My Fight With Cancer
Christmas 2002.
Shortly after the festive period I started to feel generally unwell and couldn't quite put a finger on it and by the end of January 2003 I noticed that I had a lump on the back of my tongue. It started to become irritable and painful over the coming weeks. I went to my local Doctor surgery and saw a practitioner there by the Name of Doctor Picton, a staunch no-nonsense looking woman who resembles something of a fearful schoolteacher.
After expressing my concerns with regards to the level of pain and discomfort I was experiencing...and of course the lump, I was told that I had an inner ear infection and was told to take Sudafed. Trusting the Doctor's judgement I went away and took sudafed. Nothing was said about the lump on my tongue.
Two weeks on and sudafed did nothing to alleviate the problem.....in fact I was in more pain and was taking the strongest painkillers I could find. A lump had now began to appear on my neck. Inside, I felt that there was something seriously wrong. My second trip to Doctor Picton ( and this was only due to my own GP DR Montgomery being away ) was no more productive than the first.
"I feel more unwell and am in more pain, and the lump on my tongue is bigger and more painful" I explained to Doctor Picton. Funny how I kind of knew when I sat there that my fears would not be entertained, and that only her diagnosis would be of any importance. I knew this was serious by now and expressed these concerns in the hope that I would be sent for tests. No such luck. "This is nothing more than an infection" she told me in dismissive fashion. "What about this lump on my tongue" I said, wincing in pain. To which she responded that I was making a big deal out of nothing and prescribed me regular painkillers and some anti-biotics with the parting farewell of: "Come back and see me in two weeks If it's no better" I left the surgery that day feeling that this woman was never going to take this seriously and I was effectively flogging a dead horse.
I carried on the best I could for the next 10 days or so though I was starting to get scared. One Sunday night I sat in front of the TV with my then fiancée Jane and I was close to tears with the pain and discomfort at the back of my tongue/throat and which had now spread up the side of my face. "I'm taking you to hospital....now" said Jane. I went willingly.
On arrival at Wexham Park Hospital near Slough, we were referred to the ENT department where I was seen by a duty doctor. After a good look down my throat he told me "I don't like the look of this" and I was immediately given an appointment for the following day at the King Edward hospital in Windsor. Two specialists poked and prodded and probed while I just tried to deal with the pain I was in. "This could be a cancerous tumour" they told me. My worst fears were starting to materialise. Doctor Picton had not even considered this possibility or was just plain ignorant to patient's concerns. I could have been here many weeks ago.
The next step was for me to be admitted to Wexham Park Hospital for a biopsy where the truth behind the lumps on my tongue and my neck would be revealed. I already knew the outcome. I think it's an instinctive thing. This was not a regular illness or infection. One week later I was wheeled into theatre for a biopsy and within another week Doctor Jeffries, the consultant assigned to me gave me the news I was already expecting. The lumps are cancerous. You have Tongue Carcinoma and neck cancer. I gave up my job at Logistics Handling and prepared myself for the road ahead.
I was swiftly introduced to Doctor Katherine Lemon, a very prim conservatively dressed oncologist who explained to me that I would require six weeks of intensive Radiotherapy treatment in an attempt to eradicate the Cancer. I never realised at this point just how tough all of this was going to be. It was now March and my treatment was scheduled to start in a two weeks. First though, I would need measuring for a plastic facial mask which would keep my head steady on the treatment table and would be marked accordingly in the right places for the benefit of the Radiologists. I would also need to be fitted with a stomach peg. My throat would be so severely burned by the radiotherapy that I would not be able to eat for many months after treatment and would only be able to take food in liquid form via a tube inserted into my stomach.
I didn't sleep a wink that first night at home after confirmation of the diagnosis. I just lay there gripped with fear as the truth began to sink in. I had cancer and I could die. It was only a year since my Uncle had died from cancer so this was still fresh in my mind. My fiancée Jane was optimistic about the future. "We'll get through this" she said. But then the people without the cancer always do say that. Nevertheless, she was my rock from the start, but my illness would eventually drive a wedge between us.
