Mike Baker's Cancer Blog
This blog was listed at Number 5 in Cision's Top 10 Cancer Blogs in the UK, 2011.
We did it!
70 miles cycling up and down the North Devon hills - and boy were there a lot of steep hills! Some of us actually walked down some of the steeper ones. One of the tougher ones was, would you believe it, called Baker's Hill!
Technology worked out we climbed 6,000 feet overall, equivalent to two Sca Fells!! What an achievement.
It was a fantastic team effort with drivers and cyclists all playing their valuable part. Everybody looking out for everyone and never any complaining (that I heard anyway!) which was amazing.
Sixteen of us set off on Saturday morning with a fair wind behind us and a cloudy sky. This and some sunny patches set the weather tone for the weekend apart from a 20 minute drenching on Sunday! We expected punctures (had three all on the first day - one cyclist having two in twenty minutes), but did not expect a flat tyre on one of the cars!. This was quickly sorted by Bakers Bikers muscle and team spirit. An interesting off piste detour around Barnstable took us onto a dual carriageway with a three-laned…
09 Sep 2013 2 comments - read and reply.
So, day 1 of our Baker's Bikers bike ride is complete! Phew..
Sixteen of us donned the 'blue and white' (Ipswich colours of course), and cycled up steep hills, through the windy lanes, up steep hills, down by a canal, up steep hills, and past some very amused cows. Did I mention that we cycled up some steep hills?
The weather felt like the four seasons had rolled into one - we had the cold, sun, wind and rain - but we made it, and in a very respectable time of 6 hours. I know we are doing Mike proud.
Here is a photo of us at the finish line - clearly very happy!
Now for a good night sleep in preparation for day 2....thanks again for all donations received so far. We have nearly raised our target of £5,000!!
Love Chrissy, Louise and Rachel
07 Sep 2013 4 comments - read and reply.
22 Aug 2013 3 comments - read and reply.
We had a slight hiccup with the blog as people have not been receiving email reminders and have been unable to post comments. Sorry about that but it is all fixed now - thanks Joe,
I wrote a piece on the blog in June after we buried Mike's ashes on 31st May so do have a look at that.
STOP PRESS! STOP PRESS!
The BAKER'S BIKERS are riding from The Parlour at Clayhidon to our favourite beach - Putsborough on the North Devon coast.
The date: September 7th & 8th
The hills are going to be steep and the going tough so please sponsor us to raise money for Mike's memorial trust - I'm sure the more we raise the 'flatter' it will get!!
We have set up a Virgin Money fundraising site: www.virginmoneygiving.com/team/Bakersbikers20
I know most of you know all about the Villiers Park Educational Trust where Mike was a trustee but it's always good to have an update:
Villiers Park Educational Trust is doing a fantastic job helping 14-18 year…
31 Jul 2013
At 2:30 a small gathering of 25 family and friends made a loving, supportive semi-circle around the beautiful spot in Clayhidon churchyard where Mike’s ashes will rest.
The glorious sunshine enhanced the abundant spring flowers, rolling hills and birdsong that seemed to be just for us during the silent moments. Continuing the Baker tradition we punctuated the short ceremony with 2 uplifting songs - a Thunderbridge Boys song ‘Keep on Walking’ and an old family favourite for long holiday drives - ‘It Takes a Worried Man’ sung by Chris Barber, Van Morrison and Lonnie Donegan from their skiffle sessions recorded in 1998. We used to tease Mike that this was his song, and he loved singing along to it.
I chose to read ‘Death is Nothing At All’ by Henry Scott Holland, a poem that sang to my soul and just felt so right. I could hear Mike saying the words;
Speak to me in the easy way you always would,
Put no difference into your tone,
Wear no forced…
23 Jun 2013 1 comments - read and reply.
Our visit to Villiers Park confirmed that Mike’s memorial fund (now at a staggering £15,000) is in good hands. Louise and Rachel, my gorgeous girls, came with me and we met Mike Sparkes and Jonathan Turner (close friends from Mike’s university days and mostly gorgeous!) and when we arrived, Richard Gould the Chief Executive gave us a guided tour with a thorough and impressive explanation of Villiers Park Educational Trust.
