“Do we want more kids?”

March 5, 2016

Easter 1986

Eventually all the tests were complete and the results were in. I was told I needed radiotherapy which would require six weeks of treatment at Cookridge Hospital. Considering where I lived, it was suggested that I stay in hospital Monday to Friday each week and go home at the weekend. That way they said, I wouldn’t have to endure a seventy-mile round trip in ‘Ye Olde’ ambulance.

Easter was looming close and they wanted to start my treatment before the break. The radiotherapy planning was a slow process, involving many more x-rays and scans. I also had eight little tattoos marked on my body so they could accurately line me up on the linear accelerator each time I had my treatment.

I didn’t ask many questions in those days, I assumed they would tell me everything I needed to know. One radiotherapy technician even told me I would be having 50 Grays of radiation or in other words 50,000 sMv’s. Yeah I know,………….. I had to ask him:

Me: Is that a lot of radiation?

Radiotherapist: It’s the equivalent of about 500,000 normal chest X-rays.

Me: A lot then?!!!

Unfortunately I was soon to learn it’s a risky business taking a passive role. Finally they announced my treatment could start. Summoned from the ward, I made my way through the many corridors to the radiotherapy suite. I still remember the weird smell inside the linear accelerator room as I undressed and put on a theatre gown. Once I was positioned on the radiation machine everyone vacated the room.  I felt very alone as I wondered what this invisible treatment would be like and whether or not I would feel any pain. All of a sudden a doctor burst into the room.

Doctor: “You do have two children, right?”

Me: “Er, yes I do” Wondering if he was about to suggest they join me!

Doctor: “Do you want any more?”

Me: “Er, why?” Could he not see I was too busy for that sort of thing right now.

It was a really weird situation. I was lying on my back trying to psyche myself up for the treatment and some guy wanted to know about my five-year plan! He came close enough for me to finally see him.

Doctor: “Unfortunately the inverted-Y radiotherapy you’ve been prescribed will almost definitely leave you sterile and unable to have any more children”

After what seemed an uncomfortably long pause.

Me: “Can I discuss it with my wife?”

At that, he aborted my treatment and suggested I call my wife that day.

It could have been a really difficult call to make, however considering we’d just had our second child ten weeks earlier we both agreed having more children wasn’t high enough on our agenda right now to risk compromising my treatment. I would have my first treatment that evening.

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice….sorry!

 


“Even more tests!”

February 29, 2016

Nearly Easter – 1986

I spent the week undergoing many tests and investigations as part of the staging process. It was a pretty traumatic time, I remember during that first week I had no fewer than twenty-four blood samples taken. I didn’t have a needle phobia but this level of intensity was causing me some serious anxiety.

Despite the needle trauma, I thought nothing would compare with the bone marrow biopsy until I had something called a lymphangiogram.

 

IMG_0639They injected die in between all my toes which made my eyes water a lot. This was apparently to expose  the lymph vessels on the top of feet so they could cut them insert cannulas which were attached to two large syringes full of blue dye!! The die was then injected into both my feet simultaneously very very slowly. I remember the weirdest sensation and pain all over my body as the dye forced it’s way into a place I am sure wasn’t designed to accommodate it. After about thirty minutes I was then taken to yet another scanning machine, which took numerous images of the lymphatic system throughout my body and seemed to take forever.

Much to everyone’s bemusement shortly after the lymphangiogram, blue dye started running down my leg. The dye they’d put in was just coming back out again!! My surgery wound was open again and required dressing every day. It did amuse me every time a new nurse changed it as I watched their reaction when they saw what looked like blue blood in my dressing and I said “Perhaps I was really royalty and you should’ve given me that general anaesthetic after all?” Not that anyone else found it amusing.

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice….sorry!

“Just a few tests, that’s all”

August 30, 2015

March 1986

Cancer perceptionI spent the first day at Cookridge Hospital going back and forth to the pathology department, suffering one blood test after another. There were no mobile phones or lap-tops in those days (well, not in my world) so keeping the family up to date wasn’t easy. There was a ‘mobile’ payphone, which could be brought to your bed area but in the old style ‘Nightingale Ward’ there was little or no privacy.

In between the blood tests and visits from numerous people in white coats, I began getting to know the other ‘poor souls’ optimistically hoping that I would be spending a lot of time with them. It turned out five of us were from the same town and we were all twenty-five years old or younger. Two of us had non-Hodgkins lymphoma, two had testicular cancer and one had Hodgkins disease. How likely was that? I often wonder if the large ICI plant in our town which made weed-killer had anything to do with that……..I’m just saying!!. Almost everyone was totally bald and those who’d been on treatment a while had a yellowy ‘ill’ look to their complexion and everyone seemed to have tubes going into them or were they coming out of them? It was difficult to tell. Nevertheless they were becoming my friends and it was good to make some friends.

