25 years on, Isobel tells her Hodgkin Lymphoma story

My story begins in the year 1980 when I was 44 years old, very happily married with three daughters aged 12, 9 and 7. My mother had died the previous year and I was missing her as we had been friends as well as mother and daughter. Apart from this great loss, I was - how would I put it? In the prime of life.

In October I had a small swelling on my neck which I assumed was a swollen gland that had not gone down after an infection. I decided to check it out with my GP. He wasn’t unduly worried about it and sent me to my dentist because the swelling was just below the jaw. The dentist found nothing wrong with my teeth so off I was sent to the hospital to see a consultant for a second opinion. Now, at that time I had very little knowledge of hospitals, so I was very surprised to say the least when I was seen by a surgeon. He took one look at the swelling, and to this day I will never forget his life-changing words: “Right we’ll take you in and take that gland out and look at it.” I still cannot explain how I felt. What was he talking about? I had a swollen gland only. What did he mean by “we’ll take it out and look at it”. What’s was he looking for?

The well known phrase ‘and the rest is history’ should apply here but in my case I would describe it as “From that point, things went from bad to worse.”

I went to hospital and had a biopsy, and, after waiting 5 days in the hospital for someone to come and tell me the results, I was sent home, because it was Christmas week. I was told to come back in January. Lucky for me I had a great husband and we managed to have a good Christmas for the children. But in fact trying to look back to that Christmas is still all a blur to me.

In January I went back for the results only to be told in a somewhat vague manner: “The results are not clear, but there is something wrong with your blood.” Still not thinking anything could be wrong as I felt so well, and wanting them to sort out what must be their problem, I went alone for my appointment with the Haematologist, as there were no Oncologists at that time in the hospital where I had my treatment.

I was seen in a six bed ward. The consultant came to the bed, pulled the curtains round. He had a couple of medical people with him, his registrar and a nurse. I was sitting on the bed and he opened my file and looked at me. He was a very sensitive man and I am sure that he tried to be as gentle as possible but he uttered the words, you have Hodgkin’s disease and it’s a cancer.

Although I was still sure that it couldn’t be true, because after all I was not sick, I went into shock. He was saying it to me. This couldn’t be happening to me. They still must be making a mistake.

But this time there was no long delay. Within ten minutes, they were doing a bone marrow test and then I knew there was something very wrong with me. I had never

experienced such physical pain and of course to make matters worse, the word cancer was going round and round in my mind. I can remember leaving the hospital and getting into my car, but I don’t know who drove that car (although it was me). All I could focus on was the fact that the test had confirmed that I had cancer. I was going to die.

I did not know anyone who had survived cancer, so it didn’t matter if I crashed the car on the way home. But somehow I got home and phoned my husband who left his work immediately and came home to me. I think I cried so much he could not make out what I was telling him. But for the sake of the children, I knew that I had to get myself into the proper frame of mind to get on with this treatment and somehow try to be positive about the outcome.

We decided not to tell the children that I had cancer as they were very young and might be frightened. Cancer was such a scary word to children as indeed it was to me at the time.

I started chemotherapy treatment once a week and it went on for four months. It was MOPP treatment which was very sickening and there were not many anti-sickness drugs available at that time. I had to stay in overnight every Thursday, going home on Friday morning. I found the treatment very difficult as my veins were very small and the fear of not finding a vein was almost more frightening than the treatment itself. There was no cancer ward in the hospital at that time, so I had my treatment in any ward where they could find a bed, whether it was a female or male ward. It was not very nice to be vomiting behind curtains during visiting hours and I was sick most of the night after treatment.

I lost almost all my hair and had to wear a wig, which was extremely traumatic for me. I think appearance is so important when you are ill and wearing a wig did nothing for me. However I managed to get through the treatment and by the end of April, I had a scan and went back to out patients for the results. When I heard the magic words ‘all clear’. I just cried with relief.

