The Cancer Survivors Club (13 page)

I was watching television with my husband one evening, when I idly rubbed the left side of my face. I felt a small lump about the size of a grape. I thought it was odd but assumed I had maybe bumped into something unknowingly. The lump was at the entrance to my ear. After a few days, it still hadn't gone, so I made an appointment to see my doctor. He was brilliant and referred me to an Ear, Nose and Throat (ENT) consultant straight away. An appointment came through for the end of October.

One morning at the beginning of October, I again visited my doctor. This time I had a rather uncomfortable pain in my groin area, which ran down my leg. However, I wasn't able to pinpoint exactly where the pain was coming from. The doctor thought it was just some kind of groin strain and it would ease over time by itself. But within just a few hours I was in absolute agony. The pain had now become localized on my right side. I went back to my doctor who wasted no time in booking me into the Gynaecology Department at the local hospital as an emergency case. He suspected it might be an ovarian cyst. I underwent several examinations including a scan and everything was still suggesting his first diagnosis was correct. So they decided to operate to remove the cyst. I was told I would have a procedure called a laparoscopy, which would mean being under anaesthetic for about thirty minutes, depending on what they found.

The advantage of a laparoscopy is that it is a relatively non-invasive procedure. Typically, a small incision is made just below the navel and a cannula or trocar is inserted into the incision to accommodate the insertion of the laparoscope. Other incisions may be made in the abdomen to allow the insertion of additional laparoscopic instruments. However, if they found something, they'd have to open me right up. If this happened, then obviously the operation would take much longer.

When I came round from the anaesthetic, the first thing I did was check the time. It was nearly three hours since I'd been taken down to theatre. I instantly started panicking, wondering what they'd done and if I'd had a hysterectomy.

When the consultant visited me, she explained that when they did the laparoscopy everything was bulging towards the camera. Yet curiously, when they opened me up to remove what they were sure was a large cyst, there was nothing there. I'd been through all this for nothing and felt so frustrated and angry. I was in hospital for a total of ten days as I managed to pick up an infection, too
–
great!

It was now the end of October and I had my next appointment with the ENT consultant. He gave me a very thorough examination, sticking things up my nose, down my throat and in my ears. He also did a needle aspiration on the lump and said he'd decide what to do after the results came back from the laboratories. I received a letter that said the sample had shown ‘rather odd cells' and that I'd been booked into hospital again in February, this time to have the lump removed from the side of my
face.

Two weeks before the operation was due, the lump disappeared. When I went to see the consultant, he said, ‘Oh, well, looks like you've saved yourself an operation.'

He decided to just keep an eye on me and a follow-up appointment was made, for six months'
time.

My life continued as normal until about two weeks before the follow-up appointment, when yet again I felt a lump. This time, it was just to the left of my neck. With lumps also coming and going in my groin area and neck, I started to do a bit of reading myself; everything I found on the internet pointed towards my having a lymphoma-type cancer. Lymphoma meant cancer of the lymphatic system of which there are two main types. They are called Hodgkin Lymphoma or Non-Hodgkin Lymphoma (NHL).

I went to my appointment and the hospital registrar saw me. He felt the lump in my neck and put it down to swollen glands and told me to come back in three months' time. The next appointment soon came round and the lump was still there. Luckily, I saw the same registrar and again he said it was just a swollen gland. Well, this time I wasn't so sure, so asked him about lymphoma cancer and if he'd ruled it out. He chuckled a bit and said, ‘You're no more likely to have lymphoma than myself or the nurse here. But clearly you're worried so would you like me to see you again in January?'

‘Yes please,' I replied instantly.

Finally, in January, it was decided that a biopsy of the swelling was needed and an operation was booked. I visited the hospital for the results in March. I remember the date well as it was my dad's fiftieth birthday. The news was not good
–
as I had suspected I was diagnosed with lymphoma. I had Non-Hodgkin, large B-cell, to be precise. I was told at the time that this was the more aggressive type but the one that was easier to cure. I was being referred to the Haematology Department for my treatment, but it would be a long haul and I would get extremely tired and sick. They didn't exactly make it sound like something enjoyable or
fun.

Cancer is one of those things that you always believe won't happen to you. Other people get cancer, not you. When I was told I had cancer, my immediate thought was: ‘Oh my God, I'm going to die.' This was followed by despair, anger, and questions like: ‘Why me?' I don't smoke, I don't drink to excess and I eat fairly healthily.

I went to meet the consultant who was going to be looking after me. She explained all about the disease and how we were going to fight it. She was very positive and encouraging, which helped me enormously. The next thing they needed to do was stage me and give me the dreaded bone marrow
test.

I underwent six courses of CHOP chemotherapy and was fortunate that the only side effect I noticed was hair loss. This was followed by two weeks of radiotherapy. During the course of my treatment, I also had a stem cell harvest, just as a precaution against future complications.

After a CT scan, I was told the amazing news that I was in remission. I'd done it
–
the relief was indescribable. I couldn't think of anything better to do than celebrate.

Sadly, one casualty of my illness was my marriage
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life-changing experiences such as cancer can either make or break a couple; unfortunately, it broke us. Different people cope in different ways. However, on a positive note, I soon met Mark and we moved in together, choosing his home town as our
base.

I was very nervous about handing my follow-up care to doctors that I didn't know, or them
me.

My current consultant recommended a hospital and put me in touch with the appropriate person.

All continued well with life and my health until February, some five years later. We were staying in Devon for the weekend when I noticed an uncomfortable swelling under my arm. I felt sick to the pit of my stomach, and my heart sank; I instinctively knew what the problem would be. As soon as we got home from Devon, I rang the hospital. They told me to come and see them straight
away.

