthy in that there have been several important milestones for me. Also Christmas is coming in case you hadn’t noticed, the vaccine fairy is on its way, and I have been making bread sauce today so the smell of cloves and nutmeg are wafting around the house making me keen to spread some seasonal goodwill to you all.

Milestone’s – So in the last month or so there have been some important anniversaries for me, October the 19th marked 2 years since my diagnosis, November 5th was 2 years since my first treatment, then of course it was just over a year ago that I was writing updates from UCLH during my stem cell transplant. The great thing is that I feel almost as well now as I did before all the treatment started. I have recently been a regular visitor to the GP’s surgery to see the nurse for a long series of vaccinations, the stem cell transplant wipes out the immune system to the extent that protection against things like hepatitis, MMR and the like has to be replaced.

The Advent Calendar – What a great excuse to eat chocolate at breakfast! Although I must say that I have been pretty disappointed with the portion sizes so far, I won’t name and shame the brand but the minute triangle of Swiss delight is barely worth bothering with. I am thinking of purchasing my own, much more substantial bar of ‘breakfast chocolate’ to supplement the pathetic little morsel. The chocolate filled Advent calendar first enjoyed popularity in the late 1950’s, when you think about it you have to take your hat off to the marketing genius that came up with it. Basically its a great way of disguising a tiny bit of your product behind a brightly coloured and exceedingly cheap bit of cardboard; the margins must be spectacular with the poor unassuming customer unable to see what they are actually buying.

Bread sauce – ‘Every Briton’s sacred and stodgy inheritance’ according to Nigella Lawson although I think that slightly understates it’s qualities personally and at least it’s one of the few Christmas traditions that has its roots firmly in our own history, dating back much longer than the Advent calendar. Recipes for bread sauce have been passed down by generations for hundreds of years, a culinary relic of the middle ages when cooks used stale breadcrumbs to thicken sauces. Anyway for me it’s right up there with the Yorkshire pudding in the pantheon of great British delicacies, a well made sauce is a velvety, creamy oasis of moisture making the driest Turkey breast a succulent flavoursome mouthful. I’ve made about a gallon today (approx. 1m calories) and frozen it ready to reheat for the festivities. Our recipe seems quite similar to Delia’s, if you have never tried it then please give it a go, you don’t know what you are missing!

https://www.deliaonline.com/recipes/international/european/british/traditional-bread-sauce

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Florida Man – Here is an alternative idea if the Christmas cracker jokes fail to amuse. Type your birthday and ‘Florida Man’ into google and search news. The idea is that there will always be an amusing story about the antics of someone in Florida on the day you were born and you can see who gets the funniest. Here what happened when I tried…

https://www.foxnews.com/us/florida-man-arrested-for-throwing-alligator-through-drive-thru-window

On a serious note this has been a pretty strange and worrying year so I sincerely hope you all find a way to enjoy Christmas with as many of your family and friends as is safely and legally possible.

Scott.

Update XXII – ‘Carry on Shielding’

On the daily government update Boris has announced that from Monday people will be allowed to meet in small groups and see family and friends in the garden if they are lucky enough to have one (a garden and a friend!). For those of us on the extremely vulnerable list the news is less encouraging with a clear message to ‘Carry on Shielding’ until further notice; of course I will be applying a degree of personal discretion and common sense in my interpretation of the rules – see you in the garden!

Unfortunately they stopped making ‘Carry On’ films a long time ago which is a shame as the current situation would provide fantastic material, particularly with the shenanigans and rule bending going on by the leading characters. One of my favourites is ‘Carry on up the Khyber’ where Sid James plays Sir Sidney Ruff-Diamond in command of a British outpost somewhere near the Khyber pass with the soldiers of the kilted ‘3rd Foot and Mouth’ regiment. One of the scenes seems particularly relevant to the current crisis; when news of the native revolt led by the Khazi of Kalabar (Kenneth Williams) reaches the outpost:

