Saturday, 17 December 2011

Its Christmas- well nearly!

This time next week it will be about one and a half hours away from Christmas Day, another year has just flown by!!

I do not intend writing a 'review of the year' as I have always believed that the past has to be respected and the future looked forward to.

So what will 2012 bring? I hope lots of good things for you all but for me I hope my health improves and that a lot of personal things improve. I suppose the highlight of the year must be the London Olympics although that means a lot of work at work (does that make sense?). We are not allowed any leave during the Olympic period. On the subject of the Olympics I have a ticket for the cycling event for the last time the Olympics were held in London in 1948, this belonged to my father who was an ardent cyclist himself.

Otherwise I hope 2012 brings you good health and fortune.

As a professional railwayman my thoughts and prayers go out to the ticket inspector on the Southend line who was stabbed in the back by someone avoiding apaying a fare. Words fail me about the attitude of people who do this kind of thing. About 20 years ago I was on the wrong end of a 14 inch carving knife, fortunately his aim was not good! Even so the thought is always in my mind.

Merry Christmas and a Happy New Year


Tuesday, 29 November 2011

Looking Back

Today I reached the age of 60 and its been interesting looking back at some things in my life.

My father died 50 years ago in 1961 when I was 9 and in those days there was not the back ups in place that there is now and my Mother had to go out to work to support us and at times it was tough for her to work, run a home and look after my brother and myself but she managed it. Even so I have to say I had a happy childhood, we were always warm and well fed even though at times I know my mother struggled to make ends meet. Sadly she died in 1997 but if she can read this I just want to say one thing, THANK YOU.

School life was pretty normal and like any self respecting school boy I got up to the usual japes. One I will briefly mention is that part of the school cross country run was part of the route used by the local council refuse lorries going to the tip and many is the time that they went up the road with a group of school boys hanging on the back! Anyone who knows me now will probably find it strange that I always enjoyed cross country running, it would probably kill me now!

In September 1968 I joined what was than the South Eastern Division of the Southern Region of British Rail. At the time I did not realise it but joining the railway was like gaining a second family. Over the years I have worked my way up from working at station level to my present job of Internal Auditor. On my way I have made lots of lifelong friends. In fact the rail industry has always supported each other and looked after there own. Staff are keen supporters of charity and support our own old peoples home, Dr Barnados, several local hospices and a charity called The Railway Children which supports underprivileged children. I feel very honoured to have worked for such an organisation for over 40 years and the support I have had with my health problems has been fantastic.

In June 1990 my daughter was born and added a new element to my life, she has progressed through the education system and is now in her second year at Hull Medical School = one proud Dad!

In December 1998 my life was brought to a sudden halt when I was diagnosed with Non Hodgkins Lymphoma something which I have been fighting ever since. In May 2009 I was told that I only had months to live which caused me much distress. I read an article in a newspaper the other day which said that the life expectancy of people diagnosed with Non Hodgkins was 520 weeks, thats 10 years in old money. However 12 years on I am still here but I must admit to having some very black moments at times and believe you 3 in the morning is a very lonely time and many is the time I have wondered if I am on borrowed time. I would like to say a special thank you a very special friend whose love and support has and still does mean an awful lot to me.

As to the future - well I do not think I will be around for another 60 years but I have no intention of giving up the fight, and one chapter and book will be closed and another one will start.


Friday, 25 November 2011

Some good news!

Have just come back from the Royal Marsden Hospital with the results of the latest scan. I am pleased to say that the tumour has not spread but more importantly there is no evidence of any new tumours.

I find the weather at the moment incredible. Its my birthday next week (my 60th yes I am getting old!) and this time last year we were walking through snow. This year it seems that November will be the warmest on record and December seems to be going to follow the same pattern.

Wonder if there is any truth in the old saying 'In like a lamb out like a tiger, in like a tiger out like a lamb' only time will tell.


Tuesday, 1 November 2011

Another month!

Another month has flown by since my last entry!

The only excuse I can give is the very unseasonable warm October we have had, although we have had two slight frosts.

Have just started the next course of Etoposide at the Marsden. However it is a slightly reduced doseage as my kidney function test is not as they would wish it to be, also my blood pressure is elevated.

