In 2011 when Julie was first diagnosed with cancer the medics gave her about three years life expectancy as long as she did chemo, radiation and took the drugs that they prescribed.
We had both seen friends of ours suffer badly and ultimately succumb the prescribed regime.
Cancer is a bit of a bitch. When you get medical professionals telling you this sort of thing you can either tow the party line, or do your own thing.
The tipping point for us came quite early on in the diagnosis.
Jules said to me “Look…, the one thing about all of this is that we won’t be able to live long and enjoy our old age together.”
So we decided to have our old age together NOW !!
The outcome was to eschew medical opinions and crack on with a healthy alternative lifestyle in order to get the absolute best out of the time that you have left.
At the same time knowing that the clock is ticking.
With that in mind we said “No conventional medicine ! “Thank you”, we are off on our own journey”.
As a result, we packed in our jobs and downsized our lives as well as changing our nutrition and surroundings to the healthiest lifestyle that we could muster.
We then embarked on a series of adventures, the least of which were “great” and the best of which were “absolutely fabulous”.
Our latest excursion took place in Sept 2016 when we arranged to meet our Canadian friends at a villa in Croatia. They would fly in from Toronto and we would meet them in Croatia.
Simple …..? No … !!!
Julie decided that it would be a good idea to drive, which when you think about it is not a bad idea because you get to see the length of Europe.
As it turns out, it was a fantastic drive through Holland, Germany, Austria, Slovakia, Bosnia and Croatia with some wonderful scenery.
After a four day drive we arrived at a fantastic villa that our Canadian friends had arranged for us to stay in for a week or so.
It was excellent !! Perfect !!
We had a great day catching up with our great friends and exploring the local area which was exceptional.
The next day, we got a ferry from our waterfront villa to the island of Korcula. A famous Croatian landmark. As we walked down to the ferry Jules said “I don’t want to worry anyone, but I am peeing blood”
Not …… “I have blood in my pee”……..But, “I am peeing blood..!!”
There is a not a subtle difference. This opinion was confirmed by the only Medic on Korcula Island who diagnosed a ferry ride and then a two hour trip the nearest hospital in Dubrovnik.
This was like having a major medical incident in Manchester and then being told that if you wanted to be treated you would have to drive yourself to Birmingham, or beyond, on the off chance that a Doctor would be available.
That drive was the most stressful event I think that I have ever endured. Our villa was on a peninsula called Peljesac and the drive involved two hours of twisty tourney cliff roads. Just like the ones that are on Top Gear and James bond films. However, when Julie was in utter, utter agony and throwing up on the back seat (plus, we did not know where the hospital was) my stress levels were unbelievably high.
In fact, when we were high in the mountain region of the peninsula. I thought that she had passed away on the back seat of the car.
Fortunately, she hadn’t and by the time that we had got to Dubrovnik had recovered consciousness and was able to guide me to the hospital by lying on the back seat and using the Map App by saying “Left, Left, Right, Right, You’ve gone wrong you pillock !!!”
All because she wasn’t able to sit up and look through the car window.
We got to Dubrovnik “A and E” hospital in the end. A 1950’s communist grey breeze block building, if ever I saw one !! Something straight out of a film set. Steel shutter doors, dim lit corridors, or, indeed, unlit corridors. But fabulous nursing staff… !!!
After a lengthy assessment in A and E the medics decided that kidney stones were the problem and that Jules had to be admitted to the main hospital.
What a joy that was. A trip back in time to 1960’s Communist Yugoslavia!!
By this time, it was 10.00 pm and there was absolutely no way that I was going to drive back to P. Two hours on unlit coastal roads with no co-pilot was not the best idea in the world, so we decided that I should check into a hotel in downtown Dubrovnik.
This was one of those weird situations where you check into a hotel in a foreign town that you haven’t a clue where you are, in the middle of the night, with just the clothes that you stand up in, shorts and Tee shirt !!
After three days and a load of intrusive tests , the Croatian medics decided that the issue was nothing to do with her cancer but was a kidney stone episode. We were happy with that diagnosis and after three days we drove back to the villa with Jules pretty much restored to full health apart from a dull ache in and around her hip.
The rest of the time in Croatia went swimmingly (apart from me having to go to Hospital in Split for one day – but that is another story !!!!)
Julie’s dull hip ache did not really go away, but we managed to spend the rest of our holiday with our Canadian buddies and pretty much shared the driving back from the Balkan States to catch our ferry from Rotterdam to the UK.
We landed in England on the Wednesday morning and drove home for a quick turn-around so that we could drive down to the South of England for a pre arranged Reunion with my University mates. Another 400 mile round trip !!!.
By this time, Julie’s hip pain was getting a lot stronger and spreading around her back and ribcage.
Those damned kidney stones, we presumed.
The following week Julie’s kidney stone pain becomes increasingly intolerable. We had always had a code of “How is the pain?” based on a score of 0 to 10. Zero was, obviously, no pain; to ten which meant “Call an ambulance NOW !!!! ”
As the week progressed the pain hovered between five and sevenish. On the Thursday night I knew it was a ten, but Jules said it was a seven so I had to abide by her score.
Come Friday morning, she immediately had to admit that it was a ten …..!!!!She was in unbearable agony and no matter what we did could not even get her out of bed, let alone get her dressed or downstairs, it was desperate measures.
