“When everybody loves you, you can never be lonely" ...
Peter Bullivant was 51 when he was diagnosed with Melanoma in 2002. Living in Ormskirk at the time, he underwent surgery and Doctors removed a malignant melanoma from his chest plus two sections of lymph nodes from under his right arm. These were found to be cancerous. The Surgeon then gave him the ‘all clear’. However, just as Peter was planning to return to his ‘normal life’ his oncologist decided that some more precautionary treatment would be best, as he was ‘high risk’. In cases where there has been ‘spread’ to the lymph nodes it is always possible for the cancer to return, but not always possible to detect it easily, until sometimes too late. The big surprise to Peter was the actual treatment proposed – Interferon.
The support he received throughout from Liz, his wife, his family, friends, work colleagues and medical staff was ‘great’ and this gave him a stable framework for his life without which he still doesn’t know how he would have coped. Peter decided to keep a diary – and here we publish a few excerpts for the benefit of readers who may be considering Interferon as a treatment.
“The recommended treatment is to have a month of daily injections, given intravenously at the hospital. Each daily dose is 40 million units of Interferon A. This is followed by a further 11 months of subcutaneous injections 3 times a week, each of 20 million units. These can be self-administered or done by a nurse whichever I preferred. The Interferon treatment was described as the equivalent of taking a year out of your life because of the fatigue and other side effects.
The Oncologist pointed out the statistical evidence about the treatment and its success rates, which, at the time, frankly didn't seem sufficiently convincing to be worth a year of side effects!
My initial reaction was not to have the treatment because of work commitments and other lifestyle considerations. I'd just got back to running regularly again and there were some projects at work, which needed my input, plus I didn't want to restrict my family and social life. And why should I? Now that I am ‘all clear’ after the operations!?
I contacted a help-line number at Christie's Hospital in Manchester and had a really good discussion about the pros and cons of the treatment, and I went on some web sites where the patients all said how difficult the side effects were to deal with but also they all said that they would do the same again, even one case where the cancer had come back some years later.
Liz and I Iooked at it from the point of view that if I were not to have it and the cancer returned at some point in the future then we wouldn't forgive ourselves for giving up the opportunity to improve my chances.
It was at this point during the various conversations with medical staff that the phrase "high risk" was used again, because cancer had been found in my lymph system. This phrase was to stick with me and was to crop up at fairly regular intervals over the next 12 months.
Initially I couldn't, or wouldn't, believe that I was already anything other than cured and back to normal. This feeling didn't entirely go away and to a certain extent I think this helped me through the difficult days I experienced.
It was only in Sept/October of the following year, after the treatment had finished, that I started to realise the journey that I had been on and how different the outcome could have been. I then felt very lucky to have survived.
Into the Unknown.
August 2002: The first day of a month of daily Interferon injections at the Lilac Centre at Whiston Hospital, and feeling positive about the decision but also anxious about the potential side effects. I don't want to be a burden on anyone and want to keep as normal a routine as possible.
After the first injection, I felt completely disorientated, went to bed when I got home, had tea later but had a shivering attack about 8:30 p.m. so went to bed with 2 hot water bottles to get warm.
Next day, feeling very tired with some flu like symptoms first thing, so I took two paracetamol with breakfast. Off to work, I'm treating work as a bonus – a way of occupying my brain, keeping it active. Feeling a bit disoriented and my concentration wavers at times. Warm sunny day but I feel cold.
The Injections continue:
Sometimes I find it difficult to face visiting, or being visited by, people. Although friends have always been interested and supportive, I find it a big effort to socialise. I prefer it when the people we see continue to lead their normal lives because it makes me feel that I'm normal as well and that this situation is only temporary. My daughter smokes and I tell her that I don't want her to go through what I am going through. I hope it has a positive outcome.
