Mike Baker's Cancer Blog
This blog was listed at Number 5 in Cision's Top 10 Cancer Blogs in the UK, 2011.
Well, the bike is stowed on the new super-duper roof-carrier, the waterproofs are packed, the gears and chain have been de-mucked and lubed, the maps checked and the panniers are nearly packed ... I leave tomorrow (early) for North Wales and the pedalling starts on Sunday at 1300 from Holyhead harbour.
There's no going back now. I'm not in the best shape. The past 6 weeks have been a disaster from the preparation point of view and I continue to feel weak most of the time. I'm just hoping the occasional bursts of energy I get will coincide with the uphill bits. However I can reassure all you kind well-wishers that I will not over-do it.
This week I've had a CT scan and (today) a Bone Scan. The latter involved an injection of radioactive liquid which had to be allowed to seep into my bones for 3 hours. Then it was back to the hospital to lie, absolutely still, inside the scanner. I listened to a relaxation tape and even succeeded in dropping off. I then had to drink pints and pints (of water, not beer, sadly) to flush out the radioactive material.
I'm not in a rush to…
20 Jul 2012 17 comments - read and reply.
I can hardly believe there are only 4 days to go until I join The Ride in Holyhead.
I'll be waiting for the others to come in on the ferry from Dublin and we should be setting off from the harbour at about 12.30 - 13.00. Fingers crossed for some better weather.
Meanwhile the core team of The Ride are making determined progress. It hasn't been easy: bike mishaps, some terrible weather, big hills, strong headwinds to be overcome since they set off from John O'Groats a few days ago.
Read The Ride Blog - it's quite amazing
Their daily blog is a fantastic read. Their bravery, humour, guts and sheer sense of purpose is humbling and more than matches the wonderful exploits on The Tour De France (which I'm loving). So please have a look - and do add some comments (it really helps motivate them through the hard patches) - at: www.theride.org.uk/ Reka - the lead rider - is doing the entire 800 mile route sandwiched between two sessions of chemotherapy. Bradley Wiggins, eat your heart out! She deserves an Olympic medal when they reach London.
Meanwhile, I have to admit my preparation is slow. I've been…
18 Jul 2012 17 comments - read and reply.
It's been quite a fortnight: a proud parental moment, a return to cycling, a shock on the health front, and a nice moment when I formally received my Lung Cancer Journalism Award.
I'll run quickly through these in order (sometimes it's nice to be tidy-minded!). Our younger daughter Rachel has completed her BA Hons in Graphic Design (degree result next week and it looks like she's heading for a good one) and we went to her final degree show. I was impressed, not just with her work but with so much talented and innovative design work from her fellow students at Kingston University. That was followed by the 'London Show' in Brick Lane, which Rachel was curating. It was exhausting work for her but it was a great way to round off her 4 years at Kingston.
This is part of Rachel's display at the show. I particularly like the grainy, black-and white photographs of old spoons, which are a way of reflecting - and characterising - family history through familar, everyday objects seen in a new light (see photo above).
It's now just the small matter of finding a good start to her career. She's already had some very…
15 Jul 2012 33 comments - read and reply.
(Photo: Yes these rough planks of English oak will become a garden bench....eventually)
It's been a tough month but I think I'm beginning to get back on track. From talking to other cancer patients, I realise these ups and downs are to be expected and you just have to hold your nerve and not assume that the feeling of weakness or illness is because the underlying cancer has got worse. It can just be something else, as indeed it turned out to be.
It began with the previously mentioned Duke of Edinburgh experience when I got an infection after getting a chill at our village Jubilee event. This got worse and after starting on one course of antibiotics I had to go onto another, stronger, one. It's now cleared up but it has left me very weak and breathless. It has also - frustratingly - been a disaster for the key preparation period for my cancer charity bike ride, which is now only just over two weeks off.
I've also become very conscious of my weight loss. Despite relaxing my anti-cancer diet a little, I still cannot get above 9 stone (126lbs). But I don't want to go onto the…
04 Jul 2012 15 comments - read and reply.
I was delighted - and very surprised - to be told that I have been awarded the 2012 Lung Cancer Journalist of the Year Award for the blog on these pages. As an education specialist, I had hardly expected to receive an award for health journalism.
The award comes from the UK members of the Global Lung Cancer Coalition, an international group of patient organisations dedicated to supporting lung cancer patients. I was nominated by the Roy Castle Lung Cancer Foundation and the National Lung Cancer Forum for Nurses. So, a big thank you to both of them.
The award was launched in 2006 to recognise excellence in lung cancer reporting. Last year's winner was the lively feature writer, Cassandra Jardine, of The Daily Telegraph. Very sadly, Cassandra died of lung cancer just last month at the young age of 57. Her obituary is here.
