The cancer came back. Ally is still 2 rounds ahead.

 Can you believe it?  After having had the partial new jaw construction, and living a good life for a few years, I went through a bad patch of heartburn and ended up going for an endoscopy which revealed that the cancer was back in May of this year.   I was devastated, and had really not expected the cancer to return after all these years.  But it was back.  And I was ordered to undergo 31 sessions of radiation, plus a weekly sessions of Chemo.

I think at the outset I thought I was going to be OK.  There was a bit of denial still floating around, but I was well into the treatments and could feel my taste starting to disappear. It was difficult to swallow, so I know things were happening.  But on a Sunday morning in July I woke up and started bleeding. Not a nosebleed or vomit. About one and a half litres of fresh red blood from the tumour in my throat.  I did not know if I was going to bleed out or survive it, but I still here, so you know how that went.

It was the middle of COVID, so the emergency services of my local hospital would not admit me. They treated me superficially to stop the bleeding, but did  not balance electrolytes, restore saline or take care of other possible damage.  I lay there until my COVID test cleared six hours later. During that time I had a stroke.  My left neck carotid artery became completely occluded.  Bit this would not come to light fir another week or two, when 'floaters' started showing up in my vision and I felt weakness on the left side of my body.

I eventually got transferred to Wits Donald Gordon medical Centre (WDGMC)  and they gave me good care and platelets and washed the blood off me that I had been lying in for almost an entire day.  What I describe to you now in hindsight was not known to me at the time. I felt strange but had no idea what had happened or how it would change the very core of my life.

Over the next five weeks I stayed at hospital, had tests, treatments, and thought I was getting better.  Initially I was treated for aspiration pneumonia.  I resumed and finished my radiation and chemo treatments while in hospital to minimize the possibility of another bleed. Had physio therapy, had many scans and discovered that I had had mild thrombosis.  I learned that I had suffered some physiological change from radiation / episode which caused me to aspirate my food. Permanently. I was given a feeding tube up my nose which would later be replaced by a series of PEGs, none of which ever seemed to be the right shape, fit or type to accommodate me. I never ate again.  The adjustment I was going through was intense.

My husband had been home packing up the house as we had just sold our house and were supposed to move to France - my long term plan for 'retirement'.   He found it hard to cope. He had to pack up the house, wrap up the sale and move our possessions to France, where we have a small house.  I could no help him pack as I was in hospital. I still have no idea what to expect when the container is opened one day  - it will be interesting.  Our pets were in distress and I lost my favourite cat because my husband overlooked serious symptoms of ill health in her.  We  later lost a dog.  After five weeks I was sent home.  My Peg was not comfortable. Over the week I spent at home the Peg started leaking and I went back to hospital to have it fixed.  While in hospital various little problems cropped up.  I slowly started losing my voice.  My husband went to France. I stayed in hospital and a friend offered to put me up when I can out. She also took care of my three cats and a dog. 

I was frail and the hospital did not know if they could let me go because of the problem with blood thinning. In the en they let me go home. Two days layer I had another bleed at my friends house and went back to hospital for five weeks. They ended up deciding not to give me blood thinners again as this would possibly cause another bleed.  By now I was thoroughly sick of hospitals, but still hopeful that with time I might be able to swallow again. However I ended up with aspiration pneumonia again and it became clear - no swallowing.

When I came out of hospital after another five weeks, my friend was overwhelmed by my fragility and immediately asked me to find alternate accommodation.  I have been exploring options and thinks something else is now lined up for the next time I attempt to leave hospital - a step-down facility.  The hospital say I have been treated for that which I had been admitted. But I have picked up a few complications along the line. I got TB - presumably from my weakened immune situation.  Six months of treatment to look forward to.

A week ago a spontaneous stoma opened in my neck. Just a big hole. I was very near panic.  I have since learned that it may be able to operate the stoma, but success rates are not high.  One of the oncologists have arranged hyperbaric treatment for me to generally get well - and hopefully stop the rate of growth of the stoma.  This all starts tomorrow.

