Launching Meso 100 Winter Walk Campaign 2015

One year ago Jackie and Richard Elsom launched the Meso 100 Winter Walk Campaign to raise funds (and awareness) for vital research into Mesothelioma for Mesothelioma UK.  Last year the campaign raised over £2,000 which was an amazing achievement!

Sadly in September of this year Richard, who was a four and a half year survivor of mesothelioma, passed away.  Paul and I met Richard and his wife Jackie at the Papworth Mesothelioma Support Group.  We will always remember Richards strength, positivity and most of all his sense of humour.

The initiative of winter walk is a simple one!  100 steps for 100 pennies.  100 steps might not sound like a lot, but for someone with a lung condition like mesothelioma 100 steps can be an impossible task.  Mesothelioma can leave a sufferer breathless and tired during only the simplest of tasks.

This year, at the request of Jackie, my husband (Paul) and I are going to be running the campaign.

Paul is a mesothelioma survivor of three years.  He was diagnosed in 2012 at the age of 34.  In a nut shell Paul's disease was found by accident while the hospital were investigating him for something unrelated.  A few CT scans later and one needle biopsy and Paul was diagnosed with Mesothelioma.  Following diagnosis, Paul had more scans, a VATs biopsy and then a major debulking operation.  Within a month of his operation he was advised to start chemotherapy which finished in April 2013.  Since then, and confirmed by two and now three monthly checks, Paul has been stable.  

Paul is not your average mesothelioma patient.  His age, good health and no history of asbestos exposure make him unusual.  

We are a young family with our son who, at diagnosis, had yet to turn two.  He has just turned five.

Since completing treatment it has been both Paul and my hope that we would be able to raise awareness of mesothelioma with our 'out of the ordinary' story.  We hope that heading up the Meso 100 Campaign this year will add to this hope. 

So please, next time you go out for a walk, count those 100 steps, think of us and donate your 100 pennies!

Text SWPX78 £1 to 70070

https://www.justgiving.com/Mesothelioma-UK-Charitable-Trust1

Find us on Facebook - Meso 100 Campaign

Follow us on Twitter @meso100campaign

We wish you all a Merry Christmas and a very Happy 2016!

December Emotions

December is upon us and another year is almost over!  December for the last few years, for us, has been a particularly busy month.  This year is no different, but over the last few days I find myself experiencing a variety of emotions.  All normal for the wife of a terminally ill cancer patient and Mummy of a (very soon to be) five year old.  But I found myself compelled to write them down.

The first event for us in December is tomorrow, our now not so little boy turns five!  Yep, a whole hand and I can't believe it.  It doesn't really seem five minutes ago that I was sat here 37 weeks and 3 days pregnant with the knowledge I would be induced the next week (due to high blood pressure).  Ethan had other ideas and entered the world the very next day via emergency c-section.  His birth is still somewhat of a blur to me.  I've just read him the book "On the night you were born" a lovely book which we gave him on his first birthday.  I'm sure tomorrow he will be hugely excited and we will be only too happy to help him celebrate and spoil him rotten.

Ethan hadn't even turned two when Paul was diagnosed with Mesothelioma.  No one could guarantee that Paul would see Ethan turn three or four and here we are at his fifth birthday.

Next week, once Birthday celebrations are over, we are taking Ethan away to Center Parcs Winter Wonderland.  Our pre-Christmas holidays there have become a tradition.  In 2012 before Paul's diagnosis we had booked a weekend in November to go.  Once Paul was diagnosed we thought we would have to cancel, but we were lucky it fell between operations and we were given the go ahead we could have our holiday.  In 2013 and 2014 we booked mid-week breaks in December and this year we decided to do the same.  Now Ethan is in full time school we had to ask permission of his Headteacher to take him out of school.  But given our exceptional circumstance we were granted that permission.  We expect Ethan will have a fantastic week with visits to Elf Academy, Father Christmas Woodland Workshop, Fireworks and lots of other Christmas related excitement.

After our week away come the Christmas Parties and the excitement of finishing school for the holidays.  More so this term as when Ethan returns to school in the new year he will actually be returning to his brand new, all singing, all dancing, brand new build school!  We are all very excited to see it.

Then the main event of December will be just a stones throw away.  Christmas!  Just a few days before will mark the third anniversary of Paul starting his chemotherapy.  We will never forget Christmas 2012 because of the horrendous first cycle side effects he suffered.  But again just like Ethan's Birthdays no one could guarantee he would see Christmas 2013 or Christmas 2014 and here we are staring Christmas 2015 in the face!

