Diary of the past week.

diary

Last Friday was my blood test day and consultation with the doctor. By the time I got to Oncology I was exhausted. My energy levels dropped quickly overnight and I woke up feeling like crud. I’d have happily stayed in bed rather than shower and dress and go to the hospital, although it’s easier getting there now as Tim drives me to doors that open onto the reception of Oncology on the 4th floor. I didn’t have to walk those long passageways to get the lift up from ground floor.

My body decided it was not going to give any blood. The PICC line didn’t want to play. I felt weak and tired and the nurses were lovely. Dr. James was called in to examine me, and he put me on fluids as expected. Once they could get some blood, they would test it and find it there was a reason for my exhaustion. One of my favourite nurses, Jess decided to heat my right arm and try to find a vein she could get samples from….about 30 minutes later we had success!

The test results indicated I needed a blood transfusion. I settled back for a snooze because what else could I do?

snooze

Saturday my energy levels were much better – not great – but better. Not much to report for Saturday though as I spent most of the day asleep. I haven’t slept so much, so often in all my life! Sunday I woke up feeling ok apart from the jelly belly that seems to stick with me while I have to self inject some horrid stuff that plays havoc with my stomach. Saturday night though I felt reasonably ok and Tim drove me round past the trees in the nearby park which are lit up so beautifully.

tree lights

Tim’s Dad, Adrian called on Sunday morning to say there was mail there for us in Maryborough that needed to be dealt with. At first Tim said he would drive up alone to collect it, but I had a crazy thought when I heard Adrian  suggest they meet half way. It might be a nice way to spend the day, and what would I be doing otherwise? Sitting around, possibly snoozing but not doing anything I couldn’t do in a car driving north. So it was decided and we set off to meet halfway at Nambour for coffee (which I can’t drink lol) and a catch up.

adage 5

I thoroughly enjoyed the trip. Three hour round trip plus the time spent in Nambour. We all sat in the car with our drinks and food because I can’t go into fast food joints, restaurants, shopping centres etc. It was a lovely catch up full of laughs about Daisy and Chilli, and how Missy Clarice (the Ice Princess) is now their bed mate, and the chooks are good girls who like to get out of the pen occasionally and wander the garden. Adrian and Mary have been doing lots of little fix-it jobs round the house too…they are not the type of people to just sit and drink tea. They have to be doing things, constantly. They had just finished restoring a set of french doors in the lounge room, and showed photographs of the almost finished product. Excellent result.

On our arrival back to the unit, I needed a rest in the bed, and of course promptly fell asleep. When I woke, I was hungry but couldn’t force anything down. Nausea was a problem so the pills were brought out of semi-retirement to do their job. My stomach was painful and sore, and I just felt tired, so early to bed hoping for a better day in the morning.

hello monday

Monday, Monday…can’t trust that day………………those words often pop into my head on the first day of the week. I know, crazy woman right? Monday morning was very hard to cope with. My energy levels were so low I almost dragged myself from the bedroom to the next room, the bathroom, and by the time I’d showered I was collapsed in bed sleeping. No fevers though so I didn’t see the need to rush to Ward 5C, and besides I had my blood test and appointment with the lovely doctor Katie the next day.

Tuesday, today came along with the same problems. No energy, painful stomach, and a general feeling of nausea and wanting to faint. We made it to the hospital for my appointment, where I sat down every chance I got before I fell down. The nurses in the blood room took one look at me and put me in a bed. Then Dr James appeared….I’m very fond of his skinny frame, dark looks and studious horn-rimmed glasses. He would make an excellent hero character for a Mills and Boon book or similar. Rather dishy in a nerdy way. He ordered a couple of pills for my stomach, and fluids to be given immediately while we waited for the blood tests to be done. Tim went back to the unit to work because it was obvious it would an all day thing and I would be spending most of it sleeping….again.

don't lose hope

Several hours slipped by and Dr Katie appeared. The results were in. My bloods were good, and I could cease that horrid injection pronto as that result was through the roof. She explained that the last chemo dosage was very strong, much stronger than they would normally give, because I had handled the previous doses so well. They won’t be able to do do that again she says. It depleted my body far more than they had anticipated. Lots of fluids given by IV, no blood necessary, forced-fed custard (lol), escorted to the loo often (in case I fainted), and lots of sleep.

So tomorrow it’s back to the Oncology ward for more fluids and tests to ensure all is ok. Dr Katie gave me the option of staying in Ward 5C overnight, but I said I preferred to go to the unit. Not that my sleep won’t be disturbed here….we have uni students staying in about 4 units and they must have been brought up in tents, because slamming of doors seems to be an appealing pastime. … at all hours of the night.

