Category Archives: Colin’s Blog

No Apologies….

08 Saturday Feb 2014

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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.

The “Last Post”

22 Monday Jul 2013

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Helen’s Blog (22/7/13)
Well, 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.
Goodbye my lovely man, my love now, forever and always, Helen

The Funeral will take place at St. Mary’s church Baldock,on Thursday the 1st August at 1 pm, then to the cemetery which is all in walking distance, followed by a celebration of Colin’s life at the Orange Tree pub, that is on the corner of the Cemetery.

24 hours to go

22 Saturday Jun 2013

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Start

In 24 hours the Support team with have escorted the competitors to the beach, distracting the nerves.  Tony and Dan will have lined up with over 2000 other insane nutters, Considering the best method to cover the 2 or 3 meters of very uncomfortable stones and launch themselves into the waves to commence a race of a life time.

The walk back from the Pasta Fest last night covered topics such as the metal boredom of straight road run, the merits of setting a time goal for each stage vs being delighted just to complete it and the issues over pre-race preparation involving the bathroom!

The 5k walk, rather than waiting for the hot and overcrowded bus was an opportunity to calculate the view around the bay that will appear on each of the three circuits, and the hope that there will be as little wind as possible to battle with.

The guys talk of flick flacking between nerves and excitement and the desire to just get it started now. But in reality the last day of essential training involves doing very little, and resting, perhaps taking in the rugby, but definitely feet up, until they announce, “perhaps a little swim in the morning would be a good idea, oh and a small run later on” But for now it is a question of mental calm and biding the time to the start.

It is not clear where the live results are to be posted online, if we find out we will pass the information on through a blog post. But the start is 6:30am, remember Nice is a hour ahead, so obviously we hope everyone will be up bright and early at 5:30 to be thinking of them at their start line.

7:30-7:50 they hope to be exiting the swim., hopefully fending off any kicks to important parts of the body, and dodging the jelly fish.

Then the bike, a bit of an unknown really and with some pretty eye-watering inclines the challenge is immense:

BikeThe race is not possible to view en route unless you are residing in one of the mountain villages as lots of roads are closed and the thought of taking a car or taxi up to station yourself to see them wizz past but increase the chances of being the cause of a collision with a competitor in some freak accident is not worth it.

So after thy have done the journey they will return to the seafront. It is thought anytime from between 2 to 4pm local time.

Then the run, four times up and down the Promenade de Anglais.

Support crew on hand if required, mainly in full voice to cheer as loudly as possible, and post any and all news as live as possible.

Expected finish time, nothing firm and no expectations, but vaguely any time between between 7 and 9pm, But we will keep you posted.

Colin’s Blog – Helen

14 Friday Jun 2013

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Apologies for not having given any updates people, but Colin has been very poorly this last month………

20130516_023153His decline seemed to kick in after the last game of the season, he was so pleased to have “made it”!  Bootsy and the lads had taken him to Amsterdam which he enjoyed immensely  but the schedule was gruelling.  When he arrived home he took to his bed only to gather enough strength to attend the last game at Chelsea.  He has been in bed pretty much all the time since, only to get out for the loo and the occasional cigarette. This was the case until last Thursday when my cabin fever had reached a crescendo and I insisted  on a trip to Cambridge for a wander around the retail park.  It was so nice, he was extremely relaxed as I wheeled him around in his chair and popped into Marks and Spencer for a browse.  Just inside the entrance was a young man with a couple of trays of nibbles for the customers to try.  He invited Colin and I to try some, at which point Colin grabbed a handful (very unlike him!) and proceeded to stuff them in his mouth.  The man asked if we liked them, to which Colin replied , “Yeah, they’re OK”

WHeelchair-Racer

“Oh, good” said the man, “they’re £5.99 for two trays.”  Colin then emptied the contents of his mouth into his hands and threw the half chewed savouries right back at him shouting “I thought you said they were f****** free!!”  The look of shock on his face was priceless!  There was a quick embarrassed explanation from me and we made a sharp exit leaving only the smell of burning rubber from the wheels on the chair!  So, there was another memory for me to cherish.

From that event Colin has been worsening on a daily basis, becoming increasingly confused and with a greater number of hallucinations.  He has feelings of things moving and has felt liquid dripping on his head and has felt and seen his feet on fire.

On Wednesday 5th June at 2am he woke me up shouting that I had to keep calm but that our house was collapsing. I turned the light on and saw the look on his face, shock horror and fear.  I had only seen that look on his face once before and that was the night he had to identify our son Daniel’s body on the night he was killed in a car crash.  It really did frighten the knickers off me! I just couldn’t manage him or the situation so I called our eldest son, Jamie to come over.  He then escorted Colin around the house, reassuring him of the building’s stability over and over again.  My other son, Tommy, then took over after he had finished his night shift.  The psychosis lasted for a three day period and the only time he slept was when he was sedated with Lorazipam which our GP had prescribed.  The GP, District nurse and MacMillan nurse got in touch with the hospice and Colin was admitted.  The first few nights he spent there were much the same, he had to have an infra-red sensor put by his bed to alert the nursing staff when he was moving.  He was determined to come home and kept packing and re-packing his case.  The nurses had to keep a vigil outside his room to ensure he came to no harm since his balance was so bad.  The doctors have now prescribed Haloperidol which seems to be doing the trick.  He is now much calmer and, although he still sees his bed moving, floors cracking, feels water running on his head and his feet on fire, he can now accept that this is all due to the tumour.

