Escaped

After 14 nights and 15 days of captivity in Concord hospital I have escaped. Born again baby inside a 57 body.  I am out of danger, curled up on the sofa at home, with comfort blankie, Paddy and laptop.

Thank you for all the messages of support, love, advice. I am not very brave or strong; I am mostly stoic but have cried like a baby several times in the last 2 weeks.

It has been horrific. A process to endure. Something I wish never to repeat.

The first three days went to plan

The Central line insertion. (Day -2) I was sedated. I felt the knife go in but it was like a few taps on my skin (oh boy did it sting like hell later) The surgeon told me he had used 18cm of tube (right side under collar bone to heart) 

The high dose melphalan (Day -1) infused along with litres of sodium chloride (saline) Deadly and toxic but did not feel a thing.

The return of my stem cells (Born again Day 0). My precious stem cells came out of a deep freeze (having travelled from Christchurch to meet me) and were defrosted in a warm water bath of 38C. 

And then we wait for the results.

• 10 days of uncontrollable Diarrhoea; drugs for this were only given on last day when my blood had recovered enough to take it
• Ulcers in throat mouth and stomach meant I was unable to eat or swallow apart from liquid food (sludgey soup and yoghurt for days) Tongue was thickly coated in white.
• Nausea and vomiting (especially with nasty pink mouthwash)
• Engraftment fever (also known as sepsis) for 48 hours. Antibiotics and a platelet transfusion saved me. Learnt that most blood is a yellow colour like a good Semillon.

• Low blood pressure and dizziness

I spent days sleeping on the bed or sofa or in the toilet, interrupted by 4 hourly OBS (blood pressure + temperature) or taking blood for tests or adding extra fluids. Washing attached to drip machine is difficult.

Room was ok but aircon so ferocious I had to wear 3 layers of clothes and a beanie in bed. 

Food was and smelt like school dinners. Other inmates confined to rooms apart from 2 old blokes sneaking out to have a cigarette every 30 minutes. Not sure how much cancer you need to motivate a person to give up smoking. They provide the soap opera as daily they were caught smoking where thy were not supposed to, driving nurses to distraction.

Sarah came to see me every day (apart from when she went off to get her teeth done in Katoomba; another story) at times she was chatting away whilst I dropped off to sleep again. 

I spent days in a fug (unable to read, or comprehend what I was reading) I even got so bad I could not turn on my phone as it made my brain ache. I had a few moments of total clarity towards the end that cheered me up (usually coinciding with antibiotics) and this gave me hope. I had one aim only; to get out of hospital

Sarah managed to smuggle in food but I could taste nothing apart from oranges. 

Now home, I have a constant metallic taste in my mouth and everything tastes like cardboard unless it is very salty very sweet or citrus, garlic or ginger. I can’t drink tea as the tannin makes the metallic taste worse, but a weak milky coffee is tolerable.

My first proper meal was: garlic mushrooms and spinach on toast with a splash of Tamari. Sour dough baked by Sarah; herbs from the balcony garden.

Sarah is Queen of the kitchen today, making sour dough and cheese biscuits. Even Sarah is feeling a bit jaded having hit a bit of concrete in George St on her bike and being thrown over the handle bars. She just got up and cycled home with cuts, bruises and very sore ribs.

So what next for us? A long road to recovery for me; rest for Sarah or perhaps not?

I am weak. I need a nap after every meal. 

I have lost all immunity. All childhood vaccines have been wiped out

My hair has started to fall out; we have to vacuum the pillow daily. The next 2 weeks will be the worst for this.

Due to low blood pressure, I have to take a run up (activating all muscles in legs for 10 seconds) before standing up. 

Every day, I aim to go for a little walk to try to build muscles but I need to go gently at first. 

I now can mix with other people as long as I do not meet anyone with a cough, cold or COVID. That means keeping away from places where there are lots of people.

I have to return to Concord for check-ups but chemo will not start again until Day 60. 

Until then, I will enjoy the freedom of being at home and living in Sydney. 

Photos of flowers from today's very short 4000 step walk follow; only a small distance but it took me 1 hour. 

Baby steps.