Stigma of lung cancer
The award was motivated in part by the reluctance of the media to write about the illness, perhaps because of the stigma that attaches to smoking. In fact, many lung cancer patients - like myself - have never smoked. But, whether or not people…
21 Jun 2012 21 comments - read and reply.
I have been doing a Duke of Edinburgh. No, not a poor impression of his renowned ability to be blunt and upset people ... but rather copying his recent health problems. I blame the Jubilee. This is why it's been so long since my last blog update. Here's what happened.
We were in Devon for the Queen's Jubilee weekend. Like most of Britain, it was cold and wet much of the time. But we were lucky as the two big events we were involved in were on the Bank Holiday Monday when it did at least stay dry and even witnessed a rare bit of sunshine. However, it remained unseasonally chilly. In the afternoon, we had a wonderful 'street party' with our neighbours. More accurately, it was a 'farmyard party', as we all live in converted barns (and the old farmhouse) surrounding the farmyard. It was a terrific community occasion: china tea service, table decorations, bunting, home-made sausages, cucumber sandwiches, and an abundance of scones and cakes. With outlying neighbours and extended family there was around 30 of us, making a lovely community get-together.
Then, in the evening, it was the main village event: the lighting of the beacon, fireworks,…
18 Jun 2012 16 comments - read and reply.
I have been reading a lot of books on cancer over the past few months and though it might be worth sharing some of them on this blog.This is the first of what I hope to be several book reviews on cancer topics. I should just add that these reviews are merely my personal take on books I have found useful or interesting, and are not intended as an endorsement (or otherwise) of the treatments proposed in them.
Review of Why Did the Cancer Disappear? by Marion Dias
This is a brave book written by a brave lady. In 2006, Marion Dias was diagnosed with cancer of the endometrium – the layer of cells that line the womb. She was advised to begin urgent treatment. But Marion refused to accept the diagnosis and, after doing some research, concluded that conventional cancer treatments might as well be called ‘cut poison, burn and torture’. She decided they were not for her.
Although she had trained as a nurse (before retraining as an accountant), Marion had already turned to complementary therapy before…
07 Jun 2012 55 comments - read and reply.
I think this is a landmark -- I've decided to stop counting the weeks that have elapsed since my lung cancer diagnosis. If you've been reading this blog since the start (in which case you deserve a medal for amazing perseverance and patience) you'll know that I took comfort in counting the days, then the weeks, and finally the months that I had survived. It was a helpful way of coping with the enormous task that lay ahead. I liked to think in terms of building a slow, safe steady century (Geoffrey Boycott-style*) of days, then weeks.
Now 60 weeks on (and that really is the last time I will be counting) I no longer feel the need for this psychological support mechanism. I'll stick with just counting the big landmarks: 18 months, 2 years etc. I daresay Boycott would regard the idea of stopping counting at 60 as insane.
Besides, I had another landmark in mind from the outset, although I didn't want to share it too widely in case it seemed too optimistic. It was to stay alive and well enough to go to the London 2012 Olympics...to watch, not compete, let's be realistic! At that point…
29 May 2012 12 comments - read and reply.
It's been far too long since my last blog – sorry for the lack of communication (I know some of you have told me you get worried when I don’t post anything). It's just been so busy, I'm not sure where to start. I left you last with my tale of being stranded with a puncture in the Culbin Forest in Morayshire. Happily that all ended well and we had a great week staying in the beautiful former fishing village of Findhorn on the banks of the Moray Firth. Part of the reason for going there was to visit a healer with a long track record in dealing with cancer patients. Although generally sceptical of faith healing, I found it a very positive experience and I returned from Scotland feeling upbeat.
I can't pretend, though, that it has always stayed that way. The cough (the main symptom of the lung cancer) won't go away and sometimes feels worse. In the mornings I can sound like a 100 a day smoker. The regime of popping huge numbers of supplements and pancreatic enzymes, juicing box-loads of vegetables, and surviving on…
23 May 2012 446 comments - read and reply.
My thanks to the US-based health website, TrialX, for naming this blog in their list of 'top 5 bloggers on lung cancer'.
You can read what they had to say here and you can also follow their links to the other 4 blogs listed, which as far as I can make out are all wruitten by Americans. I've looked at most of them (one was hard tro access) and was impressed, especially by this one from Linnea Duff, called 'Outliving Cancer'. She was diagnosed with lung cancer 6 years ago and, through a variety of treatments, is still living a full life. Like me, she was not a smoker.
I liked her justification for writing her blog and repeat it here:
'Why a blog? Because of the deadly toll of lung cancer, survivors who can stand up and talk about our experience are few. Survivors with stage IV lung cancer are rarer still. I have been given the gift of more time, and I would like to take this opportunity to educate and to offer insight into our experience. It is also my desire to instill hope in fellow sufferers of this awful disease. Do not…
02 May 2012 86 comments - read and reply.
I'm beginning to realise that preparation for my big charity bike ride is not always going to go smoothly.