Mesothelioma, the terminal cancer Paul has is never far from our minds.  Some days are harder than others and bring a mix of emotions.  Happiness, sadness, gratefulness have all rated high on my emotions list this week.  Happiness that Paul has survived to see his son turn five and to see Christmas 2015.  Sadness thinking about what 2016 could bring and will things still be the same in a years time.  Gratefulness for all the things we have been able to do and achieve in 2015.

I know that I am now not the same person I was in October 2012, the cancer diagnosis of my husband has changed me.  I know I am stronger than I every imagined I could be, but also feel things much more emotionally than I ever have before.  Our lives over the last two years, while Paul has been treatment free, have been just the best years of enjoying our child grow.  No doubt, whatever 2016 has to throw at us, we will get through it, together.

Check Up Day

Yesterday was Papworth scan and check up day.  We had booked ourselves a later appointment so that we would have time to take Ethan to school and get t0 Papworth.  As I had been ill earlier in the week, I was unsure right up til yesterday morning if I would actually be able to go with Paul but it all worked out well.  We arrived just before his scheduled time to go for Xray.  Paul went up and I waited in reception for him to return.  Once he returned we went into the clinic where Paul was weighed and we sat down to wait for his appointment time.

We saw Claire (our Specialist Nurse) and Dr Gilligan (the Oncologist) take another patient into a room and Claire mouthed to us that we were next.  Well, we were sat there for another 45 minutes before they came back out.  We didn't mind though as we said this was the first time since Paul's very first appointment, at diagnosis, that we have had to wait any length of time.  We sometimes even get seen early.  Another reason why we always say Papworth is above and beyond!

We went into the room with Claire and Dr Gilligan.  Paul was asked how he was feeling.  He mentioned that over the last few months, since his last appointment, he has noticed an increased amount of periods of pain in the area of his operation.  These aren't anything too much but Paul has noticed the increase.  Dr Gilligan told us that he had checked Paul's x-ray back to the last one he had and even back to 2 years or so ago and he can see no change what so ever, which is remarkable.  However they have always said that x-rays don't show the whole picture and Paul is the best marker on what is actually happening inside.

He therefore gave Paul several options about having a CT scan so that a more detailed picture can be drawn about what is actually happening and if (fingers crossed) the mesothelioma is growing.  He gave Paul the choice of having that arranged straight away, at the time of his next checkup or not at all if he chose.

Paul has decided, with the guidance from me of Chrsitmas being just round the corner, that he will have a CT in the new year and we will attend Papworth in late January for the results.

A CT scan will give us a much more detailed picture of what is happening but it also scares me that we will find out just how much growth (or not!) there has been.  The thought of Paul making a choice about more treatment when he is so fit and well, meaning he could spend 6 months and even up to a year feeling poorly, will really be a very difficult choice.  They have always said that Paul would present with symptoms before the Mesothelioma grew too much, so I will hang on to the fact that Paul is just in such great health it can't really have grown too much.

After Dr Gilligan left the room, Claire, our really lovely Specialist Nurse said that she had seen Paul's X-ray and they really do look very clean.  She said Dr Gilligan had even remarked "Does this chap actually have Mesothelioma?!!"  Just that sentence sums up just how great Paul is doing!  I've said it before and I'll say it again.  Paul has and never will conform to the statistics of Mesothelioma!  What the future and 2016 will bring us is anyone's guess, but I can only hope that the CT scan comes back with little or no growth!

We can now look forward to our little boy turning 5 and our pre-Christmas Winter Wonderland break to Center Parcs.

Anniversaries

Apologies once again for not writing for so long.  Normal life gets in the way of my blog writing.

We have just had a great summer with Ethan and been very busy enjoying the holidays before he started school at the beginning of September.  I am pleased to say he has settled into school very well and from what we can gather he is enjoying it.

The end of September and the beginning of October mark several anniversaries for Paul and I.  The anniversary of when we first met was 11 years ago on Sunday.  Our Wedding Anniversary is tomorrow, we have been married 9 years.  

The end of September also marks the start of our Mesothelioma journey.  Three years ago Paul had his first biopsy and on the 4th October 2012 Paul was diagnosed.

Three years of survival is a massive achievement given the horrifying statistics of 12-18 months.  Although we have known from the beginning that statistics don't apply to Paul given his young age and good general health.

Anniversaries of this sort make you think about the past year and look to the future and what it might hold.  Our lives have been mostly normal with only a few hospital scans and check ups, at all of which Paul was given the good news that things looked and remain to look stable.  His general health has been quite good and to those that see him on a day to day basis he looks like anyone else.  Fatigue remains his only daily reminder his health is not 100%.  Afternoon naps to help have become a daily occurrence.  All in all we cannot grumble.