Week two: A mixed week of ups and downs. I'm not feeling any of the shivers of the early days but the tiredness is still there. Went to work 3 mornings but needed a sleep every afternoon. Still feeling guilty that I am a "passenger" at work and at home. Life seems to be going on all around me and I have no input. Mentally I need to stay strong; I can sense depression if I don't take any action to get out of the negative spiral that your mind creates. The feeling that there is nothing to look forward to is very debilitating and dangerous. The end of the treatment seems a long way away – so I can’t use that as a motivational factor to keep going. Resolved to keep walking, listening to music, playing my guitar, and as soon as negative thoughts come into mind (particularly in bed at night) to focus instead on things that I enjoy doing. It seems to work.
October 2002 to April 2003; Getting used to it: Two months into the 3 injections per week regime and I’m having difficulty raising any enthusiasm for anything especially this diary. Energy levels still variable and unpredictable. Going to work Mon. Wed. Fri. most weeks but am really not functioning properly.
Went for a short walk around the local nature reserve and Liz and I talked about the "living for today" attitude, which is put forward by so many people, particularly in situations like this. I could so easily have said, "Let’s jack it all in, sell everything and spend the lot doing everything we have always wanted to do". But when we thought about it we didn't really have anything that would be better than what we are currently doing. How lucky we are!
Saw the GP yesterday, I have a chest infection so am on antibiotics. Checked with the Lilac Centre that these were compatible with Interferon and they are.
Visiting the doctor again, antibiotics don't appear to be clearing up the chest infection. There is also a problem that one of the side effects of the Interferon is a dry throat and phlegm when I cough. So it is difficult to distinguish this from a genuine infection.
I have had a weary week; feeling more tired than of late. Spent all Tuesday morning in bed. Tuesday seems to be my worst day every week and I think it's because the Monday injection comes after 3 days of no drugs so the effect is heightened on Tuesday. The Oncologist confirmed that this happens with other patients and one patient actually has the injection on Sunday to try to reduce the effects. At times like this I get a bit depressed about the situation with nothing to look forward to except more fatigue and illness.
And suddenly today I have more energy and feel like I did about 3 weeks ago before the chest infection. (For the record, the antibiotics prescribed were 1) cephalexin 2) co-amoxiclav)
18th April 2003: Good Friday. Have decided to join Joanne on a 4-mile fun run in Calder Vale later today and am really excited, and looking forward to it.
Fun run went really well and I wasn't last
Sunday 27th April; Setbacks: A bit if a setback this week, which rocked my mental state and caused a lot of worry. On Thursday I had my normal 3- monthly check up. A small freckle-like growth was noticed adjacent to my chest scar. I hadn't noticed it before but then I haven't really been checking and my skin has red spots on it any way as a side effect of the Interferon. There was some debate about what it was and what should be done about it. The Surgeon said he probably wouldn't have done anything about it but with my status as "high risk", it was decided to remove it to be on the safe side. They managed to fit me in that afternoon at the end of their clinic and it was all over by 4:15. This has really got me thinking because up until today I had simply never considered the possibility of cancer returning during the treatment. The fact that it might have returned and so quickly gave me a real shock and forced me to consider the possibility of a relapse. I'll be seeing the Surgeon again next Thursday and will get the biopsy
Friday 2nd May: Given the all clear yesterday. The biopsy was negative. After the initial relief, I'm not feeling as overjoyed as I think I should be. I can't explain it; maybe the constant tiredness depresses your emotional state - who knows? Anyway life is back to "normal" and I've resumed the exercise programme. The scar is healing well so I shouldn't have any problems with the stitches. Everyone has been very kind in sending their best wishes when they heard the results. I guess everyone (including me) was holding his or her breath after hearing about the operation. Eileen came round on her way back from the gym. She and Howard are going to do a fun run in Blackburn in June. I think I will do it with them.