ChemotherapyIt was like moving into a new neighbourhood, everyone knew each other except me and they were almost competing with one another to offer me advice. Some of their information was useful, but some totally useless, such as their assurance that I had nothing to worry about with the bone-marrow biopsy I had scheduled for the next day. It later transpired my advisors were lucky enough to have had a general anaesthetic when they had theirs done, a luxury I was to be denied as a result of the operating theatre being refurbished that week………Lucky me!

Around six O’clock my Dad arrived on the ward, looking almost as ill as my new friends. It was like the kryptonite effect on Superman, he really didn’t do illness and hospitals but it was good to see him. Unfortunately I had very little to tell him other than that the investigations had started and that I had made lots of new friends he probably doesn’t want to meet yet. I felt so sorry for my Dad that evening he was so uncomfortable with being there but at least he got to see me and I hadn’t lost any hair, or turned yellow. My Mum on the other hand was stuck at home 30 miles away and was probably going mad with worry and as for my wife, well I can only imagine what she was going through.

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice….sorry!

“Let’s talk about it” – (Part 2)

August 10, 2015

It was just two days later when I had to go to hospital for a week. The plan being that I was to undergo numerous investigations and tests to further determine what course of treatment I should have and then hopefully start it as soon as possible.

I’m not sure what upset people the most, that I had cancer or that I was going to Cookridge. Many cancer specialist hospitals in those days had an unfortunate reputation similar to that of a haunted house, lots of people go there, but very few come out alive.

My Dad took me to the hospital, he worked in Ilkley so it was pretty much on his way. He dropped me off very early at 7.30am because he had to be at work for 9.00am (I guess that’s where I get my conscientiousness from), I didn’t have to be there until 10.00am!.

Cookridge HospitalAfter sitting for a couple of hours in the reception area, I was taken to a separate building, which could only be described as an old air raid shelter. There I was introduced to other young men who were being treated for cancer. Some of these guys looked really ill. I began to think perhaps I’d been in denial up until now, I don’t think I really believed anyone my age got cancer, it’s for old people like those in the waiting room. It was then I began to realize why my Dad insisted on dropping me off so quickly. He hated hospitals at the best of times, how the hell was he going to cope with this when he called in on his way home from work!

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice


“Let’s talk about it” (Part 1)

August 9, 2015

March 1986

I don’t think either of us spoke during the journey home after our meeting with the Oncologist from Leeds. I remember thinking I must tell work, but tell them what? They might sack me. Times were hard for the engineering industry, I’d already narrowly escaped two rounds of redundancy and who knows when the next might be.

“Bad news travels fast!”

I decided to strike while the iron was hot and went to work the next day to tell my bosses. I figured if I went while I still looked okay then they might think it’s not that bad. So I told them, but I’m not sure what they thought, in fact I wasn’t sure what anyone thought about my illness because they never told me. Mind you, what do you say to a twenty-five year old who eight weeks ago was showing off his newly born son and was now telling you he had cancer.

After that, I was on a roll, so I decided to tell my Mum and Dad next. They had moved down from Scotland recently, having aborted their attempt at early retirement. I think my Mum was behind that decision, she probably wanted to be nearer her grandchildren. Whilst I wasn’t their only child, my older brother’s lifestyle as a freelance artist and song writer afforded him little incentive to consider a long-standing relationship, let alone start a family.

Telling my parents was the hardest thing to do. I remember thinking I could be a doctor as I made up my mind I would explain using anything other than the ‘C’ word.

“I have lymphoma”. That was easy.

‘What’s that then?”

After a painful pause, “It’s a type of cancer”

Doh, there I said it.

“Where do you have it?”

“In my lymph nodes”

“What are those?”

And so it continued, the blind leading the blind, what I really wanted to tell them was that I had cancer and I had no idea what happens next because I’m stupid……………………..

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice


“There’s good news and bad news” (Part 2)

August 7, 2015

“The baby will be starting school soon”

…………..Continued.

We arrived at the specialist clinic in good time, along with about three hundred other people with the same 2.15pm appointment, but we were different, we were younger by about fifty years for a kick off and we were carrying an eight week old baby. I remember thinking neither would be the case if this queue doesn’t speed up. I was ageing fast and the baby would soon be starting school!

