Beginning the journey

…..a very good place to start.

Planning to fly out to Bali to attend a wedding on the 18th July 2012 (Sandi’s Birthday!!!) and for a bit of R & R.

But, I’ll just wind the clock back a couple of days…….

Saturday 14 July 2012 Paul presented at the local pathologist for routine blood tests. Sunday morning 15 July around 9.00am the phone rings. Sandi answers the call to our family GP. Little did we know that phone call was about to change our life as we knew it forever. Paul he says, your blood tests have shown up some anomalies that are not good. You need to see a specialist straight away. “No can do” says Paul – we’re off on holidays to Bali I’ll do it when we come home. No way says the doc I would like to get you into hospital today.

Bottom line was an appointment was made for Paul at 9.00am on 17 July 2012 at Royal Perth Hospital to see one of Perths haemotologist associated with the marrow transplant team. Whilst we were waiting in the waiting room, the nurse said to Paul – you have a bone marrow biopsy at 10.00 don’t you. No, no he says just here to see the doc. End of the day the nurse was correct so somewhere between 9.00am and 12.00pm Paul went through an hours visit with the doctor who talked about the possibility of some unknown bone marrow disease called myelodysplastic syndrome (MDS which is a disease of the bone marrow for which there is no cure apart from a bone marrow transplant). Little did we know at that point in time that this very unknown and unpronounceable word was about to become a driving factor in our future.

Likewise to say we found ourself back at home cancelling the scheduled holiday and instead we were facing a week on a rollercoasster ride of emotions (and those emotions have not stopped!!!!!!)

Back to RPH the following week for some more blood tests and the preliminary results of the bone marrow biopsy (BMB). Results – not good more than likely MDS but will need to get the results in from the Chromosome testing to absolutely confirm and to understand how aggressive the disease was.

Several weeks later we received almost the worst case scenario. Definitely MDS (Intermediate 2) with unfavourable prognosis factor of the minus 7 and plus 8 chromosome abnormalities. We will start you on some growth factors (G-CSF/Neupogen and EPO) to help stimulate the growth of your own blood cells the doc (Julian Cooney) said. This however, is only like putting oil on a tired engine and we do not know how long the oil will keep the engine ticking over, so we will start the process of looking for a bone marrow donor.

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12 comments on “Beginning the journey

  1. Morning Paul

    I expect they’re waking you up at some ungodly hour for breakfast! How are you today? I bet it’s nice and warm in there, unlike England at the moment. Matt rang me for my birthday. He said all Myette’s done since the snow came is look through the window. He said if she carries on he’s going to let her in.

    Did you hear about the fat, alcoholic transvestite? All he wanted to do was eat, drink and be Mary.

    We’ll be coming in to see you. Was going to let you know when but knew you’d ask to be moved to another ward beforehand so we’re going to surprise you!!!

    Have a good day and take care.

    Love Nancy and Grogxx

    • I have already changed wards so you won’t be able to find me, only joking. A busy day today I had my line put in ready to start chemo tomorrow. The staff have all been really good especially the young nurses. Look forward to seeing you soon Love Paul and Sandi xxxxxx

  2. Hi Paul,

    I’m having trouble with my new laptop so you’ll probably get two of the same message !! Thank you and Sandi for all the interesting notes about your journey and the wonderful photo’s, remember that bald men are more sexy, fact, I’m married to one !
    We are thinking about you in “Middy’s Marriott” and know that with your Yorkshire guts you’ll do very well. You are in the best place as it is very cold here, I’m having to wear my sun glasses to stop my eyeballs freezing !
    Hope you’ve got the card,

    Will be in touch again soon when hopefully my laptop will be working more successfully !!

    Much love to you and Sandi,

    Shirley and Stuart xxxxxx

  3. Hello from “Middys Marroitt” 6.00am here and Sandi is already visiting me, she must be missing me well not really I was suppose to have my first dose of chemo but it looks like it has been pushed back. Sandi is heading to the airport at 8.00 to pickup Amy and Dusan who are over here for Easter. Looking forward to seeing them. I am getting very well looked after in hospital. Have a great Easter even if it is cold over there. love and Best Wishes Paul and Sandi xxxxxx

  4. Loved the photo’ of you and your chemo nurse, definitely one for a medical magazine, then you can add modelling to your c.v. You are very photogenic, but then I did discover this when I selected you to appear on t.v. in the 70’s !!
    So pleased to hear that all is going well and that you are able to go home after each treatment, I’m sure Sandi’s wonderful cooking will make you feel good.

    Our love and best wishes to you and Sandi, Shirley and Stuart xxxxxx

  5. Thanks for the message Shirley I know a lot of people who wouldn’t agree with you though. It looks like I can go home again today just waiting for my blood test results. Believe me I am getting very well looked after in RPH and at home.

  6. I thought only footballers were “redcarded” it must be an April Fool joke ! However I’m sure all your visitors will look great in the smocks and rubber gloves !! wish we were there ! The T.V.here are running an April Fool’s joke this morning about banning all curved bananas into the country, only straight ones can be imported and the gorillas at the zoo’s are going to suffer as they only eat curved bananas !! I wonder if some gullible viewers will believe it !! Love as always from Shirley and Stuart xxxx

  7. When I was ready to check out and pay for my groceries the cashier
    said, “Strip down, facing me.”

    Making a mental note so I could complain to my local MP about this
    running amok security crap, I did just as she had instructed.

    After the shrieking and hysterical remarks finally subsided, I found
    out that she was referring to how I should position my credit card.

    Nonetheless, I’ve been asked to shop elsewhere in the future.

    They need to make their instructions a little clearer for seniors.
    Man I hate this getting older stuff.

  8. Just got your day -1 report. So the “little swimmers” should almost be with you now, travelling first class I’m sure as they are for a very special person. You are bound to be feeling worried but with your guts, excellent fitness ( and good looks ! ) plus the prayers and thoughts of all your wonderful family and friends everything will work out well I’m sure, and remember every day you are there is a day nearer to going home.
    As always we send you and Sandi our love, Shirley and Stuart xxxx

  9. Shirley Stuart thanks for keeping in touch. All the chemo is now completed, having immune suppressant medication. I am very lucky that I have so much support. Hoping to have a good nights sleep ready for the big day. Love Paul and Sandi. Xxxxxxx

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