So life returned, and now I saw that the whole experience had made me more conscious of all the good things in my life. I had three lovely children and a great husband. Two very good years followed

In the summer of 1984 my world fell apart again. I started to feel unwell. I couldn’t eat and I lost a lot of weight. I tried to fool myself that there was nothing wrong but, when I had to drag myself eventually for a check-up, I was told I had relapsed. More bone marrow tests, more blood tests and more scans.

Yes, they told me, the cancer had come back. I was totally devastated. I had survived cancer once, but surely I would not survive it twice? I could see no future for me, and as I am not a very brave person the whole idea of more chemotherapy was appalling. I became very depressed, and, as I started treatment on 21st December 1984, I was very afraid. My veins were still very small and I knew I would be frightened at all the probing for veins even before the treatment, and then there would be the after affects. Again I was very sick, but this time I had my treatment as an out patient, which meant that at least I was at home when I was at my lowest. This time I lost all my hair and I found this most distressing.

My husband and I decided to tell the children this time, as they were old enough now to understand and so that when they saw me so sick they would not worry. To my surprise they were great about it. I told them it was the same illness I had two years previously and they were so positive and they had such belief in my recovery that it was one worry less for me.

The treatment again Chemotherapy MOPP first for six months and then AVBD This took 15 months as I kept getting infections, and, unlike today, when there are drugs to help fight infections, I had to stop treatment until each infection cleared up. And each time I got an infection I had to go to hospital for at least two week for intravenous antibiotics. At one stage I got such a bad infection that my body seemed to give up and I had a complete breakdown. This time I spent three weeks in hospital. The doctors were very worried about me at that time and more tests were done including a lung biopsy, without a general anaesthetic, the memory of this lives with me still.

During my treatment in 1985 I had to have blood transfusions at two different times. This was the time news began to break of the link between blood transfusions and HIV. It was very difficult for me to have these transfusions as news was breaking about the link and I was very worried that I would get an infected transfusion. Thankfully I didn’t.

With me being so sick and worried not only about infected transfusions but having to leave my children every time I went to hospital, it put a heavy burden on both my husband and myself. Eventually my husband decided to give up work and look after me and the children full time. As you can imagine this was not easy for us financially and we had a very difficult time trying to manage everything. I had a very supportive extended family with three brothers. They helped all they could in a practical way but I know that they felt helpless as they could not understand what I was going through.

On reflection 1985 was the worst year of my life. I was so very sick and early in 1985 my youngest daughter made her Confirmation. It was around Easter time. I was in hospital with one of the many infections I kept getting. The doctors allowed me to go home for 24 hours for her Confirmation but I had to go back the next day. I was very weak and could only manage to go to the church with the family but could not attend the ceremony. I can remember feeling I had let me daughter down and although she never knew I was not in the church for the ceremony. It was a very sad time for me. I was also in hospital for my 25th wedding anniversary that year as well. As I said not a very good year.

It was a long haul with many stops and starts and finally the veins gave up, but then I had a Hickman inserted and the treatment was much easier to take. I finally finished treatment in February 1986. I had another scan and this time when the doctor told me it was clear, I think I cried again with relief.

Two weeks later I got shingles and not just the regular kind, I got it in my mouth and up the side of my face. Back to hospital again for three weeks, but this was only shingles which I knew I would survive.

Okay, so how was I all that time – brave, courageous? Far from it. I was not a very positive person at that time. It is hard to be positive when you’re so low. Since then talking to people I have found many concerned about the ‘power of positive thinking’, some urging the likes of me to have it, others trying to find it. Others saying that I should have been more positive and that as a cancer support person I should say that I was positive.

Well I can tell you that I am living proof that you can survive without being positive.

Well, the good news is that my life returned in a very real way. For the past 16 years now, I have been actively involved with Lymphoma Support Ireland; formerly known as HUG.

There are moments of real achievement for me... Such as when I talk to a frightened new-diagnosed patient on the helpline and they ask me what do I know about Lymphoma, and I can reply: “Well I had it twice.”

ISOBEL THOMPSON 25TH MARCH 2005.