The consultant could definitely feel something, but until a biopsy was taken he was obviously unable to say what. We had a week's holiday planned in Majorca and the operation date typically came through for that week. When I rang and explained the situation, it transpired the next available date was a further six weeks later. We couldn't take the risk of waiting that long, so arranged a private operation for the week after our holiday. Majorca was fantastic; we went with some very good friends and it was just what I needed
–
anything to take my mind off my situation. On the flight home, I had terrible earache following the landing and could still feel a small lump in that area. I'd hoped like last time the lump might have magically disappeared.

The operation itself went well but I developed an infection and ended up being off work for over two weeks. When we went to get the results, the news wasn't good. The cancer had returned, but with a twist. This time it was Follicular Non-Hodgkin Lymphoma. I mentioned the lump by my ear and was told it felt like bone and was probably nothing to worry about. After the staging, it was decided that the best plan of action was a course of chlorambucil chemotherapy taken orally. No hair loss, no sickness, in fact virtually no side effects at all
–
perfect. Maybe it wasn't so bad, I thought. I had to go for regular checks while taking the drug. Each time, I mentioned the lump by my ear, as it was getting bigger. After the fifth check-up, one of the registrars decided that something needed to be done. She conversed with my consultant and a third biopsy was planned.

The lump was in my right parotid gland. The facial nerve runs right through it, so there was a danger of facial palsy following the operation. The last thing I needed was facial muscle weakness or even eye closure. Thankfully, I escaped this and everything was
fine.

Yes, it was Follicular Lymphoma. It was decided that a blast of radiotherapy to the area would be a good idea. Because it was to be aimed at my face, it would go across my eyes. This could possibly cause me to develop cataracts in around three or so years' time. I felt I could handle that, as I knew they are able to remove these easily enough nowadays. All the planning was done and I had a mask made. This was about 7 cm by 6 cm in size and covered part of my face, something that was needed for the radiotherapy.

On the day of the first dose of radiation, the doctor in charge pulled me aside and said she was not happy about giving me such a large dose and wanted my consultant to review his decision. He took one look at me and decided the best course of action would now be a stronger form of chemotherapy, called FMD. I had the first dose just before Christmas. It worked, thankfully; the lump virtually disappeared with just one treatment.

Obviously, I had to finish the course to gain the most benefit, but we were all really excited.

We had a holiday booked for the Christmas and now maybe I could relax and enjoy it. The holiday was wonderful and, to my delight, Mark proposed. We came home to family that were thrilled by our news. We hadn't set a date but were both thinking between three to five years' time
–
once things had settled down more with both work and life in general. I have to admit that there was a part of me that thought I may not be here in three years' time, but I tried desperately to keep really positive and kept these feelings to myself.

The chemotherapy was at intervals of four weeks, and by the time the next dose was due the lump had returned. We plodded on with the treatment and I had all four doses before it became obvious it wasn't working; yet another setback. My consultant was a little baffled and wanted to take another biopsy. My scans had shown the area in my abdomen appeared to be relatively stable.

The results of the biopsy were confirmed
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my large B-cell had returned, so I was given a more aggressive chemotherapy. Whether it was there all the time or the cancer had developed since last time wasn't clear.

Rituximab had been approved by NICE in November; we were now in June of the following year. I would be having five doses of RCHOP. This was the most I could have as I'd already had six doses of a chemotherapy called CHOP a few years ago. Following that, they recommended I have a stem cell transplant. This was planned for the September. I don't tend to make things easy for myself.

During August, I was online casually looking at properties in Devon, as Mark and I were thinking of moving back to the area. Ideally, we wanted it to coincide with my eldest starting high school. I came across a property that was absolutely perfect. Mark wanted somewhere that was going to earn us a living; we needed a large house because of the six children we had between us. More importantly, it had to fit our budget. This property met our criteria and more. I printed off the details and showed them to Mark saying that it was the kind of place we needed. Mark agreed it was perfect, and thought we might not find anything as suitable again. We could always rent it out until we were ready to move in. Anyway, one thing led to another and we decided that if the place was so right for us why not move now, so we made an offer. It was accepted around the beginning of September.

Because I was so far down the line with my treatment, I thought it would be sensible to carry on having the transplant done in the North, at my current hospital. So there I was sorting out new schools and arranging a house move all before I went into hospital for the transplant. Our completion date for the house was set for the beginning of October, which meant the house contents would move, followed by me a couple of days later. As the transplant date I had been given was for the Monday, I thought I had a whole weekend to sort things out. However, I received a phone call asking if I could go in earlier as a bed might not be available on the Monday. I didn't have any choice really, so was admitted to hospital on Friday, 17 September.

My mum was fantastic and told me not to worry as she'd sort out all the moving arrangements for
me.

My treatment started on the Sunday night and initially I didn't feel too bad; well, I hadn't been sick. I started to go downhill after about ten days. I had put on a lot of weight because of all the previous treatment in the run-up to the transplant. In addition, my body started to retain a lot of fluid. I also felt breathless and didn't want to speak to people on the phone because it was such an effort. I'd gone off my food and felt very low. I wanted to be with someone all the time and wanted someone to stay with me overnight. Mark was fantastic, especially as when we first met he told me he ‘didn't do hospitals'. He stayed every night in my room on a put-up bed. In the mornings, he would race home to wash. He wasn't allowed to use my bathroom because I was toxic and could contaminate him, and I risked picking up an infection. Mark would try to fit in a day's work and be back at the hospital for seven each evening.