by Chris Geiger
18 April – At 3:00 A.M., Teresa and I watched Mitzi deliver her kittens. She really had been listening to me. She had five kittens in total: two black and white, which looked a little like her; two grey and white; and one pure grey. This was a big boost to my recovery and perfect timing, too.
19 April – I had to go back to the hospital to see what they had found during my operation. I was told the cancer had spread to my lymph glands and they had therefore removed them. Because of this, it was decided I would need some chemotherapy and radiotherapy. I felt very numb at the news and started doing things in a complete daze, knowing I’d need more treatment. I guess I’d hoped by having the mastectomy all the cancerous cells would have been removed. My dear Mitzi and her kittens were so lovely and really helped to take my mind off the situation but I knew I still had some big decisions to make.
1 May – My appointment with Oncology arrived, confirming I’d need both chemotherapy and radiotherapy. I continued to recover from my operation, while disbelieving I’d need further treatment. This was another nightmare I didn’t want either. My niece visited me and brought some books about breast cancer, as well as information on the ‘Bristol Approach’ published by the Penny Brohn Cancer Centre. This centre was started by Penny Brohn, along with Pat Pilkington, who wanted to develop a holistic programme for people with cancer. As I started to read it, the more I wanted to find out.
14 May – At my appointment with the oncologist, I gave her a list of my allergies and told her what reactions I have to certain things. She told me that the chemotherapy would be more life-threatening than the actual cancer because of all my allergies. She explained that she wanted me to have radiotherapy because it would give me a seventy percent chance of the breast cancer not returning; obviously, I agreed. I explained I was taking Arimidex and some strong painkillers, but was having a lot of side effects. She advised I stop taking the Arimidex for a while.
When I saw my doctor a few days later, he also suggested I stop taking painkillers. This meant I could only take paracetamol. As I’d stopped the painkillers, I decided it was time to try a little meditation and some relaxation exercises. I’d been doing exercises since the operation to help with my arm and shoulder, and was almost able to straighten it above my head.
18 May – I was now able to drive again; only a short distance, but I really felt like I was making progress. When the post arrived that morning, I opened an envelope to see a list of dates for my radiotherapy sessions, which was really scary. Feeling concerned, I phoned the helpline and they talked me through what was involved. They even suggested I visit them before I start my treatment, to see the machines. When I put the phone down, I cried bucketloads; it felt as though all the emotion and shock of having breast cancer had suddenly found its way out. I was on my own and knew I didn’t want the radiotherapy but realized I had to have it; I felt trapped. I also had to have an MRI scan at the end of the month; this terrified me, too. I used to have a real problem in confined spaces and this fear was returning. I had coped well with the surgery and my stay in hospital, but the radiotherapy really worried me. I no longer felt the brave person I’d been up to now. At 7:00 P.M., I spoke with the radiotherapy helpline again. The nurse was lovely and we chatted for well over half an hour. She explained how important the radiotherapy was for me, which helped calm my nerves.
19 May – Saturday again; the weeks were flying past, even though I wasn’t working. The kittens were already trying to get out of their box; eventually, it was the smallest one that managed it first. By the end of the day, they were all running about on the floor. They were such a tonic and really helped to cheer me up.
21 May – My niece took me to the Oncology Department and help centre to talk about my forthcoming radiotherapy. The lady I met was very helpful and showed me photos of the machines to alleviate my fears.
29 May – I sat in the waiting room looking at the other people, wondering if they were waiting to see the consultant to find out if they had breast cancer. I wanted to say, ‘It’s OK, everything will be all right; it’s not as bad as you think.’ When I was talking to the nurse, she asked if she could give out my telephone number to a few people who had just been diagnosed, who were waiting for their operation. I immediately said, ‘Yes.’ If I could help anyone, I was more than pleased to do so. That evening, my niece drove me to the relaxation centre, where I did some meditation and healing, which I found really helped me.
30 May – I visited the Oncology Department to have my MRI scan, which I’d not been looking forward to one bit. Thankfully, Teresa came with me for support, which helped. I took one of my favourite music CDs to try to help relax me.
When I was called, I explained I was claustrophobic and extremely nervous. The staff were all lovely and so understanding; they made me feel more relaxed and comfortable. I climbed onto the bed with the machine above my body. They measured me, drew lines over my right breast area where I’d had the operation and demonstrated how the machine would come down close to my body. They explained that the machine would make a noise for several minutes and then it would stop and then start again; this would happen three times. They said I could ask them to stop at any time, but it would obviously take longer as they’d have to start from the beginning. They played my music and talked to me all the time through headphones while I was being scanned. In my mind, I managed to turn the noise the machine made into the sea, waves crashing against the sea walls. On the final section, I was actually visualizing standing on a beach with my friends in a circle around me. We were all drumming and I was dancing. I found this helped me to get through it, by visualizing something much nicer. Once the MRI had finished, the noise stopped and the machine was lifted up away from me. I needed to stay there a little longer while they took photos of the pen marks on me. They couldn’t use the normal type of pens they used on other people because of my allergies. This meant the marks might get washed off in the shower. The pen marks would show them the exact place to give me the radiotherapy each time. They gave me a marker pen and asked me to renew the lines each time I showered until the radiotherapy was complete, or until the tattoo marks could be made.