Eventually our time came, I went into the consultation room alone, thinking I could ask dumb questions if I was alone. The Specialist popped his head in and asked if anyone was with me. He wanted my partner to be present and said he would be back in a few minutes. The nurse called her in from the waiting room and she took up position standing at the bottom of the examination table with the baby in her arms.

We exchanged puzzled looks and then the doctor and nurse returned. I remember vividly his reaction when he saw my partner and new baby son in the room. He asked if we knew who he was and if anyone had told me why I was here. We both said no, much to his dismay, as he suggested my partner take a seat. Perhaps it was a ‘fight or flight’ reaction that suddenly hit her but she refused his offer, assuring him she and the baby fine, after all we’d been sitting in his overcrowded waiting room for an eternity!  “I’d prefer to stand” she said.

“I was clearly out of my depth”

I can’t remember the exact words he used other than cancer was in there somewhere as he explained what was wrong with me. I do remember he said something about going to a hospital in Leeds for treatment. Unfortunately I do remember exactly what I said when he asked if we’d any questions, “how long will I be off work?” I don’t think he expected that.  Either I hadn’t heard a word he’d said or I was the most conscientious person he’d ever met. I knew it was neither, it wasn’t the first time and certainly wouldn’t be the last time I’d feel out of my depth in the world of Oncology.

 


“There’s good news and bad news” (Part 1)

August 7, 2015

“By now I trust that you have had the opportunity to learn more about me and Oncology Limited on the web-site. www.oncologyltd.co.uk. In an attempt to further expand on my claims of an alternative angle to oncology, I intend to regularly post thoughts and opinions and also share my experiences of a disease that has occupied more than half of my life to date and which will perhaps offer a ‘unique and diverse’ perspective of cancer.”

“Good news and bad news!”

I suppose I was never really a great engineer but I did okay, I had been working as an engineer for nine years since leaving school and I was qualified!. However, I do wonder how long I would have kept doing it, had the life-changing event never happened.

“I was never a great engineer, but I did okay……..”

It was January 1986 when our son and second child arrived, he was a beautiful bundle of fun who was a welcome companion for his three-year old sister. The pregnancy had thankfully been uneventful, which had afforded me the opportunity to do lots of overtime and prepare financially for our new addition. I was twenty-five when our second child arrived and had enjoyed good health all my life, so despite finding a couple of lumps and feeling pretty dreadful most of the past couple of months, I blamed it on doing too much overtime and had decided to put off going to the doctor until after the birth, thinking a few days off sick would be a break to enjoy the baby – no paternity leave in those days.

Why is it no GP (general practitioner) has ever taken me seriously on the very few occasions I’ve troubled them with doing their job? It took another three weeks of antibiotics and an embarrassing re-visit to my doctor before he eventually and reluctantly referred me to a surgeon to look at my lumps.

The surgery went well, however no matter how often I asked, no-one could tells us what the lumps might be, they just kept saying they had to be removed. After a brief stay in hospital I was sent home for a couple of week’s well-earned rest, I was exhausted. Unfortunately things went from bad to worse, a spell where I had to crawl upstairs because my legs had stopped working, followed by large amounts of clear fluid literally pouring out of my wound spurred on the district nurse (who was by that time, visiting twice a day, I think to see if I’d run out of fluid) to get me back in to see the surgeon.

The surgeon wasn’t a nice man and he seemed to take a particular dislike to the fact that I’d somehow ruined his handy work. Two guys who could only be described as the Chuckle Brothers visited me and began prodding and feeling under my arms and around my neck. They gave no suggestion as to what might be wrong with me but they did ask me if I was homosexual……. how embarrassing was that back in the 1980’s? I was an engineer for goodness sake………and I had two kids! It wasn’t to be the only time I’d thank God for having kids at such a young age.

Eventually I was sent home and told to visit a clinic in two days time to see a specialist who would hopefully be able to get to the bottom of what was going on.

I think to describe myself as naïve is a huge understatement. Looking back, it was amazing how an engineer could know so little about his own body and be so out of his depth trying to describe his symptoms and concerns.

The two days passed and incredibly the leaking from the surgery wound had stopped, I do actually think I’d run out lymph fluid and I’ll explain why later. The district nurse (who I have to say was brilliant and really the first person who’d ever shown any concern or sincerity about our predicament) seemed sad that I had been referred to the specialist but assured us he would be able to tell me what was going on……………To be continued.

The content in my blog is provided for educational and informational purposes only, and is not intended to be a substitute for a health care professionals advice. Please consult your own appropriate health care provider about the applicability of any of my opinions with respect to your own symptoms or medical conditions. The information in my blog does not constitute legal or technical advice.


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