Captain Keene:    What do you intend to do Sir?                                                                               Sir Sidney Ruff-Diamond:    Do? Do? We’re British, we won’t do anything…                                Major Shorthouse:    ...until it’s too late.                                                                                          Sir Sidney Ruff Diamond:    Exactly!  That’s the first sensible thing you’ve said all day!

khyber

My own ‘carry on shielding’ story has taken an unexpected twist… Samantha has just had the antibody test for Covid which came back positive. At the start of the lockdown in mid March she had some mild flu-like symptoms and then a loss of taste and smell for about a month, at the time we did not think it was the virus until the loss of taste and smell became recognised as a common symptom.  It seems likely that I have had it too although if I had any symptoms they were mild and indistinguishable from the side effects of my last dose of chemo at about the same time. Anyway the irony is that while we have been extremely careful in terms of shielding me from the outside world I have been confined to the house with the modern day equivalent of Typhoid Mary*. I’m getting tested next week so I really hope I have had it and can relax a bit.

I have spent a lot of time over the last year or so contemplating what life might be like when my treatment ends and I can begin to enjoy what is hopefully a long-lasting remission. The ‘to do’ list is pretty extensive and you can guess most of it I am sure – travel, socialising, restaurants, golf, fishing, watching rugby, etc. I don’t have a what not to do list but if I did it would mostly look exactly like what I am now doing. So like you all I am busy zooming, gardening, reading and making bread – yes I have flour and yeast! Then there is the endless quest to get supermarket delivery slots (we are advised not to go out to the shop) and the sheer joy of getting a delivery, those are the best days, it almost brings a tear to the eye just visualising the lovely blue or orange vans!

We have spent a fair bit of time in the virtual pub on zoom, we call it the Rose and Corona… It’s been a fun way to keep in touch with family and friends and I am sure we will keep them going to some extent even when the real pubs are open again but it will be lovely to have the choice. There are some clear pluses and minuses of the real versus the virtual…

Benefits of the Zoom pub:

  • If your mates don’t show up nobody sees you drinking alone
  • It’s much cheaper, the measures are ‘proper’ and a lock-in is a cert
  • Access to the loo is unlikely to be blocked by someone snorting coke, you would hope so anyway
  • Getting home to bed should be easier, but is still dependent on consumption
  • ‘Bar presence’ is not an issue with the fridge
  • Disagreements are limited to verbals, offering someone ‘outside’ is not an option, it’s not even allowed right now

Negatives of the Zoom pub:

  • No barmaid/man to chat up or keep you company while waiting for mates to solve tech issues and show up
  • The endless freezing, accidental muting and time lags are very annoying
  • You have make your own food/snacks
  • If you spill a drink (or a worse mishap) it’s on your own carpet
  • It’s unlikely that you will make new friends at the Zoom pub, but you might lose some old ones
  • If you do meet someone new they are likely to be a hacker or some other scumbag – pull the plug immediately

I do sympathise with all of the frustration caused by the current restrictions, even though I have had more practice than most at social distancing over the past year or so it really does not get much easier. One neighbour seems to be suffering the frustration of lock-down more than most as the onset of Covid coincided with the delivery of his shiny new Ferrari which is has been subject to it’s own confinement in the garage. Luckily I am told that the sound of the engine is a big part of the Ferrari experience, apparently you are ‘completely engulfed by a huge explosion of beautiful sound that is unlike any other car’. Our neighbour has been engulfing himself in the sound regularly by firing up the beast in his drive without going anywhere. I have been trying to see the appeal of this but must say that the only sound I have been engulfed in is the sound of pure frustration. Thank goodness he is allowed out to drive it now.

In terms of my health I am feeling well… I am down to a ‘maintenance’ level of treatment now which is designed to keep me in remission for as long as possible. Myeloma has a nasty habit of coming back, so I would really appreciate it if this virus could just hurry up and go away to let me enjoy my remission to the full!

Stay safe everyone!

Scott

P.S The Khyber pass scenes were filmed in Snowdonia.

