Sep 26 2014

When I am in charge …

… these will be seven of the things that I will change (*).

Now, I realise that I’m hardly likely to get elected to high office on the basis of this manifesto but some things really do need fixing. If I have to scream and rant to get my way, trashing my Liberal credentials in the process, then so be it.

Education

Any university continuing to give out honorary degrees and doctorates to celebrities, politicians, business leaders and the like will have their charter revoked immediately. Studying for a degree or higher qualification is bloody hard work (I should know!) and honorary degrees devalue the efforts of all real students.

Unpaid Internships

These are completely unacceptable and stifle social mobility. Volunteering is fine, but those taking part in such activities must be genuine volunteers, free to stop or vary their commitment at any point that suits them, rather than the kind of ‘volunteer’ intern sought by the Sussex Partnership NHS Foundation Trust a couple of years ago.

Software Developers

Continuing to use a floppy disc icon to mean ‘save’ is almost as archaic as using a cassette tape icon for the same function. From the moment I come to power, all software developers will have 24 hours to find, agree on and implement something a little more 21st century. Now that’s what I’d call agile …

Floppy disc iconThe National Lottery

Has always been a tax on the poor. I’m not going to abolish the lottery per se as it’s still relatively popular and I have my eyes on a second (and perhaps third) term in power. Instead, I’m going to turn the lottery into something indistinguishable from premium bonds where the original stake is never lost. Good causes that might otherwise lose out through the lack of lottery funding will be able to apply for the same funds raised from something a little more progressive – let’s call it taxation.

Ensuring that everyone understands that demonstrating a correlation is not the same as demonstrating cause and effect

Showing that the amount of cheese eaten correlates with golf course revenues doesn’t mean that excessive cheese eating causes higher golf course revenues, or vice-versa. Well durr. More seriously though, mistaking correlations for cause and effect might be behind the increases seen in potentially serious, but preventable diseases such as measles.

Prime Minister’s Questions

I’m going to set up an independent panel to assess each answer the Prime Minister (who, of course, will be reporting to me) gives at PMQs. If they judge that a question hasn’t been answered, the PM will have another chance to answer the same question in a new ritual I’ve decided to call Prime Minister’s Detention. This will take place in an empty Commons chamber after all of the other MPs have returned home on a Friday afternoon. If the panel still regards their answer as unsatisfactory, they will have the ability to fine, imprison or force a by-election in their constituency. If this policy is successful, it will be extended to cover all other ministers and eventually, any politician who appears on the Today programme or Newsnight.

Daily Mail Readers

As a good Liberal, I believe that the Daily Mail should be free to publish whatever distortions it wants to, provided it stays within the letter of the law of course. The real problem is the people who choose to read it. Without its readers, it would soon disappear off the face of the planet. I’m therefore going to tackle the root cause and introduce a tax of a few pence per copy sold that will go straight to charities supporting things that the average Daily Mail reader would loathe. I’m very hopeful that the emotional conflict caused by such a strategy will wean these readers away to less harmful newspapers, like, errr, … ok, I admit this policy needs a bit of work. And the other six might do as well. Time to get back to the day job …

 

(*) Yes, of course I want world peace etc. etc., but I think there needs to be a little bit of realism in my manifesto. After all, I’m rarely in charge in my own house, so I’m hardly likely to become president of the world. Many thanks to Tattooed Mummy for providing the inspiration for this article rant.

 

Sep 24 2014

A change of speed?

I went back to hospital yesterday for the results of my PET/CT scan, bone marrow biopsy and MUGA scan, expecting them to be a simple ‘box ticking’ exercise to enable me to start chemotherapy this week. Well, that’s what I’d been told to expect. I’d cleared my desk at work and handed over everything that I was working on to colleagues, had received confirmation of the postponement of my MSc for a year and talked to the family about what the next few months were likely to bring. Everything in my life was as neat and tidy as it ever gets!

