The Australian cricket team were touring for the much anticipated 5 Ashes tests. England were dominating finally after so many years of Aussie success. Would that continue in this series?
To recap, surgeons had performed an emergency operation on my back to stabilise my spine. It had earlier been discovered on a routine scan that cancer had eaten away at one of the vertabrae in the lumber section of my back. A steel rod had been screwed into good vertebrae above and below the cancerous vertebrae to strengthen my spine. This had caused extensive damage to nerves as well as weakening muscle. The new rods needed time to bed in, so I was very sore with a lot of nerve pain. Unfortunately, the surgeon was unable to remove the tumour as it was too large. There was a real chance that I would have bled to death if he had tried.
After the operation I only had one opportunity to meet with my surgeon before he went on holiday. He came to see me the day after the op when I was on my own and very drowsy, I had been told to expect a visit by him at some point in the day, so I had tried to stay awake . Emma had come and gone by the time he arrived. I appreciate he had been in surgery all day, however he was about to give me the first news of how the operation had gone and I was acutely aware he wouldn't then be available for further questions. The amount of times I had received key information given to me in a vulnerable, confused state was getting a bit silly. He was also alone as well so it wasn't clear who he was handing my case over to.
Kids to the rescue - trying to cheer Dad up.
The surgeon said the op had gone well. He had spoken to my Oncology team and the best way forward would be to go for a course of Radiotherapy to try to reduce the size of the tumour, it would then be re-reviewed by his team with a view to surgically removing it safely.
I was in hospital another week or so recovering, the doctors that did the morning rounds checked the operation site now and again but that was it.
We were discharged under a cloud of confusion. We had an Oncologist, Orthopediatrician, Radiotherapist and GP all involved but there was something niggling at us that the post op plan was changing. A few little comments from the doctors on the morning rounds didn't make sense. This was confirmed after our meeting with the Radiotherapist later that month.
Having been discharged, I was able to relax in the garden most of the time. I was able to waddle about with sticks so I wasn't entirely laid up. I needed to stay active and work on strengthening my core. I was on plenty of pain killers so that kept me on top of the pain nicely.
All this created a room at the top of the house that the kids were wary of. They had to ask mum if they could go in, they had to be quiet nearby and I wasn't always in the best frame of mind when they did come in. Dad had become a bit vacant at times.
The problem I was having was a lack of quality sleep, I would take ages dropping off, as my muscles relaxed and on the brink of sleep, I would be hit by a sudden explosive back spasm, which happened time after time each night, it would keep me awake until exhaustion kicked in eventually. I would only have an hour or two before I was awake again. I got into the habit of always checking the time on my iPhone, I would then read the BBC news and Sports apps, I had books downloaded on my iPhone as well and read book after book in a pitch black room on a tiny, brightly lit screen. Distracting for Emma and to make matters worse, I had got into the habit of using a bedside urine bottle, which was a necessity as I wasn't sure or quick on my feet, particularly at night. Poor Emma would be woken to sounds of urine on plastic 2 or 3 times a night. It didn't matter which way I held it, the voluminous deluge would echo round the room, broken only by a "sorry" from a tired but embarrassed me. I was reminded of a scene with Frank Drebben in Naked Gun, when he left his microphone on while visiting the loo. Emma would empty it for me in the morning, while I slept through her getting the kids ready for school, going into town for supplies and returning without me noticing.
I was fast entering my own little world, on waking up, and without leaving the bed, I would place my breakfast order, turn on Sky and watch last night's recorded shows that had kept Emma awake as they were recording the night before, scoffing my breakfast.
I was always polite and undemanding, however I assumed every request I made would be carried out immediately.
In the daytime I was usually drowsy and in pain, the boys and I did sometimes all sit on the bed and watch the Discovery channel, we all liked Bruce Parry's series on the indigenous people of the Amazon. A story that seems to echo throughout history, the white man coming along, taking anything and everything and destroying the rest.
It got me reading about South America, I wanted to be inspired by a moment in history that I could use as my "against all odds" story, There must be some character in history who I could use as my talisman, to give me strength to fight my own battle.
I read about Machu Picchu, the lost city of the Incas high up in the Andes that was only discovered by an American back in the early part of the 20th Century. It was beautiful but so inaccessible to get to. A bit like me I thought jokingly.
Would it be ever possible to get me to Machu Picchu? I started reading books on the Incas and how something like 165 Spanish Conquistadors on horseback were able to beat an Incan army of 5000 and kidnap their king. The Incans had never seen a horse before, let alone a horse trained for battle covered in armour. It was the horses, swordsmanship and organisation of the Conquistadors that led to an Incan massacre.
I dwelt on what it would be like to be a conquistador, men who gambled their lives on the promise of gold beyond their wildest dreams, they also had the knowledge that a 30000 strong Incan army laid in wait somewhere between them and the gold, an army whose peoples belief system involved human sacrifice. These men took the risk of an unspeakably horrible death in their stride and marched towards it willingly. I then thought about my life, what risks had I taken? Where was my armoured horse? Who were the Incan army in my life? Was it the cancer? Were the conquistadors heroes or villains? I couldn't find an analogy that sat straight with my situation. The white man and imperial history are not happy bedfellows.
