It’s good news week!

a year ago

Tuesday I had my consult with Kirk Morris about the results of the tests done on Friday. Tim arrived just in time after parking the car back at the unit and running back to the hospital. Kirk rubbed his hands together, frowned, cleared his throat and I thought that perhaps it was all bad news.

He began by showing us the original scan when I was first diagnosed and Friday’s scan to compare the difference. In the first one my larynx and trachea were almost crushed by Heffy and were tiny black dots on the screen. No wonder I could hardly breathe and why my voice is still shaky and horrid. The invasive cells surrounded the area completely, even though the outward lump indicated it was mainly on the right side of my neck, it was everywhere. Rather scary to see and we can understand why Kirk opted for the more powerful chemo treatment of Epoch over the R Chop which is the norm for this disease. Thank goodness he did, because it’s working wonders.

breathe life

The masses of cells that were situated around my body in the stomach, lungs, and of course my neck have either diminished drastically or gone completely. The bone marrow biopsy showed the cells in my hip bone have gone and hopefully will not return. There are still a few cells here and there, especially in my neck, but by the 6th course of chemo (I’m on the 4th as I write this) it is hoped they will be gone also. If this is the case we will be able to return home at last with visits back to Brisbane for on-going checks. Kirk feels a 7th and 8th course probably won’t be needed and neither will the maintenance chemo be necessary as long as checks are done every fortnight at first, extending the time between checks and tests slowly over the next 2 – 3 years. This is the most likely time for relapse to occur he says. I still have PET scan to have done in the next few weeks. Maybe later in August. That will show a clearer picture of the neck area and whether Heffy has been sent packing totally or not.

celebrate life

My fourth course of chemo was hooked up after seeing Kirk. Firstly though the LP had to be done. This is going to be the procedure for every new course apparently. James has been moved to another area and this tiny thin Asian girl came in, called Annie saying she was the new registrar and would be attempting to do the LP. She hadn’t done many she said so she would need to feel my spine and draw on it for some time first. Her hands were like ice. After about 45 mins of the feeling, pressing and drawing, her hands warmed up from my back, she then decided to have a try. Sedation was administered thank goodness, but it didn’t last long enough because she couldn’t find the spot. When I groaned due a particularly painful digging in the area, she decided to give up and go get Sam.

Sam seems to be the ‘go-to’ doctor when it comes to young registrars not able to access the lumbar area for the serum required. He told me he didn’t want to become this go-to person as he thinks the registrars need to learn to get it right. I agree especially when it’s my bloody spine they are fooling around with. More sedation which meant a darned nice snooze, and finally it was all done.

I had to stay flat on my back for 2 hours….during this time I had to take 6 steroid tablets with my orange juice I brought with me, via a straw. Not an easy thing to do lying flat on your back believe me, but I did it. So proud of my efforts I decided to have a cup of tea the same way….I have not had hot tea through a straw before but it tasted good anyway!

Eric and Oscar are back with me for the week, and Oscar has to be refilled each day. Eric is the quiet achiever and just plugs away peacefully, whereas Oscar had to be the centre of attention yesterday and started beeping at me about air in the lines….of course he had air…there was nothing left in his bag because the nurses got the timing wrong ….again. They are excellent at everything else they do, but math does not seem to be there skill set. One nurse, Carmen gets it right though but she is not always available. Ingrid and Sinead are pretty savvy with the math too.

I’ve just been at the hospital for another top up of Oscar. Both boys finish on Saturday as usual, but I am hoping they get the timing right on Friday so we don’t have a repeat of the double trip like the end of the last course.

It is becoming later every day. Tomorrow for instance I have my blood test at 8.45am, then the consult with Kirk at 10.40am, then an appointment with the very disorganised accommodation person Robyn at 11.30am, then back for Oscar’s top up at 1.30pm. Crazy times. The 2 nurses today struggled to work out that time for him so I suggested a little cheekily that they get my favourite Irish nurse Sinead to check it out for them. She is clever at working out the math….as good as Carmen is who had a day off today.

To say Tim and I are happy with the current results is an understatement. We are deliriously happy and looking forward to a better time in the not too distant future. I just can’t wait to get back to my veranda where I would like to have a sun lounge or day bed to lie on with my dogs at my feet…they aren’t allowed to get too close for some time the doc says….so I can rest in fresh air and not in the bed all the time.

sun lounge

or perhaps something like this……

What do you think? There will be cushions….lots and lots of cushions the size of big pillows to rest my head on and support my back when I’m sitting up reading. I intend to catch up on my reading…surely I will be able to concentrate on a book by then.

Talking of books, I have finished my book on The Aviators which I thoroughly enjoyed. I felt a bit like this for a while….

finished my book

then the mail arrived and in it were a few books….my daughter sent me a book about Kick Kennedy because I love anything about the Kennedy family. The new Liane Moriarty book arrived Big Little Lies, and Liz Bryski’s new book The Woman Next Door as well. I am spoiled for choice which would be a problem if I could concentrate on any of the pages at all. It will come eventually. I just have to be patient and wait for it to happen.

