My LIVE Facebook video! Our Story!

On Saturday I decided to do a Facebook LIVE video of our Mesothelioma story.  I had been seeing and hearing people on Facebook all week sharing their stories for various reasons.  I had also been seeing the horrendous articles regarding asbestos in schools.  I really felt like I needed to do something to raise awareness that would get attention and actually be seen and heard.  I had gone LIVE several times already on Facebook, for the relaunch of the Papworth Mesothelioma Social Group and for my newly launched Younique business.  I knew it was a fantastic tool.  

The video is below for you to watch and share (via YouTube).  It has now reached over 2k views in just three days.  

Perceptions

I've been wanting to write some posts just lately on the different sides of a family living with a cancer diagnosis.  Two subjects feature heavily at the moment in our lives, subjects that are not necessarily always associated with cancer.  They are survivors guilt and other people's perceptions of a cancer survivor.  I've decided to start with the latter as it has and is causing us much stress.

So, you've faced the tests, the diagnosis, the hospital appointments, the operations, the chemo.  You've gathered information about the cancer and are aware it is terminal, incurable, isn't going away without killing the person you love.  You've looked up the statistics of survival and found they aren't that great, like 12-18 months!

I've always said Paul has and never will conform to any Mesothelioma statistic.  He doesn't fit the average age and he has never been aware of being exposed to asbestos.  So in true, not fitting the statistics we are now just a couple of weeks away from him having survived not 12, not 18, not 24, not even just 36 months but a whole 48 months or 4 whole years!  A massive achievement.  At diagnosis we never thought this would happen, but it has!  We don't really know, how or why but we are tremendously greatful.

Every person that knows us should be pleased right?  Pleased that Paul has beaten the odds and although now living on what can only be described as borrowed time, surviving a terminal cancer diagnosis!

Paul suffers with fatigue every day.  Most days he has an afternoon nap and if he doesn't he is tired the next day.  I can tell when he is tired.  If he is out of the house and seeing people, then he is feeling ok.  If he was feeling rough you would be unlikely to see him.

Why then is it ok for others to judge a terminally ill person as being perfectly OK because they are walking up the street!  Why do people think that even though they know the diagnosis they know exactly how someone is feeling?!  Why do people presume that because your not on your death bed, your not ill!

Some things you just never imagine you will face, when faced with cancer.  This is one of mine!

Cancer has taught me a lot of things.  I'm more emotional now than I ever was, I'd like to think it's made me kinder and more considerate than I ever was but most of all its taught me never to judge until you know a complete story.  Life can be hard, everyone is fighting a battle which none of us know the complete story of.

I know the people with these perceptions of us or Paul will never read this because anyone that does read this is one of our nearest and dearest or a supporter of ours.  Paul and I remain greatful for the abundance of support we receive from family and friends.  Although we are surviving, it is still part of our day to day lives.

Small update!

Apologies to anyone that follows the blog, I haven't written for what feels like ages.  For a number of reasons really.  My laptop is very old and slow and it is very difficult to write anything of much length on an iPad.  Luckily today I bought a wireless keyboard for my iPad and hopefully this will make it easier and more convenient to write.

As a family with a stable, mostly healthy Mesothelioma patient, although the disease is never far from our minds, it seems to be getting easier to put it to one side and get on with day to day life.  We can be a normal family!  Another reason my blog has probably been neglected.

Paul had checkups with X-rays in both April and July.  Both came back stable again.  The three months between appointments seem to fly by.

We have just had a fabulous six weeks of summer with Ethan.  We had two lovely camping trips and several days out and about.  Ethan has now gone back to school in year 1 and will turn 6 in December.

Later this month Paul and I will celebrate 10 years of marriage and in early October Paul will have been diagnosed for four years!

I hope over the coming weeks I will write more.....

CT Scan Results!

We dropped Ethan at school this morning and then travelled to Papworth for our 10.30am appointment with Paul's Oncologist.

We were called into a room with one of his registrars and a nurse just before our appointment time which was great.

The registrar introduced herself and told us she knew we were there for the results of a recent CT scan and that it was good news!  In fact, on questioning it was great news!

Paul's last CT scan (as you might remember from previous blogs) was back on 7th May 2013.  His current scan was taken on 7th January 2016.  Two years and eight months on and a quote from the Radiology report states 'stable appearances with no evidence of disease progression'.

