Wednesday, 31 December 2014

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

Thursday, 13 November 2014

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!!

Saturday, 1 November 2014

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......

Monday, 13 October 2014

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.

Thursday, 9 October 2014

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)

Monday, 6 October 2014

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.

Thursday, 25 September 2014

Update, almost 2 years since we first heard the C word!

I'm really not very good at keeping up with this blog.  I apologise and I will 'try' and improve.  Looks like April was the last time I updated.

Paul has had a further operation for his original problem since then and, despite the surgeon saying it would take a long time to recover, he seems to have got over it quite fast.  It was on the 19th August and my Brother's Wedding was on the 30th and he was back to full normality then.  It has fixed the problem, we hope, and we now need to just get his bloods checked and see if his iron levels have restored to normal without him having to take any tablets.

He also had a Papworth check up and xray in July which was all ok.  It was discussed that now he is well over a year post chemo it would be sensible to consider a CT scan to see the complete picture.  If there is growth then chemo will be considered too.  Since Paul's above op was already booked the CT was put off and will be discussed next month at his check up.

Paul is once again having a few problems at work with is boss who we are giving the benefit of the doubt too.  He just does not seem to understand how Paul must be feeling.  Although Paul looks absolutely fine outwardly, his body IS growing a deadly cancer.  He feels tired nearly all the time and working just one day a week is quite hard.  He chooses to do it as it keeps his hand in and he gets to see his work mates.  Paul's (and my) priorities have changed now and life has to be what we want it to be and how we want to spend it.  We just do not know when Paul's 'ok' health could be ripped away from him and so work is further down the priority list than it used to be.  Spending time as a family doing things we may not be able to do at a later date take priority over anything else.

The 28th September (Sunday) marks the 2 year anniversary of Paul's needle biopsy, our first visit to Papworth and the first mention of the C word.  It is hard now to recall how I really felt on that day, disbelief and hope that the next week would bring good news and we could put it all behind us.  The 4th October marks 2 years since diagnosis, a day I remember very well.  The weeks and months following diagnosis were just something we 'got through' in a whirlwind.

I have looked on the Cancer Research website at the statistics for Mesothelioma survival.  Not something I wanted to look at in the beginning, but as time has gone on I certainly feel lucky that Paul has and is surviving this cancer and we hope this will continue for a while yet.  It states that statistics show (and I know they are just that, statistics) 20% of those diagnosed with Mesothelioma survive for 2 years and only 8% survive for 5 years.  So our goal after 4th be in that 8%!!!!!!!!!!!

Saturday, 19 April 2014

Good news all round!

I'm here again!  with an update on this week.

On Tuesday we took Honey to the specialist vet to have blood tests.  He was happy with her overall condition and although she weighs the same as she did last month he said that weigh gain will be a steady and gradual process over a longer period of time.  He took blood and rang with the results on Thursday.  The steroids are still making the liver enzyme results drop which is good news and they are now down to three times normal and last time they were four times.  Another check up and blood taking in six weeks.

We had a long day on Wednesday.  After dropping Ethan at my parents and travelling to Addenbrookes we then had an hour and a half wait because the Consultant was running behind.  We did however come out with the result Paul is happiest with.  They will repeat the HALO operation he had in October last year.  His condition 'down there' isn't as bad as it was then so hopefully it will be successful this time round.  As he is having an op we then had to go to pre-assessment and then to blood testing.  We left the car park at Addenbrookes about four hours after arriving.  We then went to do a bit of shopping (just in the Asda there) and didn't arrive home til about 5pm.  It felt like a long day.  

The big day then arrived.  After three months we were going back to Papworth for chest x-ray and to see the Oncologist.  They are resurfacing one of the roads we usually go on so we had to go a long way round meaning we left earlier as we weren't too sure how long it would take.  We were at Papworth slightly early but went in and got the x-ray done.  We were called earlier than our appointment time, which was great.  We saw Dr Gilligan and Claire, our Specialist Nurse.  Dr Gilligan said he had compared x-rays, this times to January's and also to the one they had from last July and he was very happy and that coupled with how Paul is feeling means it is good news all round.  We now have another three months before going back.  HORRAY!

After passing on the news to those that were waiting we went on the Park and Ride into Cambridge.  We did some shopping and had a celebratory lunch out.  Another long day!

Yesterday we just rested and relaxed and caught up with stuff at home and everyone had a nap!

Now we have our first holiday of the year to look forward to in just over a week.  We can now also book a holiday for June/July time, although we need to decide where to go first! 

Monday, 14 April 2014

Long time, no blog!

Every time I write a blog I decide that I must do it more often!  I looked today to see when I last wrote and it was the end of January, nearly three months ago!  Where that three months has gone I do not know, I really must write more often (here's hoping)!

