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Headcase Ironman

~ Raising funds to help find a cure for Glioblastoma Multiforme (GBM) brain tumours.

Headcase Ironman

Tag Archives: Colin Smith

No Apologies….

08 Saturday Feb 2014

Posted by Editor in Blog, Colin's Blog, Editor's Posts

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Tags

Cancer, Colin Smith, GBM, Helen, ironman, triathlon

We are off! The first donations for chapter 2 has arrived, thank you, and perhaps it is time to remind ourselves why. I thought or rewriting the story and then I just thought of Helens post days after her husband died and there is not better way to remind each of the team why they are training and every follower who reads this blog why… over to you Helen….

Colin & HelenWell, my Colin has gained his wings. What a hard road that man travelled! It’s kinda funny because at the beginning I promised him that he would never ever die anywhere but home. I meant every word, but, as time passed, it soon became evident that despite all the skills I had acquired, I could not cope with his total needs and I will always carry an element of guilt.

From a strong independent man who had the full respect and trust of his family, he was stripped by this horrible disease of every element and aspect of his personality. A personality that was so strong that everybody in the family (even though they had all formed separate units) trusted him to make financial decisions and hold all their important documents. We had faith in his every word. From almost the beginning though, it became evident that the kids would have to control their own paperwork and finances as Colin was increasingly confused and forgetful. The kids had to handle the financial decisions themselves and it was a very sad day when it became obvious that this was the only course of action.

The months I have recently spent with Colin have been very hard at times but I have also had some very good times as, despite that bitch of a tumour “Camilla”, his sense of humour always seemed to shine through and this made everything much more bearable..

All treatment for Colin was stopped in February and Colin was fine for a while except for his immobility and increasing confusion. At the end of May Colin started to have horrendous hallucinations which went on for several days and I had to call upon both our boys to help calm him down and reassure him that what he was seeing was indeed was indeed not reality – just illusions. Colin was admitted then to the hospice for the second time so that they could help alleviate the visions and reduce his constant state of agitation.

I have never been so grateful for anything in my whole life as I was for the offer of help from Garden House Hospice in Letchworth. They controlled his medication (it took 8 or 9 days to get the combination right) and then his health began a sharp decline – Camilla the tumour was on the march. We all realised that now his time was short but I was able to be Colin’s wife again and not just a carer. We spent quality family time and often cried together but, we also laughed – boy did we all do that! We still continued to take the mick big time. Tommy played the answer phone message from Colin requesting Tom’s immediate presence and then apologising because he (Colin) couldn’t find his phone! He had not realised he was using it!!! We all know that if the situation was reversed, Colin’s banter would be relentless

Colin started to lose his ability to swallow as well as many other abilities. About 2 weeks ago the food that he was offered was refused and when he opened his mouth to eat he was unable to chew and swallow he became weaker and weaker until he eventually became unconscious on Sunday.

On Monday he was put on the Liverpool care pathway, the most heart wrenching time imaginable. He had no nourishment or fluids and eventually fell into an unresponsive state of unconsciousness.

We as a family stayed with him constantly, he was never once alone day or night, it really strengthened our family unit beyond all of our expectations. This mortal man, Colin Smith, could not have had a more genuine love and adulation from his children than if he had been a god. We all love the man that was, not the shell of a man that Colin had become and I think that is why this type of cancer is so very cruel. When the end came for us as a family it was a release from a life robbing illness that had taken every aspect of Colin’s personality and dignity. We love and miss him more than any words can convey. He was always larger than life and always reducing me to side splitting laughter in every situation.

That’s me in the wheelchair with my flag.

