Mike Baker's Cancer Blog
This blog was listed at Number 5 in Cision's Top 10 Cancer Blogs in the UK, 2011.
Just a quick catch up as I've had morphine and beef stew up to my eyeballs and will fall asleep soon over this hot little iPad.
My transfer here on Saturday could have been smoother - bit like Clint Dempsey trying to leave Fulham for a bigger club ( as if there's such a thing). When I arrived I was expecting surgery this weekend but was told I wasn't on their list even for Tuesday. 'Where's your drain?' they asked. I haven't got one in, I told them. 'But your notes say you have'. And on it went. It was like starting from scratch and I just wanted to be back at the lovely Marsden or be allowed home.
The wards were 6 bed and very cramped and all in all the business got the better of me and the tears spilled. Well, I've never tried to gain advantage this way but it did at least get me put into a side ward (result: best rest for ages). Eventually after new batches of blood samples etc we got there. By which time I was extremely breathless, hardly able to walk but could at least retreat into my private cave to…
26 Aug 2012 39 comments - read and reply.
Just as I've been saying how wonderful it is here in the Royal Marsden, I'm now being shipped off to another hospital. Was it something I said? Or does someone want me to write a consumers's guide to London area hospitals?
Tomorrow morning I am moving to the Royal Brompton. It's not far. In fact it's just across the street although I believe they're not allowed to push me along the street in a wheelchair so I will need hospital transport for the 50 metre trip. I could walk but I don't think that's allowed.
I must admit I was disappointed as I felt I was making progress here. Indeed this morning I went with the physio to the gym and managed 18 minutes on the bike. It was soo good to be in the saddle, even of a static bike.
The reason for moving is that the antibiotics are not bringing down the blood markers (in other words not resolving the infection and the fevers) so, reluctantly, my consultant wants me to have thoracic surgery and that has to be at the Royal Brompton. Apparently he's a wonderful surgeon with very good hands (when he said that I tried…
24 Aug 2012 33 comments - read and reply.
Last night, just as I was congratulating myself on having had a reasonably calm afternoon and beginning to hope for plain sailing through the night, my temperature spiked to almost 39 degrees (worryingly high I was told).
The nurses immediately manned the boat-stations. They told me they'd be giving me paracetamol which would bring on sweats and that soon I'd be awash in a pool of my own perspiration. It's always good to be forewarned although I didn't have the energy to change out of my still fairly clean-on PJ trews and T-shirt (when you catch me in a hospital gown you'll know I'm in trouble). Sure enough - like sailing into a tropical storm - I was soon heading deep into another of my frequent raging fevers.
After maybe an hour (I had little idea of time passing) all my pillows, sheets, and my clothes were thoroughly soaked. The nurses leapt to action. While I clung onto the life raft of my bedside chair, they re-rigged the bed: completely new, crisp sheets and pillows.
I returned to the helm but the stormy waters were still crashing about me. After another vortex of time, I was every bit as drenched…
23 Aug 2012 30 comments - read and reply.
I'm now starting my second night at the Royal Marsden hospital in South Kensington and this is how every NHS hospital should be. I feel welcome, safe, secure, well-looked after and am reassured I'm getting the best specialist cancer care I could be getting.
The good practice permeates from top to bottom, from the smiling welcome, the careful explanations, the time staff can give you to the design of the wards. I realise other hospitals do not have this level of funding or staffing. But they should. Whereas before I was anxious, double-checking staff and desperate to get out, in this hospital I'm calmer and ready to go with the flow, while still trying to do all I can to help myself.
The good news is that the CT scan shows no sign of a blood clot on the lung ( not unknown with carcinomas). The not so good news is that there are new pockets of fluid, which seem to be infected, and the underlying tumours have grown, possibly quite quickly. The left lung has not fully reinflated. So there's lots to do but the priority is getting on top of the infection. early signs suggest the new antibiotics…
22 Aug 2012 13 comments - read and reply.
I was hoping to be bearer of good news and to give some observations from a patient's perspective of hospital but I'm afraid events have conspired against me. So this is just another quick update on my position until I feel well enough to do a full blog post.
I came out of hospital a week ago, mainly after pleading to be allowed home for some rest. The doctors were good to agree to let me go but they too weren't sure the I/v antibiotics were doing the job.
I was home for four days which brought a flood of relief. Unfortunately it didn't bring better health. So four days later it looked as the pattern was about to be repeated as I was readmitted via A&E with fears the fluid had built up again in the lung. Eventually they decided it wasn't fluid but another new infection. It was touch and go whether I would have to stay in for several days but again they agreed to let me home on oral antibiotics. For the pain relief I can self-administer oral morphine.
