The Cancer Survivors Club (10 page)

I had the last treatment of my second cycle on 21 August. I soon found the chemotherapy days were rolling round quickly and I was now over halfway. My blood tests came back good because of the booster injections, so I had yet more chemotherapy. When I got home, I felt knocked out again; sleep had quickly become my new best friend. Again I got off lightly; I wasn't sick at all and I had no other nasty side effects.

On the day of my first injections, I went to the hospital so they could teach me how to do it. I have to say it was very easy once I got over the initial bit of sticking a needle into my tummy. So everything was going well with my treatment and I had been feeling fine. In my mind, there was no reason why my third cycle should be any different. I had the chemotherapy and went home, but to my complete surprise I felt rather poorly on the Monday. I couldn't decide if I wanted to sleep or watch television. I wanted to be sick, very sick. I was soon introduced to my second best friend: the toilet. I spent hours with my head hung over the toilet
–
anything and everything triggered it. From drinking water, eating, taking pills, mouthwash to cleaning my teeth, you name it, it made me feel sick. My mouth became quite sore again and I kept going hot and cold, and when I say cold, I mean freezing. I didn't know what to do with myself, and nor did anyone else; I was in such a bad mood,
too.

I was hoping 18 September would be the last time I'd do the dreaded chemotherapy trip to hospital. I hadn't felt great for the previous two weeks since my last treatment and to make things worse I was developing a cold. I visited my consultant, who gave me the bad news that I couldn't have any more chemotherapy, because of my
cold.

He told me to come back on Monday and I would hopefully be able to start again. Monday arrived and my cold was even worse, so I couldn't have the chemotherapy yet again. I'd have to wait until Friday now. By Friday, the cold had thankfully disappeared and I was feeling much better. I was ready to get the last lot over and done with. I was also a little apprehensive as I'd be having a scan to see if the cancer had gone. My chemotherapy finally went ahead and I went home pleased it was all over, yet concerned how I was going to react this time. Not very well was the answer. I thought I was sick a lot the first time, but that was nothing compared to how I was this time. I just wanted everything to end and I never wanted to have to do this again. I dreaded the thought of the scans coming back saying there were still signs of cancer lurking.

I arrived at the hospital on 9 October, feeling really apprehensive and more emotional than I'd ever felt. I had my blood tests as normal and then began the wait. A nurse called Joanne came to see me and explained they were just waiting for the pictures from the PET scan to be reviewed. She suggested I come back at noon when hopefully they'd have the results. Those three hours were the longest of my entire life. I went back to the hospital at exactly midday, hoping and praying for good news. Joanne came in and shouted across the room to me, ‘No more chemotherapy.' I burst out crying. I was so happy, I'd beaten cancer. I went upstairs to have my PICC line removed and was told that they would be in touch about having the radiotherapy. I was now finally
free.

I went straight home, changed and hit the shops for a new outfit. I had to go out to celebrate. I sent a text to all my friends and arranged a quiet drink down the pub. I was collected at 7:30
P.M.
and when I walked into the pub all hell broke loose. My best friend Emma had arranged a surprise party for me. All my friends were there and I had the best time ever. I had presents, cards, a disco and lots of drinks. I didn't want it to end and it's something I will remember for the rest of my
life.

I still had to have radiotherapy but I was told it would be a breeze compared to the chemotherapy, so I wasn't too worried about it. I had to have a mask made, which went over my head. It was basically to stop me moving on the table and to keep my chin out of the way. I didn't like the mask very much and was bolted to the table with it on. I had to have three weeks of radiotherapy, every day for five days a week. The first week was fine
–
in fact, it was a complete pain having to go to the hospital every day for less than five minutes' treatment. In week two, I started to feel a bit poorly; my mouth and throat were very sore and I lost my voice. My throat was so bad by the end of week two that I couldn't eat. I even struggled to drink water. I then began to dread every day as it made it worse. I actually ended up with two ear infections, a throat infection and one in my mouth. Due to not being able to eat or drink comfortably, I lost two stone in weight. I finally finished my last week of radiotherapy and was over the moon and prayed I'd never have to go there again. I had an appointment with the doctor and he assured me the infections were under control and my body would return to normal within a few weeks.

I've now been in remission for nearly four years. I have my next lot of scans booked for December just to make sure the cancer hasn't returned. Looking back, it was a very long, tough year, but in some ways I wouldn't change it. I have learnt a lot about what's important in life and what's not so important.

The doctors told me I should take it easy for a while; however, I soon went back to work full-time. I do get tired but it is nothing an early night can't fix. I appreciate more than ever that I've just one life, and I should live it to the
full.

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 practical 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.