Tuesday

Wow! An emotional day all round. It was Marsden Day. We ran to the car park in  pouring Rain. It didnt matter much to me I was soaked anyway having walked louis up the lane. It was 10 to 6 we decided to leave early  because of the bad weather. The journey was a stop start one  on the M25.

Oh dear when Mavis booked in they said Your not due  until tomorrow. But  go and wait in waiting room  and we will sort it. Which they did. But it was a disappointment for them because  they had planned a party for Mavis  on Wednesday. They had ordered a cake and buns.  We didnt know and it was not our  error.

We did the usual bloods and a final with the doctor. Then we set off to the restaurant for a cuppa. Gently sipping my Tea when I had red flashes in my eye that made me jump then instantly  the bleeper  went off and I almost spilt my tea all down me. So we had to dash back up stairs to see whats up. It was only one of the bloods had gelled and a fresh one was needed. WE  chatted to Amanda in reception. After the Doctors chat he re assured us that  all was well with our last scan and that now  for us the Trial had finally  come to an end, not to worry because we will be scanned regularly and any  new growth and we can have a further years drug again. he wished us well. WE  went down  for some lunch  during  maves and my chatting I  lost it. WE had been talking to a mesowarrior  who wasnt doing so well. I simply said  to mave we are just plain bloody lucky that you’ve got this far. Wow! I could feel my eyes smarting I tried  looking down to avoid her eyes and she asked me are you alright. Yes  cos I am I spluttered. I was so emotional. WE  made our way back to the waiting room again  that was around 1pm. The drug didnt  arrive until 3.15.  Eventually we were all done and then it was hugs and kisses all round nurses and us all saying  we will miss each other. We said carry on and have the party tomorrow and we will be with you all in spirit. It was time to leave with mixed  feelings .Glad we didnt have the early riser and M25 journey every  fortnight. But  sad because we wont be seeing  the galls so often. But they have done there job we have cut the cord and are now free to roam. We will  pop in on scan appointments promise.

The journey home was ok and we had to  pick up a bit of shopping before greeting Louis again. He was pleased to see us. A quick walk with louis was in order. Now  for a  while we can try and live a normal life.

Tuesday

Well its a landmark day  tomorrow. Its Marsden day again. Its infusion number 52. Thats  104 weeks of  it pumped into Mavis. Its been a hell of a road.  Over 7 years now But the last 2 have been the most significant. Tomorrow will be the last yes I did say  last one. For Mavis the 2 years trial is now complete.

I will get up in the morning with a different look on my face as I walk Louis up the lane just after 5 am dodging the half awake speeding drivers off on their  daily routines. Unaware that  they are passing  what for us an historic moment. We will still have to attend  the Marsden  for  future scans and monitoring for at least another year. But  the  drug has done its job.

It  will be a sad day also. We will miss the wonderful staff who have dealt  with her during this time. But we have promised to show our faces when we attend in the future.

I will not  miss the early rising and the journey on the M25 which most times can be trying. Mavis wont miss the  regular fight with the needles hunting for the one and only  useful vein to  put  a canular in. Louis will not miss being left for  10 /12 hours  waiting for his mummy to come home again.

Yes  tomorrow is an historic day. It seems a lifetime ago when we sat  opposite an oncologist and heard the words Sorry its mesothelioma. There is no Cure. It is Terminal You have about 3 months to put your  self in order.

I will be thinking of that lonely  numbing ride home on the bus knowing I was going to loose Mavis in a few weeks. I never dreamt  that  we would be still together 7 years later  with a new prognosis. How long have we got . We just do not know but the future looks good for you. I will settle for that.

 

Wednesday

A1

Found this in my stuff today circa 1955/56. powder blue jacket and blue 7 inch pegs. My tailor said I would never get them on. And If I dared to  walk down the high street  wearing them and come into  his shop he would give me back the money  for them. Well I  struggled pulled and tugged and eventually got them on. Uncomfortably I  walked down town and into  his shop. The  Tailor said OK  stand there. He called out  this guy from the back. Here are those trousers he said. They both had a good laugh. He did refund my money. But  the trousers only lasted a couple more wears  before I had to let them out   but sadly  there was not enough material left to let them out enough. I dont remember what happened to them. Ah those were the days. Shortly after that I moved on to motorbikes. But unknown to me at that time was to be a journey that has  taken me on for 59 years so far. That one is called Mavis. Her parents  called me a Teddy Boy and forbid her to see me.