I ended up watching Zulu, 150 or so heroic men defending Rorkes Drift in what is now modern day South Africa, against a devastating Zulu army, running relentlessly at the hurriedly made British defences. Wave on wave of attack was repelled by the British Army, the film introduced us to a dozen or so of those heroes, some unlikely, however it failed to introduce us to any of the Zulu warriors.
I thought the British army was my immune system and the Zulu army the attacking cancer. Against all odds, the Zulu (cancer) finally saluted the British and went away. The majority of the British army survived. At last, an analogy to draw strength from. I didn't dwell on the fact that the English had commercial interests in Swaziland at the time and that the Zulu were rightly defending their own lands.
Back to reality, I was making next to no progress with my back. Worryingly, the operation meant I wasn't allowed to take any of my cancer drugs as they prevented the healing process to take place effectively. It would be a 6 week gap before I was allowed back on Sunitinib.
I had also developed full blown shiver attacks. I would grow cold very quickly after a shower, despite Emma's efforts to heat the room, get me dry and then dress me. It felt like my core body temperature had dropped suddenly and my teeth would start to chatter, my neck muscles would tense up incredibly and I would go into a sort of shivering fit as I lay on the bed, under duvets, blankets and anything else we could find to throw on me. I think it was partly down to panic as Emma would speak gently and reassuringly to me and eventually I would calm down. These were emotional moments for me, where had I fallen to since contracting this disease? Cramps from nowhere, shiver and panic attacks from nowhere, no mobility, bed bound, a 6 inch wound that needed dressing every few days. Cancer in my body that was going unchecked, thriving again for all I knew. This was a difficult, dark period for me.
The District Nurse finally felt my wound had healed externally enough to not need a dressing. So I was able to have my first bath in a month or so. It was a nice soak but I didn't feel that good. Emma, as ever was on hand to help me out. I got out and needed to hold onto the sink while Emma got the towel, suddenly I blacked out, Emma had caught my fall and was basically half trapped under my weight, luckily my brother in law had come round to cut the lawn. He was also a ship's medic on leave. He put me in the recovery position, made sure I had towels and dressing gowns over me to cover my pride and to keep me warm. Emma rang the ambulance, I was starting to come round, soon I was sitting up. The medics arrived and managed to get me onto the bed and started doing checks on me, they did an ECG amongst other things and were eventually satisfied that I had blacked out due to low blood pressure from a combination of hot bath and pain relief. They rang the Oncology dept and alerted them of the events.
All ok, except it left me with an aversion to having a bath.
We hadn't until this point considered a Macmillan Nurse, we weren't sure what part they could play in my situation and so we never followed up contacting them up until this point. I think we were both unaware of what benefits they would bring us at the point we were at. Although I had been told there was no cure for this disease, we hadn't reached a point where it was clear I was in a terminal position. The Sunitinb (cancer drug) had so far, apart from the spine, kept new Cancer at bay. I was under the false impression that Macmillan only get involved at the terminal stages of the illness. I also remembered seeing a clip on last year's Children in Need where Macmillan Nurses helped children understand the situation better when their parent was terminally ill. We felt we had managed the information we were giving our kids pretty well. I was living with Cancer until I was told otherwise and that's what we told our kids.
However, our situation had gone from bad to worse with my back problems, we had been given a number from our GP months before. we decided to call and what an excellent decision that turned out to be.
A guy called Martin rang up a few days later, made an appointment to visit us and within half an hour of his first visit told us we were entitled to certain financial benefits we weren't currently claiming. Unfortunately we could have claimed some of these back in September 2012. They don't back date. We were glad of this news anyway. What's more, Martin was a very pleasant man with a lot of experience of Cancer and the management of the illness itself and the common side effects you get from pain killers and Cancer drugs.
Finally, we had met someone who spoke our language, who was prepared to spend as long as it took just listening to our problems, who knew about the peculiar side effects I was experiencing and was able to suggest techniques to alleviate them. Martin liaised with my GP to better manage my pain killing combinations. He was able to suggest who would be the best person to speak to about certain things as it was sometimes unclear. Martin was instantly invaluable to us.
Macmillan also sent a Physiotherapist called Jan to help us. She gave me some core strengthening exercises and techniques for getting out of bed, in and out of the bath, bending down etc. Again a first class service from Macmillan. Jan came regularly, brought crutches for me, a kamode. Jan got me on my feet more, made sure I was walking and corrected my posture where she could. I cannot speak more highly about Macmillan and I would suggest if you do have cancer and have not yet called on their services I would inquire now, there is a link to their website on the Right column bar of this blog.
Emma had also been looking at my diet, the NHS encourage you to eat a balanced diet and if you are underweight due to weight loss which some cancer sufferers get, to eat a high calorific diet to get your strength back.
Here is a link from Cancer Research UK with their latest advice.
There are hundreds of books about the best nutritional diet for Cancer, One which caught our eye was a high alkaline diet and more extremely, a raw food diet as it was claimed cooking any food would destroy the key nutrients that the body needs to fight cancer. I bought a Raw Food recipe book and a dehydrator which removes the water from fruit and vegetables. I used it twice. I found I didn't have the time or the energy to commit to such a lifestyle.