A week's holiday on the coast of the Moray Firth, near Inverness, seemed a good chance to put in some training on new roads and amid lovely scenery. So the bike was squeezed in with all the other vast range of baggage I now seem to have to take with me (the trays of wheatgrass for juicing, the pots of capsules and supplements, the juicer for making vegetable drinks, the liquidiser for making the Budwig Mix, and all the gluten- and dairy-free food that you need to provide yourself when staying at hotels).
We stopped for a couple of nights in Grasmere in the Lake District. Arriving after a rainy day to a lovely bright evening, we immediately set out for a walk to Easedale Tarn, which was one of Wordsworth's favourite walks (picture shows Chrissy on the walk). The next day I woke with a pulled muscle in my hip and was almost unable to move! Not a good start to the training week.
So instead of a day walking, the next day I hobbled around William…
24 Apr 2012 23 comments - read and reply.
So, I made it. Despite the gloomy prognosis when my lung cancer was diagnosed in April 2011, I have now passed the one year survival landmark. If you recall, when I started this blog I was originally counting in just days, then weeks and eventually months. So to have made it to a year is brilliant.
I think I can say I feel stronger than I did a year ago - certainly better than when I was in the middle of the chemotherapy. But I still haven't shaken off the cough (although I think it is better than it was) and I need to regain strength, weight and stamina. None of my trousers fit and I am the original 9 stone weakling. I continue to rely on complementary methods but am continuing to see my oncologist regularly to keep my case under review in case there is something that conventional medicine can offer.
I've had a couple of nice celebrations of my first anniversary. Chrissy and I went out to a meal on a beautiful, sunny day in Sidmouth at a lovely little restaurant on the seafront. And, yes, I did rebel a little....and actually ate my first piece of…
18 Apr 2012 19 comments - read and reply.
I've just watched Philip Gould's very moving video of his last days dying from cancer. The 8 minute film 'When I Die' is beautifully shot and edited and contains wise and reassuring words from the former peer and pollster and adviser to Tony Blair. Do watch it - it's not at all depressing. It's here on YouTube.
In the film, Gould shares his thoughts and insights as he confronts his impending death from oesophageal cancer. He asks: How do we approach death whilst embracing life? How can we change the conversation around death and palliative care for the terminally ill?
He believed that for the terminally ill and those close to them, there can be moments of joy, resolution and inspiration just as intense as those of fear, discomfort and sadness.
Filmed during the last 2 weeks of Philip's life, this intimate portrait reveals his quest to find purpose and meaning in what he called "The Death Zone". He had been diagnosed with cancer of the oesophagus in 2008 and was given three months to live in the summer of 2011. He died in November 2011.
Philip Gould's book, "When I Die: Lessons…
18 Apr 2012 3 comments - read and reply.
When I began this cancer blog I was counting each day that passed from my diagnosis. Then the days became weeks and eventually the milestones came in months. I remember likening it to a cricketer building his innings. Achieving 100 days, then 100 weeks - and if it wasn't too hopelessly optimistic - 100 months was the aim (I should add that centuries were way beyond me in my rather forlorn cricket career, where I my best ever score was a pitiful 37...only just good enough to get me into the current English team).
And now the first anniversary of my lung cancer diagnosis is just one week away. It has crept up on me which is, I think, an indication of how my thinking has changed: I'm no longer counting the days of survival. I have gone well beyond what average statistics suggested for my diagnosis and I am now happy to completely disregard those averages....it is my cancer, thank you, and I'll deal with it without help or hindrance from statistics!
I am feeling pretty good overall, although inevitably the days do vary a lot. The cough has not gone away but is certainly no worse and may even…
01 Apr 2012 13 comments - read and reply.
A friend's husband was recently diagnosed with Mesothelioma, which has some similarities to lung cancer. Because of this I agreed to accept a guest blog from a US organisation that campaigns for Mesothelioma patients. The organisation is, I was surprised to find, a for-profit operation funded by a law firm that specialises in asbestos litigation. However, the information here is factual and helpful.
The Rare Cancer: Mesothelioma
Although the United Kingdom has one of the highest rates of mesothelioma in the world, the cancer is still considered a rare disease, accounting for around 2,250 deaths in Britain in 2008.
Statistically, 62.3 males - and 11.6 females - out of every million were diagnosed with mesothelioma in the UK in 2008. This rate had increased from 20.2 males and 3.3 females per million in 1984.
What exactly is Mesothelioma?
Despite its increasing incidence, few people know what mesothelioma really is. Contrary to popular belief, it is not a type of lung cancer.