* Typhoid Mary was an asymptomatic ‘super-spreader’ of Typhoid in New York.

Update XXI – Viruses – the good the bad and the ugly.

I am nearly at the end of my second and hopefully final round of ‘Consolidation treatment’- a sort of top up after the transplant. As mentioned the start of this treatment was delayed by a Virus and then the second week was postponed as I had another one so its all been a bit stop-start. Despite the slow start my blood test results are already showing that the new cocktail of drugs is working really well and the level of the key paraprotein marker in my last blood sample was still detectable but not measurable, down from 3g/L before this treatment. So the quality of my remission has already improved and we feel justified in our decision to go with the extra treatment despite having to venture into London to get to UCH each week when I am supposed to be ‘Shielded’ for 12 weeks. Its the only time I get out of the house now anyway.

I tick quite a few of the boxes to get into the ‘Shielded’ camp… Actively receiving chemo, Stem cell transplant in last 12 months, all leading to a weak immune system. The key measure for a weak immune system is a blood test for Immunoglobulins (antibodies). The five major types are IgG, IgA, IgM, IgE IgD and they all have different functions with some having several sub-types. For example IgG antibodies have 4 types and form the bulk of our defences against invading bugs, it is also interesting in that it is the only one able to cross the placenta and protect the foetus. IgA tends to be found in areas such as the gut and respiratory tract to protect against bacteria and viruses, it is also present in saliva, tears and breast milk. I could go on but suffice to say that I am a bit short of them at the moment, my IgA which should be between 0.7 and 4.0 g/L is only 0.2. Hopefully they will perk up a bit after this treatment when I will go on to a much lower strength of maintenance therapy which will be a daily pill and a monthly infusion.

Viruses – The good, the bad and the ugly… My last virus was my 3rd so far this year and its not surprising that I am picking up a load of bugs with my immune system still in recovery mode and knocked back again by the new treatment. This last one was a coronavirus, thankfully not Covid-19 but a more common version which is basically a common cold. There are lots of different coronaviruses, the one I had was one of the 4 common human coronaviruses that goes around causing coughs and colds all the time. Animals have many of their own types and the ones that cause us all the real trouble are the ones that evolve from animal viruses so that they can pass amongst humans; SARS (severe, acute, respiratory syndrome) and MERS (middle east respiratory syndrome) are good examples and now we have the less catchy Covid-19. Anyway enough of stuff you probably know already, what might be more interesting?

Ancient viruses are buried in our DNA making up about 8% of the human genome… Certain types of viruses, called ‘retroviruses’ are able to insert their own genome into the DNA of a host cell becoming part of the host’s genome and replicating itself further. We each have around 100,000 pieces of this viral DNA and while the research is at early stages it is likely that some of these are useful for us, protecting us from some conditions while others may make us more prone to things like cancer. Some of these DNA pieces are unique to humans but others are ancient throwbacks to our ancestors, very distant ones. One retrovirus common in us mammals is also found in cod and tuna, suggesting that it was invading our marine ancestors 450 million years ago before we crawled out of the sea. As some of you know I have a particular interest in fish, particularly tuna, so maybe I have a particularly high level of tuna DNA? brilliant! Here is a good read if you find this interesting… http://www.nytimes.com/2017/10/04/science/ancient-viruses-dna-genome.html

Could some viruses prove to be useful in cancer treatment?… The answer seems to be a pretty clear yes, some viruses have a tendency to infect and kill tumour cells, these are known as oncolyctic viruses. When this type of virus infects the cancer cell it duplicates until the cancer cell bursts allowing the disease to be more easily recognised and attacked by the immune system. One such oncolytic virus has even been approved for use in skin cancer in the US, it is basically a herpes virus that has been modified so that the patient does not get the herpes but gets the benefit of the virus attacking the melanoma. Many other types of viruses are being investigated as potential cancer drugs and in myeloma there have been trials using a modified measles virus with some success in a very limited trial for patients in the US who had few treatment options left. One 49 year old woman seems to have responded amazingly well while others have had a mixed response, there is a very long way to go but it seems promising.