I did however, start to have a daily Alkaline juice made up of Kale, Broccoli, apples, celery, ginger, Romaine Lettuce and Cucumber which was not as bad as it sounds, we had also read about Wheatgrass as a superfood. Wheatgrass is full of minerals, enzymes and anti-oxidants that some say are effective against Cancer.
We looked online and found a UK supplier who sent us a tray of grass, which is basically a week's supply, we also needed a special manual juicer that can juice fresh Wheatgrass.
Each day you juice the grass until you have enough for an expresso size shot. I would drink it down in one. It wasn't very nice, however I was focused on the benefits so it became part of my daily routine.
Over time it didn't agree with me personally. It tended to give me diarrhoea type symptoms, I was tending to get those symptoms with my Cancer drugs as well so this was a superfood I couldn't continue using.
The whole Cancer diet industry depends on what you want to believe, in the books you read. There is no regulation here so a vast array of dietary lifestyles are put forward in expensive books all claiming to be the effective treatment against Cancer, however next to none have been scientifically proven, or have but with a very small number of people.
There is no way of telling the good from the bad. All I would say is use your common sense. We have asked a number of Doctors who have treated me and none of them have endorsed any of the books or lifestyles we were reading at the time.
I had lost a load of weight with my cancer very quickly and had not been able to put the weight back on. My Macmillan nurse said I should eat as much food as I felt like eating and not to be worried about the high calories. His argument was that you were stronger and better prepared if you were to take a turn for the worse in the future.
My 42nd birthday, The kids brought the cake upto my bedroom
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Birthday Cake time up in my bedroom, Emma and the kids were just out of shot (honest)
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The plan was for me to receive 5 doses of radiotherapy all in the same week. The last time, I'd had one big dose which made me instantly ill. My doses this time would be diluted as it was spread over 5 consecutive days, but the therapist said it was hoped it would reduce the back pain.
We picked up on this immediately, the therapist was telling us the purpose of the treatment was to help reduce the pain I was in and not to reduce the size of the tumour as had been explained to us post back op.
The plan had changed subtly, but massively in consequence for my long term prospects. We raised this with the therapist, she wasn't aware of any plans to try to reduce my tumour size.
If we weren't able to get the tumour out, it could keep on enlarging and ultimately disable me for life due to spinal cord compression. Worse still it would kill me.
All they were offering was treatment to hopefully help with pain relief, for how long?
I was also told due to the proximity of the tumour to the Spinal Cord and the damage to soft tissue that radiotherapy can cause, that this would be the last time Radiotherapy could be offered.
I imagined a big red beautiful bouncing balloon surrounded by smiling admirers, suddenly its knot is loosened, air rushes out, escaping through the blow hole, making an absurd, indecent shrill as it goes. The stunned onlookers can do nothing to stop it diminishing in front of them into nothingness.
After a difficult meeting it was clear that nothing could be sorted out here.
Who exactly could we turn to so that my best interests were being looked after?
We were experiencing a silo effect and not for the first time. We had so many people involved with my case but it felt like no one was looking at the big picture as case manager
The problem was, we couldn't just get back in touch with the Orthopaedic team. They are lost in the system to you. You are back at the end of the queue and have to wait for an appointment. All we wanted was for the Orthopaedic team to speak to the radiotherapist and our oncologist, to make sure we were all on the same page, to get this thing back on track to where we thought it was.
We called the Oncology team, they seemed to be guarded on the shrink and remove tumour plan.
Over the course of the month, the plan had changed to a pain management case and very disappointingly no one had told us or explained why we couldn't blast the tumour to high heaven.
I would be given the highest dose possible, so I suppose that was the best they could do.
The Radiotherapy was administered in early June. A preliminary session the week before took precise measurements of where the blast would be aimed the following week. They mark an 'x' on your chest that they ask you not to wash off. We drove 40 minutes for treatment everyday to sit in a waiting room for 40 minutes and then have 5 minutes of treatment.
Each day I had close family all preying or willing the tumour to shrink. I had told them of the blast times. I had read that collective, simultaneous, positive thinking could make a real difference.
We were prepared to try anything.
My cousin had sent me details of a Croatian man who, by laying on hands, it is claimed, could cure most illnesses. There were various options to suit most budgets, I noticed he worked out of a village hall near Romford in Essex. We decided to not use his services at this time.
We were hoping that the tumour would greatly reduce in order for them to operate and remove it completely. However we weren't sure even if the tumour did shrink, would anyone be prepared to do anything about it.
We met our Oncologist in mid June, they started me back on Sunitinb after 6 weeks without cancer protection. At the end of this 4 week course I was due another scan to check for progression. It would also tell us whether or not the Radiotherapy had started to shrink the tumour.
All Emma and I could do was hope for some miraculous shrinkage that would make all parties agree an operation was necessary.
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| Fred using his charm and the man with the stick - day out at Bridlington - mid July |
As it turned out - 4 weeks later the scan came back with terrible news. My back tumour was growing bigger and I had multiple tumours on my lungs!.
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