However, the results of my tests seem to have created some questions about how best to proceed. Part of the bone marrow biopsy wasn’t back, but the part that was suggests that my bone marrow is clear. The PET/CT scan shows tumours in and around my neck and shoulders, as well as in the groin, but no sign of anything in the upper or lower chest. My MUGA scan (heart function) and bloods are normal. I’m also not displaying any of the ‘B’ symptoms, apart from a little fatigue at times. But as I’ve also had my mother’s funeral to cope with in the last few days I suppose some tiredness ought to be expected.

So my treatment plan is now being reviewed and I have to go back next week for more discussions. It seems that waiting until the MCL develops further before being put through chemotherapy is an option, as the evidence seems to show that there is little difference in outcome regardless of the stage the lymphoma is at. This is very different to other cancers of course – where early detection and treatment is vital.

The chemotherapy regime for MCL looks brutal to my untrained eyes. The hospital believes that as I’m fit and (relatively) young, the Nordic Protocol, followed by a stem cell transplant will give me the best chance of long-term remission. The follow-up evidence from the clinical trial in Scandinavia pioneering this treatment, published in 2012, seems encouraging.

A change of speed, a pause, could be worth taking. Because of the toxicity of the treatment, the potential side effects and the length of time it takes, I can only have the treatment once and it is impossible to back out of once started.

I’d mentally prepared myself to starting chemotherapy sooner rather than later and felt pretty confused while all of this was being explained to me yesterday. However, on reflection, if I can grab a few more weeks or months of feeling well before starting out on this path, then it seems obvious that I should take it. But, of course, it may all change again next week once the hospital have had a chance to discuss my case again in the light of the missing part of the bone marrow test result.

 

Sep 16 2014

Testing, testing …

Before I can start my chemotherapy treatment, I’ve been booked in for a number of other tests. As well as a battery of blood tests that I was given last week, I’ve had a bone marrow biopsy today to see if the cancer has spread there and tomorrow I’ll be undergoing a PET scan in Nottingham so that the extent of the lymphoma can be understood and staged. Stage I is the earliest, with stage IV being the most advanced. Due to the way that mantle cell lymphoma hides itself from the body’s immune system, I’ve been told to expect that I’m likely to have progressed to stage III or IV. Not good, but of itself it won’t affect the treatment regime I’ve been put onto.

I also have to go back to Derby for a MUGA scan on Friday – this will help in understanding whether my heart is likely to be up to the job of withstanding the treatment. I’m not expecting any nasty surprises, but then again, I wasn’t expecting a lymphoma diagnosis when I first went to my GP with the lump on the side of my neck in July.

The PET and MUGA scans both require a radioactive compound to be injected into me, so I expect that I might have a green glow around me by the weekend – just like the children on the old “Ready Brek” advertisement used to have.

The bone marrow biopsy certainly lived up to its billing of “uncomfortable”, and I may have let one or two naughty words slip out while it was being performed, for which I apologise to the nurse and doctor who looked after me. I’ll try not to be such a wimp next time around, but I know I make a rotten patient. Still, at least I’ll get a lot of practice over the next few weeks!

 

Sep 14 2014

Hello to the end of the beginning

Lymphoma association booklet - High-grade non-Hodgkin lymphomaThe last time I wrote something on here, I mentioned that I’d had a diagnosis of lymphoma. Since then, I’ve had a more specific diagnosis given to me and a course of treatment outlined. The hospital wants to run a few more tests this week before I start out on treatment in earnest, but all being well, sometime towards the end of this month it really will be the end of the beginning.

For anyone that hasn’t thought too much about lymphoma, (and I was certainly in that category until a few weeks ago), it’s probably worthwhile me summarising what I’ve been told.

 

Lymphomas are cancers that attack the lymphatic system – the network of vessels and nodes that the body uses to clear away waste and infections from the body’s tissues. They’re categorised into two main types – Hodgkin and non-Hodgkin lymphomas, which seems about as sensible as dividing up the animal kingdom into elephants and non-elephants. Mine is a non-Hodgkin lymphoma (nHL).