The Ugly One…

What You Should Know About Coronavirus Disease (COVID-19)

I just watched the amazing Chernobyl series… everyone else seems to have seen it already but I found it completely gripping and the fact that the catastrophe was a relatively long time ago (1986) means that we have had time to study the long term effects on cancer rates across the affected regions and particularly amongst the hundreds of thousands of workers that were tasked with cleaning up the mess. The data on estimated cancer deaths caused by the contamination is as gruesome as some of the scenes in the TV series. The evidence suggests that the accident will ultimately result in tens of thousands of additional cancer deaths across the affected regions with a disproportionate impact on the clean up workers as you would expect. A higher than usual incidence of many types of cancers has been observed including myeloma where cases among the clean up workers have been double the normal.

So I am not the only one spending a lot of time at home at the moment… unless of course you are one of our key workers, and I sincerely thank you if you are, we will need to get creative to keep sane. We are now binge watching the very enjoyable ‘Homeland’ on Netflix but averaging 2 episodes per night means it will only last about a third of the way through my 12 weeks. I really miss the sport already, particularly the rugby but I am confident that our creative nature will fill the gaps, its really interesting to see how the virtual world and IT in general is beginning to play a big role. Samantha’s choir is already having online gatherings and a friend managed a meeting with his beekeeping club. I am looking forward to a drink tomorrow with friends in our virtual pub which we have called ‘The Rose and Corona’; one advantage that it has over a real pub is that if your mates don’t show up it’s much less embarrassing to be drinking on your own at home where no-one will see you. Lets hope we can make the tech work.

Best wishes to you all at this difficult time.

Scott.

‘Come what come may, Time and the hour runs through the roughest day’

 

 

 

 

 

 

 

 

 

 

 

Update XX – ‘Consolidation’

After a short delay due to a virus or two I have now started my ‘consolidation’ treatment which is a sort of top up after the transplant to try and reduce or eradicate the low level of residual disease further. Yesterday was the first full day at UCL Hospital and it turned out to be quite a long one with a few delays but no complications, so all good but tiring. As I mentioned last time I am technically in remission after the success of the transplant so this is to see if we can improve the quality of the remission to give it a chance of lasting longer. Anyway the new cocktail of drugs is mostly ones I have had before and it will probably only be for 2 cycles (about 8 weeks). This will not seem too bad compared to last year which was a bit of a slog to say the least, much like the rugby at Murrayfield at the weekend which I was lucky enough to attend.
Since the transplant I have had a nice long break to recover with only a few drugs to remember to take each day. My energy levels have improved a lot and I have been really enjoying doing some things that I would not have contemplated for most of last year -long may it continue!
I have been making some visits to the office, catching up with lots of friends and watching a fair bit of rugby including a trip to Italy to watch Bristol (Samantha’s birthday treat!) and then the England game in Scotland. We had a lot of fun in Edinburgh despite the unbelievable weather brought on by the storm. Ciara started to really kick off just in time for kickoff, she managed to disable the Trams back into Edinburgh after the game, delaying our beers and curry, then she got my flight home cancelled on Sunday so I had an extra day and got to see the snow on Monday!
During the game itself we were dry (on the outside anyway) and despite the obvious havoc caused by the wind the game had its moments; the highlight being the winning England try being scored by a Bristolian. Our hero Ellis Genge is from one of the tougher parts of town and he has a typically Bristolian turn of phrase which he used to great effect in the post match interview.
“A lot of sausages just say what comes into their head,” said Genge of head coach Eddie Jones’ critics.
Surprisingly Ellis got some stick for having a beer in his hand for the interview while its obviously completely OK for F1 drivers to swig and mostly waste champagne on the podium – and their sport is driving!
As Martin Johnson said while mocking the mockers ‘rugby player drinks beer, shocker!’
Thankfully the supporters are expected to drink beer so here we are before the game doing what you do, many thanks to Phil for arranging.
I am really looking forward to seeing some more of you shortly and will obviously let you all know how it all goes.
All the very best until next time.
Scott.
Scotland

Update XIX – Results.