This is (or could be) a momentous month for me as I reach 60 on the 29th, now do I retire or stay working until I qualify for a state pension as well as a company one? Do I want to stay living here or move? If I move do I move up north to be near my daughter in Hull or do I go west to be near a very special and much loved friend?

Decisions decisions ............


Monday, 3 October 2011

Time is flying by!

Have just looked and it was the 23rd August that I last made an entry in here!!!!!

Time just seems to be flying by at the moment. Mind you quite a bit has happened.

My daughter managed to pass her driving test and has got her self a car and drove herself back to medical school in Hull. It certainly made the journey back easier as we were able to split the load between two cars. Its only when you do this thing that you realise just how many things a student needs to have.

On a personal level I have now had two months of treatment with Etoposide and the only side effect has been hair loss. Not complete hair loss but quite considerable so I now practice constructive brushing! More importantly though I am pleased to say that my tumour has shrunk so thinks are looking good - at least for the moment.

My mind has also been active trying to decide if I should retire when I reach 60 (this November) or soldier on until I reach 65. At the moment I think the pros and cons sort of balance so no decision has been made.


Tuesday, 23 August 2011

Half Time!

Well its not a month since my last entry just two weeks hence half time!

Following the football theme (well sort of theme) I am pleased to say that my team are so far unbeaten in there first season in the Championship and in a brand new stadium as well!

Have finished the first two weeks treatment and now have two weeks off, so far no problems.

Some of you may be aware that I am not a great lover of TV and prefer listening to the radio. Since the local comercial stations have all morphed in to a bland radio station called Heart the only local radio worth listening to has been the BBC ones. Sadly however this could be just about to change due to funding issues. The BBC Trust are due to anounce a proposal on September 21st to end local broadcasting after 7 pm on Mondays to Fridays and 2 pm at the weekend to be replaced by a pan england sustaining service which may well sound just like Radio 2. At the moment my local station (Kent) provides a very good range of programmes during the whole day including the legendary Roger Day in the evening and the world will be a lot sadder place if that was to end. In fact if I lived in a town not that far from here I could sign a letter of protest as 'Disgusted of Tunbridge Wells' but I will have to make do with just 'Disgusted'.

On the subject of 'Disgusted from Tunbridge Wells', a saying that has passed into newspaper folklore. There never actually was such a person! Aparently one week the local paper had very few letters to print so the editor asked staff to invent some and one journalist rather than make up a name came up with the disgusted tag.


Friday, 12 August 2011

Another month has gone by!

Time seems to be flying by this year with hospital appointments and with my daughter home from medical school it seems like only yesterday it was Easter!

Anyway thats no real excuse for not updating this blog but its the only one I have got so it will have to do! There was also the matter of having to go to work!

The PET scan and both biopsies showed nothing that was not already known so treatment started on August 8th. As I am on a randomised trial the computer chose the drug for me or to be precise the choice was either Lenalidomide (trial drug) or another one of the physicians choice. As I was selected to have physicians choice I have been given Etoposide in oral form as it is very difficult for me to have anything by IV as I have very deep and hidden veins which also makes blood tests extremely difficult, the record is 12 attempts so far.

As I said treatment started last Monday and I had to be at the hospital by 9 in the morning. The day started with a blood test followed by a wait of several hours for the result and to be seen by the doctor. This was than followed by another wait of several hours waiting for the drugs to be dispensed! The doctor prescribed the medication on a 14 days on and a 14 days off basis but the pharmacy said no its 21 days on and 7 off! This caused even more delay but it has now been resolved as the 14 on and 14 off basis.

One of the possible side effects of this drug is hair loss but I had a hair cut on Tuesday but it seems to be growing again so what will be will be! Last time I lost my hair it grew back curly which everyone seemed to like, every one except me that is.

A very special friend has been in hospital this week for a knee operation and to say I have been worried is an understatement but she is home now but I am still worried for her.

Anyway I promise I will try and do another entry soon but I have a team meeting and a finance directorate meeting at work next week so its going to be another long week.


Wednesday, 13 July 2011

One month on!

Its exactly one month since my last blog entry.

A lot has happened or seems to have happened in that time.

