In the dead of the night

I am writing this between the hours of 3 and 4am when most other people are normally sleeping deeply and everything is quiet. It is also called the dead of the night (not to be confused with witching hour at 12) and is the time that is most common to die in hospital. My body has different ideas. I’ve been told “listen to your body” but I am not sure exactly what it is saying half the time. I’m either buzzing on steroids; yawning my head off, slumping down in the nearest place I can find or feeling “Bluuurgggghhhh”

In between that I dash to the toilet every hour; due to the amount of liquid I am drinking. I just hope that incontinence has not set in early and the body continues to remember bladder control throughout this treatment. Even my walks have to be planned around finding a loo at a strategic point. There has been a lot of hopping and leg crossing going on, which makes it bloody difficult to walk faster in desperation. BUT hell, I am still alive!

And there have been some magnificent days in Queenstown recently. These are shots of the views from the deck and shingle garden outside out rental apartment (soon to be available on Air BnB)

Our renovation project is very close to finishing. Just niggly jobs, driveway (next 2 weeks) gate and garage (early June) left on the list.



This morning I have decided not to pace around the house (which is good for the step count, if only I remembered to take the phone with me) but to sit in a warm bed with duvet snuggled up with laptop.

Before I was diagnosed with myeloma, I definitely was not listening to my body or I just could not comprehend the messages.

• It was screaming out there was something wrong with my lungs as breathing was hard; I put it down to a chest infection

• My heart pounded every time I walks up a small hill; it was working over time going up Ben Lomond. I had to have a long sit down at the top; Sarah managed to sit down long enough for a photo Also up Roy’s Peak; I thought I was just very unfit. Best photo of Roy’s Peak is on the first page of this site. https://www.lakewanaka.co.nz. Worth the struggle though,

• I had heavy hot uncomfortable sweats at night; I had read that this was onset of the menopause

• I had some very disturbing thoughts. The sky was blue, the mountains sparkling in the early morning sunshine, but as I went through the routine of daily stretching, I thought perhaps it is time to die. I have had a great life so far and have achieved many things I want to do; what else is there? The world seemed colourless. Perhaps I was just very depressed because I could not keep up with Sarah and I wasn’t enjoying exercise at all. I was surprised at myself being like this; I am never usually so pessimistic. I, of course, tried more exercise.  At least it flushed out the problem.

Now, I crave more life. Drugs are managing my disease and I have feel far more positive than I did when I had no clue what was going on.

This is me yesterday post chemo injection feeling crappy with dark squinty eyes, in Clyde with my good friend and neighbour Diane Hart. Sarah has insisted that I am driven to the chemo each week as with fatigue, anxiety and chemo brain, I can’t concentrate long enough for a 90-minute drive. Diane is a long-term resident of Queenstown and is always suggesting new ideas and offering up hidden places, off the tourist track to visit in the region. She drove, chatted, lunched and generally entertained me; I took copious notes on my iPhone. As I am off wine and fresh fruit, Diane thoughtfully brought me some Gibbston Valley pinot noir grapes to admire as a table decoration. Such a sweetie.

More good news this week:
The blood clots on my lungs are breaking up. This is consistent with how I have been feeling going up hills (better puff) I will still have to take blood thinners for another 9 months (as long as I on chemo) as increase chance of developing more blood clots are a possible side effect.

Finally, we are able to plan some tentative dates for hospitalisation. We start in Dunedin.
I am pencilled into to Dunedin hospital for a high dose chemo and to start the autologous harvesting Stem Cell Harvesting process starting 3 July. No horrible painful bone marrow extraction from my hips; this will be taken and returned via my blood.
The plan is:

• Day 1 High dose chemo with fluid on intravenous drip; 
• Day 2 Injection in stomach with a drug to stimulate my stem cell growth.

Apparently, the stem cells go crazy reproducing and fill up my bone marrow and spill out into blood.

This is starting early between week 14 and 15 in the current chemo cycle and is of course dependent on how well I respond, gleaned from weekly blood test results and not getting ill in between. Current chemo treatment will stop.

Next Christchurch hospital after a couple of nights at home

• The doctors leave it a week for all those stem cells to grow. 
• Several appointments and check followed by Stem Cell Harvest from the blood – all day process.

I will be very weak. They may even fly me back and forth as lots of chemo put in and good stuff taken out.

We then have to wait a while as the body will need to recover.

Hair loss starts around then. Trying to prepare for this too. Hairdresser lined up to give me a Buzz cut if Sarah can’t pull it all out or I get fed up with looking like a half-plucked chicken.
I have also booked into a Cancer Society “Look good Feel better” session to learn how to wear a wig and apply makeup to cover up all the baggy bits under eyes and flushed skin from the steroids. I might even try on a bit of lippy and eye makeup. Perhaps Sarah may not recognise the long blonde, red lipped, mini skirted big booted skimpy thing that greets her on 11 June.

Approx. 4 weeks later after more checks of vital organs etc. etc.
Back to Christchurch hospital for approximately 5-6 weeks.

• Day 1 High dose chemo as above.
• 30 Days of putting stem cells back in body through very large stent contraption.
• Couple of days/week staying nearby to check all is well

Can any of my medical friends tell me a bit more about the stent that may be used? as it looks horrific; very inconvenient when putting on clothes. May have to invest in tent-like tops as it goes in through neck or direct to heart and will stay in for some time after.
All advice welcome.

We will have lots of logistics to work out but meanwhile this morning, I am about to make some ginger tea with honey. Despite having chemo, recommendations are strangely echoing advice given to pregnant women (sickness pills, avoiding foods that night lead to listeria, taking ginger tea) What a shock that would be at this stage of life. But it would of course be a miraculous conception. It has happened before; depending on what you believe.

I am back to making chutney again (strange reaction to being ill but vinegar rocks in my metallic tasting world) Last week Apple and sultana.

This week I am improvising and creating a new pear, date and raisin chutney. 

Found out baked salmon covered in pesto and parmesan is also a winner. 5 minutes to prep, 10 minutes in 230C oven. Easy, very tasty and my stomach coped.

My crisp eating has gone down since Sarah left; but must do better according to the nurse; my sodium levels are very low!

Thank you for taking the time to read this and follow my blog. It is a tremendous boost that so many people send their love and good wishes and although I don’t reply, I am very touched and sometimes tearful.
Love to you all.

Jo
xx