This week so far has been okay for me energy wise and appetite is good. By the time I inject myself on Sunday night, I will no doubt fall pretty flat again by Monday and won’t want to do anything much other than sleep and lay about like a big sloth. This will last again until the injections stop or they transfuse me on Thursday or Friday….whichever is done first Kirk says.

Today one of my nurses Bryden and I were discussing changes in patients’ looks, demeanour, moods etc when on chemo. I haven’t had a change in the latter two, but looks have drastically changed. My face is not my face. As I said to Tim this morning when I look in the mirror with my bald head, which I don’t mind by the way, I look like a shiny headed gnome with no eyebrows, very faint eyelashes and not much of my old character. Bryden asked if I had a photo of the old me so I showed her my  profile photo (the most recent) on my author page. She could not disguise her amazement at the difference. This is why I refuse to have my photo taken right now….it’s not nice. Vain maybe, but I do have personal pride. One day I might look something like this again…..

me.

The discussion turned to tatts and the case of the young girl refused a place with the Qantas and Emirate airlines because of her tatt the size of a 10 cent piece on her ankle of an anchor. Bryden is young …she hates them too which renewed my faith in the young to a degree.

She told me of a young patient who complained bitterly about her PICC line being inserted on her tattooed sleeve and of the various cannulas she had to have inserted on her arms for other requirements where she had a mish mash of tatts also. The insertion of the lines and needles apparently was messing with the ‘art work’s outlines’….the doctor attending her at the time with the nurses was sharp with her and told her to suck it up and be thankful the ink didn’t poison her. I like his style.

I must mention I caught up with Sharleen last week….she has been in hospital again for a short stay as she keeps getting fevers. Yesterday I saw her walking through the chemo ward alone which is unusual…she normally has her father or sister in law with her….and she was heading home. At least she was walking unaided this time, but still not looking great. She was too far away for me to call out to her and as her eyesight is not good because of the tumour they removed, she wouldn’t be able to see me even if she had heard me. I do hope she progresses in the positive way from now on.

firefly

Yesterday I learned a friend and former work colleague of mine has been diagnosed with a rare form of cancer…she is young with a child. From memory she is/was a smoker and this may have contributed…who knows? I wish her well and hope she can stay positive and upbeat through the ordeal she is about to experience on chemo and possibly radiation. It’s a hard journey…I call it a trek as it’s a bit like doing an internal Kokoda Trail every day! Please send out the good vibes to my friend Arleta….every little thought and vibe helps.

In the meantime, I shall persevere with my Eric and Oscar until Saturday, and will be more than prepared for my down week next week. Take care my good friends and thank you once again for being so loyal and supportive. I truly appreciate it and feel I would not be where I am today had I not had that love and encouragement from each of you all this time. As I said before every thought and vibe, every encouragement and message of support helps immensely. Thank you.

friends

Much love and big hugs for each and every one of you. xxxxx

 

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20 thoughts on “It’s good news week!

  1. Jan Brigden July 28, 2016 at 8:15 am Reply

    Oh Jo, I am thrilled to hear how positive your results have been. Big smiles all round. What a relief for both you and Tim. Great news re the procedure going forward too. Your consultant sounds very upbeat and reassuring about everything. I love the pics of your potential reading seat and cushions. Big is definitely the way to go! I’m sending you lots of love and big hugs and positive thoughts for your former work colleague and for Sharleen. xxx

    • joskehan July 29, 2016 at 6:26 am Reply

      Hi Jan, thank you for the positive thoughts and vibes for Sharleen and Arleta. I saw Sharleen today with her parents after they had seen Captain Kirk, and they were wiping tears away….I do hope they were happy tears. I will have to wait till I get a chance to chat with her again in the chemo ward. She has so much to live for….4 little children, a husband and a nice country acreage with horses and all sorts of animals. She misses it so much.
      Arleta is just beginning her trek and will need a lot of positivity surrounding her as it’s so difficult to understand the process and what is actually happening. I feel for her. She is young too with a young daughter….I do hope she does well and recovers quickly.
      Much love and big hugs. xxxxxx

  2. Tina Jaray July 28, 2016 at 10:00 am Reply

    Oh Jo, what wonderful news about your results. I can’t tell you how happy I am for you and for Tim. In my mind now I see you lounging elegantly on your sunlounger on your verandah, surrounded by loads of beautiful cushions, with the dogs at your feet, and Tim bringing you lovely nibbles to eat.
    xxx

    • joskehan July 29, 2016 at 6:22 am Reply

      Tina, it will probably be Tim’s lovely mother Mary who will be bringing the nibbles and tea when we are at home because Tim will be able to go concentrate on his work in his quiet office at long last instead of having to put up with me sitting near him and interrupting with chatter every now and then….not to mention having the telly on lol.
      I’m looking forward to my home time with my gorgeous girls the dogs and of course Steven’s cats Tiger and Missy Clarissa.
      Much love and big hugs. xxxxxxx

  3. ursula dewar. July 28, 2016 at 10:09 am Reply

    It is really good to read of the positive results again. Very promising my dear lady. God Bless and gentle hugs from me. xxxxxx I told Ann about same when we were at her house having a cup of tea after shopping. She was pleased with the news. Okay, love you xxxx