As you are aware my cancer has been in remission for the last 18 months thanks to a drug called ofatumumab. You can therefore imagine how gutted I felt when I was told that my cancer was beginnining to spread again. I was offered two choices, the first was to have repeat treatment with ofatumumab but that would mean going cap in hand to the governments cancer fund. There is no guarantee that they would agree to fund it despite it now being a licenced drug for the treatment of NHL.

The other option was to go to the Royal Marsden Hospital where they are undertaking a trial of a drug called lenalidomide and I am hoping to be included in this trial. This drug is a derivitive of thalidomide and I have been reassured that it is safe and there will be no chance of history repeating its self.

I am having a PET scan next Wednesday as part of the acceptance procedure.

Sorry if I have not commented on any blogs recently but as I said earlier I feel completely gutted.


Monday, 13 June 2011

Thats my contribution!

For more years than I care to remember, well 40 anyway I have been a member of the Co Operative. This is mainly due to the fact that its the nearest food store to here.

In the post today I received my yearly statement of profits and this year I earned the amazing sum of £8.06! On this I paid the princely sum of 4p tax!

Apart from the fact that it probably cost more than 4p to collect, is this my contribution to the national debt? If so I expect a good return on my investment!

Sunday, 29 May 2011

Pony Express

You have probably seen the story recently in the press about the man who tried to take his horse on a train in Wales.

This reminded me of an incident a few years ago when I was asked by a customer how much it would cost to take a sheep in a wheelbarrow on a train. Not one to be thrown by customers strange requests I replied that the standard Acompanied Animals and Articles fare would apply. I did not even think the question was genuine.

I was therefore amazed the following morning when the customer returned and what did he have with him-yes a sheep in a wheelbarrow. I never did find out the reason why they wanted to take a sheep on a train, but than there are some strange people out there............


Thursday, 5 May 2011

The ages of man

or I suppose to avoid being sexist this should really be called The ages of men and women-oops should that not be women first but thats a sexist remark in its self!

Anyway when we were young children we all played games pretending to be a grown up. As the years went on we grew up and pretended to be older than we actually were to get to see x rated films and enter that inner sanctum of human life-the pub. None of this however stopped us from trying to get child fares on public transport did it!

As the years went on a lot of us lived by the maxim of that well known advert 'act your shoesize not your age', if that were true I am still in puberty---if only!

Even to this day it still goes on- I had my hair cut today and was given a pensioners discount! This caused me to stop and think (extremely fleetingly) should I be honest and tell the truth or should I celebrate my good fortune and spend the balance in the pub. Not going to say what I chose but lets just say that it quenched my thirst!

However it did give me time to ponder this- I am not 60 until November but please tell me I am not that old-----------someone please!


Thursday, 28 April 2011

You could not make this up-honestly!

Whats just over a metre tall, bright red and can be seen in streets throughout the country. if you dont know sorry but I can not tell you!

Oh ok then I will tell you-its a post box! There was an article in todays Metro newspaper saying that someone had rung Royal Mail to ask where his nearest post boxes were only to be told that they would not tell him as 'this would undermine their commercial value'. Surely telling people where they were increases there use rather than diminishing it!!! Surely if anyone wanted to know the location of a postbox a quick look on Google earth at the desired location will show them!

In my mind I have the vision of men wearing dark glasses, hat pulled over the eyes and a trench coat saying something like 'Psst want to post a letter, I will get Luigi and the boys to deliver it..'

Sounds like another example of the inmates running the assylum to me.

It appears that summer is over at least for the time being and whilst not being a fervent royalist I think the happy couple deserve some sunshine on there big day. There will be plenty of time for the storm clouds to gather over the years but lets hope they don't.

Took myself of to Rye in East Sussex today to have a look at the market there and must admit to being favourably impressed especially when compared to Maidstone market. Thought I might get some lunch at the famous Mermaid Inn but the cheapest lunch on offer was £21! So settled for a can of Coke and a packet of crisps-shere indulgence! Took some pictures which I have not downloaded yet.


Wednesday, 13 April 2011

Its been ages....