Today we had an important meeting with my consultant to review the test results to to see how successful my transplant has been.

It is quite complex but in summary the good news is that I am technically in remission so the transplant has been very successful. What a great Christmas present.

There are several ways to measure if there is any residual disease and my bone biopsy did not detect any abnormality but on some other measures there is still some low level residual disease which they categorise as MRD (minimal residual disease).

After some discussion we decided that I should have 2 more cycles (2 months) of chemotherapy – described as ‘consolidation therapy’ before moving on to low level maintenance therapy. So I will start this in January with a cocktail of 4 drugs weekly, essentially to try to improve the quality of the remission by reducing or eliminating the MRD. The better the remission achieved the longer it is likely to last so its worth going the extra mile to try and achieve this.

I hope that makes sense; Myeloma is a complicated cancer and equally complex to measure, particularly when the residual amounts are small, for example one of the tests called ‘flow cytometry’ identified 271 abnormal cells out of over 1.3 million counted – glad I am not doing the counting!

The last update included the caption competition for the following picture; fierce competition ensued as the entries flooded in giving the judging panel (me) a tough choice between all 3 of them. One was ruled out for being unprintable, sorry Hugh, so it was down to 2 and the winner is…

‘Scott’s depiction of man carrying an invisible box wins the Marcel Marceau prize for mime‘ – well done Neil!

me

So that’s it for what is probably the last blog of the year from me. As a family we are looking forward to Christmas and the New Year very much – with less trepidation than last year.

2019 has been quite a roller-coaster to say the least but it has been made so much easier by the love and support from you all. Thank you so much and we wish you all a wonderful Christmas and New Year.

Scott.

Update XVIII – One year on.

It seems extraordinary to me but it is over a year now since I was diagnosed with Myeloma on the 19th October 2018, my first chemotherapy session was on Nov 5th 2018, these are dates and experiences that I am unlikely to forget. The diagnosis was delivered by one of the consultants at KCH London where I had all of the tests; despite the fact that it was not a complete surprise and that the consultant was extremely sensitive the harsh reality of the news still felt like being pushed under a bus. In contrast my first day of treatment felt cathartic and empowering; the fightback had begun.

Over the 12 months I have completed 9 cycles of chemotherapy and most recently the stem cell transplant; not to mention countless tests and scans for just about everything. The good news is that apart from the Myeloma and the side effects of the treatment I am a picture of health!

So it now seems like a good time to reflect, try and put everything in perspective, and sum up where we are now.

Progress: There have been ups and downs but in general I have responded well to the treatment; my key cancer markers have all fallen significantly during the year and I await the first set of test results after the transplant. It is now about 80 days since the transplant and in a few more weeks my bone marrow will have ‘settled down’ sufficiently to be retested with a biopsy. Myeloma starts in the plasma cells within the bone marrow so this will be the acid test of how successful the transplant has been and will determine what the next steps will be. If the residual disease is minimal then I will probably receive maintenance therapy on an ongoing basis to keep on top of it but if the transplant has worked less well then ‘consolidation therapy’ will be recommended to try and improve the overall response – more chemotherapy, probably with some different drugs in the new year. So these test results in mid December are pretty important and we will be getting increasingly nervous nearer the time.

Physical status: A year ago I felt fit and well, while the Myeloma was extremely active it had not reached the stage of causing any symptoms, so I faced the unusual situation of knowing that the treatment would most likely cause me more problems than I had experienced with the disease. While there is no doubt that the treatment regime has taken it’s toll I have been fortunate that my system has tolerated most of the drugs pretty well. The only major side effect that remains a problem is the nerve damage caused by one of the first chemo drugs, known as peripheral neuropathy my feet and hands still have numbness and tingling with some muscle weakness. This should improve over time and I am learning to manage it better but it’s a big frustration to say the least.

