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.

Here comes 2015 but 2014, you were great!

As today is New Years Eve, I thought I better blog.  Maybe a resolution for me could be to blog more often.  I wonder how long it will last.....

Some people may look in on our lives and see an envious amount of holidays and days out, no rushing to work or school (just yet).  2014 for us has been a great year, the best year since Paul's diagnosis.  We can probably count the hospital visits we have had on just our hands and not need our toes too and Paul has only had one operation (non-cancer related).  Holidays with our son (now age 4) have been plentiful and days out with friends abundant.  We have had a great year.

Mesothelioma is, however always there in the back of our minds.  When might our run of great holidays and days out end.  For Paul and I Mesothelioma is ever present.  Not many people see the tiredness he experiences, or know that most days he has to have an afternoon nap, just to make it through the day.  If he has one day without a nap then the next he definitely needs to have one.

The worry of an approaching Papworth appointment to have a scan and see the oncologist.  The enduring fear that this time they might say that more chemo is necessary meaning another 6 months or so on the treatment trail.

So yes to us looking back on 2014 it has been idyllic, a fabulous year.  We can only hope that 2015 will follow suit.  Realistically, tomorrow, I will just be happy to welcome in 2015 along with my husband and son at my side.

Happy New Year to all my readers, may 2015 be all you want it to be xx

Asbestos in Schools

Last week I wrote to our local school, our catchment school to ask if I could obtain a copy of their asbestos reports and management plans.  I obviously explained that Ethan will be due to start school in September 2015 and his Daddy has Mesothelioma.  This week I received a reply inviting me into the school to view the asbestos register.  I made an appointment with their Office and Facilities Manager and this morning I went for the appointment.

They couldn't have been more helpful and had gathered together the register and plans of the school and some other supporting documentation for me to look at.  The register was quite extensive and it was clear that the whole school (parts built before asbestos was banned anyway) had been inspected thoroughly to find, and where necessary, carry out work to any asbestos found.

The areas in the school where asbestos had been found were in a store cupboard, boiler room, flooring tiles and the adhesive used to stick them down.  There is also a query over a radiator and if the inside of it does contain asbestos.  I was shown the store cupboard and the pipes concerned have now been encased so they are no longer accessible.  This is also the case in the boiler room.  Neither of these are accessed by pupils though so they are not a concern to me in this instance.  I was shown a classroom where the floor has been replaced and apparently the floor was scraped, cleaned and re-carpeted.  Any asbestos remaining is now covered.  However, in the same classroom there is a cupboard where the flooring has not been covered (I am unsure of why it wasn't just done while the classroom was?) but it is deemed to be low risk and I am sure they are following all the necessary guidance they need too.  I asked about the cupboard and if teachers are aware about its possible asbestos danger.  I could tell from the ladies face they are unaware but she did assure me no work was ever carried out with teachers or pupils present.  She also showed me the radiator that they have a query about and I believe I have seen pictures of this type of radiator and it probably does contain asbestos.  It is however also encased and therefore not accessible.  

All in all, they are following the rules as far as I can see and they only have asbestos which is deemed low risk.  They were very helpful to me. 

I would urge any parent or prospective parent to ask their school about asbestos (for those schools built pre 2000).  If schools were always asked about it, it would ensure it was at the forefront of their minds and they would all be following the correct rules and procedures.  

My conclusion really hasn't changed a great deal.  Any asbestos, low risk or otherwise is still a risk.  We will do our best for Ethan to avoid that risk however small.  Asbestos has already altered his life and that of his parents enough.  Wish us luck getting a place at the new build school!!

Still stable!!

This week saw us return to Papworth for Paul to have his three month x-ray and check up with his Oncologist.  We were up early as we needed to leave at 8 to make sure we arrived in time for the 9.15am x-ray slot.  As it was half term we made it in plenty of time.

We had to wait a while as they had to find the radiographer and therefore we only just made it back to clinic for the 9.30am appointment.

We were called in near enough straight away by our lovely Specialist Nurse, Claire and Dr Gilligan joined us shortly afterwards.  As soon as he sat down he said he had checked Paul's x-ray and it all looked fine.  In fact he had checked it against last years and he said there was no noticeable change.  He then listened to Paul's chest and again said it was all good.

We did discuss CT scanning again but as Paul's x-rays are showing no change and Paul is still symptom free the mutual decision is to carry on with three monthly checks.  Should anything change between appointments and Paul gets any symptoms then they would always see him again.

We are now 18 months treatment free!

Every hospital appointment now is getting easier.  In the beginning it was truly nail biting stuff to have to go and find out what they had to say.  Now I think we have had 8 stable appointments, which is just great, I can hardly believe it.  Life will never be 'normal' again but the last 18 months have been a great new normal.

When Paul was first diagnosed in October 2012 I didn't know if he would survive to his son's 2nd Birthday or Christmas.  Now we are approaching Ethan's 4th Birthday and although the first Christmas after diagnosis was horrendous for Paul (due to chemo) we can now look forward to Christmas 2014.  Holiday planning for 2015 can also begin.

Claire said Paul was their miracle, let the miracle continue......