On our return to the basement car park, there was an Indian family waiting for the elevator. Their little girl was about 3 or 4 and so cute….the darkest prettiest eyes I’ve seen in a long time. The father was very polite and obviously she was daddy’s girl. Her little white boots grabbed my attention and of course, me being me, had to say so. I wouldn’t mind a pair myself! Mind you, it’s not really cold enough here for this type of footwear.

boots

So now I have a week to get my body and energy back to a level that it can handle the next lot of chemo. I asked how many doses I might need and Dr Emma told me on Friday that I will need at least another 4 or 5. It looks like I’ll be here till September and maybe later.

I hope you are all well and happy. I can’t believe the stuff I’m seeing about the UK and I really feel for you all. I know the feeling of utter devastation and embarrassment thanks to a rotten decision made by the voters. We have an election on the 2nd July and I just hope to hell people will vote responsibly. If not, perhaps we should move to NZ. It’s pretty and green over there and we wouldn’t have to live right in the south where I shivered for 7 years. It’s a thought. Lol. Much love and big hugs to you all. Thank you for your messages on Facebook, PM and text…They keep me grounded and positive.

 

 

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12 thoughts on “Diary of the past week.

  1. Margaret poulton June 28, 2016 at 2:00 pm Reply

    Love your words Jo even though you are dealing with an awful illness you have a wonderful knack of making it seem not so bad when in reality it’s b?!,?y s?!?!y .i don’t where you find the expressive illustrations from but they are just the icing on the blog. I will be one of the first in the queue when your first book is released. Keep that positive Atitude please and know that a lot of people are praying and sending good thoughts hope you are feeling up to a smoothie tomorrow sleep tight 💋

    • joskehan June 30, 2016 at 5:56 am Reply

      Thank you Margaret. I stay upbeat because I find it helps myself get through the cruddy bits better….no point in being down and negative as that makes me feel worse. Last visit to the hospital I watched a woman struggling to support her very ill husband to a chair…he was in agony and looked terribly ill. I was feeling pretty bad myself at the time but I counted my blessings for not being in his state of pain and general weakness. I asked the woman if she needed a wheelchair for him as I was prepared to walk down the hallway and get one for her even though I felt crap myself….he was far worse off than I was! Luckily the reception staff had rung already and a wardsman appeared with a trolley to take him immediately to the ward. I hope he feels better by now poor guy and his wife looked devastated. So this is one of the reasons I try to stay positive. I have a lot to be thankful for. xxxxx

  2. Gerri Bowen June 28, 2016 at 3:21 pm Reply

    Although you’ve gone through so much, and still have more to go through, it’s sounding pretty positive, Jo. That is good! Keep sparkling!

    • joskehan June 30, 2016 at 5:41 am Reply

      I have the ups and downs Gerri, and as one of the doctors said last week, my lows lately have been very low indeed…..but there is always the big chance the highs will come back. The doctors always seem to have a little miracle up their sleeves to make me feel good again. Hugs. xxxx

  3. margueritequantaine June 28, 2016 at 3:34 pm Reply

    And yet, will all your burdens you still manage to outshine us all with a well written, thoughtfully illustrated, positive about the negatives blog. You’re amazing, Jo. Truly. You are.

    • joskehan June 30, 2016 at 5:39 am Reply

      Thank you so much Marguerite….your words mean a lot to me. Love and hugs. xxxx

  4. Vesna McMaster June 28, 2016 at 9:18 pm Reply

    ‘And the Most Positive Person Of The Year award goes to… Jo!’Thank you for being an inspiration. Sending you every good wish xxxx

    • joskehan June 30, 2016 at 5:49 am Reply

      Wow, I haven’t won any awards before Vesna. Thank you. Hugs. xxxx

  5. Annie Seaton June 28, 2016 at 10:53 pm Reply

    One amazing lady. Your strength will see you through this difficult time. When you are home and well you will embrace life and good health. Even though we haven’t met, I think of you each day. You have many with you on this journey.

    • joskehan June 30, 2016 at 5:38 am Reply

      Thank you so much Annie. Your support is very much needed and appreciated. One day we will meet as we both live in Qld…and who knows? I might get one of my books published one day. xxxxx

  6. ursula dewar. June 29, 2016 at 2:14 am Reply

    Have just read this and appreciate how difficult it must be for you however you do have the right attitude which is good to see. Today is your birthday Jo I pray that you enjoy the day and that all goes very well for you. Very much in my prayers. Love and God Bless from me. XXXXXXX

    • joskehan June 30, 2016 at 5:37 am Reply

      Thankyou Ursula. It’s positivity all the way or go home, lol. xxxx

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