When I was asked to do this blog, I had every intention of keeping things very light and funny as indeed a lot of situations have  been so.  I then wanted to give you some insight into the much darker moments, so people will realise the havoc and devastating effects that Glioblastoma Multiform can have on people’s lives.

We are both so very grateful for the support and help we have had, it is truly humbling but my dearest wish is that a cure will be found for this cruel, cruel disease.

Many, many thanks,   Helen.

May 19th blog from Helen.

19 Sunday May 2013

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I just can’t believe Colin’s strength of character and the faithfulness of his mates.  They only got him to the Europa Cup in Amsterdam! And…….Chelsea  only went and won!!

Amsterdam crew

Please don’t let me give the impression that I am a fan as I am definitely not,  but Colin is such a fanatic and has such a passion for Chelsea,  that if he showed the same for me, I would have had a dozen or more children instead of the five!!  So in many ways I’m glad the energy was re-directed.

nurse

Well, on Tuesday Tony, Bootsy and Steve Hargreaves were dutifully gathered in a circle while I gave them all orders  on Colin’s medication, thinking that if one forgot the others would remember.  I showed them the injections with further instructions about where to inject.  All three looked wide-eyed and glanced nervously at each other willing someone to come forward and volunteer to play nurse.  As there was no response from the trio at this point….

So I picked Tony.

I have since found out that Colin administered the injections himself but well done anyway Tony for not objecting when you were nominated! Ha Ha!!

Colin has not told me too much about the actual trip, but then, he never does anyway.  From what I can gather, though, he only had two near misses.  Firstly, when his foot became trapped between a train and the platform and,  secondly,  when he tried to stand up to catch a camera another fan had thrown him so he could take a picture from his better vantage point, only to take a tumble six feet down a parapet! I am sure that in due time there will be more tales to tell but I’m really pleased Colin had a good time and that, barring death, he would never have missed this game or any other that Chelsea played and he could get to.

As you are aware, Colin was in the Hospice for twelve days recently.  He still managed to get to two games while he was an in-patient and for the last one, was delivered back to the nurses at 1a.m.  One of the staff asked him if he had enjoyed the match and he replied “What match?”  I thought to myself then that I could save a lot of worry and hand-wringing by telling him he had attended when indeed, I had him tucked up in bed and suitably sedated!

The fundraising is going very well. Many lovely ladies and I had a wonderful time last Saturday at Faye’s Racing Day. There were about forty women and ten teenage girls (who were too young to bet, of course) but we easily beat the boys with well under a third of the attendees, by raising over a thousand pounds!

Both my daughters and my daughter-out-law attended Vicky’s fundraiser last Thursday evening which too was highly successful. This despite being on a weeknight and a “Drum and Bass” event aimed at young Mums, who of course need all the money they have for their young families.  £345 is a brilliant total so sincere thanks to both V icky Witherick and Faye Tracey for putting in such a fantastic effort for the cause.  As well as all this activity, Shirley and John King have donated another £47.50 from donations in their pub and Michael Edwards, Colin’s brother in law, has donated £25 collected from his office at British Aerospace. Many thanks for all that generosity, goodwill and organisation.

Finally, news of another event next Bank Holiday Sunday 26th May, when Brett Healey is undergoing the torture of a sponsored waxing.  This will be at The Cock Hotel in Hitchin and will be preceded by  fantastic  music from , “Rance’s Rocking Chair Band” (back by popular demand)  from 2pm-5pm, then the waxing will happen at 5pm……ouch!!!!  Added to all this there is to be a BBQ sponsored by Kenhursts. So get yourselves down there folks and have a truly great time in aid of a brilliant cause!!

Tommy’s Blog

09 Thursday May 2013

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Firstly I would like to start by apologising for the delay in writing my take on the current situation and events regarding my dad, Colin. Trying to put pen to paper to explain my thoughts and feelings has proven to be somewhat of a challenge, and we all know it doesn’t take much to get me in a spin. As spins go this feels like I’m stuck on a roundabout and can’t get off so bear with me people. Nothing we say or do is going to make this dreadful cancer inside my dad’s head go away but what really puzzles me the most is where he found the room to fit this inside his bonce, all that knowledge stuck between the alien invader….it’s no wonder he’s been getting headaches!!

This has been a blow to myself and my family but the strength of character my dad shows every day makes me proud to be his son. I am thankful that I have had 27 years of knowing this man not only as a father, but as a best friend. I watch him and my mum together as this illness takes effect and see that the love they share holds no bounds, they both are truly amazing people and I take my hat off to them.