Within the nHL category, there are low-grade and high-grade lymphomas. Low-grade variants develop slowly, whereas high-grade variants develop rapidly – you often hear the term aggressive used – but interestingly enough these tend to be easier to treat than the low-grade varieties. Lymphomas can also develop in either B cells or T cells – B cells are in the bone marrow, T cells are in the thymus.

The specific type of nHL I’ve been diagnosed with is mantle cell lymphoma (MCL). It’s relatively rare (it accounts for around 5% of all nHLs) and usually occurs in people 15-20 years older than I am. It affects the B cells and is (according to my consultant) ‘on the boundary’ between low and high-grade lymphomas, although the Lymphoma Association classify it as high-grade in their booklet.

This is where it all gets a little scary. The first thing it says about the treatment for MCL is:

 

MCL is difficult to treat successfully. It is not considered curable.

 

… which came as quite a shock, to say the least.

However, the treatment regime I’ve been given – the “Nordic Protocol” – appears to have excellent results, as long-term remission is definitely possible and apparently probable. The research I’ve read so far suggests that something like a 97% response rate to treatment is achieved, with mean survival times being boosted from the 3-5 years that used to be associated with this condition a decade or so ago to something like 7-10 years – and counting. So although it isn’t curable in the strictest sense of the word, I’m very hopeful that something else will get me in 20 to 30 years time, long before MCL manages to!

I never thought I’d become a health blogger. However, I’ve decided that to keep myself sane (or as sane as I ever was), it will be therapeutic (and who knows, maybe of use to others) to document my progress here. As I said to my University of Leicester blog readers, this is not goodbye.

So, hello.

 

Sep 02 2014

My youngest daughter speaks

Her very first blog entry. It’s beautiful. I can’t wait to read more!

 

I particularly enjoy coming up with different scenarios as to how dad could have gotten the scar on his neck. It wasn’t from a biopsy, but in a sword fight with a samurai warrior over my mother’s honour.

 

Aug 20 2014

It’s lymphoma

I got the results of my excision biopsy yesterday morning. I’ve been told that I have a non-Hodgkin lymphoma, but that the prognosis is good with treatment – probably chemotherapy, radiotherapy or a combination of both.

I’m back at work today, feeling rather tired and distracted, but at least my neck is more comfortable now that the stitches have been removed.

Thank you to everyone who has left messages of support in the comments of my last post, on twitter, through facebook, on the ‘phone, by email – and some were delivered in person too! They were all greatly appreciated.

I’m determined to stay positive throughout this experience, so please remind me of that if I ever start to sound too sorry for myself on here or elsewhere.

Time for me to get back to work!

 

Aug 16 2014

Overcoming my fear

 

I must say a word about fear. It is life’s only true opponent. Only fear can defeat life. It is a clever, treacherous adversary, how well I know. It has no decency, respects no law or convention, shows no mercy. It goes for your weakest spot, which it finds with unnerving ease. It begins in your mind, always … so you must fight hard to express it. You must fight hard to shine the light of words upon it. Because if you don’t, if your fear becomes a wordless darkness that you avoid, perhaps even manage to forget, you open yourself to further attacks of fear because you never truly fought the opponent who defeated you.

Yann Martel, Life of Pi

It’s been one heck of a week. On Monday morning I was contacted by the Derby Royal Hospital. They asked me to go in on Tuesday to see my consultant about the results of an MRI, ultrasound and needle biopsy that I’d had the week before. On Wednesday morning I had an operation to remove an enlarged lymph node from my neck so that a full biopsy could be performed. I go back again on Tuesday to have the stitches removed – and to find out what comes next.

I’m certain that talking and writing about what’s happening to me will help to defeat the fear of the unknown that I’m feeling. I shall prepare to face the worst, but carry on positively hoping for the best. It’s the changes that life brings which makes the journey worthwhile above all.

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