Jackpot!

jackpot

They say there is always a first time, for me I have never hit the jackpot before now.

Three weeks ago Kirk had the unpleasant duty to give me this news. Under other circumstances it would have been exciting, but missed the mark by quite a large yard this time.

With this disease there are many variations/types of which there are three primary types. Kirk named them as Hit 1, Hit 2 and Hit 3 with each one carrying varying degrees of success in isolation to each other. With his solemn delivery he patted me on the knee and declared I was the unfortunate one to be hit with all three hence Epoch fought a hard battle but lost.

My wish to fight on brought Methotrexate and Cytarabine  as the next treatment option…….. which was working beautifully over a period of a month or more. So well in fact this excited Dr Nik who orchestrates the gathering of stem cells or donations from patients and donors alike with a view to stem cell transplant. My cell count could not have gotten any lower and was perfectly free of those nasty little cancer buggers making it possible to gather mine, treat and develop them ready for the big cure.

Tim and I, the family, friends, Doctors, nurses and scientists launched into positive actions for this to be carried out. My dear friend Lorna Sof and her husband Mr Sof in London contacted me sharing their experience of this procedure when Mr Sof endured the same treatments. Dr Nik’s face lit up when I relayed this information. So from all accounts it was looking good at this time.

So the two ladies responsible for the next steps of the collection, Annette and Kari visited me with a fully typed up schedule for this collection to take place. Far from easy and naturally required a firm commitment of endurance from me. It meant my willingness and ability to sit with straight, still arms with cannulas in the main vein of  each arm near the elbow…… No cups of tea and or food for me over a 6 or more hours period. Tough ask.

empty-tea-cup

 

With the potential of a successful result I was prepared to do this unequivocally, forms were duly signed and a firm commitment was made. As mentioned in my last Blog the collection was completed.

After the collection I was allowed home for some well deserved rest at the the new unit in Coopers Plains. During this time appointments were kept with Kirk and Nik with scans and tests as normal process. Unfortunately the series of the scans showed a return of the disease in a couple of places including the spine. Aggressive to the max. My right eye had become unfocused and slightly turned which forced a pirates path for a few days,

pirate-cat

 

not my best look but none the less it helped to reduce the strain on my eye. It is now almost back to normal and the patch put away for another day. Thanks really to lumbar puncture procedures where Methotrexate was again injected into that area.

Returning to the townhouse that Friday was made so much smoother and easier to bear with the presence of Mary and Adrian (Tim’s parents), who had travelled down to watch their grand son’s cycling, as well as catching up. This extraordinary couple enveloped us in a group hug which beamed hope, love, support from every fibre. Without this, Tim and I would still be a blubbery mess sitting in a dark corner!!!

Tim’s brother Barry and his wife Nicole visited for a BBQ dinner, laughs and chats. Such a precious and well needed input to our lives. So enjoyable. It was kinda lucky they had the cycling champs for Luke, in Brisbane. A long trip from Perth would not have been an option otherwise I’m sure.

We were as you can imagine very deflated when seeing Kirk at our next appointment as the subject of home and palliative care needed to be raised and some very broad prognosis information was received. It was emotional and confronting – Tim, Kirk and one of my loyal nurses Clare, Raj the new Register on the ward and of course for myself….as you can imagine, it was not an easy thing to accept right there and then. Incredibly disappointing to say the least! Tears were shed by all but the support and love of this group didn’t falter ever.

Kirk with his usual delivery made such news more than just clinical, it was obvious by his appearance that he was hoping for far better news for me. With his usual pat on the knee he went on to discuss the next steps in the treatment plan of top up chemo maintenance to control the disease as best as possible and keep it at bay for as long as we can grab..

So on with a new range of chemo and the never ending medication that comes with this process. I have accepted the fact I don’t have that far off distant expiry date anymore, but it has been heartbreaking coming to terms with the fact that I’ll be leaving Tim, Steven etc behind. That is hard, but it must be part of their own way of acceptance. Eventually it will be there.

handful-of-pills

The acceptance on my part however does not mean I have become resigned to giving up the fight. No way! I intend to fight a very hard battle and even with the odds against me, I am aiming for success in having time…as Kirk said yesterday it could be a month, it could be a year or it could be a dozen…let’s aim for a year at least. Nothing to lose.

Our current situation is managing the various aspects of my condition back to my being completely independent again. Adrian organised a wheelchair for me on our return that weekend to Maryborough. Kathy from the palliative side of things visited and she is working on that plan which will assist. Our GP Melissa is well on board and in touch with Kirk. So many irons in the fire! All for my well being.