21 Thursday Feb 2013

Posted by Editor in Blog, Colin's Blog

≈ 23 Comments

Tags

Cancer, Chelsea, Colin Smith, GBM, ironman, triathlon, Tumor

wheelchair

Let me start by saying that it’s good to be back and feeling more normal and thanks to those who stepped in for me last week to enable my blog to go out.  I’ve a long way to go now to get rid of the clots on the lungs, daily injections in the stomach for up to five months while monitoring the tumour – the clots being the priority now and not to form any more.  I am on oxygen at home at the moment to stop breathlessness and I’m awaiting a wheelchair to be delivered.

So once again I was admitted to Addenbrooks at short notice, not really being sure what was up exactly.  Arrived…taken to Oncology short stay…blood tests…chest Xray…MRI scan and when the results came back it amounted to blood clots on the lungs. They wanted me to stay in for monitoring and so they had to find a bed for me which they did at 10 O’clock at night.

It wasn’t until the staff handover the next morning that I got the technical term for my condition.  As the doctor and night team were handing over, they were going through the other patients.

“This is Mr So and so, bowel cancer.  This is Mr Blah Blah, bone and hip cancer.  This is Mr X, cancer in the femur   and this is Mr Smith, admitted late last night with….constipation!!”

I looked up at them.  “What?”

They were giggling.  I said, “Excuse me.  I’m terminally ill here.  It’s a brain tumour, not constipation!”

Well, thank you all again for your donations and for your messages of support. I try to thank you individually but my computer is as slow as me these days!  I am going back to the hospital again on Friday for more tests, scans and to check on the fecking clots!  A new magazine/publication recently launched by a friend of ours,  Ms Katy Ryan, “In-Spire”,  ran a Headcase article this week and my story  featured under the headline “Six Months Survivor and Counting”  You can find it at  www.in-spirelsmagazine.co.uk.

My two Chelsea auctions have ended this week of my personal collections of programs and ticket stubs. The proceeds will be deposited direct to the Headcase charity once the money has gone to my PayPal account and all the fees (EBay charges, postage, PayPal fees)  have been deducted.

I would like to wish a speedy recovery to our Ironman, Tony, who underwent a more invasive operation on his shoulder than he first thought. My heartfelt message is,  “Get over it and get back training!” I understand that he is on holiday next week to recuperate.

We have encouraged young Bootsy to dust down his cycling equipment in case he is needed to step in as a replacement for Tony on the off chance he doesn’t recover and get fit in time. We’ve also negotiated with the organisers to have a separate competitor to do the running part of the Ironman which Nick has agreed to do. We are frantically trying to locate enough Lycra to custom – make a leotard for him!

Finally, I would like to welcome into the family my latest grandchild, Francesca, who arrived on the night of Wednesday 20th of February weighing in at 9lb 1oz.

 

 

 

This was always going to be a rocky ride!

16 Saturday Feb 2013

Posted by Editor in Blog, Colin's Blog, Editor's Posts

≈ 5 Comments

Tags

Cancer, Colin Smith, GBM, ironman, triathlon

I have been asked to write on Colin’s behalf this week as he is unable to post a blog update himself. Alas this is because he is currently in hospital, his condition has taken a sudden turn for the worse with a diagnosis of multiple bilateral pulmonary embolisms ! (blood clots on both lungs) he is having treatment for this and at the moment this condition is serious.

Colin feels that posting his developments like this will help people realise how this terrible disease can so rapidly escalate! He has made sure there has been a wonderful element of humour in this blog to encourage people to relate to the person as well as the disease. We have all read some moving and wonderful postings from Colin’s friends and family and we are delighted to have been privileged in helping providing the forum for everyone to express their support and feelings towards Colin and his family.

However we also need to impart just how catastrophic this cancer is and how fast matters go from concerning to serious. For those who take a serious view on wanting to understand what happens, from a more medical perspective you may want to read: http://www.hindawi.com/crim/medicine/2010/862028/ it is from the USA, but it is one of many case studies available for review.

Gender of people who have glioblastoma multiforme and experienced Pulmonary embolism:
Female – 29.7%
Male      -70.2%

Age of people who have glioblastoma multiforme and experienced Pulmonary embolism:
40-49 – 15.14%
50-59 – 24.29%
60+    -58.04%

Our prayers and best wishes are with you Colin.

