The Cancer Survivors Club

by Chris Geiger

  ‌My Story by Julie King

  If in Doubt, Persevere

  Membership: # 12

  It was during January when I first thought something was wrong. I kept getting a feeling of immense pressure in my head, which increased each time I bent down. I’d never experienced this before so was naturally concerned. This, together with an irritating cough, finally prompted me to visit the doctor. Strangely, these symptoms always felt a lot worse at night.

  My worries were soon put to rest when I was prescribed a spray for post-nasal drip. The doctor explained my symptoms were caused by my sinusitis, something I suffered with; I got this nearly every winter when I caught a cold.

  Later that week, I started having problems breathing. I first noticed it while taking a physical education lesson at the primary school where I worked. I went to the doctor again, and this time he gave me a course of antibiotics as he thought I might possibly have a lung infection.

  Over the next couple of weeks, my breathing continued to get worse. Even just a gentle stroll to the local shops caused a feeling of breathlessness. The feeling of pressure in my head also continued, which obviously worried me.

  Yet again, I went back to my doctor. This time, I was referred to an Ear, Nose and Throat (ENT) specialist, as my doctor still thought my problems were linked to my sinus issues. I’d also noticed my neck had become swollen. I did actually wonder if I was imagining it as it appeared to come and go.

  However, when I met up with a friend whom I hadn’t seen for three weeks, she commented how puffy my cheeks looked.

  I paid yet another visit to the doctor, as I’d now noticed the problem was only on my right side. The doctor thought I might have a problem with my thyroid this time, so suggested I have an ultrasound of my neck. Things soon came to a head at the end of February. I was having a wash and noticed a purple, spider-like pattern of veins under my breasts. At first I thought it was merely a side effect from where my bra had been digging in, due to my constant coughing recently.

  I decided it was best to go and see the doctor again; this time, she suggested I have some blood tests. I was told there was no urgency, so booked the next available appointment, which was the following week.

  Desperate for some answers when I got home that afternoon, I started surfing the internet. Instinctively, I knew when I found a condition called Superior Vena Cava Syndrome (SVCS), which stated the main symptom as ‘a feeling of pressure in head and neck when bending forward’, that I’d found what was wrong with me. When I continued to read, I recognized I had practically all the other symptoms, too. I was now becoming very worried, almost terrified when I saw that SVCS is caused by a form of cancer in most cases. I called my doctor straight away, and she said she’d see me immediately. The doctor didn’t think my diagnosis was correct, because I was not having the classic symptom of severe morning headaches; however, to be on the safe side, she sent me to have a chest x-ray.

  I was now a lot happier, having seen the doctor, probably because I felt I’d made a wrong diagnosis and was hopefully closer to finding out what was wrong with me.

  The next day, I received a call asking if I could go and have a CT scan first thing the following day. This raised my suspicions that perhaps I did have something wrong with me after all. I managed to take my mind off the scan by keeping myself busy – the house had never looked so clean. Everyone kept saying I shouldn’t believe everything I read on the internet.

  First thing the next morning, I went off to the hospital for the scan. That evening, the doctor phoned me at home and told me it was bad news. She said they’d found a tumour pressing on my Superior Vena Cava Vein, which is the main vein that carries blood to the upper body and lungs. So, unfortunately, my own self-diagnosis had been right.

  The next day, the doctor had arranged for me to see an oncologist at my local hospital. Thankfully, I’d got the first appointment of the day. It was at this appointment they confirmed I had SVCS. I was told that they were unsure if I had lung cancer or lymphoma. The oncologist arranged for me to have various other tests including a bronchoscopy.

  At the beginning of March, I went back to the hospital for a CT-guided lung biopsy. I had to stay in hospital for a few hours afterwards to recover. The following week, I was due to hear the results, and needless to say the night before wasn’t easy – more cleaning.

  When I saw the doctor, she started asking me yet more questions and wanted to examine me. The suspense was killing me. ‘What have I got?’ I asked.