Aside from this the recovery process from my transplant is going well and I am feeling stronger all the time – my walks are up to about an hour long now and the exercise bike gets plenty of use. I have been very careful to avoid crowded places such as public transport and the office as my immune system is still recovering but the consultant has now advised that I am strong enough to get out a bit more and we are hoping to take a holiday in December. The hair loss and weight loss have changed my appearance somewhat, it’s been one of the most effective slimming regime’s that I have ever tried, I am now about 80kg compared to 86kg a year ago. At the risk of ‘oversharing’ on the hair front I was a little surprised to lose most of my hair from everywhere, not just my head, with the exception of my eyebrows. I look a little bit like an Action man (minus some of the action), at least I am saving money on barbers and waxing!

Mental status: Importantly I have managed to maintain a positive attitude at least most of the time. As I mentioned in one of the early blogs the key to this for me is knowledge about the disease and treatment and building a sense of control over the situation. Our relationship with the consultants has been excellent, they have been very positive all along and this has helped enormously. However for me personally I must say that the most important factor has been the influence of family and friends giving me so much support and so much to look forward to and work towards. Being in this predicament makes me realise how much I still want to achieve and experience in life and I remain determined to do just that. I have also learnt that despite some very difficult times over the past year it is still possible to enjoy life; if anything the good moments can be treasured even more with a heightened appreciation for the value of experiences and friendships.

The way I feel about my illness has shifted a little over the past 12 months; as time passes and acceptance grows it feels much less like a win/lose battle and more a case of how best to contain and control the disease. As things stand there is still no cure for Myeloma and even if I achieve a very good remission it will return at some point in the future. So the Black dog needs domesticating and controlling rather than kicking out altogether, at least for now anyway, the billions of research dollars being spent to find a cure and new therapies like CAR-T* promise a much better future for Myeloma patients. On the subject of the Black dog it has been interesting to learn that other Myeloma patients often have nicknames for the disease that I have picked up from some of the social media groups – the ‘bad-boy’, the ‘beast’ and the ‘bitch’ are good examples, some are less subtle.

*Its complicated but I will try and write about it in a future blog!

Progress in understanding Myeloma and 9/11 Firefighters: The research billions are not just yielding some promising new drugs but also producing interesting theories about some of the causes and triggers for Myeloma to progress. Genetic research is starting to help in terms of identifying risk factors and also to raise the prospect of more individually tailored treatments and other studies seem to suggest that environmental factors could increase the risks of developing this and other cancers. One study that I found particularly interesting looked at the incidence of MGUS (the benign precursor to Myeloma) in 9/11 firefighters who were exposed to high levels of toxins and diesel fumes during the 10 month rescue and recovery work in 2001. Blood tests show that the sample of 781 white males firefighters had almost double the chance of having MGUS compared to the control sample of firefighters who were not involved – 7.6% vs. 4.3%. The group of 9/11 firefighters also showed a higher incidence of other cancers.

This is fascinating but also raises another question for me; while it has not been definitively proven there also seems to be a probable link between stress and Myeloma (and other cancers). These same 9/11 firefighters were clearly exposed to extreme levels of stress and many suffered from Post Traumatic Stress Disorder. The International Myeloma Foundation puts forward an interesting view on stress and Myeloma commenting that ‘Stress can be a very destructive force when it comes to myeloma. Stress really disrupts the immune system and myeloma is a cancer of the immune system.’ It seems to me that it is very difficult to differentiate between these potential causes and their effects but studies such as this can only build knowledge and offer great hope for those of us with the disease.

9/11 Firefighters at Greater Risk of Multiple Myeloma Precursor, Study Reports

Rugby: On a lighter note the Rugby World Cup was a great distraction while I was recovering from my transplant and I watched nearly every game; some more than once. The final was obviously a big disappointment for England, particularly after the amazing win against NZ in the semi, Fiji also let me down so apologies for the awful tip! Thankfully the early season results for the Bristol Bears have been tremendous including a thrashing of local rivals Bath and a narrow win away at Exeter. It’s early days but we are top of the Premiership and have won both of the European Challenge Cup games; Up the Bears!