Although I knew that I would have to tolerate some degree of suffering, I could never have imagined just how much my illness would affect my life. The first two weeks of treatment were plain sailing and I ate as normal. On the third week it became difficult to eat and my neck was becoming very red and burnt. I was coping easily though. By the fourth week I was forced to give up solid food and I was in pain from the burns to my neck. Now I had to pump liquid ensure into my stomach with a large plastic syringe at regular intervals to sustain my calorie intake...but this was a chore and I had no appetite and no interest in anything other than the pain I was in. On the fifth week of treatment I was assigned a district nurse to change the burn dressings on my neck. They had become very severe and she told that she had never seen anything quite like it. Most people will have their radiotherapy aimed at one specific area and will not suffer too badly. No such luck in my case. My radiotherapy was being directed to three areas around my neck, which meant that my throat had closed up completely. Even water had to pumped into my stomach.
By the time I had completed six weeks of treatment I was so severely burned around my neck that i could only get some sleep sitting bolt upright to stop my skin from tearing loose. I was so weak that I couldn't even feed myself. At night I was plugged into a machine that slowly administered liquid ensure into my stomach so that I took on some nutrients to keep me from wasting away though my weight was dropping rapidly with every passing week. I felt like giving up and I wanted to die.
Depression followed and I saw no light at the end of the tunnel. The pain was unbearable and I sat in a chair frightened to move my neck or attempt to open my mouth as my jaw muscles had tightened up from the Radiotherapy and the skin around my neck look liked it had been ravaged by a mad dog. I was weak and listless and had begun taking copious amounts of oramorph and the rarely prescribed cocaine mouth rinse. When I ran low on these products I would panic. Without them I simply would not have got through the pain threshold. I was however, becoming addicted.
At night I sat upright, unable to lie down and the hum of my nutrient machine was constant. My bladder was playing tricks with me and sometimes I would unavoidably wet myself and the furniture I was laying on. On occasion I would twist myself around to get comfortable and the feed tube would detach itself from the machine spewing ensure all over the carpet. Life was a nightmare.
I started to want to end it all. Having gone through depression when my marriage broke up, I was experiencing those same suicidal feelings....only worse. Jane however, was by my side side during the very worst of it all. It was Jane who cleaned the carpet, and Jane who cleaned me. It was also Jane who ferried me back and forth to the hospital on a weekly basis. I was too weak to drive,walk, or catch a bus. Trouble was, by now I had stopped feeding myself and Jane would sometimes sit there trying to syringe ensure into my stomach peg without any co-operation from myself. I was giving up. I now had no interest in life or anything it had to offer. Two things probably kept me going at this point. My five year old son would want his daddy around in the future and my mum wouldn’t want me to give up this easily. I was all she had.
In my last week of treatment I was admitted to Mount Vernon hospital for an unspecified time on the ward. Jane couldn't cope and I couldn't help myself. Two weeks in Mount Vernon gave me a little security and from my point of view, I was better off here. Things stabilised a little and during my time there I was with other cancer sufferers going through varying stages in their treatments. Here I met Tony Treliving who was suffering from a form of bone cancer and was in a private room under isolation and being pumped full of chemo. We became friends. On my discharge we vowed to keep in touch.
Back home things went from bad to worse as I became thinner and struggled to feed myself. Some days I would take no ensure at all. I came to despise the smell of the stuff. I had numerous mouth infections and some breathing problems. I had no strength and I was still in pain. By this time I was addicted to Morphine and got the shakes If I slowed down my intake. Stopping it was not an option. And so time dragged on. My relationship with Jane had lost the sparkle it once had and we had started to drift apart. I went through the entire summer in a zombie like state with my only relief coming from talking to other cancer patients on The Mouth Cancer Foundation. Even this was an effort. Most of the time I sat around injecting myself with morphine until i was in a trance like state and I no longer thought about the pain and discomfort.