Instead, mesothelioma is actually an aggressive cancer that grows in the lining…
21 Mar 2012 6 comments - read and reply.
(Photo credit: Gary Eason www.garyeasonphotography.com/)
I saw the oncologist yesterday. No big news, of course, as I have for now rejected having any more CT scans or drug treatments. But he was very pleased with how well I appear to be doing and was very encouraging about the approach I am taking. It is amazing that I am now approaching the 1st anniversary of my diagnosis of terminal lung cancer. A year ago, even looking this far ahead seemed optimistic in view of the general mortality statistics.
I am continuing with my intensive diet, exercise and supplements regime. I won't pretend it is easy. Everything takes so much longer to do when you have constantly to juice vegetables, prepare raw food, count out and swallow your supplements, take vast quantities of pancreatic enzymes and undertake the many other daily 'treatments' (enemas, bicarbonate soda baths etc) that are recommended. But, of course, it is worth it. And, I must add, I couldn't do it without the support of my wonderful wife, Chrissy.
I try to keep this 'blog' as upbeat as possible but I cannot deny that there have been plenty of down moments. In a recent one, I reluctantly…
13 Mar 2012 5 comments - read and reply.
The raw food diet is still going strong, I'm still swallowing the supplements and today I felt well enough to tackle 20 miles on the bicycle in the steep hills of the Blackdowns (I climbed a total of over 2,000 feet which I thought was not bad...but of course freewheeled down the same amount!).
It was an amazingly sunny day, blue skies, windless, lambs in the field and snowdrops in the hedgerows. Spring seems to have arrived, albeit rather early. (The picture above is a bit of a cheat, as it as actually taken last April, but this really was how it looked today.)
Meanwhile I am excited about joining The Ride, a marathon bike event being organised to draw attention to the lack of good advice on nutrition and exercise for people with a cancer diagnosis. It's the brilliant idea of Reka Pataky, who herself has cancer.
As she explains on the website (please visit and leave messages of support) the main idea of the 1,000 mile bike ride - visiting Edinburgh, Belfast, Dublin, Cardiff and London - is to have fun, to preserve the sanity of the riders who are also coping with cancer, and to show…
26 Feb 2012 4 comments - read and reply.
Sorry for the extended silence on the blog front. I seem to have been fully occupied just trying to get on top of my new raw-food-and-supplements regime (although I did find the space to finish my table - see above - and to start on a new furniture-making project...more on that later).
As reported on the last entry, I started out on the new approach - as recommended by Xandria Williams - almost a month ago. I won't pretend it's been easy -- nor particularly cheap. However I am feeling pretty well on it and I do feel very optimistic that it will work. So much so that - with I'm happy to say the blessing of my oncologist - I have decided not to go for the second-line of drug treatment that was on offer. On researching this, I found that it only prolonged survival rates by a few months on average anyway. So, for now, I prefer to keep off the drugs and put every effort into the complementary and natural approach.
So I have managed to keep up with the 80% raw food diet. We bought a new, super-duper Korean juicer which does a brilliant, if rather…
10 Feb 2012 17 comments - read and reply.
Well a lot has happened since my last post. I've now started a new alternative medicine regime and - so far - it feels good. I am going to give it an extended try so I have decided that, for now, I will not be opting for either the suggested chemotherapy programme or the Tarceva tablets.
If you read the last post, you will have seen my mention of Xandria Williams' book, Cancer Concerns. Well, I was so impressed by the rational, scientific argument behind her approach that I decided to see her and to follow her recommended treatment. At the core of this lies some tests to establish more about my particular situation. So blood and urine samples are, even now, winging their way to Florida for a CA Profile test to establish more about the nature and the activity levels of my cancer cells. I have also taken an on-line test to establish my metabolic type. This will help determine the exact nature of the treatment programme.
However I have already started on the core of the treatment, which involves:
- cutting out glucose in my diet as cancer cells need it for energy and are…
22 Jan 2012 13 comments - read and reply.
I'm sorry to have to start 2012 with a a bit of a down-beat note but I had slightly disappointing news when I saw my oncologist today. The latest CT scan shows a small deterioration in the tumours. It's not much but is discernible.
It's a bit if a surprise as I have been feeling well and have been out cycling and walking regularly and have had a good rest from work. But that's one of the odd aspects of cancer - you don't always feel unwell with it.
However, there are also some positive aspects. Firstly, my consultant is surprised and pleased at how well I am. Second, the growth of the tumours is very slow and, overall, they are still smaller than before the chemotherapy. I also take some comfort from the fact that the CT scan doesn't prove that the tumours are growing now, only that here has been growth since the last scan which was 4 months ago. It could be that the growth happened some time back and has now been arrested (of course, it could equally be that it has only just started....but I instinctively feel that I have grown stronger after the Christmas/ New…
09 Jan 2012 125 comments - read and reply.