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.
Friday, 13 November 2015
Tuesday, 22 September 2015
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.
Thursday, 18 June 2015
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!
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!
Tuesday, 16 June 2015
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.
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.
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
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......
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......
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