This kind of life however could not continue. I tried everything I could to help myself with the aid of Psychologists and doctors and anti-depressants but I had lost interest in life and was not eating. I still couldn't eat solids and had stopped the ensure feeds. I could manage cups of tea now and fruit drinks but you can't live off of those alone. I still wanted to die. My previous fast paced life was at a standstill. Family and friends tried to understand and to assist in any way they could but it's difficult trying to put yourself in somebody else's shoes and to try to understand how devastating this kind of illness can be.
Toward the end of the summer in 2003 I was still in a stupor and the previous months had passed me by in a haze. I had sunk into a deep depression and was reliant on morphine. I was cracking up. I was painfully thin and had lost about a third of my body weight. One night it all got too much. In Late September Jane took me to Hillingdon hospital where I was admitted to the Mental Health Unit for an indefinite period. Though content enough to go there at first, I changed my mind almost immediately on admittance but as I was in such a state I was told that I could not go home. It was in my best interest to be kept there. The staff had their hands full trying to make sure that I took my liquid feed and to encourage me to start trying to eat solid food again. The biggest task was trying to wean me from my Morphine and I was only given small amounts, which were gradually lowered over the coming weeks. At night I would lay on the floor shaking and sweating and pleading for a larger dose of the drug I had become dependant on. This was hell on earth.
On the ward I gradually shook off my Morphine addiction though it was torture to begin with. I also started to learn to eat again. I met some people here that I bonded with and we shared our thoughts and fears about life as it currently stood. From this point on I moved forward. Eating was still a problem but I persevered. I had got used to not taking food by mouth for so long that I no longer wanted to. It was painful with the side effects that I had such as limited jaw movement and lack of saliva. Food had to be covered in sauces, chewed slowly, and I could taste little.
On my discharge from the hospital I slowly built up my strength and began to eat more and more though there were certain things I simply couldn't eat and some foods were either too acidic or had no taste. I used to like eggs but the taste and texture of them now made me feel sick. I still don't like them to this day. But this was the turning point that saw me start to move forward and to begin to cope with life after Cancer and the debilitating treatment and pain. Life was far from normal as I had given up work months previously and was on Incapacity benefit. I still didn't sleep very well, was still very tired and had other health issues as a result of the cancer. This of course affected my love life and my relationship with Jane suffered as a result. Somehow we persevered and in February 2004 we had a holiday in Malta in an effort to rekindle our partnership and generally get away from it all.
I had by this time become involved with the Community Cancer Centre close to where I live in Yiewsley. I went there frequently and spoke to people there about how I felt. In time these people became my friends and I took on the role of Chairman for a while before simply becoming a trustee. The centre was very much a second home to me at this point in my life. I continued to keep in touch with Tony Treliving and we had managed to meet up a few times and discuss our progress. Tony had gotten over the worst of his problems but the chances of his Cancer returning were higher than mine. Regardless of this, he was in good spirit and we spoke on the phone often.
Going back and forth to the hospital every few weeks was commonplace and I was in no way ready for work either mentally or physically. Indeed, I had a very different outlook on life and had no intention on going back to work full time and killing myself in the process. My priorities changed....making money was not one of them.
It was a year since my diagnosis and it was a year that I would rather forget. I had given up smoking for good by now and was eating a simple and healthy diet. But eating was not the same experience as it once was and maybe never would be. I produced little saliva and certain foods had lost their appeal, were difficult to eat, or just didn't taste the same. For some time eating was a necessity rather than a pleasure and I concentrated on previous pastimes and hobbies such as writing and tidying up classic cars. I also made time to exercise and go swimming and tried to get back some kind of normality in my life. But I had to have most of my back teeth extracted. The radiotherapy had loosened the roots and now they were gradually working their way loose. I had them removed in Wexham Park Hospital. Of course, this was another setback but nothing too major. I soon got used to missing a few teeth.