  My doctor looked up and replied, ‘Quite honestly, I don’t know.’

  The tests were inconclusive so the biopsy sample needed to be retested. The doctor explained that cells from both lymphoma and lung cancer look very similar when examined under a microscope. She said that full recovery from either was possible, but the chances would be much greater if I had a type of lymphoma. She went on to talk about Non-Hodgkin (NHL) and Hodgkin Lymphomas in more detail, which made me hopeful that I had one of these and not lung cancer. The doctor said she’d phone me at home the moment she got the results. However, my husband rightly felt it would be much more beneficial if we were given the results face-to-face, and I agreed. The wait at home was difficult but I was becoming an expert at keeping busy. We found ourselves trying out a new juicer, which had been recommended by a work colleague of my husband. He coincidently at the time was fighting his own battle with lung cancer, which he has now won.

  At 4:00 P.M., the phone rang; my heart was thumping as I answered it. The doctor said it was good news and there was no need to go back to the hospital that day. She told me that it was a type of NHL and explained that, as standard procedure, I’d need to have my bone marrow tested and some more blood tests. It’s a strange thing to say that NHL was ‘good news’.

  The bone marrow test wasn’t brilliant; it was very painful but I did my best to think about other things. I also had another CT scan. The next day, I met a consultant at the Christie Hospital and explained my story and symptoms to him. It was then I was diagnosed with primary Mediastinal large B-cell Lymphoma, which affects more women than men at a ratio of 9:1. Mediastinal Lymphoma is very difficult to diagnose unless a chest x-ray is taken; this is because there are normally no lumps that can be felt, and even listening through a stethoscope gives no definite clues.

  I found this time unbearable; I just wanted to get on with my treatment and get rid of the cancer. I really deteriorated physically. I could hardly walk upstairs and any form of movement was pretty difficult. My cough by now had become really painful and I needed to rest my head on my pillow to help relieve the pressure. In addition to this, my upper body had also become very swollen and I found sleeping in a chair helped.

  My treatment started on 31 March, twelve days after first being diagnosed. I got through it the best I could, reminding myself of my good prognosis. It was a long process, however, and I had all the normal side effects after each dose of chemotherapy. This made me feel like I was coming down with flu or had drunk too much alcohol; I wish. I also felt nauseous, but the anti-sickness medication really helped a lot. I had six cycles of a chemotherapy regime called R-CHOP, each dose three weeks apart. I made it my target to help myself as much as I possibly could. I rested when necessary, especially during the first week. I changed my diet to include more fruit and vegetables. Juicing had become a way of life, eliminating most refined sugars where possible.

  I really enjoyed having visitors when in hospital but I made sure I only saw them when I was feeling OK. I managed to avoid picking up any infections but I did get shingles twice. This is common during treatment but both times I acted quickly and was given the anti-viral drug Aciclovir, which was really effective.

  At the end of August, I had a PET scan, which showed that my tumour had reduced from about 9 cm to 3 cm in size. I then had some fifteen sessions of radiotherapy to eradicate this. By the middle of September, I had finally completed the treatment.

  I was lucky enough to have had tremendous emotional and pr
actical support from both my family and friends. My husband was absolutely wonderful; I couldn’t have managed without him. I also had reflexology treatments and post-treatment relaxation classes at a local hospice. Thankfully, the NHS reacted quickly once my diagnosis had been made. I was very glad that I followed my instincts to keep returning to my doctor and investigated my symptoms myself. I now know that Mediastinal Lymphoma is difficult to diagnose and I underestimated just how long it would take to regain my strength.

  I decided to stop work during my treatment as I worked with children and didn’t have the energy needed, especially as the treatment had sent me into an early menopause; but that’s another story.

  Now I’m doing some voluntary work, which I get a lot of satisfaction from. Although it sounds a cliché, I feel like a different person and I’m determined to make the most of the rest of my life. I feel so lucky to have found something I enjoy and appreciate every day.