Tuesday

The penultimate marsden day. Infusion 51. Only one more to go to  finish this 2 year journey. What a journey. Who would have thought  2 years ago that  we would be enjoying this fantastic  event. 7 years  looking  each day in the face . Will  this be the day we get  bad news. Yes we have been there got the T shirt. Never did we dare hope or  think  we would be saying well only one more to go and sitting back  with mesothelioma all gone. A dream. When we were there last Friday Rex, one of the wonderful nurses said they  wanted a new clock as the  one  had become hard to read. So Mavis bought them a new one. But it had to be  a Radio Control clock  to keep  perfect time. So  today  we took it in and gave it to Nella the sister. They  gave Mavis a nice thank you card. It was just a small way  of saying thank you. Rex said Oh  a new clock I thought you were getting a Grandfather clock I said I was but I couldn’t carry it .

Another nice thing  was Nicky was back in her role  as reception. She is such a lovly girl. She lightens up the whole place with her smile. We chatted for ages. Such a welcome sight.

We were saying we are glad that this hectic long tiring day  every 14 days is coming to an end  that is good. But we will miss all those lovely nurses and doctors. They have been so close  ,more like family and friends.

But that’s  the price we pay for Mavis,s new meso free  life. I certainly will not mis getting up at the un godly hour before 5 am in the cold dark winter mornings, walking louis up the lane in the frost with a torch dodging the cars. That 2 hour plus nightmare  journey on the country’s largest car park the dreaded M25.Sitting half awake all day in the waiting room. What I will miss though is our trip to the yew tree for a tea and a coffee and my favorite  Belgium Bun.  I shouldn’t  have the bun but what the hell I  must have something for my journey. If I get to the counter and  see no buns its like withdrawal symptoms. over the 2 years I must have had at least 45  Belgium Buns. Hm! I can smell em now.

Well  its only 9.30 pm but I am shattered and off to my bed.

Thursday

4 days in iMIG The worlds largest mesothelioma Conference. This year 9 was the largest ever so far. iMIG means International Mesothelioma Interest Group

Wow! What a powerful  4 Days. We  put louis in kennels and travelled to Birmingham. Journey up was not  brilliant. Started out with taxi to station went to wrong address . Then Train had bus service which  took 1 1/2 hrs  to do what the train would do in 6 mins or so. But  we  arrived around 4.30 ish booked into hotel. Then made our way to the Birmingham ICC. We crept  quietly into  the Nurses conference. And so the next few days began. WE went  to so many  conference talks, Ive lost count. And to be honest most  were so  scientific I didnt understand much.

We were fed and watered well  each day. WE had an evening gala Dinner. Not impressed. Event was nice food ????.

But the most  gob smacking  thing  during all 4 days was the amount  of people from around the world who just  wanted to meet Mavis. I am stunned. I knew she was popular in the meso world but I never  knew it was so much by so many.             Doctors . Professors  ,the media , nurses and so many general people. Most of the time I  just  stepped back out  the way and simply watched in total awe and admiration.

My arm was twisted before we went  to make a speech. Well I  did a 6 minute one which was on How mesothelioma impacted on me. Oh dear was I shocked. So many people stopped me to thank me for  such a moving talk. So many  were in tears. It was just my thoughts and a brief  account of my journey over the past 7 years. Unfortunately It was not videoed. But if anyone is interested I can put a copy on here.

But soon the  time was ready  for the last session on Wednesday and it concluded with presentations to all the people who had worked so hard to  bring it off. And finally they asked Mavis on to the stage to do a short  one to one interview  to bring the whole event to a close. Its on  our website and on youtube                   https://www.youtube.com/watch?v=5u8prE3QejM

I am so unbelievably proud of Mavis she has achieved so much despite having being so Ill .

God bless you I love you so much.