Blazing 80’s @ The Crown 9/3/13

10 Sunday Feb 2013

Posted by Editor in Blog, Events

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Tags

Cancer, Colin Smith, GBM

Blazing 80’s

The Crown, Stotford

09/03/13

Charity event now organised for Colin 9th March at the Crown Stotfold, we will be listening to a great band called the Blazing 80s for which we will be charging a small entrance fee, and we will have a raffle all proceeds from the door and raffle to your cause.

Update

07 Thursday Feb 2013

Posted by Editor in Blog, Dan

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Tags

Cancer, Colin Smith, GBM, ironman, Nice 2013, triathlon

WEB ONLY_DO NOT PRINT_HEADCASE FINAL DESIGN (2)

While everyone reading this has at least some basic knowledge of computers and the internet, there are still a number of people that have not yet made the leap towards this new age form of communication and as result, won’t of had the privilege of reading the truly inspirational stories and comments that have been posted since this blog was set up. If ever I needed some motivation to get in that gym I know I don’t have to look any further than this site that’s for sure!

So, for those that haven’t quite mastered the art of mouse clicking and keyboard typing we’ve made a poster that people can put beside collection jars explaining the story and what we are trying to achieve. We are also hoping they will help to spread the word further a field by being put up in offices, at schools or anywhere people think will be beneficial to help collect donations.

We should have these printed by the end of next week and we will let you know asap once they are ready to be sent out to whoever would like some.

OK let’s get serious

05 Tuesday Feb 2013

Posted by Editor in Blog, Dan

≈ 4 Comments

Tags

Cancer, Colin Smith, Dan Russell, GBM, headcase, ironman, triathlon

5k Time

So there are 139 days to the event and I’ve now begun full time training starting last night with a 20k interval bike session and a fast 5k run to blow out the cobwebs from what was a very busy and generally unhealthy last couple of weeks. My aim is to have 9 days rest between now and the event which means I’ll be getting 130 days of solid training under my belt. Whether that’s possible or not is another story but that’s the goal so we shall see how we get on!

Tri Yas this weekend should be interesting having not raced for 10 months. Last minute decision to opt for the sprint distance rather that an olympic race which I think is the right one at this stage. Plenty more races in the coming weeks available but I think its really about getting solid training sessions in rather than competing too much in short distance racing.

Weekly Update – Death Row

03 Sunday Feb 2013

Posted by Editor in Blog, Colin's Blog

≈ 5 Comments

Tags

Cancer, Colin Smith, GBM, headcase, ironman, triathlon

3rd February 2013

DEATH ROW (How I became an Inmate)

Well, here we are on Death Row, no timescale, just a vague time slot before the old Grim Reaper comes-a-knocking for me. I think I came to terms with the seriousness of my condition by looking at Helen’s face collapsing in front of me and seeing her scrambling around frantically in her handbag for uplift (facial scaffolding cream) while talking to the consultant.

After my surgical biopsy at Queens Square Euston, we were sent home, being instructed to return to Addenbrooke’s  Hospital, Cambridge for the results. I was fairly confident that they had made a mistake and there was some magical ‘thing’ they could do.

‘Wait here a moment please’ after leading us to a room. Door opens, a new face appears. ‘Come on in please, take a seat,’ no eye contact….. I glanced at Helen, no response. Then from under the desk she pulls out the biggest sledgehammer and asks me to lay it across her desk. She raises it, writes NUT across my temple in one of those markers and… WHACK. Then, quickly, she says  “Results positive- GMB grade 4, only containment, no cure, no surgery. Terminal.

  • Option 1: Do nothing and it’s 4-6 weeks.
  • Option 2: Short intense treatment, radio/ chemo 4-6 months. 3. 9 month chemo/ radiotherapy if you can handle it = up to 12 months.