So what has happened in the last three months, well quite a lot.......and here we are, by the end of the week we will know again if Paul's Mesothelioma is stable or not!

At the end of February Paul decided that work for him was getting too much, mentally and physically.  He is not the same person he was before diagnosis and life has changed, priorities have changed.  After much thought and consultation with medical professionals he decided that handing in his notice at work was the right thing to do.  He finished work the week after making the decision and immediately felt a weight had lifted.  Having said that last week he went back for a day and a half to help out and he is there today.

Around the same time I mentioned to Paul that Mesothelioma UK in March do something called Moustaches for Meso in March to raise funds.  Paul decided that it was something he could do and it would be great to raise awareness and funds for them.  He succeeded with the challenge and raised almost £600 (including gift aid) which is fantastic.  He was in our local paper and the Nursery our son, Ethan attends saw it.  They are doing a sponsored garden obstacle course later this month with the children, also to raise funds for Mesothelioma UK.  This will be great as it will raise awareness amongst the children's parents and hopefully their wider families also. To sponsor Ethan (who is just 3 years old) please visit Thank you :)

As Paul finished work at the end of February he was able to attend our nearest Mesothelioma Support Group which he thoroughly enjoyed and met lots of other fellow patients.  Last Friday all three of us attended and it is lovely to actually physically meet people that are also following the same path as us.  As the majority of Mesothelioma sufferers are a lot older that Paul it is great to feel that we can help out and make it known that this is now not just an 'old man's disease' it can and does effect the young.

We had good news at the vet.  Our cat was diagnosed with Inflammatory Bowel Disease but since being on steroids her condition has improved.  We have blood tests for her tomorrow to check her progress.

This week is busy with hospital appointments.  Paul's operation at the end of October 2013 was not fully successful and he has become anaemic again!  We never received his check up appointment which I had to chase to get at the beginning of the year, only for it to be cancelled and moved into May.  Once Paul was found to be anaemic again I rang and they were able to move it to this week.  Despite our GP faxing the hospital about 4 weeks ago now to ask for a more urgent appointment nothing has been done about it.  So Wednesday is his appointment at Addenbrookes to see what they have to say.  I will also be finding out how I can put in feedback on the above, as I really feel it is not good enough!  We have never even had a call to say they were unable to provide a sooner appointment.  This and our experience through chemo really makes me feel that unless patients at Addenbrookes have someone to fight their corner and check stuff is getting done correctly, nothing really does.

The 4th April was a year since Paul's final chemo session and 18 months since diagnosis.  This Thursday we will return to Papworth for Paul is have an x-ray and see his oncologist (or one of his registrars).  He says he feels the same as he did in January and visibly unless you know he has terminal cancer you would never ever guess.  Let's hope we get good news and another three months hospital visit free (well, at least for cancer appointments anyway)!

Thursday, 30 January 2014

Bit of an update on us!

I haven't written for a while as there hasn't really been anything significant to report.  But today I have a bit of extra time on my hands where I can't really do much as we have men in replacing all our windows and doors. So I thought I would write a little update for you all.

Christmas seems an age ago now but we had a lovely family time staying with my parents and Ethan had a thoroughly spoilt time.

New year is usually a  non-event in our house anyway and the last few years have been nothing different.  I suppose having a 3 year old that you know will be awake by 6am means we are always in bed before midnight.

On 16th January we went back to Papworth for Paul's x-ray and appointment with the consultant for the results.  Everything went well and they have extended his next appointment to a 3 months gap which is great.  It feels more liberating to have 3 months rather than just the 2.  Paul continues to feel well in himself although sometimes fatigued he is now just working 3 days a week.

Ethan has started Nursery 3 mornings a week and after 3 weeks or so he is settled and loving it.  We knew he would, but after the first week he had a wobble and said he didn't want to go.  He would cry as we were walking there and cry more when we got there.  They said he was fine after 5 minutes of being left but each time it felt awful leaving him.  This past week has been a lot easier.  He is now into the Nursery routine and is more than happy to be left, and knows we always come back and fetch him.

The Nursery he is attending isn't the one we thought he would go too, but I think all in all it has definitely been a blessing in disguise that he was unable to go to the original one.

We have booked our first holiday of the year for the end of April, the first of many in 2014 I hope.

Over the last few weeks there has been some sad news amongst my virtual friends in the Meso community. Jan Egerton unfortunately lost her battle after 10 years.  Jan wrote a blog about her meso journey and it has, and will forever be, a beacon of hope in our lives.  Rest in peace Jan, my thoughts are with your husband, Gary and your wider family for whom I am sure the coming weeks and months will be very hard.