  I recently received the results of my latest PET scan, almost a year to the day since my first session of chemotherapy.

  My consultant is very pleased with the results, so I just need regular check-ups now. I’ll be continually monitored for the next ten years.

  Since my experience with cancer, I have travelled quite a bit, done a lot of voluntary work and have pursued my desire to write poetry – all things I’d have never done before.

  ‌My Story by Mark Davies

  How to Solve a Problem like my Rear

  Membership: # 13

  This is a story that may well sound disturbingly familiar in parts. For me, the scariest thing about being diagnosed with bowel cancer was not knowing I actually had anything wrong. My story starts on a typical day after work, with a few cold beers and a Chinese takeaway.

  At the age of thirty-one, the world was my oyster, or so I thought. I had a lovely girlfriend called Rachel. I owned a small sales company and lived in a cracking apartment near Islington in North London; life was good. I was a bit of a workaholic, which led to a less than perfect lifestyle. Twelve-hour days were normal and most nights involved a couple of pints and a takeaway. Admittedly not ideal, but I was only thirty-one and allergic to cooking.

  Around midnight one Saturday after an evening of drinks with colleagues, I went home clutching my favourite Chinese dish, Singapore noodles. These noodles tend to be rather spicy and had me rushing to the bathroom afterwards. No surprise there; I’m sure most of us have been in that situation before, so I thought nothing of it.

  Monday morning arrived and I decided I’d throw a sickie. I’d had little sleep and my mysterious tummy rumblings had continued. I thought a quick visit to my doctor would be worthwhile, to see if perhaps I had an ulcer or something that needed treating. I did my best to describe to the doctor how I felt and said I now know what it’s like to have period pains; she didn’t laugh. Yes, I confirmed, I had felt quite tired lately, but work was really busy.

  Yes, I confirmed again, there was a little blood on the toilet paper, but nothing unusual as I’d used it a lot recently. I felt like a fraudster as I didn’t actually feel that ill by the time I got to see her. I left feeling like I shouldn’t have wasted her time.

  A couple of weeks later, I received a letter inviting me to see a consultant in hospital. This was not a great surprise, as my doctor had explained she’d refer me.

  I attended the appointment as, at worst, it was another half day off work. The consultant was very nice and I relayed my tale of woe to her before she took her revenge, by digitally examining me. If a doctor says they are going to perform a digital examination, be warned it’s not digital as in hi-tech, it’s their finger digit.

  With that over, I went back to work and thought nothing more of it. I was told it would be a couple of weeks before I got the results. Therefore, I completely forgot about dodgy takeaways, doctors and digital examinations. Although I’d forgotten, they hadn’t. Another appointment letter soon arrived, requesting I have both a colonoscopy and CT scan. I attended unaware of the exact nature of a colonoscopy. This was an investigative procedure where a camera was inserted into my rectum and pushed into my colon. This without doubt is one of the weirdest feelings I’ve ever had.

  The CT scan was a breeze by comparison. I simply had to drink some orange liquid that would show up on the scan. Then I was asked to lie down on a sliding table, which moved through a large, metallic-looking doughnut; simple. I felt strangely violated by all these tests. I was assuming by now that I had the mother of all ulcers or Irritable Bowel Syndrome (IBS).

  On the evening before the results, I received a call from my mum asking if I wanted her to stay with me. Now I don’t know about your parents, but, when my mum asks for something, it generally means it is going to happen – whether I want it to or not. I mentioned the fact that I was the managing director of my own company; I mentioned I was thirty-one; I also mentioned the fact that I’d been going to the doctors ‘all by myself’ for a very long time. Mum mentioned the fact that she was still my mum and she would see me at Euston train station later that day. It’s nice to be asked though!

  So, with Mum for company, we made our way from the train station to the hospital. I registered at reception and we sat down and waited to be called. I wasn’t worried – I was still convinced I was pretty much OK, so was chatting with Mum about her developments at work.

