Mesothelioma Patient-My Diary– the bad news was given to me today–Mr Nasty wants another fight!!!!

Oh dear its been a day.

I wont hold this up by saying I walked the dog, I made breakfast,  and we traveled to London by train, that part hasn’t changed from Monday … we did the same journey again, had a lovely meal in the restaurant, went to the Oncology room  for appointments, waited from 2pm until 3pm and at last I could get out of the crowded waiting room to see Dr Peter Szlosarek.

He had the results of my scan —bad!!! the tumours are all growing well,  he showed me and together we found each one as he moved down into my chest.

Oh dear I said can we go for the trial now. —Oh! he said “I thought you was going to say Chemo” No! now’s the time to have a go at the trial” I said.

So we had a long chat (they are so good and really let you ask all the questions you want to, until you understand what is going on)

Ray asked some more and then The Doctor said first any pain, when I explained the bottom of my lung hurt but I thought it was my Diaphragm as it was damaged when I had all that fluid.

He thinks it is the tumours and they have pushed my last rib out.

So I was offered a prescription for more pain killers  and I will see how I go with them.

My kidney is showing that it is dry!  in parts its on the red?  so I have to drink more fluids 2 ltrs a day, gosh I wee enough now!!! I will stuck in the loo from now on!!!.

An appointment was made for Aug 12th (the letter was printed there and then) where we will look at a a new bi-op that will be done next week? when? I don’t know yet.

I haven’t got to stay in for that so that’s good.

He asked me to have a blood test today so I took the  forms for that.

So that was that! we still had a laugh though (whats the use of crying it just doesn’t help does it, as he said, its still in the chest although the Lymph gland near my voice box has got bigger again. Thats why I sound like Orville on the phone (my son’s description that the Doctor has put in my notes )

We shook hands and left. I went down to Dracula’s room and had my blood taken, then it was back on the homeward journey.

It was a long noisy journey home on the train lots of noisy children and I just couldn’t think.

We got home and let Louis out, had some tea ad then set off for a C&CC Rally but the Sat/Nav took us to a church hall and we couldn’t  find any Motor Homes so we came home as I hadnt taken any phone numbers.

It seems the sat/nav took us to the Church hall instead of the Village hall, so we will get up early tomorrow and go to Challock and hope we find them this time.

Than the phone went and Judy, who’s husbandKeth has Meso, phoned to ask was I at St Barts today–yes I said– Oh no I thought it might be but we had to go into see the Doctor.

I wish I had seen her, but I really didn’t as I was watching the fact that whole families came in with 2 Patients and they took up so many seats that patients needed. I know eveyone does it different but I just like Ray coming as it is so hard when you hear bad news.

Well thats it after a high yesterday I have come to a very low. I have to start my fight all over again.

I have had to declare war on Mr Nasty!!!!!!

5 thoughts on “Mesothelioma Patient-My Diary– the bad news was given to me today–Mr Nasty wants another fight!!!!

  1. Dear Mavis, what can one say except that I have NEVER encountered anyone with such a fighting spirit. Just look at the publicity Meso is getting these days as a result of Mavis and her endless quest to keep the horrible disease on the front burner.

    I firmly believe we are all sent into this world for a reason. There isn’t a shadow of doubt why Mavis is here amongst us.

    Thank you Mavis on behalf of the untold Meso sufferers and their families, in fact everyone suffering from a terminal disease. Long may your fighting spirit continue and God bless both you and Ray.

    Peggy xx

  2. Oh Mavis – what a day for you. But you are so strong and with your fighting spirit you will do this one too. Pleased the trial process is underway so you can now get on with it – waiting and watching is not a good place to be. As a fellow meso sufferer I thank you for your courage and inspiration and I will be walking with you Mavis. Tess x

  3. Damn, how dare they grow so well. Good luck with the trial, I don’t know how you and Ray find the strength to deal with this. One of these research trials has to have good results soon, so fingers crossed , you can be the leading pioneer .
    Thinking of you both

  4. I’m so sorry Mavis that you’ve had the bad news, while mine is good. We must just stay postive and keep fighting. As you say ‘crying doesn’t help, but laughing does, and I laughed when I saw you couldn’t find the rally. Hope you had better luck today.
    Love n hugs
    Viv (&Mick)

  5. Oh Mavis what a shame and after your exciting week too! Well good luck and lets hope they get you started on the trial asap. You are such a strong brave couple. We are thinking of you and Ray as youstart your next battle.
    Lots of love Graham and Margaretx

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