I got myself dressed, and before I left a radiographer took Teresa and me along to the simulator room to show me where I’d go the following week for my radiotherapy.
When we got outside, the relief was so massive I burst out crying. Teresa gave me a reassuring hug and we headed off to find somewhere nice outside in the sun for lunch. Afterwards, I felt much better and was pleased how well I’d coped. If you’re reading this and you suffer from claustrophobia, I can assure you it’s not that bad – if I can do it, so can you.
9 June – I had a lovely relaxing weekend in Minehead, enjoying the company of friends and beautiful sea views and walks. It was just what I needed before I began my radiotherapy treatment.
18 June – The day had come to start my radiotherapy. I was to receive four minutes per day, five days a week. I was due to have four weeks like this and on the fifth and final week finish with a double dose. After the tenth day, I was feeling really ill with my allergies, so arranged to see a doctor. I told her I wasn’t sure I could go through with any more radiotherapy treatment. She told me that, while she understood it was hard for me, I must continue. I came away feeling even more upset than when I arrived.
Over the weekend, I decided I needed to take a break from the treatment and phoned Oncology on the Monday. They told me the machines were broken, but would be fixed by Tuesday, when I must come in.
On Tuesday morning, I phoned the Radiotherapy Department again and said I couldn’t make it. They told me that this was the last day I could have off without it affecting my treatment. I was told if I cancelled any more appointments I would have to start the course again. They reminded me that, if I continued with the treatment, I would have a seventy percent chance of not getting breast cancer again. However, if I missed any more sessions, the treatments I’d had already wouldn’t be effective and it would have
been a waste of time.
This was the hardest decision I’ve ever had to make in my whole life. I needed to make sure I was doing the right thing. I phoned the Penny Brohn Cancer Centre. They obviously could not advise me but suggested I read a book called Your Life in Your Hands. I had already tried to find information about stopping the radiotherapy halfway through, without any success. Coincidentally, I already owned the book, so sat down and read it the whole way through. I then did some meditation for a while and came to the decision that I was going to stop having radiotherapy. I kept asking myself what if I was wrong. I sat down in the kitchen and wrote a list of reasons for stopping and soon became convinced my decision to stop was the right one.
During the next few days, I decided I would attend some of the Penny Brohn Cancer Centre courses. I saw my doctor as I knew I’d need his approval and some forms signing. I explained about stopping the radiotherapy and he said I was one patient who knew my body better than anyone. He felt sure I’d done the right thing for me. In fact, he suggested that I contact the Penny Brohn Cancer Centre, and I said, ‘Well, you won’t mind signing these then,’ and presented him with their forms.
18 July – I got myself measured up for my prosthesis. When I saw what they looked like, I was so relieved and pleased that it was small, soft and light. I had expected it to be heavy as they used to be years ago. I then went shopping for some new bras with a pocket for my prosthesis and got home feeling invigorated and like a new person. I was now on my way to feeling more confident and looking forward to the future.
It took me two years before I could go back to work, which was mainly due to the difficulties I’d had with the radiotherapy treatments and my allergies. During the two years I was at home, I carried on working on my self-development, which was proving very worthwhile. I read loads of self-help books, received art therapy, healing, reflexology and other alternative therapies from the guys at the Penny Brohn Cancer Centre. I’d always been interested in alternative medicine, and the cancer centre courses and healing really aided my recovery.
Six years after my operation, I’m pleased to say my consultant shook my hand recently and said, ‘You did know your body and knew what was right for you – congratulations.’
I am still working full-time as an accounts manager, colour counsellor, healer, teacher and colour life coach; I love keeping busy. I also like supporting people with breast cancer on the www.CancerInCommon.com online forum.
Finally, I have now been completely discharged from the breast care centre after my mammogram in April.
I want to thank everyone who has helped me, especially my family, Margaret and Teresa, Mitzi and Pixie, my doctor and consultant, and all the staff at the Penny Brohn Cancer Centre.
Newspaper Column by Chris Geiger
Saliva, Chopped Pork and Divorce
Membership: # 1
I was encouraged but not surprised to read that scientists have developed a breath test, which detects cancer before patients suffer any symptoms. I say I’m not surprised because for years the police have been able to detect the vintage of the wine I’ve been drinking, by my simply blowing into a bag. In fact, by looking at a swab of my saliva, doctors can obtain my DNA and work out who my ancestors were. Not wanting to show off, but just one whiff of my wife’s breath in the morning and I can detect what she had for dinner the previous night. Actually, best I change the subject – divorce comes to mind.
I had one reader email me, asking if I’d explain in detail the medical terminology I use. So, for her benefit and wanting to prove I listen to my readers – a little like David Cameron listening to his electorate – here goes. Saliva is a clear liquid secreted into the mouth by salivary glands and mucous glands; it moistens the mouth and starts the digestion of starches. Divorce is the legal dissolution of a marriage. Hope that makes sense, Mrs Copper?