As I improved over the next year that followed I began to look for work options at the end of 2005 I found myself a new job in Community Transport. Once I got started in this new role I soon found myself enjoying life again to some extent though things at home were not so good. Jane and myself shared little common ground. I was beginning to come out of my shell but Jane lacked my passion to do certain things and to travel. I tried to coax her pretty much against her will. Our relationship had become stale. What made this worse was when my ex girlfriend tried to sue me for a large sum of money over equity in a property we once shared and over a book I had written. With my new job and a litigation case to fight I spent all of my spare time writing case statements, replying to Lawyers correspondence, and generally planning how I would win the impending court case. Jane and me drifted even further apart. In March 2007 I won my court case and the claimant's allegations were dismissed but it was something of a hollow victory as by this time myself and Jane had parted company. I moved from our rented flat and left her pretty much everything that I had bought for the place. By this time though I thought I was strong enough to move on.
It was difficult to adjust moving back into my Mother's house again and I pined for company at first. Nights alone took some getting used to but this was how it had to be. It was hard taking on board that the last six years with Jane suddenly meant nothing. For a while I sat around wondering where I would go from this point on.
Then one fateful Friday night I set out with my car to a West London club to drown my sorrows. On the way home I had an accident and wrote off my car which ultimately meant that I would lose my job as well....which was the case. My license was disqualified for three years.
At a loss and with my current prospects at a standstill I decided to use some of the money I had put by on travel and started to go places culminating in a tour of India in January 2008 which incorporated some voluntary work for the IVCS. I returned at Easter. This was a fascinating experience and it gave me the inspiration to visit other places that I may have given little thought to under different circumstances.
As luck would have it......when I come back to the UK I also got my old job back but in a non driving capacity and things have started to look up again. Despite the pitfalls and the plain bad luck I have had to endure I am optimistic about the future and have further travel plans for 2009. I handle stress better now and avoid situations that are likely to put me under pressure. Money means little now and material things even less. I recently found out about a long lost sister and there is far more to be happy about than there is to be down about.
More importantly. I am now in full remission from Cancer. There is light at the end of the tunnel. Sadly, my friend Tony Treliving lost his fight with Cancer in May 2008. The light didn’t shine for Tony. God bless him.
Nothing however, is quite what it seems with Cancer and the side effects or the disease itself can come back to haunt you in more ways then one............. .....read on.
March 2009 Arriving in Thailand from India in March 2009 I started to notice some pain in my lower gum on the right side of my face. Over the next few weeks the pain worsened and a sizeable lump started to appear. By this time I had arrived in Nongbua Lamphu in Northern Thailand and decided to visit the local hospital to get some treatment. A doctor there gave me an injection of anti-biotics and a back-up course of tablets to combat the infection. All was well and the swelling and the pain subsided. On my return to the UK just after Easter the pain and the swelling had returned and I went to see my dentist for his opinion on this matter. His advice was for me to see the oral surgeon (Dr Amin) at Wexham Park hospital where I had previously had multiple tooth extraction due to the effects of Radiotherapy in 2003. The surgeon at Wexham Park hospital arranged for me to have an MRI and a CT scan at Heatherwood hospital in Ascot which revealed that I now had a condition called “Osteoradionecrosis” which meant that my jawbone was starting to disintegrate due to the damage caused by radiotherapy. Then came the bad news. The surgeon told me that I would need an operation to correct this condition or it would continue to get worse. This would involve major surgery. The surgeon then went on to explain to me that he would need to cut the infected bone from the right side of my jaw and replace this with a section of bone taken from my left leg. The operation would take ten hours followed by time in an HDU unit (High Dependency Unit) and 10 to 14 days in hospital for recuperation. I have had a pre-op assessment and I am due for surgery on 9th September 2009 at Northwick Park hospital in Harrow, West London. So although I fought with Cancer and came through with my life intact, the effects of the treatment and side effects will stay with me for life. I have been told that I could be left with numbness in my lower lip and may have to put up with a droop on the right side of my mouth so I guess i’ll have to try and smile a lot to disguise this. I currently have restricted jaw movement from my previous treatment and it may get worse after this operation. I’m praying that the operation will be successful and I will be able to carry on as normal without too many complications. Wish me luck.
Stephen Lee Ostrowski
The track you have been listening to is called "Broken" from the CD "End Of The Line" available from the shop on this site.