The registrar even told us that she and our oncologist had actually checked back on Paul's biopsy pathology reports to actually check the results did say Mesothelioma.

She was very happy to have been able to pass on good news.  I'm sure we even saw her eyes well up.

We asked for a copy of the CT report so we have hard evidence that the above is correct.  I'm not entirely sure either of us really and truly expected this result and it may not have yet sunk in.  It is amazing news.

We asked our other questions to the registrar and she was able to answer all our queries.

Claire, our specialist nurse, then came to see us.  We chatted and discussed the results and what they mean.  Paul does still have an incurable cancer and no one can say when this stability could change.

So, we went out for lunch and did a spot of shopping before coming home and collecting Ethan from school.

Our next appointment for a check up is at the end of April.  For now we are free to enjoy our lives again and think about some holidays for 2016!

Pros, Cons and Questions

Tomorrow is result day!  Two weeks ago, Paul had a CT scan (the first in two and a half years) and tomorrow we have an appointment with his oncologist to receive the results.

Today, as his wife, I have one hundred million different questions, pros and cons flying around my head.  Questions for if the Mesothelioma hasn't grown and questions for if it has.

Of course we are both hoping for the best but we have near enough as many questions for if it hasn't grown for if it has!  

 

We are fully prepared!

Three years on from first diagnosis and I know a lot more about mesothelioma and its treatments and trials (and where to find the information if I don't know) than I did in the very early days when Paul first had treatment.  

At the moment I am feeling fine.  Three years as the wife of a terminal cancer patient has changed my perspective on life.  Today is today, tomorrow is tomorrow.  We can't change the outcome, we'll roll with it!

And so it begins....Paul's date with the polo mint scanner.....and scanxiety!

Tomorrow we have an appointment at Papworth for Paul to have a CT Scan.  He last had one in May 2013 after he finished his six sessions of chemotherapy.

Since then Paul has just had x-rays on the days of his check-ups and all has been well.  At the last check-up the x-ray was checked back against one from one and two years ago and the oncologist could see no change and in fact not much, if any sign of the mesothelioma.  The oncologist was even heard to remark that did Paul actually have mesothelioma.  He also always listens to Paul's chest and he could find no problems at all.

In the past we have discussed with the oncologist the pro's and con's of x-rays versus CT scans.  We know that x-rays do not give a complete picture but we decided Paul was the best judge as to when he would need to get a complete picture of what was happening inside.  Paul has very little in the way of symptoms from the mesothelioma, fatigue being the biggest problem for him.  Everyone at Papworth has always agreed that Paul would develop more symptoms before the mesothelioma progressed too far.

In November at his check-up Paul mentioned an increase in periods of pain from his chest in the area of his surgery scar.  He therefore decided that he would like to have a CT scan to get the whole picture and since it has been well over 2 years since he last had one, his oncologist agreed.

After tomorrow we will have a wait of 2 weeks to find out the results.  We can only hope that the CT scan will confirm that things are still stable.

If they don't we know we will have a lot of difficult decisions to make.

I think both of us will be more anxious about returning to Papworth on the 21st.

Review of 2015 as we start the New Year!

All in all 2015 has been a brilliant year for us!  Paul had 4 stable results at Papworth, we raised awareness and funds in various ways and for various organisations and we had lots of great family times and holidays.

We started the year on the front of the Cambridge News helping to raise awareness and funds for Mesothelioma with the Meso 100 Winter Walk Campaign.  We are keen to raise awareness of asbestos and mesothelioma so this started the year off nicely.

In June we appeared on the BBC2 Victoria Derbyshire programme on a section about Asbestos in Schools.  We were very pleased with the piece that was aired.  We had a lovely day filming with them with a cameraman, presenter and producer coming to our house.

We also appeared on the patient DVD which the Papworth Mesothelioma Support Group produced.  It is now given out to all new patients at Papworth and at some other hospitals.  Some of the interviews with us have also been used on the Mesothelioma UK's own DVD and on their website.

We made the most of this year with various holidays and days out with our son.  He started school in September so now our holidays will mostly have to be in the school holiday time.

We can only hope that 2016 will be as kind!

Happy New Year xx