With the ability to identify and learn so much about us just by poking around in our mouths, I’m surprised credit card companies haven’t got us licking a machine when shopping. Forget ‘Chip and Pin’, how about ‘Lick and Pay’? I might write to Barclaycard with my suggestion. Since DNA is unique, credit card companies could soon identify us and save the consumer from remembering yet another pin number or password.
Again for the benefit of Mrs Copper – DNA is a nucleic acid that contains genetic instructions used in the development and functioning of all known living organisms and viruses. Please, Mrs Copper – don’t confuse this with a computer virus, like you confused junk email (Spam) with chopped pork and luncheon meat.
These scientists have developed sensors that can spot chemical signs of lung, breast, bowel and prostate cancer in a person’s breath. They believe further work could lead to a cheap, portable ‘electronic nose’ capable of diagnosing cancer at an early stage. Now I’m not sure I’d be capable of that. My wife’s previously eaten tofu is about my limit.
A team of scientists carried out tests on 177 volunteers, some healthy and others with different types of cancer. This study showed that an ‘electronic nose’ can distinguish between healthy and malignant breath. It can also differentiate between the breath of patients with different cancer types. If this is true, it could save millions of lives.
So, if your nasal senses aren’t as efficient as mine, or until this ‘electronic nose’ is launched, do me a favour please – go and see your doctor if you feel unwell or notice any unusual lumps or bumps; feel free to blame me.
My Story by Mark Gillett
Keep Smiling
Membership: # 20
At the age of fifteen, I’d been diagnosed with diabetes, the sort that needed daily injections. I also needed a carefully controlled diet. Not ideal when I was experiencing the usual teenage problems; I’d just discovered girls. Despite the setback, I got on with living my life. I left school, got a job, then another, and eventually managed to keep a girlfriend for longer than five minutes.
To move the story forward, things appeared to be going well. Now in my late twenties, I’d got engaged to Sharon and eventually got a job that I enjoyed. I was still also managing to keep my diabetes under control.
Unfortunately, out of the blue one day, I fainted. I then continued to have fainting spells regularly and felt quite unwell. After several fainting episodes, Sharon convinced me to see my doctor. After explaining my symptoms, it was naturally thought diabetes was the cause of my problems. He decided to refer me to one of the diabetes specialists for further tests.
Two weeks passed and, despite looking after myself a little better as the specialists had suggested, I started to feel even worse. I had also now developed a rash so went back to see my doctor again. I saw a different doctor this time, as my usual doctor was away. He examined me, checked my eyes and looked at the rash. His thoughts were that it might not actually be the diabetes causing the problems, and he made an appointment for me to visit the Haematology Unit the following day. I remember the appointment quite vividly.
After the tests and a very painful procedure with a large needle, I was told I’d need to stay overnight at the hospital. They neglected to mention that I had Acute Myeloid Leukaemia, which I didn’t find out until I was ushered into an isolation room; oh, and asked to sign some consent forms.
How to explain the story now is difficult, as the chances are most people reading this will be familiar with the usual side effects some cancer treatments can cause.
These included hair loss, which for me was a struggle as I loved my long hair. I had big hair, think Duran Duran style, sad but true! Other problems included trouble sleeping, poor concentration levels and having a Hickman line fitted.
I was also worried about the stress and upset I was causing my family and friends. I was very concerned by the awful news that the treatment would make it unlikely that Sharon and I would be able to have a family. Within just two hours of receiving this devastating news, I was asked to produce a sperm sample for storage. Having to retreat to the hospital en suite shower room to fill a plastic pot wa
s far from appealing. I wish I could say I was successful and filled it to the top; however, with all the will in the world, the romance was missing – nothing happened.
Anyway, for six weeks, I lay in bed having treatment. My hair started to fall out, which was making me resemble Buster from Bad Manners. I had drips bleeping away and my wee being measured out in cardboard cups. Sharon sat with me every day and did her best to keep me going. We had some very funny moments together, which really helped me get through my treatment.
Once, the television in the corner of my hospital room was so loud it made it difficult for us both to actually hear each other. The theme tune from Top Gear was blasting out. Spontaneously, both Sharon and I started playing our air guitars and hummed for all we were worth, only stopping when the laughing got so loud. The nursing staff came rushing in thinking I was crying with pain; they didn’t believe me when I said they were tears of laughter.
Eventually, my treatment was reduced and I was allowed home. I still had to come into hospital daily; unfortunately, at that time, our car was proving very unreliable and it finally broke down on the way in one morning. A breakdown driver soon arrived in the dirtiest truck imaginable and said he’d have to take our car to a garage; all I was concerned about was all the germs. I still had to be careful as my immune system was low after all my treatment, making me very prone to infection. Anyway, I had no choice so asked if he could drop me off at the hospital. On the way, we started talking about my cancer and the various treatments. As we pulled up to the hospital, he said a friend of his brother had the same but had died, ‘which was sad because he was a good customer’. Not really a story I wanted to hear at that point.
There is humour to be found in most situations and I always felt it was important to allow myself to laugh. Sometimes it helped me to cry and scream; in fact, being selfish at times helped me, too. I hoped everyone understood it wasn’t personal.