Most appropriate quote of the year: ‘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.

Most appropriate book of the year:

Black Dog

As mentioned above my test results in December will be important in determining the next steps for treatment in the new year and I will update with the outcome in the next pre-Christmas edition of the blog. In the meantime I will leave you with a caption competition to think about…..

me

Scott.

Update XVII – Well done Lily.

Congratulations to our daughter Lily for completing the Birmingham half marathon today raising over £1,600 so far for Myeloma UK. The race was held despite some grim weather which resulted in the course being shortened by a mile due to flooding; couldn’t they just swim that bit? Lily was hoping for a time of under 2 hours and was on track for this finishing in 1.46 for the slightly reduced 12.1 miles. Many, many thanks for all of the very generous sponsorship, this is a charity that does fantastic work and I know your donations will make a real difference.

Damp, tired but happy…

Lily

http://www.justgiving.com/fundraising/lily-meech

A quick update on me…

Today is T+40 days since the transplant and my recovery seems to be on track; I am eating well and feeling a little stronger day by day with no complications or infections so  far apart from some itchy dry skin which is a common issue apparently. After 100 days my immune system is expected to be in better shape but until then I have to be careful, avoiding busy places and unpasteurised cheese, annoying!

Thanks again from us all.

Scott

 

Update XVI – Home comforts.

I have been at home now for about 10 days and it’s just over 4 weeks since my transplant (T+29). My blood counts continue to recover but my bone marrow is still fragile and I have the immune system of a baby so I need to be extremely careful not to catch any bugs; I certainly won’t be going on the tube anytime soon. Although I am still very weak I am trying to do a little more every day, enjoying home comforts, good food and starting to sleep better. 

Apart from not being able to do much my main frustration at this time is not knowing how well the transplant has worked. It will be a few months yet until my bone marrow has settled down sufficiently for me to have a biopsy and scan to find out if the residual cancer cells have been reduced or eliminated. This will determine if I need some further treatment or hopefully move on to maintenance therapy. So it feels like a bit of a news vacuum for a while and I will be concentrating on keeping healthy and regaining some strength – Eat, Sleep, Exercise, Rest, Repeat.

The Rugby World Cup is off to a superb start and I have managed  to watch most of the games with Japan’s win over Ireland probably the highlight so far for drama and atmosphere. Unfortunately my tips for success have already been next to useless with Fiji a particular disappointment after flattering to deceive in the first half of the game against Australia when they were in the lead. No more predictions from me other than to say that there is a lot of great rugby yet to come.

Our daughter Lily has decided to run a half-marathon to raise money for Myeloma UK who do a fantastic job supporting patients and funding research and trials. Lily will be running the Great Birmingham Run on the 13th of October and has been training hard, if anyone can spare a few quid for this great charity we would be extremely grateful.

http://www.justgiving.com/fundraising/lily-meech

I’m certainly not missing my hospital bed but the fantastic view was a great distraction at times; particularly during the evening when the moon seemed to be stuck on top of the Shard…

DSC_3524 (2)

@beachymeech

I may not write so frequently over the next few months; with luck I will be spending my time quietly recovering and taking it easy. Thanks for reading and for all of the support over the past few months in particular.

Scott.

 

Update XV – Transplant day + 15.

With the help of various infusions my blood counts have continued to improve sharply since my last post. Most importantly this shows that the procedure has worked and the stem cells that were reintroduced 15 days ago have now grafted back into my bone marrow allowing my immune system to start rebuilding. The recovery process now takes around 100 days so I will need to be very careful, particularly when I get home, which could be tomorrow or Friday.

The thought of getting back home is obviously exciting but also quite emotional and a little daunting in the sense that the superb medical support I have had will not be there. Anyway I will hopefully achieve my target of being home for the start of the Rugby World Cup which will be a great distraction and I will have the wonderful support of Samantha and our (grownup) children who have all been amazing over the past few weeks.