Well it has been ages since I last posted. Life seems to be dragging its normal way although we have had a couple of warm spring like days recently, however true to form its now turned much colder again. I was very happy last night. I do not remember if I have mentioned it on here but I follow Brighton & Hove Albion football club and last night we beat Dagenham 4-3 so that we have reached 90 points and are promoted to the Championship next season. We also move in to a brand new stadium at Falmer in July so things are looking good! I have also been very concerned about a proposal by the BBC to replace most output of there local radio stations with a relay of Radio 5. I realise that there are good and bad BBC local stations but in this area we are lucky to get BBC Kent which is one of the best. In the evening they broadcast 3 hours of the best radio around with Roger Day- its a brilliant show. The rest of the output is very good as well and the line up includes Dave Cash (DC on the BBC). Health wise everything is going well, well almost. My right hand and arm are swollen and having seen three doctors and taken three lots of treatment it is still no better. It seems to go down for a couple of days and than swells up again. The good news is that The Marsden did a scan on it and the lymph glands are all normal so its not a return of NHL. I managed to get a bargain pair of shoes on Amazon the other day. Since going through chemo my feet have become larger, I now take an EE fitting. I saw this pair at a sale price of £15 so I thought I would go for them. When I ordered them I got a discount of £10 so I have a new pair of shoes for £5 which I think is rather good value! Andy

Thursday, 17 March 2011

Some good news

I have the result of my latest scan and I have been told I am in complete remission!!!!

Sometime ago I mentioned that the 5 year old daughter of one of my facebook friends has aplastic anemia. She is now undergoing bone marrow transplant at Bristol Hospital and her mother says she likes receiving cards. If you would like to join me in sending a card to is
Daisy Meely
Level 7 BMT Ward
Bristol Royal Hospital for Children
Upper Maudlin Street

I am sure she will apreciate it, if you wish to read more there is a facebook group called Daisy Meely Trust. I have been very lucky with my treatment and I sincerely hope that Daisy has the same luck


Sunday, 6 February 2011

A cure for cancer?

It is not often that I feel the need to buy a Sunday newspaper or on any other day come to that as there are plenty of free newspapers uch as The Metro and Kent On Sunday as well other media sources.

However today whilst browsing in the supermarket today I noticed the headline in the Sunday Express stating that in the next 15 years cancer deaths will be the exception rather than the rule and it will be controlled in a similar way to diabetes etc.

The article went on to say that there are some 500 new cancer drugs coming on to the market and the future looks bright, however they did sound a note of caution that whereas the treatment may be there the funding for it might not be. This is something that concerns me greatly as you may remember that back in 2009 I was only given months to live but thanks to treatment with a trial drug I have been back at work for 15 months now. This drug has now been licensed for treatment but the NHS will not fund it! Who are the people who make these decisions that money is more important than someones life.

It is a sad fact that 1 person in 3 will be affected by cancer and have recently lost two friends and have heard that 2 people I know at work are in the early stages of cancer. Whereas I consider myself very lucky to still be here thanks to a trial drug and the love and support of friends. Sadly not everyone is going to be so lucky.


Sunday, 30 January 2011

Sad News

I am sitting here reeling from the very sad news of the passing of one of my fellow bloggers.

Angie Marshall has passed away just three weeks after celebrating her 60th birthday. Her blog was like a breath of fresh air in these troubled times, and Angie if you are reading this I can hear you at the back! As well as reading each others blogs we did exchange occasional e mails about things which amused us.

RIP Angie xx

Saturday, 22 January 2011

Sad news

Have just heard the sad news that one of my fellow bloggers and Facebook friends Daria Maluta passed away today after a courageous fight against cancer. My thoughts are with her family and friends.


Monday, 10 January 2011

New Year

Well we have finally made it into 2011!

I have to say that the Christmas and New Year period has been very traumatic for me and if I needed proof that the decisions I have made are the correct ones than it certainly has been.

At the moment I am not going to say any more but those I have chatted to over the holiday period know what is going to happen this year and I would like to say a big thank you for your love and support it has meant rather a lot to me.

Healthwise I am pleased to say that I have no symptoms but the three monthly cycle of CT scans and consultant visits starts again on 14th February at Maidstone followed on the 18th with a 6 monthly check up at the Royal Marsden. Only I could spend Valentines day having a scan and not with someone special... oh well theres always next year--I hope.