  Soon, I heard my name called; we stopped talking and looked up. I glanced at Mum and she sat down again saying, ‘I’ll wait here then.’ I smiled and said I thought I could cope.

  Once I’d knocked on the door, I walked in to see there were two other people with the doctor. One evidently was a junior doctor and the other I was told was the hospital registrar.

  ‘Please take a seat, Mr Davies,’ the registrar said.

  Once the introductions were over, I sat down and couldn’t help but ask, ‘So, what’s up, Doc?’ while smiling insanely.

  ‘You have adenocarcinoma of the colorectal region,’ he replied.

  ‘What’s that?’ I asked, my smile suddenly replaced with concern.

  ‘You have cancer, Mr Davies.’

  Now I appreciate at this point that we would all react in different ways, none better or worse, it’s just who we are. I was a manager of a sales company and my mind went into problem-solving mode so I replied, ‘Oh, OK, so what are we going to do about it?’

  I just wanted to understand how to go from having to not having. Dying didn’t even enter my mind. I didn’t panic, cry, freak or hear ‘Greensleeves’ in the background; I was completely calm. I could tell my reaction shocked them a bit.

  One thing I couldn’t do though was tell Mum; I mean, what do you say? ‘Hey, the good news is it’s not an ulcer…’

  The registrar said she’d tell her. Mum just replied, ‘I thought so.’ Could have told me, I thought.

  They arranged a second appointment within two days, this time with the surgeon who would discuss my treatment options. The hardest thing was not being told I had cancer, but telling those who cared about me. Mum already knew, but I had to tell Rachel, Dad and other friends. I had mentioned to the guys at work that I’d probably be a bit late the next day. I arrived at the office once the morning meeting was over, around midday. It’s a strange thing being told that you have cancer. Although you are officially ill, you don’t have anything to show for it.

  I was no more physically ill than the day before. In order to convince people that you are ill, you really need some visual evidence – coughing, sweating or your arm in a sling. However, because I had none of these things, interacting with people was a little disconcerting. They don’t have anything to focus their attention on, no cast to write on or tissues to offer. It’s a bit of a non-event and no one wants to ask you how you feel as it’s a daft question in their minds; even if I was OK, which I was. So I sat down with a couple of the people closest to me and told them what I knew, which to be honest wasn’t that much. I had cancer, it was not good and I had no idea what was going to happen until after the
next appointment. One of my main concerns was what I was going to do workwise. Obviously, if I did die, it wouldn’t be a major problem; however, as I was convinced that I wasn’t going to ‘shuffle off this mortal coil’ just yet, I needed to start thinking about my short-term future. What was I going to do with the company? How was I going to survive financially, self-employed with no sick pay?

  First things first, though – it was time to see the surgeon for my treatment options.

  Rachel came to this appointment with me, as she wanted to get the real information not the second-hand version from me; again, I had no choice in the matter. Entering the room, we shook hands with the registrar and I was introduced to the consultant surgeon. He was an extremely friendly guy and made us both feel relaxed almost immediately. I explained that I was aware of the seriousness of the situation, but wanted to get on to the ‘what’s the solution and what can we do about it’ part. I wanted to feel some level of control while in a fairly uncontrollable, very stressful position. The surgeon understood and we got down to business.

  ‘The preferred method of dealing with cancer of the colon and rectum is surgery,’ he explained. ‘Fifty years ago, a surgical technique was developed called an abdomino-perineal excision of the rectum.’

  I raised an eyebrow at him; this was no time for big words.

  I looked over at Rachel and gave her a reassuring thumbs up – fifty years ago, no problem, I thought.

  He continued, ‘It’s a fairly major operation, which is designed to completely remove the threat of cancer from the area.’

  ‘Sounds good,’ I agreed. ‘So what does the procedure involve?’ I was feeling pretty optimistic – completely remove the threat of cancer – cool.