Big set-back with 5 days in Intensive Care Unit

I was progressing along according to plan when frighteningly on Sunday 22nd March I lose two days in an induced coma and wake to find myself in the Intensive Care Unit.

It seems that with the severe mucositis, and the drugs prescribed to deal with that in order to swallow large pills over a very sore throat, caused a knock-on effect of my body not coughing enough to clear a chest infection. The nurse found me when she came to check on meds. I don't remember a thing but was apparently found collapsed back across the bed struggling to breathe and trying to cough. The day before I had developed a 38.2 temperature. There was a mucous plug in my chest. The team took 2 hours to stabilise me, clearing and oxygenating airways before taking me to ICU and placed many tubes in my body.

When I wake up I find I have a ghastly breathing tube and naso-gastric tube in place and can't speak. The next day they finally took out the breathing tube, replaced it with a hefty breathing mask, then another breathing mask, then oxygen to the nostrils then to breathing normally. The three days I was conscious there were very anxiety-producing for me.

Grant and Karole were phoned and brought Neri to see me while in the coma. I am told that Karole sat and held my hand and Grant looked sad and frightened while trying to make it all seem kind of normal for Neri's sake. It is scary for me to think that I came so close to the end.

They're all saying here what a fighting spirit I have and how brave I am etc etc as not many have the inner strength to make it through this. As I say, I don't remember any of it.

Since then it has taken quite a while to rebuild strength to do any but the most necessary of tasks. Still coughing lots and have a sore throat and the staff are wary of giving me anything to help with pain except panadol. Now I feel like a metamorphosised butterfly trying to inflate its wings in order to move onto the next step. They say home in about a week, but that depends on when this chest infection clears and blood counts results etc.

Burning hot to Cold and shivery

My main nurse is a welcome distraction as I delight in his picturesque phrases..." The BMT transplant is a magic bullet! To put out a Victorian fire you need more than a bucket of water. We give you enough chemo to kill a baby elephant." He loves working here as he knows the patients have looked after themselves or they wouldn't have been eligible to have these treatments. To him it's a reminder every day not to take life for granted and challenges his friends with minor complaints to come visit ward 62 and see what illness really is!

On Monday I began the full on chemotherapy with cyclophosphamide infused over two days. I felt absolutely zonked and nauseous- not a pretty look! I felt like I had just completed a climb on Mt Everest without the oxygen, guide ropes or steps! Then mesna (for protecting the lining of my bladder) was infused at the same time initially creating the worst problems. I had a fairly rare and extreme reaction to it...my face flushed as red as a beetroot and my nervous system ranked up to high alert. Frantically I tried to cool down with wet cloths and a fan while Grant massaged any achy muscles as needed. In the meantime the central venous line in my chest had become infected (called cellulitis) which gave me a high temperature and left me feeling cold and shivery. Can you imagine the paradox of sitting there with a cold shivery body covered in woollen blankies and ice-cube cold towels on your beetroot-red face?

They removed that infected line Tuesday morning and have delayed Robyn's stem cell infusion until Tuesday afternoon in order to give the antibiotics time to clear the infection. Then they will insert another line on Thursday which is a good thing because the medication infusions now go through a vein in my hand which stings. Ouch!

Today the anti-rejection drug cyclosporin was infused into my bloodstream at the start of its 30 day cycle. The only side effect, as yet, is an over-heated body and, yet again, a flushed face. Fortunately my room is the coldest in the unit and is also equipped with a heater, so I am able to adjust the temperature as needed.

I am very grateful to have my family present supporting me through these tough and trying times. I don't need to care what I look like, what I say or what I don't say.

My sister Karole brought Robyn to see me fresh from the blood centre. Amazingly Robyn only needed to give blood for three hours as her stem cell count was so high. They needed to collect an astounding three million cells per kg of my body weight to make 210 million of the minuscule things and succeeded in a shorter time frame than expected. It seems that the injections have done their trick and ramped up Robyn's stem cell supply to the blood. The conclusion is that she is as healthy as an ox! This is truly fantastic as they had warned her that they might need her back the next day for a second round. She has had to deal with aching bones in her lower back, hips and sternum which luckily paracetamol had taken the edge off. Her overall report was that it was not as bad as she had expected and she was glad to have done it for me.

I am glad I asked friends to meet with me in the first week at hospital as in the past few days I've felt so totally zonked that I was definitely not in the mood for chatty company. Mostly I am lying flat on my back and can barely open an eye.

My mind has taken to conjuring up music video like images to make up for the lack of stimulation; unless this is purely a psychedelic side effect of the cocktail of anti-emetic drugs. They change and morph into different and compelling shapes. I have an image of Pegasus rearing up on his hind legs in silver on a black background in bas relief form. The clouds are all etched into diamond shapes that recede into the background. It makes me wonder if some of the far-out artists have tried these drugs! I'd love to capture these images on video and hold an exhibition. Warning: Adults only. Don't bring your children!