As I have started to feel better over the past few days I have started to think about the next steps a little more. I will be coming back to the hospital every week for a while for tests and then at some point I will start maintenance therapy which is intended to extend my remission time. It is frustrating that it will take 3 months until we know how well the treatment has worked but that’s the way it is.

Here I am sporting my new look, a sort of Yoda and Cone-head hybrid…

cone

When my hair started to fall out and clog the shower my son Henry shaved the rest off for me with some clippers on the no.1 setting. This felt immediately more comfortable but the new look took a little while to get used to; in fact during the night when I got up for a pee I had forgotten all about it so the skinhead nutter in the mirror made me jump out of my skin.

Finally my favourite subject at the moment, the Rugby World Cup, some thoughts:

Overall I think this tournament is one of the most open ever, of course the All Blacks are favourites, quite rightly but the chasing pack are closer than usual. Quite a few teams have beaten them over the past year (Australia, SA, Ireland) so there are more banana skins out there than usual to navigate. I still won’t be betting against NZ but the other finalist could be any of the top six or seven who look pretty close to me.

Looking at the odds for each team nothing really stands out until you get down to Australia who look good value to me; they are 6th favourites at 18-1. This is despite the fact that they have the 2nd best record in the tournament and have won it twice; the same as SA who are 4-1 joint second favourites with England. Oh and they are last team to beat the All Blacks.

If you are looking for a real surprise then the hosts Japan could exceed expectations but the side that intrigue me are Fiji. We all love watching them play sevens where they are world-beaters but their record in the 15’s is mixed at best despite some memorable wins; most recently against France last November (in France). They don’t play a lot of 15 aside so form is hard to judge but they now have a serious looking Kiwi coaching team. If they can add conditioning and set piece competence to a team with electric try-scorers in the backs then they could be in business. 10 to 1 to get out of the group stages (at the expense of Wales?) looks a fun bet. Go, go, go the Flying Fijians!

No comments on England’s overall chances: I don’t want to Jinx them!

Thanks for reading and helping me through this difficult time, genuinely, it has made a real difference. I have a long way to go still but at least it feels like Becher’s Brook is in the rear view mirror.

Scott.

 

Update XV – Transplant day + 11.

My last post was a week ago and things has been more difficult since then, exactly as we were led to expect. My blood counts continued to fall so that by Monday my immune system hit rock bottom and stayed there for most of the week. Only over the last few day has there been some very small improvement. I have also been feeling a little better myself since yesterday and have been able to eat a little bit more each day.

Neutrophils make up about 60% of our white blood cells, they are fast moving, racing to the site of any trauma like storm-troopers. When we get swellings next to a scratch it’s the neutrophils gathering to fight any incoming bacterial infection. Apart from my platelets, most of my other blood cells have held up quite well, but the chemotherapy has a particularly bad effect on neutrophils. As expected, they hit zero on Monday compromising my immune system and making me very vulnerable to infection. Almost everyone receiving this treatment gets an infection and with my temperature up a bit early in the week I have been on antibiotics as a precaution but there are no signs of anything serious developing yet. The other side effects of the chemo and the low blood counts continue – I have been very tired this week with occasional sickness, a sore mouth, headaches, no appetite etc, all the things you would expect. I have had several infusions of platelets and a blood transfusion this morning as my haemoglobin levels have been a bit borderline. The promising news is that after several days at zero, my neutrophils have shown the first signs of returning with a reading today of 0.05. Although this doesn’t seem much compared to a normal level of about 5, its good to know they’re heading the right way.

Finally my hair has begun to fall out at quite a pace, almost blocking the shower this morning. It looked like small rodents had been fighting in my bed overnight.

So its been a long week but it looks like I may have just turned the corner, albeit with a big improvement needed before I can expect to be allowed home. The doctors and nurses here have been amazing this week with the care I have needed becoming quite intensive. Many thanks for all of the support. I will write again, next week probably.

Doc

Scott