The recorded survival of a patient from some village in outer Mongolia, where time stops for 6 months of the year, and if you get there and start treatment the right day and time, and eat the mountain goat’s shit, then you may have a chance!”

So we think about the options for 0.5 of a second and opt for the 9 month plan. I was sure Helen was going to say let’s go for the shortest! At the moment she’s had to put up with months in of my erratic behaviour,: losing things, road rage, mood swings, and now…. I’ve only gone and got a walking stick!

We were asked to give them an hour while they made up my treatment plan. “This is going to take more than an hour” I thought when we got back.  We got everything in boxes, medication, notes etc, etc and as we waited by reception the receptionist looked up and said ‘Mr Smith, here you go’ she passed a single sheet of paper.  ‘Good bye, we will see you on your 1st appointment’ pointing to the top of the sheet!

So my initial Death Row is to be spent at home not hospital!

So, off we trotted looking at the treatment plan. It was radiotherapy Monday-Friday, chemotherapy 7 days a week in the form of a tablet taken at home.

First appointment

I had to get a mask fitted, moulded on my face for the radiotherapy. So first I went  into the moulding room, I was placed flat on my back, legs over a  moulded hump for knee support, head in a dip at the back, clamped down  tight, over face- laser beams criss-crossing, and  markers being put on different places. It was so claustrophobic. That finished, I left the room. On the way I glanced at a mirror; Crikey! I thought.  I looked just like Helen after an intensive pick and squeeze session!

After about a week of this, I was getting a little too confident and strolled into the radiotherapy room, kicked my trainers off, hopped onto the bed, put my feet where my head should have been, arched over the knee support and inching my head along backwards. So there I was, balancing like a see-saw. That was the most pain I’ve had since diagnosis.

The nurses suddenly saw what I’d done and shouted ‘Colin what are you doing?!’ I replied ‘Aargh!”  Well, from that moment on there was laughing and giggling from anyone, even the radiographer behind the glass screen was laughing- they had to give me a good half hour to stop!

Well, looking back on this past week there was not much going on except Chelsea continuing to give away goal leads.

I’ll finish now for the week by thanking everyone who has supported us and the charity. We are creeping towards the target. Keep training hard Tony and Dan and thanks for all your behind the scenes work, Kirstin and for pushing everyone on. And finally, well done to Bootsie for passing the careers refresher course.

Coming up this week for charity:

  • Auction off part of my Chelsea memorabilia. All proceeds to Headcase.
  • Black cab collection at Heathrow airport.

Weekly Update

26 Saturday Jan 2013

Posted by Editor in Blog, Colin's Blog

≈ 3 Comments

Tags

Cancer, Colin Smith, GBM, headcase, ironman, triathlon

Colin & HelenApparently I am obliged to write a weekly blog, about feelings and things in general, so….here goes.

Now that the “Just Giving” site is up and running, I would like to thank all those who have donated and for the kind comments they have posted. It really does mean a great deal to me and makes such a difference to the way I look at life. I am turning into Bob Geldorf from Live Aid with his “ Give us your f***ing money!” Joking apart though, every penny does go into finding a cure which will be a truly marvellous day, too late for me and many others with the same condition but hopefully for future generations and some of the little mites we see around the hospitals.
Let me start with a few “Thank You’s” in no particular order………

  1. I’m sorry God, you’re not included in this one!
  2. To Tony Russell and his son, Dan for recommending this charity and for tirelessly working to get everything up and running while simultaneously training for the Iron Man challenge in Nice which will also be for Headcase.
  3. My wife, Helen, for her patience and care. Also for her obvious frustration about only having 1/3 of the bed instead of ½ now that the steroids have kicked in again!! I’ve gone from being “Darling” as a pet name to “Moonface”!
  4. Debbie, the lovely landlady of The Crown pub in Church St, Litlington, near Royston for all her efforts and her link between us and “The Stars”!