Sentiments aside I would like to bore you all with some nostalgia. Where to begin is yet another challenge for me as there are too many good times to note, and not enough ink in the printer. Being the original Phyliss you’ll all appreciate how I like to go into the detail of everything so I’m prepared to spend this week’s wages on matches for all the tiring eyelids of the people that take the time to read this blog! Anyhoo….

It was my dad’s birthday last week so we rallied the troops for …..yes, you guessed it an Indian at the local curry house. As always, the smith clan took over the restaurant and ordered everything off the menu, drinks included. As the evening wore on we were all somewhat inebriated and cracking jokes at the waiters expense with everybody putting their two penneth worth in, but the cherry on the bakewell was dads comedy gold comment which had us in stitches. There was no hint of the underlying situation and dad was his usual comical self, which is what we all love about him. His sense of humour is second to none and if I ever get to become as funny as him I’ll chuckle all the way to the comedy club…! I’m sure Shelley will have something to say about this as she is second in line in the comedy stakes!

chelsea

All jokes aside, I would like to thank everybody for the support and love given to my Dad since he was diagnosed as having a GBM. Words cannot explain how tragic this is for everybody who knows and loves him and is something which you always think will happen to somebody else. Well it’s happened to us and having read up about this type of cancer can see that dad is fighting this head on…..literally! The courage and strength he shows every day is typical of his character and leaves me in awe.

Tonight he’s gone on the usual pilgrimage to London to watch the Chelsea Tottenham match. It’s a draw which I’m sure Dad will be none best pleased about as a win would have given us the qualification for next season champions league, but now it will have to go the wire. With two games remaining I am confident dad’s spirit will pull the mighty blues through!!…

Come on you Blues and on that note I’m off to put a bet on….

Love you with all my heart Dad,

Colin’s weekly blog

02 Thursday May 2013

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Well, Helen is helping me with the blog again this week –and what a week!!

It all started off with a trip to the Bridge to see Chelsea who were victorious once again.

On Wednesday the 24th we went out for my birthday, the kids treated us to an Indian. The plan was to have a BBQ but as I had a little turn Helen decided we should go out to the local Indian. Very nice it was too, although very expensive but the kids paid.

On Thursday the Macmillan nurse came out to visit and suggested I went to the hospice to try to sort out my medication. This was to restore safe levels and remedy my instability when walking, as well as decreasing the hallucinations. Anyway, I was admitted to the Garden House Hospice where the reduction started on Friday. The staff are lovely and I’m very comfortable in here. The doctors would like to accommodate my passion for Chelsea, so they have decided not to reduce again until Friday 3rd May as Bootsy is talking me to Chelsea on Thursday evening.

Oh, by the way Chelsea have 1 foot in the Europa Cup final after winning 2-1 in the first leg in Basel last night.
Thank you for your continued support and next week there will be a list of up and coming events.

There is however a ladies day which Faye Tracey is organising on May 11th at 3pm (Men allowed in at 7pm). Tickets are £25 which includes afternoon tea, pimms, champers and entertainment. Dress code – ASCOT. More details from fayeelizabethtracey2013@blackberry.orange.co.uk

Colin’s weekly blog – by Helen

22 Monday Apr 2013

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<As a total change from the normal way of doing things, this blog is being written by Helen. Colin is having a bit of difficulty at the moment with sequencing events, dates times and even years so I am taking over this week.  Hope that’s OK with everybody but if not – too bad it’s happening anyway!

I would like to take the opportunity to say how much I appreciate Bootsy and all his other mates at football for taking such great care of Colin and leaving me with a worry- free few hours to myself. It was really kind of Bubbles to ferry him about in his black cab and for bringing him home. Colin enjoyed the day even though Chelsea had the audacity to lose. Don’t ask me who they played – football does not melt my butter!

We have had lots of family time sitting in the sunshine in the garden and screaming with laughter at some of Colin’s hallucinations.  Apparently he saw ET complete with bicycle, a black labrador which even licked his leg and an array of other insects and animals.  He takes all this in his stride and is aware that they are not there in reality, thank God!

Tomorrow is the birthday of both our daughters, Shelley and Charlie. Colin is so proud that he managed to produce such beautiful girls on St Georges Day, he is such a patriotic bloke and a fantastic Dad so it’s marvellous to celebrate both at the same time.  The day after, Wednesday 24th, it will be his own birthday and so the girls want to organise a BBQ for him here and it seems that the weather will be on our side. The grand children won’t be coming to this because it will get too hectic and will add to his confusion.

Nurse Ratched

Colin seems to have a obsession with Family Bargains and on good days I have been known to wheel him up there at least three times so that he can stare at the hardware section.  This has resulted in my hating the place and when I refused one day to go there again, he tried to jump out of the car!! He was so desperate to get there I had to give in.  He calls me Nurse Ratchet after the nurse in “One Flew Over The Cuckoo’s Nest!” and after that event I am definitely going to act like her- ha ha!

Anyway, that’s it for now.  Nothing else to report.  Chat soon, as they say!