Saturday 10th May: It all started early on Thursday morning at about 4:30 am with stomach pains. I got a bad case of the shivers and couldn't stop despite 2 quilts, 2 hot water bottles and wearing a dressing gown over my pyjamas. Worse was to follow. I was violently sick and had an awful bout of diarrhoea. I went back to bed but was still shivering and by this time it was about 6:00am. Another bout of D&V (as the hospital politely called it) left me feeling awful. After returning to bed for a while I needed the toilet again and had to crawl there because I felt too weak to walk. I then just laid down feeling weak and sweating profusely. Liz called the Lilac Centre for advice and the oncology nurse advised an ambulance to get me to hospital. The paramedics arrived and did a number of tests. Blood pressure was very low, I was given oxygen before being admitted to A&E at Ormskirk. All tests proved negative (ECG, X Ray, blood test, urine sample) but my temperature remained high for a few hours. When it started to fall the doctor released me with no explanation except that it could have been a bug, which caused the D&V, and the violence of it caused a drop in blood pressure. I was discharged at about 3:00 p.m. Got home and went straight to bed. The Oncology nurse came round to remove my stitches. Spent Friday in bed, drifting in and out of sleep. Took Imodium, which eventually worked; drank lots of water and some Lucozade and ate some toast and honey. Saturday got up for a few hours, had two boiled eggs, some toast and sat in the sunshine. Missed my Friday injection. I'm feeling like my system is upside down, I'm back to my worst zombie days so I'm going to have to eat gradually but sensibly to replace all this lost energy.
Thursday 26th May: Saw the Surgeon’s assistant who checked the blood blister on my scar and confirmed it was not a problem. She then inspected the rest of my scars and found a small lump close to my right armpit under the skin. She said it could be scar tissue, but to double check she took a sample of fluid for a biopsy.
Monday 7th July: Biopsy results “inconclusive” so another operation next Monday. Blood test still "low" so the advice is to keep off Interferon injections until after the operation. This didn't make sense to me because the two previous times I've had local anaesthetic no one has advised me to miss any injections. Coupled with the fact that I doubt the blood test results due to my good energy levels, I'm confused. I am also concerned, particularly since my visit, and the confusion at this interview. Is the lump more serious than I am being told? Despite missing 3 injections I am feeling unsettled, anxious and very low. I have lost faith in the advice being given and the inconsistency. Liz phoned the Lilac Centre for advice and they were very helpful and suggested we come on Thursday after the clinics. Really good discussion and we got to the bottom of the problem. In summary, two assumptions, both totally incorrect, caused the ‘stop’ advice to be given 1) the "very low" blood count (The Oncologist said he didn't recognise that I had had a very low count anyway, nothing was unusual recently) 2) Some confusion over whether my operation was a local or general (they thought it was general and so had advised me to keep off the injections). The Oncologist said that he would take me off Interferon completely now based on this current evidence as I had nearly completed the course and it appeared that I'd been through a lot recently. He wasn't convinced that another month of injections would have any extra benefit. Having set my sights on completing a 12-month course based on the advice given at the start of the course of treatment, I was disappointed with this advice. My feelings were that, come hell or high water, I should complete the twelve months. So we agreed that I should start the injections again and get back to the normal routine next week. I felt much better mentally after this discussion but much worse physically! Fancy me asking for another month of pain when I could have stopped now?
Operation completed today. Another extremely long wait for theatre and my notes weren't at the hospital when I checked in. There was some confusion about whether it should be a local or general anaesthetic. My letter said local and the later arrival of my notes confirmed this. Surgery completed about mid-day. The lump was a lymph node, not part of the section that was removed last year. It didn't have the "blue-black" colouration of a cancerous node (in fact he asked me if my melanoma was normally black, and I said it wasn't). It definitely was not scar tissue but a biopsy was needed. The lymph node may have been swollen as my body thinks I have an infection due to the Interferon. Results should be available in two weeks and the stitches should be ready for removal then.
Tuesday 22 July: Biopsy all clear!!! Phew! Saw a very competent doctor in the Clinic. He had actually read all my notes before the discussion! He gave good explanations of how I should examine myself for lumps near my Lymph nodes.
17th August 2003: It’s all over now: I'm not feeling much different yet, which is to be expected I guess. Everybody has been brilliant - Phil and Jill Hunt brought round some flowers; cards from Howard and Eileen; and Dave and Debbie. Had some champagne to celebrate on Friday night, the night of my last injection and played guitar with Dave. Pete Quaye came round on Thursday night and Nana stayed over on Friday.