    • joskehan July 29, 2016 at 6:20 am Reply

      Hi Ursula, Give Ann my best wishes…she is a lovely lady.
      We are so pleased with the results to date and the only way has to be UP in my opinion. I’m not about to let it go down……had potassium via IV today as levels are a bit low as is the magnesium….they are trying to avoid the very low slump I suffer the week after chemo. Let’s hope it works. Will keep you posted.
      Much love and big hugs. xxxxxx

  4. Doreen July 28, 2016 at 11:19 am Reply

    Hi Jo, delighted to read that your treatment is working. Seems like Captain Kirk made some good decisions early on. How reassuring for you, given what your are enduring. Although the nurses do need to get their act together. Love your photo and feel sure you will feel and look beautiful again. Hope you enjoy your search online, looking for the most comfortable and relaxing day bed along with some luxurious pillows and throws, you very much deserve those comforts. Always thinking of you. Luv, hugs and healing Dxxxxx.

    • joskehan July 29, 2016 at 6:18 am Reply

      Hi Doreen, I am having fun looking for a really nice chair, and I have the cushions in mind already. I buy the covers 55cm size from Sunburst based here in Qld which are waterproof and perfect for the veranda area. I get the inserts from Pillow Talk up here and they are so soft and bouncy.
      The rugs will be cotton I think and probably a patchwork or two,, lol.
      Yes, we are very pleased that Kirk chose the big guns right from the start…I’m so lucky and blessed to have him as my consultant.
      Much love and big hugs.. xxxxxx

  5. Trevor Belshaw July 28, 2016 at 12:39 pm Reply

    I whooped aloud at the news of the heffalump cells. FANTASTIC. Sorry the LP didn’t go to plan. You’re getting through it now, the end is in sight. I couldn’t be more pleased if you were a member of my family giving out the news. Well done, Jo. 🙂 Until next time. 🙂

    • joskehan July 29, 2016 at 6:14 am Reply

      Ah thank you Trev….that means so much to me…..I regard you as a very close friend and value your views. Love your messages here too. Hugs. xxxxx

  6. Liz Seymour July 28, 2016 at 12:44 pm Reply

    That sounds wonderful Jo !!
    I am really pleased for you and your family, a regular trip to the city Dr’s is way better than not being at home.
    Let me know what the new Bryski is like, I have really enjoyed her works,I will think of you propped on a warm verandah, just being, feeling the sun, knowing there is a book and a pot of tea and some canine love very close by.
    Here’s to a long and healthful life for you xx

    • joskehan July 29, 2016 at 6:13 am Reply

      Thank you Liz for those kind words…..yes, I can’t wait to be able to sit at home with my crew again…no doubt Steven’s cats will love the day bed too, lol.
      I will let you know about the book….I loved her book based in Tassie (can’t recall the name right now) and Melbourne, as they are stories one can relate to.
      Good luck with the volunteer work Liz. I hope you find your niche and that they appreciate what a wonderful person you are.
      Much love, xxxxx

  7. Sunny Alexander July 28, 2016 at 1:07 pm Reply

    I have been following your blog and your journey. You are an inspiration! God bless you and keep you safe.

    • joskehan July 29, 2016 at 6:53 am Reply

      Thank you Sunny. So pleased you are following the blog…I just hope my words and experiences might help others either afflicted with a similar disease or someone with a loved one suffering. xxxxx

  8. Gerri Bowen July 28, 2016 at 3:18 pm Reply

    I’m so happy to read your good news, Jo! Enjoy relaxing on your veranda…and how in the world will you be able to keep your dogs away from you when you return home? They’ll probably do back flips when they see you! Keep your sparkle going, Jo!

    • joskehan July 29, 2016 at 6:11 am Reply

      It’s going to be hard to control the dogs for the first few days…..they are pretty bouncy at any time when we’ve been out for a short time so Lord only knows what they will be like when I finally get home. I’m looking forward to being able to talk to them though and have cuddles again.
      I’m sparkling even moreso now with the good results at this time. Thank you for your loving support Gerri. xxxxxxx

  9. Kay Burnett July 28, 2016 at 8:18 pm Reply

    Delighted for you Jo ! Xxxxxx

    • joskehan July 29, 2016 at 6:08 am Reply

      Thank you Kay. Much love. xxxxx

  10. Denise Sultana July 28, 2016 at 9:44 pm Reply

    Hi Jo, So hAppy to hear your good news and that everything is headed in the right direction. Sorry for the delay in answering but i had a Shoulder op yesterday and thought i should answer before the pain killers wear off. Going home this morning and hope to get some sleep tonight. Love reading your blogs so keep up the good work and kick Heffy to outer space. Best wishes Denise xx

    Sent from my Windows Phone ________________________________

    • joskehan July 29, 2016 at 6:08 am Reply

      Best of luck with your shoulder Denise….hopefully it will heal up and be better than before. I send positive vibes for you. So pleased you like my blog and don’t find it boring…and yes, it seems I am winning the fight against Heffy. Thank you again for your loyal support. xxxxx

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