Oh shit….!!! It was phone 999 time which is a phone number that you do not take likely nor often in your lifetime.
I called the Emergency Operator and gave her all the details asking for an ambulance, without delay, because Julie was in great pain and distress and that I could not get her out of bed because of:
- “Breast Cancer”
- “Spinal Cancer and Spinal Compression”
- “Immobility and Acute Pain “
- “Nausea etc……”
After answering the standard operator questions, she said, and I quote:
“I’m afraid that the computer says that your wife does not need an Ambulance and should go to her GP in due course for assessment.”
I went fucking ballistic….!!!
After a few more acutely pointed phone conversations with the emergency services a very very kindly trio of paramedics arrived and, with appropriate pain relief, finally managed to extricate Julie from the bedroom and onwards to be admitted to the EAU (Emergency Assessment Unit) at Salford Royal Hospital in Manchester.
To cut a very long story short, the CT scan showed that Julie’s pain was nothing to do with kidney stones whatsoever. In fact, her cancer had spread to her liver, pelvis and further down her spine into the lumber region. The cancer had caused her lumbar vertebrae to crumble and compress her spinal nerves.
However, the big, hitherto unknown issue was that there was a massive tumour at the top of Julie’s femur (Thigh Bone) which, if she was to put any pressure on, would fracture forthwith. The medics, immediately, confined her to bed until they;
- Dealt with her acute pain issues,
- Figured out what to do with her hip,
- Controlled the crumbling spine.
- Identified anything else that needed sorting out.
For the next two weeks or so Julie was confined to bed in the Spinal Unit whilst the Pain Relief Team figured out what the correct dose of Morphine and other heavy duty shit was needed to get her, at least, comfortable.
Eventually, after a couple of weeks, someone in the “Bright Spark Dept.” decided that the way forward was to give Jules a Total Hip Replacement so that her femur wouldn’t fracture and that it would remove the cancer eating into the bone at the top of her thigh. This was a good plan apart from the fact that it would not stop the agony of having a compressed spine. Unfortunately, it made sense to do the total hip replacement to at least give Julie a chance to stand up once again.
Without it, she never would.
Our concern was that, after the hip job, she would still have the spinal pain in addition to the post operative pain from her hip replacement. Furthermore, she would have to wait a couple of weeks to recover before the spine team could swoop in and perform their magic. Normally, nowadays, they get you up and walking about after a hip replacement, but in this case that would be impossible because of the agonising spinal cancers.
As a consequence, she would lose what is considered to be vital physiotherapy because she had to wait for a couple of weeks by lying in bed waiting for the Spinal Team to come up with their cunning plan.
Needless to say, Julie was duly prepped and “Nil by Mouth” for the Hip Op. Everything was going to plan until about mid afternoon when the Op was cancelled because some poor woman had decided to throw herself from a Motorway Bridge over the M57 on the morning of Jules’ operation. Salford Royal is the trauma hospital for the central Manchester area so the surgeon who was scheduled to give Julie her new Hip had to piece together this poor lady. At around 3.00pm the surgeon called off the Op which knocked everything back for a few days before the Op eventually took place.
More pain and frustration.
After another couple of weeks the Spinal Ninja Team decided to apply themselves to Julie’s vertebrae and their calculated plan was to inject her cancerous vertebrae with cement. That would be two measures of sand, one of cement and a tablespoon of calcium for bone stability.
It would now be a month of Julie lying on her back looking at the ceiling and all the various indignities that go with that.
It would be a further two weeks or so before a complete meltdown meant that something positive had to be done. During that time, just to add to the fun, a poor old dear with complete dementia was put onto the ward. Six other ladies, including Julie, in varying states of recovery were then subjected to 36 hours of continuous screaming.
When I say screaming, I mean the sort of screaming that means that you cannot hear what someone is saying across a hospital bed, a distance of some four or five feet.
There is nothing like a challenge to recovery and that is only the thin end of the story but it would be unfair to delve into that.
After a further two weeks had elapsed the tipping point occurred.
In our minds, potentially, there was no end to the daily, weekly, monthly cycle of medical routines. Julie was very upset, to say the least.
So we asked the medics “What would it take to get out of here?”
Having asked the question, we duly overcame the various obstacles within a few days and Julie come home to admittedly little fanfare and some trepidation on my part as the main nurse, cook and washer upperer.
On 29th November 2016 Julie came home after six, or so, horrendous weeks in hospital under the care of the Spinal Team, Oncologists, Orthopaedics, Medical Team and the Palliative Care Wallahs all of whom were brilliant in their own idiosyncratic ways.
The next month was brilliant.
No pain to speak of, full mobility and a generally “normal” life.
On New Year’s Eve (Our Wedding Anniversary) the old pain kicked in again.
That Cancer is a Bitch.
So I spent New Year’s Day going from Palliative Care Team to Emergency Doctor to find a Pharmacy that was open and also stocked a particular type of Morphine.
A New Year challenge that I didn’t expect to have to do so soon.
For anyone who thinks that just because Julie is out of hospital that she is “better”.
Far from it……
However, we will regroup and rethink.
Somehow and from somewhere bright ideas will come forth and ever onward…………………………….