No great elation on finishing the course but it feels like a constant worry has been lifted and it is a relief.
Would I do it again???? Probably, but ask me again in 5 years time.
January 2004; Looking Back: The experience has changed the way I think and the things I do. I feel I have been given a second chance at life. Not everybody is this lucky. I want to make the most of it. I am much more sympathetic and empathetic with people who have illnesses. I am no longer embarrassed when talking to people who are ill. I used to feel that if I couldn’t be of help to them, it would be awkward to talk to them.
Remembering how much I appreciated people coming to see me during my illness, I now make an effort to do the same to friends who are ill.
Spiritual health has become important for me, I have learned how to keep stress at bay and I regularly practice these techniques. I have also started taking more interest in the Bible.
I am an even greater fan of running than I was before my illness. I learned during the Interferon treatment how positive an experience running is for me. It raised my energy levels and kept me positive through some quite depressing periods. My running goals have changed. Now my goal is not to improve my race times but to keep healthy and fit so I can continue to run for the next 40 years. I am taking up different kinds of racing (trail, x country and fell running) for variety and motivation.
Before being ill I couldn't imagine it would be possible to love Liz and my family more than I did. Even though it's hard to believe, I really do love them more than ever now, and I really appreciate how they helped me through the difficult times when they would just be there treating my problems as though they were only a temporary blip before getting back to normal. Liz was a great supporting influence for me.
All in all I feel I have benefited from my experiences. So, hopefully you will find this diary of help to you, either in your decision making process about Interferon or, if you have already embarked on the treatment.
In either case, good luck; I hope things work out for you.
Coping with Interferon: Things that have had a positive benefit for me.
- Regular sleeping; early nights and an afternoon nap for about 1-2 hours.
- Paracetamol helped to relieve the shivers and flu-like symptoms.
- Gardening, which is a good combination of fresh air, exercise, and gives a sense of achievement. It can also be done at your own pace.
- Walking, which provides great relaxation, gentle exercise and some purpose. I used guidebooks and then I didn't have to think too much about route finding.
- Manageable DIY jobs
- Developing a working routine, Mon., Wed, and Fri. This helped me keep my brain occupied and developed a routine for work colleagues to rely on. It helped me retain a sense of purpose and worth, and feel less guilty about being a passenger.
- Reducing anxiety by thinking of positive things like what I really enjoy doing etc.
- Jogging/walking; sticking to a routine, which doesn’t over-tax me. It has had a tremendously positive influence and has improved my outlook a great deal. The down side is that I may have done too much on occasions. Entering fun runs has been really motivational.
- Crosswords; not too demanding, but enough to keep the brain working and pass the time in Hospital Waiting Rooms.
- Change of diet: less alcohol; less processed food; more fruit and vegetables
- Strong family relationships
- Good support from friends
- Support of my Boss at work and support from my work colleagues
| Interferon is used as a treatment for certain cancers like malignant melanoma, multiple myeloma and kidney cancers. It is actually a naturally occurring protein produced when the body is challenged by viruses, bacteria, parasites, microbes or cancer cells, but synthetic forms are usually used for the drug. Interferon alpha, the usual version used (the others are beta and gamma), stimulates the body's immune system in the expectation that this will then overwhelm the cancer. Interferons belong to a class of proteins called glycoproteins and are cytokines. Interferon was discovered during work on Smallpox in Tokyo and Influenza in London.
Interferons are antiviral and possess antioncogenic properties. They can enhance the ability of T-cells to recognise a 'foreign' cell, then activate Natural Killer cells to attack and macrophage activity to 'digest and remove'.
Because only small amounts are naturally found in the body, the sudden large levels do cause significant side effects - including depression, dizziness, pins and needles, and loss of appetite, sickness, fatigue and flu-like symptoms. In some cases hair loss and fertility loss have also occurred.
Treatments vary in duration. You may need to go into hospital, or a nurse may come to your home. It is even possible to self-administer. The Interferon is usually given by subcutaneous injection in the abdomen or thigh and phials should be kept in the refrigerator. Localised skin irritation may occur.