My daughter and grand daughter arrived from Perth. Here till after Christmas at least – it’s great to have them here for laughs and chats.

My next blog will explain with humour I hope, my new drug regime and general routine. The new steroids have made me hungry and I nag the others for little bits to eat. At this rate you can expect a very round and chubby me soon.

firefly

Till later in the new week….take care and thank you for staying by…my messages and the comments, my emails etc from so many of you! I find it so inspiring and helpful and it urges me on.Bless you…I am so lucky.

 

 

 

 

 

 

 

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17 thoughts on “Jackpot!

  1. Carol Matthews December 17, 2016 at 2:36 pm Reply

    I’m the lucky one to have you in my life and it will be for a long time, the vibes are flying across the oceans for you all
    💖💗💕

    • joskehan December 17, 2016 at 7:21 pm Reply

      Carol I feel I have yet to meet you in person and to do that we both have to be alive and kicking. Lol. xxxxx

    • joskehan December 18, 2016 at 3:31 am Reply

      Thank you. xxxxx

  2. Liz Seymour December 17, 2016 at 2:58 pm Reply

    Believe? Yes believe !!

    We can go out by throwing our arms in the air and saying thats that, shedding tears and being mournful
    OR
    we can fight the fight with positivity, grace and charm and gather the freely given love.
    We can share the laughter and the hope of family and friends that this next unknown time is as full of love and kindness as is humanly possible. ( as well as feline and canine )
    Yes I believe and you believe that the second option is the only one.

    Please believe, and lets all pray, hope, wish, affirm or beg that your sentence is a long one.

    • joskehan December 17, 2016 at 7:19 pm Reply

      Liz you never cease to amaze me with your random bits of sheer wisdom when most needed but least expected. I’ve been saying for years I have my faith and belief within…I don’t need the hoo har, or the bending and bowing to pray or convey positivity.
      I thank you for you being you. xxxx

  3. oldawg December 17, 2016 at 3:26 pm Reply

    Oh sweet Jo, yiu are a beacon for all who care for and love your ways and virtues.
    Damn I wi dc h you were close enough to hug.
    John

    • joskehan December 17, 2016 at 7:15 pm Reply

      A thought or cyber hug is every bit as good!! Hugs back. xxxxx

  4. Fran Macilvey December 17, 2016 at 4:46 pm Reply

    Thanks for posting, Jo! I’m thinking of you all and holding you in the light. ((xxx))

    • joskehan December 17, 2016 at 7:14 pm Reply

      That means a lot!! xxxx

  5. Margaret poulton December 17, 2016 at 8:23 pm Reply

    Jo always know so many of us are totally inspired by you.what can I say except keep on keeping on. Enjoy your self for Xmas and hugs to all at Maryborough

  6. joskehan December 17, 2016 at 9:01 pm Reply

    Will do Margaret. xxxxxx Have a great Christmas with your family. xxxxxx

  7. Gerri Bowen December 17, 2016 at 9:49 pm Reply

    You are sparkling, Jo. My prayers for you continue. Have a very Merry Christmas with your family! xxx ❤

    • joskehan December 18, 2016 at 3:30 am Reply

      And will continue to do so!!!!!xxxxxx

  8. Doreen December 17, 2016 at 9:52 pm Reply

    Dearest Jo, your courage is inspirational. You write with clarity and honesty and if anyone can make the most of however long you are here, it’s you. Family is important and it’s good to know that many members of your family will be with you and Tim this year. I wish you, Tim and all your family a wonderful, happy and loving Christmas with treasured memories for all. Luv, hugs and healing Dxxx

  9. joskehan December 18, 2016 at 3:28 am Reply

    Doreen I have said what a rare gem you are when it comes to being you. Love you to bits. You understand my will to live and keep going.
    Have a wonderful Christmas period with your family and friends, (especially that priceless grand daughter!). I’ll no doubt be in touch before anyway.xxxxxxxxxxx

  10. Jan Lawson December 20, 2016 at 7:39 am Reply

    Hi Jo. So happy to read your family will be with you for Xmas day I hope you have a fabulous day surrounded by the people you love and who love you. My prayers are with you always. You are truly a wonder – your courage and strength and tenacity are inspiring. Thank you for sharing your journey with all of us. Big hugs to you and Tim. xxxx

    • joskehan December 20, 2016 at 10:50 am Reply

      It’s nice being at home again. We drive to Brisbane at the end of the week for my treatments, then rest at the unit here that night and home the following day. Makes life happier. xxxxxx

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