I got through the weekend, helped enormously by family and - of course - Test Match Special…
20 Aug 2012 15 comments - read and reply.
I am out! All that digging and tunnelling finally paid off as I emerged, blinking into the natural air and light off the outside world beyond the perimeter wire of Kingston Hospital.
After 7 nights and 8 days, it was such a relief to be going home. I know I needed to be there but I never feel quite safe in hospitals and there is so much there that is unsatisfactory and,frankly, bad for your health. Having said that, I am very grateful for the medical care and attention I received, particularly the essential draining of getting on for four litres of fluid from my lung.
This involved ultrasound to work out where to fix the drain and then the insertion through the ribs of the drain itself (quite painful) and the switching on of a tap. It gushed like an oil strike - and about as dark and horrible looking. I had to have a bucket attached to me for several days which, when full, was pretty heavy. I felt like a prisoner with ball and chain. But the relief of pressure on my port scrunched up lung was enormous. Luckily it didn't stay collapsed (a risk in these…
15 Aug 2012 24 comments - read and reply.
Sorry for the lack of recent posts. I had to go into hospital last Monday and so far have not been able to tunnel my way out (further escape plans are still being hatched). I had three litres of fluid drained from my left lung which explains why I found the hills on my Welsh bike ride such hard work - even Bradley Wiggins might have struggled with that much extra fluid on board. I was in some pain but now feeling much better. Unfortunately it is difficult to get internet access in hospital but I will update you all once I'm out.
11 Aug 2012 13 comments - read and reply.
I try to keep this blog positive so I'm sorry to be bringing disappointing news. I saw my oncologist on Monday and received the results of the bone scan and the latest CT scan - my first for 6 months. They showed that the cancer has deteriorated and - the biggest shock - has now got into my bones at one point in the spinal cord.
The deterioration explains why I was finding it such hard work to breathe on the hills when cycling in last week's bike ride. Because of that I wasn't so surprised that the tumours had spread, but I really was not expecting the movement into the bone. The good news is that it's not yet extensive.
I knew it was bad news from the moment I saw my oncologist, whose expression gave it away. But he broke the news as well as anyone could, getting straight into it without preliminaries and then giving me a clear explanation of what it all means.
I'm still reeling from this and will take some time to think about the many options I was offered for the next phase of treatment. These range from sticking purely with the complementary…
31 Jul 2012 20 comments - read and reply.
<The Men's Olympic Road Race heads out through Richmond Park>
I get the results of my latest CT scan and bone scan tomorrow and - although I've tried to push it to the back of my mind (and also tried not to raise my hopes about the outcome) - it's been hard to stay completely calm about them. But the Olympics have been a helpful distraction and the fact that I am here enjoying them is a reminder that some 16 months ago, when I received my lung cancer diagnosis, one of my aims was to stick around long enough to watch this sporting extravaganza. So that's one aim achieved!
On Friday we cycled along the Thames towpath to watch the Olympic flame making its way down the river in the Gloriana. I was amazed by the numbers of people who had turned out. From Kingston to Teddingon lock (and no doubt well beyond) the crowd was several deep.
Yesterday, the excitement rose several notches with the Men's Road Cycle Race. Again we were lucky as it passed so close to us. I joined thousands of other cyclists (and pedestrians) in the car-free Richmond Park to watch both the outward…
29 Jul 2012
<Ready for the off: just leaving Holyhead docks>
Well, I did it – or at least most of it. The bike ride through Wales was certainly as tough as anticipated – sometimes tougher – and there were some low moments. But I prefer to remember the highs: great companionship, wonderful scenery, some swooping downhill runs, and the overall sense of achievement. And the biggest achievement of all – thanks entirely to your wonderful generosity – is that well over £5,000 has gone to the cancer advice charity Yes To Life.
I started in Holyhead and I ended up in Cardiff. That much went to plan. But there were a few adjustments (otherwise known as Welsh mountains) to be made along the way. Let me tell you the story ... and please excuse the length, it felt like along ride to me!
It began as I waited on the dockside at Holyhead harbour in Anglesey, looking out for arrivals from the car ferry from Dublin. I was meeting the originators and core team of The Ride,…
27 Jul 2012 6 comments - read and reply.
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 2 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 2 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 9 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 5 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 14 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 5 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
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 5 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 2 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 2 comments - read and reply.