Meeting some of the students over lunch was fun and their enthusiasm was infectious and heartening. One girl said to me “all my friends were jealous that I was coming to Villiers Park”. This impressed me particularly as going away to work “really hard” for a week is not every student’s idea of fun. They do have fun though, make new friends with similar interests and are truly inspired and motivated in the relaxed atmosphere that Villiers Park creates.
Richard told us many of the teachers at the schools sending the students have noticed a positive impact on the ethos and culture of their schools. The ripple effect in action!
Jonathan wrote after the visit: “After out visit and long discussion it was easy to see why Mike had developed…
17 Feb 2013 1 comments - read and reply.
A big thank you for all the amazing letters that I have received over the past few months. The heart felt words and thoughts have really helped me to cope during this period. I will get round to replying to them eventually!
The memorial fund is now at an amazing fourteen thousand pounds, so thank you very much to everyone who donated so generously. We will be able to do so much with this money and so many students will benefit so that's really good news. The girls and I will be visiting Villiers Park's Cambridge Centre in February, and we will be meeting some of the students so we will let you know how that goes.
I hope you all had a lovely Christmas - we went to the panto in Richmond (oh no we didn't! oh yes we did!) - and the girls and I wish you all a very happy, joyous and relaxing 2013.
Love Chrissy, Louise and Rachel
04 Jan 2013 6 comments - read and reply.
Photo: Mike with a group of Scholars at Villiers Park in 2011.
It was an overcast day for the memorial service but with the numbers in excess of 300, the wonderful tributes, poems and live jazz music all added up to an incredible service in memory of Mike. For me and the girls all the anxiety and organising was worthwhile.
Thank you so much to everyone who came, gave tributes, or thought about Mike from afar. It was all so special and we will hold the day in our hearts forever.
Thank you also for all the generous donations. More than £3,000 has been raised already, which is a fantastic start to the memorial fund. Significant amounts have also been raised for the National Education Trust and Princess Alice Hospice.
We are very happy that Villiers Park Educational Trust is to honour Mike’s memory by establishing a fund that will help disadvantaged young students aged 14-19 participate in their educational activities. Through their Inspiring Excellence Programme of residential courses and their Scholars Programme, students develop key skills, self-confidence, a passion for learning and academic success. The fund will be…
25 Nov 2012 4 comments - read and reply.
Just a quick note to say that for those of you coming to Mike's memorial service tomorrow, there is parking at the Church but it is limited, therefore we suggest parking around Ham Common or on the road leading up to Ham gate, both of which are only a 5 minute walk away.
Look forward to seeing you all,
Love from Chrissy Louise and Rachel
16 Nov 2012 9 comments - read and reply.
Close friends and family all celebrated Mike's life on October 5th. St Andrew's Church, decorated for harvest festival with the backdrop of the rolling Blackdown Hills, looked stunning. The amazing tributes and live music from a local group the 'Thunderbridge Bluegrass Boys' made it a beautiful, emotional but uplifting service - the girls and I felt all the warmth and love and as a friend commented, the whole day was 'very Mike'.
The memorial service for Mike will take place on November 17th Saturday at 3pm, at St Andrews Church (yes, same name but different place!) in Ham, Church Road, TW10 5HG.
There will be tea and cake after the service. Alternatively, if you feel like something stronger there are two very good pubs just down the road on Ham Common (The Hand and Flower and The New Inn).
Cars - There is parking at the Church but slightly limited.
Bus - the 65 stops very close by, on Ham Common which you can easily get from Kingston and Richmond.
Taxi - good local taxi firm: Crown Cars 0208 546 4444
Many of you asked if the Thunderbridge Bluegrass Boys could play at the memorial…
12 Oct 2012 14 comments - read and reply.
Chrissy here. These may be the hardest words to write but it seems natural to continue Mike's story. The heartfelt words and responses to his blog have helped to carry us positively through the last 18 months of his life - this I absolutely do not doubt. The waves of love and warmth washed over us increasing our inner strength and resolve. He decided with our blessing to 'go public' and now I must help him with the final entry. I believe he will help me and would want you all to know our experience of the hospice.