I think you have caught  up with me now.  I will post here and let you travel my path with me for a while. If you want to comment. please go ahead. 

I hate blogs that start up all enthusiastic and then peter out and fade after a while. And I vowed mine would not be like that.  My intention was to publish a dozen or so blogs to bring you up to speed with the present time of my recovery and how I got here.  But I discovered it was hard work to revisit the past, painful to relive those experiences and difficult to find the discipline to return and document it all. Harder work than I had imagined.  And emotionally draining. Sometimes one overestimates one's own abilities. No, the clever people say we always do that. There, my bad! I am human, and like the rest of the world I overestimated my cleverness and my abilities. But this is my journey - warts and all - and you have chosen to travel part of it with me and to be part of these discoveries of mine.  It seems like now we have started on a new chapter before the previous ones have been completed. I'll have to catch up later.  While I was still reviewing the history, a new headline is about to break. Have no idea where we are going, but come along for the ride!

What you don't know is that this year I went back to universtity to study - postgrad psychology. I need a new career because with all the speech problems after tongue surgery, what I was good at - speaking well - is no longer available to me.  So off to university I went and as a mature student I have found it very hard work to keep up with 22 year olds.  But I have loved every minute so far, and I enjoy learning about things that interest me. I love gerontology and personality psychology and even research. I hope I make it through the mid year exams so I can carry on with the next semester and graduate - although this is looking a bit optimistic right now.

Why the gloom and doom?  Well, I have what I think is a tumour or lesion or something in my left cheek. It came up almost overnight about ten days ago, manifesting as a bit of tenderness and swelling on the left hand side of my jaw.  Probably parotid gland gone rogue. Maybe a tumour, maybe something else.  It is swollen, it hurts like hell and almost two weeks of antibiotics have not made it go away. I spend my days vomiting from the cocktail of antibiotics and pain killers.  And sleeping - the painkillers work really well when you sleep. It interferes with my studies and it makes me very unpleasant to be near. I do a perfect bear with a sore head impersonation. I am taking Tramal for pain, Zofran for vomiting and several grams of Flagel and Augmentin orally, plus a bit of an IV booster. It has stopped whatever it is from getting bigger. But so far no reduction in size.

Had a CT scan yesterday, will see the oncologist on Monday to hear what the scan revealed. My favourite doctor is away on holiday is Spain. Bummer.  He at least knows to hold my hand while giving me bad news or painful procedures. But he will be back at the end of the week. Then I will ask him to make all this go away. Or at least to help me make sense of what is happening.

I have persuaded my GP to give me all the meds I need in the interim - without her having to make a diagnosis.  She is a lovely Greek woman - AC.  I love the way she swears.  Yesterday she told me:"I have given you enough f...ing antibiotics to floor a f...ing rhino and it still hasn't helped. I am tired of standing in for your bloody ENT specialist, this is a f...ing disaster. Go get some f...ing professional help!"  Then she gave me a hug and a script for more opiods. 

You kind of know after a while what the options are.  You can't really have surgery because of previous radio therapy which messed up the blood supply and which will cause trouble with wound healing.  You can't really have radiation again because the area has been maximally radiated previously and any more radiotherapy would only result in necrosis. Of couse these options remain as a very last resort, just before accepting death - but in the mean while, you go conservative with chemicals. Bit in a big way. High dosages, broad spectrum. And you hope for the best.  And if you take enough pain meds you can imagine all sorts of religious experiences and archetypal revelations.

And try to carry on with life. Study for the exams, trying not to fall asleep on every page.  And tell yourself that you are so close to realising your dream that this is just a small hickup and that the brass ring is in reach.

I think it will be ok.  I will let you know when I know more.  Mean while, wish me well.  I have been clear after my last radiation therapy 66 months ago.  I want to believe this is just a little blockage of my  parotid gland, and that the antibiotics will clear it up.

Somebody said the it will be as we say it is. I will be fine.