A very wet Monday

Today we woke up to rain, rain and more rain.  Not great when you know you have to go out, even if it is just to walk round the corner to nursery.  Ethan and I were both ready to leave the house and the rain got even harder.  I really didn't think we would get that wet, but poor Ethan's coat was soaked by the time we reached nursery.  He didn't seem to mind.

My task list today was as long as my arm.  Apart from the usually housework, cleaning the bathroom and the ironing were achieved.  Yay!

My other important task today was to make the first contact to get it arranged for Paul to have the genetic test to see if he does have the gene mutation which have been proven to link Mesothelioma and Melanoma of the eye.  Paul's Dad unfortunately died of melanoma at the age of 46.  I have put the wheels in motion today for the test to be done.

I have also received a response to my e-mail to JUAC regarding asbestos in schools.  My next task is to write to our choice of prospective schools for Ethan and see if I can find out about the asbestos the school contains and also their management plan of it.  I can only hope that asbestos has been removed since 2008 but the statistic that 75% of schools still contain asbestos doesn't really make me think that will be the response I receive.

Asbestos Awareness and Mesothelioma on BBC Look East Tonight!

Today Paul received a message from our friend Simon Clark who we have met through the Papworth Support Group.  He was interviewed this morning by BBC Look East for their programme tonight. Simon was diagnosed with Mesothelioma around the same time as Paul and has also undergone surgery.  We set our TiVo box to record.  It was a very good interview and I hope lots of people tuned in.  I tried as best I could to get the word out on social media.  Well done Simon!   

I have taken a quick camera video of it which can be viewed here (apologies for any background noise, our three year old was in the bath)

Mesothelioma UK Patient and Carer Day, well Weekend for us!!

On Friday we collected Ethan from Nursery and dropped him off at Grandma and Grandad's for the weekend as we had booked to attend the Mesothelioma UK Patient and Carer day on Saturday in Leicester.  We travelled by train to Leicester and got to the the hotel at about 4pm.  We had a quick walk around the shops and then went back to our room for a cuppa.  We had dinner booked in the hotel which was lovely.  Before we went for dinner we finally got to meet the lovely Mavis Nye and her husband Ray.  For those of you who don't know, Mavis is a five and a half year survivor of Mesothelioma and therefore a huge inspiration to Paul and I.  Mavis writes a daily blog and is highly involved with facebook groups and does lots of campaigning and research.

We also met Mary Hesdorffer from MARF, US.  Paul happened to mention to her briefly about his Dad having a rare melanoma of the eye and she quickly told us about a gene mutation which had been discovered as a link to both of these cancers and could therefore be an inherited disposition for Paul developing Meso.  Well, our minds were then in overdrive!  Mary has said that Paul can be tested and we will certainly be getting in contact with her so we can hopefully get it sorted out.

After our dinner in the hotel we sat chatting with Chris and David who also attend the Papworth Support Group.  That was very nice, as although we have met them before it gave us time to get to know them better.

Saturday morning arrived and we went down for Breakfast.  Mavis saw us and gave me a lovely silver dragonfly for Ethan and a gorgeous dragonfly scarf for myself.  Was a really lovely thought and very unexpected.  Thank you very much Mavis xx

The conference started at 9.30am and we met up with some others that attend the Papworth Support Group.  Simon and Zana, Peter who had also brought Jennifer with him and of course Chris and David who we had chatted with the night before.  It was really lovely to spend the day with everyone getting to know them a bit better.

The conference itself was very interesting.  I can't write about it all as there was just so much but the bits I found most interesting were the Mesothelioma Stats right at the very beginning, Professor Dean Fennell talking about the trials and of course Mavis with her patient story.

Just before lunch the patients were given the opportunity to take the microphone and share their own stories.  I was keen for Paul to speak and tell his story.  Mesothelioma has an average age at diagnosis of 71 and I am always very conscious that people will not know Paul has Mesothelioma unless he tells them.  Paul wasn't too keen on standing up and speaking but he did and I am very proud of him for doing so.  Afterwards a few people did come and speak to us and tell us that they were pleased he had spoken and that they thought we were very brave to have attended.

At the end of the day we went out with a guide and she showed us around some of the interesting parts of Leicester.  It was really nice to have that to do or we would not have really known much about the area at all.  We got to see where Richard III was discovered.

We got back to the hotel and booked a table for dinner.  After dinner we met Mavis and Ray in the lounge and chatted til it was time to go to bed.  It was great fun.  One thing Ray said sticks in my mind and I totally agree it is so very true.  He said 'Mesothelioma didn't know what it was taking on when it picked on Mavis!'  So very true, she is such an inspirational survivor, we are honoured to have met you both xx

Sunday morning we woke up later than Saturday which was nice.  At breakfast it was time to say goodbye to those that were still there including Mavis and Ray.  We packed our case after breakfast and then went out to have a walk and quick look in the shops before our train at just after 12.  We had a nice walk and found the Castle which our guide had talked about the night before but it was a bit too far away to walk to then.

We got the train home and waiting on the station at Ely with Grandma and Grandad was Ethan!  I think he had missed us and we had missed him.

We had an amazing weekend away and learnt so very much and met some truly wonderful people.