Catherine our wonderful palliative care nurse strongly recommended the hospice on Monday 17th September to manage Mike's abdominal discomfort. Medications could be tried and changed more easily. Mike nodded and I felt a tinge of relief so we both knew this was the right time. On Tuesday morning I was able to drive Mike there, Rachel poised with the oxygen if needed. He was calm but anxious. This frown of anxiety melted into relief as smiles of welcome punctuated our wheelchair ride to room 13. A lovely light room overlooking an inner…
26 Sep 2012 62 comments - read and reply.
Photo: Taken on the afternoon of Tuesday 18th September at Princess Alice Hospice
This is a quick post to let everyone know that our dear Mike died very peacefully at the hospice on Friday September 21st at 12:20pm. Chrissy, Louise and Rachel were all at his side. He was surrounded by love.
We will write a more detailed entry to the blog in the next few days, but in the meantime tune in to radio 4 today at 18:00 as Nick Higham will be broadcasting an obituary.
There will be a memorial service in due course, details to follow.
22 Sep 2012 170 comments - read and reply.
Making hospitals bearable
Just a very brief update to start with. I'm still at home and still largely bed-chair bound, and still suffering pain as my poor body tries to get the measure of pain killers, the bloating, constipation and the build up of gas. At one point I'm in so much pain I had agreed to go to the hospice, but at the last moment I decided I'd rather be at home. It's silly but all of this is much more painful then the underlying cancer.
On Friday I was also whisked by ambulance into the Royal Marsden Hospital for a MRI scan. This follwed a very painful attack down my arms and back, and there was fear it might have triggered the cancer getting further into the bones but the scan proved ok. It still took many more hours to make my get away, which we finally did by taxi mini cab. Luckily I had one new diversion, I was loaned a ukulele, so now im trying to master a few chords. Not as easy as I hoped, but worth persevering as I think singing - even singing as bad as mine - will help…
12 Sep 2012 30 comments - read and reply.
Sorry it's been quiet for a few days. It's not just that I've been busy reading your lovely posts but I have been feeling very rough and it has never been my intention for this to be a moan about being unwell. Let me just say, the problem is less about the cancer and more about dealing with the side-effects of the painkillers. Every time you start a new medication, there's a new side-effect. Some side-effects are worse than the main illness.
So I've been very useless and weak. But the community medical support has been tremendous from the district nurse, to the Princess Alice hospice nurse, and my wonderful GP. But most of all from family. I fear the static exercise bike has not been used much but I still intend to get pedalling. One great little tip I was given by Gerry Slade, who runs a Mesothelioma support group at Papworth Hospital is that a hand-held fan held just in front of your face is a terrific antidote to breathlessness. Something to do with the effect on the facial muscles. it really works - very good for panic attacks when you feel unable to breathe.
On a sad…
06 Sep 2012 42 comments - read and reply.
So sorry for the lack of news but I've been so listless, lethargic and breathless that even pressing keys on the iPad felt like breaking rocks.
I am now home again, returning on Wednesday afternoon from the Brompton. After much wavering, the decision was that since the chest drain hadn't released that much fluid - and that fluid wasn't infected - it was not worth doing a bigger chest operation because of the pain and risks involved. It might seem a counsel of despair but I think it's a realistic assessment of the underlying state of my cancer, which has deteriorated.
I've been so grateful to my old Cambridge friend, now a lung cancer consultant, for helping to guide me through this difficult time. Mark has been so generous with his time coming to visit me between his busy shifts at Papworth Hospital. Today he and his wife Gerry came to visit me. As she's a cancer nurse, between them they gave lots of useful tips about pain relief and dealing with breathlessness.
I now feel I am building a support network and I had a really good visit from the palliative care nurse from the Princess Alice Hospice. Ironically…
01 Sep 2012 77 comments - read and reply.
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.