At the beginning of the year Paul, Ethan and I appeared in the local papers along side another Ely couple who were raising awareness and funds for Mesothelioma UK.  It was with deep sadness yesterday that we learnt that Richard had unfortunately slipped away.  We met Richard and his wife Jackie at the Papworth Support Group.  Richard fought his battle with Mesothelioma with dignity, strength, positivity and a great sense of humour.  Paul and I will always remember some of the jokes we heard him tell.  We have and will remain to draw inspiration from Richard and Jackie and their fight with Mesothelioma.  Our thoughts at this very difficult time of course remain with Jackie and her family.

Our TV appearance and Asbestos in Schools!

If you don't already know, yesterday Paul, Ethan and I were included in a section on Asbestos in School on the BBC2 and BBC News Channels programme Victoria Derbyshire.  A few weeks ago the BBC came and spent the day filming with us and we have to say we were very pleased with the editing they did and how we came across on the small screen. If you haven't already seen it the whole programme can be viewed on iplayer and the interview section (including our part from 12 mins onwards) can be seen here http://www.bbc.co.uk/programmes/p02txdl6

We have had so many lovely messages from friends and family since our appearance and we thank each and everyone of you that has watched, shared and commented or sent us messages.  They mean the world to us!  I shed tears on several occasions yesterday, at seeing myself and Paul and of course the star of the show, Ethan on the telly and also at the lovely, kind and overwhelming words from everyone that watched it.

Social media went mad late yesterday and this morning and I feel I need to try and keep up the momentum and keep Asbestos in Schools in the spotlight.

I have watched the programme several times now and would just like to highlight a few things I noticed from the programme.

Sarah Lyons from the NUT said they did not feel the current guidelines for schools were enough and the recent review did not go far enough.  There is no long term plan for removal and there is no reason why asbestos should not be removed from all schools.  Obviously it will need to be a phased removal and deal with asbestos in the worst condition.  She also said the latest figures show 86% of schools still contain asbestos!

Professor Julian Peto, Professor of Cancer and Epidemiology said that the average person his age (born in 1945) have 100,000 asbestos fibres per gram of lung but people born in the 1980s have more than 100 times less.  He also said 1 in 150 men his age die from Mesothelioma but of those more recently born the figure is 1 in 10,000.  When he was asked about the risks he said everyone is a pupil and that it is more about pupils than teachers.  Also the risk goes up after 30 years from exposure.  I find this very scary for our children, obviously at a young age you have years and years of life left and therefore years and years of risk if you are exposed.

Jonathan Francis, Joint Chairman, Asbestos Testing and Consultancy said every school needs to have a good survey but that they are still finding a lot of schools are not managing asbestos safely.

Eugene Symonds the Headteacher from West Kidlington Primary School in Oxfordshire said although he was satisfied the asbestos at his school was of no significant risk he did not feel it was right it should still be in schools but that they have to operate within the guidelines they are given which tell them the buildings are safe for children to learn in.

Watching and hearing all of the above, left me with absolutely no doubt whatsoever that we have done completely the right thing for our little boy Ethan who is due to start school in September.  We applied for him to attend a school that is currently being constructed and will therefore contain no asbestos.  I challenged our closest, catchment school and whilst they are 'following the guideline' and have asbestos that is low risk, any risk for me is still a risk and whilst that risk is avoidable we won't be taking it.  I feel that the above professionals would probably agree with me!

Where has the year gone!

I cannot believe that this is my first blog post of the year.  Where is 2015 going?!?  It is almost the end of June and we have had lots and lots of adventures already.  Paul had a Papworth check up back in February and again was declared stable.  His fatigue remains our main daily reminder that all is not well, but we work round it as best we can.  He has a nap after lunch most days now.

We have had several trips away this year already.  Weekends away for Easter to the seaside and for the May bank holiday to Great Yarmouth.  We had a weeks holiday in April to Center Parcs and we are not long back from a couple of nights away taking Ethan to Thomas Land!  We all thoroughly enjoyed ourselves.

At the beginning of the year Paul was interviewed for the Cambridge Evening News and also featured in our more local paper along with Ethan.  This has bought about a thirst to raise more awareness.

A couple of weeks ago now we had a BBC producer, presenter and cameraman spend the day with us interviewing and filming for inclusion on the BBC2 show Victoria Derbyshire.  Tomorrow the programme will air (from 9.15am) and will highlight the Asbestos in Schools issue.  We are so very pleased that we have been able to play a part in raising awareness on a nationwide programme.  We hope we have done it justice.