Our Visit to Villiers Park

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…

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17 Feb 2013 11 comments - read and reply.

Happy New Year

Hello everyone,

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 

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04 Jan 2013 32 comments - read and reply.

Mike's Memorial Service

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…

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25 Nov 2012 33 comments - read and reply.

Memoral Service Details - Parking

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

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16 Nov 2012 44 comments - read and reply.

Memorial service details

 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). 

Getting there:

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…

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12 Oct 2012 50 comments - read and reply.

Chrissy here

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…

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26 Sep 2012 108 comments - read and reply.

Sad News

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. 

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22 Sep 2012 288 comments - read and reply.

Making hospitals bearable

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…

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12 Sep 2012 400 comments - read and reply.

I'm still here ....still kicking!

 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…

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06 Sep 2012 815 comments - read and reply.

A quick update

 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…

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01 Sep 2012 854 comments - read and reply.

That old draining feeling again!

 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…

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26 Aug 2012 69 comments - read and reply.

All change again!

 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…

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24 Aug 2012 64 comments - read and reply.

Riding out the storm

 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…

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23 Aug 2012 72 comments - read and reply.

Royal Marsden - how every hospital should be

 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…

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22 Aug 2012 49 comments - read and reply.

In and out of hospital again

 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…

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20 Aug 2012 50 comments - read and reply.

Escape plan works

 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…

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15 Aug 2012 93 comments - read and reply.

I am in Hospital

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.

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11 Aug 2012 47 comments - read and reply.

Disappointing scan results

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…

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31 Jul 2012 46 comments - read and reply.

Olympics takes my mind off scan results

<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…

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29 Jul 2012 19 comments - read and reply.

The Big Welsh Bike Ride - what a killer!

<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,…

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27 Jul 2012 27 comments - read and reply.