As far as things are going for me, I’ve had a relatively pain free treatment up to now. Radiotherapy has been completed and I am on a break from 2nd stage chemo which runs at 5 days on and 23 off. My next bloods and chemo are on 5th Feb. Tiredness is about the only symptom apart from a sense of confusion when I’m talking or listening in a crowded situation. Oh, and my concentration can be limited and I keep losing things as well as having the odd hallucination.. (one really strange one the other night was when I really thought Chelsea had gone out of the League Cup!)

I am trying to go to as many games as possible however it’s a struggle not only for me but also for my “carer” Bootsy who looks after me. I think he’s going for a day’s training next week due to two recent incidents when firstly, I tumbled out of the tube flat on my face and then when I fell back down an escalator, both times landing in a heap but laughing.
I am so grateful to Bootsy and the others on the list above. Actually I am grateful to everybody who has been so kind, very grateful, it’s really humbling.

We have a few events coming up with the support and appearance of ex Chelsea players and with the friends and family who have harangued the CFC to continue to support us.

For my part, I am in the process of selling off all the Chelsea memorabilia that I have collected over the years and we shall be making our personal donation by next weekend, if my computer stays up and running. Please be assured that I do read everything you post but I am often quite slow in replying.
PLEASE KEEP UP THE GREAT SUPPORT! And ………Donate, Donate, Donate! No Helen, not doughnut, doughnut – I’m fat enough!

Looking back on all this, my story and my feelings, I think my D Day came right out of the blue. No warning, just bang! There was no explanation and I have never lost consciousness. Helen was with me 24/7, discussing my case with the doctors and then making things clear to me with the best of her medical knowledge. My initial reaction was that just two months before I had experienced the best day ever, Chelsea and Munich and that now was the worst day that could be imagined, but it was not yet 100% certain so there was just a little bit of hope to cling to. That hope disappeared though when the consultant took us into that dreaded “Little Room” in Queens Hospital, London……….

Next week: Coming to Terms with Death Row.

A Daughter’s Plea

25 Friday Jan 2013

Posted by Editor in Blog

≈ 1 Comment

Tags

Bije, Cancer, Colin Smith, GBM, ironman, Tirathlon, Tumour

Charlie 3Colin’s story has had an overwhelming number of messages, it is difficult for people to keep up with them. However picking this one out to blog was an obvious. It tells you exactly what is needed – donations, but also the heartfelt words of Charlie, Colin and Helen’s youngest Daughter.

“I can not put into words how much you mean to me, I can not put into words what an amazing, Dad and Granddad you are and how much I love you!, I am so so so proud of you Dad. With out your funny(/sick) sense of humour, great spirit and determination I’m sure we would have all given up hope! You are doing such an amazing thing and given us all hope that there can be a cure with a little help from everyone to raise money for the research needed to find a cure! Please, please everyone donate something big or little (as every penny helps) by clicking on the ‘sponsor me tab’ at the top of the right hand page!!!!! Dad I love you and I will do everything I can to raise money for the charity and thank you so much for those who have already donated !

Its about time to start

18 Friday Jan 2013

Posted by Editor in Blog, Tony

≈ Leave a comment

Tags

Cancer, Colin Smith, headcase, ironman, Nice, Tony Russell, triathlon

After more than 22 triathlons and half Ironman races one would think it would be a natural progression perhaps to start stepping up the training for the double or quits. And there is a valid case for the observation that this may be the last viable year to do it. 55 years years old, knackard knees and now other, granted unnecessary at this stage, organs are giving up the ghost. So do or die.

But Christmas is a funny time of year in the City of London, a series of necessary business lunches and evening drinks gatherings, so a steady routine of swimming in the morning and where at ll possible an evening cycle. Then make up the shortfall at the weekend, that should be ok and in the New year we take matters seriously. Agreed?

But first let’s shop….

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