Breast Cancer and Me: A Tale With a Twist
12th December 2007 |
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"Being diagnosed with breast cancer was not a surprise, as my younger sister had the disease 15 years earlier and made a strong recovery. I just felt numb about it as I knew the statistics showed that there was a high risk I would get the disease."Despite being almost 58, this was my first hospital visit as a patient and I was terrified about what might lie ahead. My main concern was that I was in a hospital with a bad reputation locally and I was horrified at the thought of having my first operation there. I was expecting bad news and just wanted to get on with the next stage of the experience. I guessed Mr Mokbel to be in his mid thirties and he bore a resemblance to Omar Sharif in his prime! He exuded confidence, competence and charm and I immediately felt at ease. Being diagnosed with breast cancer was not a surprise, as my younger sister had the disease 15 years earlier and made a strong recovery. I just felt numb about it as I knew the statistics showed that there was a high risk I would get the disease. For this reason, I had bought private medical insurance at the time of her diagnosis so was able have my surgery (a left mastectomy) in comparative comfort elsewhere 10 days after the diagnosis. The whole operative and in-patient experience was nothing like as bad as I had feared. I was looked after very well and it was fascinating to see how hospitals and the medical profession worked. I did, however, have serious reservations about the breast care nurse at the private hospital. In her dealings with me, she came across as an insensitive busybody who really didn’t know how to deal with women who had a mind of their own. My cancer had spread to one lymph node and would require chemotherapy but not radiotherapy. Her “finest hour” came when we were discussing the vile prospect of chemotherapy and I needed to remind her that I had also been given an 85% chance of surviving for 5 years. I really thought my ears were deceiving me when she made the incredible reply: “Oh, we say that to everyone” followed by her usual psychobabble. I interrupted her in full flow, told her in no uncertain terms that she wasn’t being very helpful and threw her out of my room. Mr Mokbel subsequently had the dubious pleasure of dealing with her and, thankfully, I was relieved of any more of her counselling attempts. "Once again, only 6 weeks after the mastectomy, I was fortunate to be operated on at the Royal Marsden by another excellent surgeon. By now, I was experienced in operations so was more relaxed and although this one was major surgery, I made another good recovery."The pre-operation blood tests had shown that I was anaemic and the concerned Mr Mokbel insisted on referring me for urgent further investigation a couple of weeks after the mastectomy. By now, I had learned to read his face and suspected he thought it was serious when he saw the scan – endometrial cancer. I faced the appalling prospect of chemotherapy and a hysterectomy. In a peculiar way, I wasn’t particularly upset about this second cancer because it delayed the chemotherapy which, to me, was good news. Once again, only 6 weeks after the mastectomy, I was fortunate to be operated on at the Royal Marsden by another excellent surgeon. By now, I was experienced in operations so was more relaxed and although this one was major surgery, I made another good recovery. I was given a couple of weeks to recover from the hysterectomy before facing the issue of chemotherapy. Whilst my instincts were screaming at me not to do it, I had been sucked in by the system and reluctantly signed the chemotherapy consent form. I was informed that because of poor veins in my right arm, I would need a small operation for a Hickman Line to be fitted. My horror increased when I was told by the oncologist that arrangements had been made for the procedure to take place at St George’s, despite the fact that I was a private patient, because it would be safer as I had recently had so much surgery. I was appalled but she wouldn’t reconsider this decision which I later learnt was the suggestion of an oncology nurse. Unfortunately for me, Mr Mokbel was out of the country so I could not appeal to him. "The dreaded day dawned and I dragged myself, with a deep sense of foreboding, to St George’s on the bus. Sadly, the wheels did not fall off and I presented myself for the nightmare to begin. "The dreaded day dawned and I dragged myself, with a deep sense of foreboding, to St George’s on the bus. Sadly, the wheels did not fall off and I presented myself for the nightmare to begin. When we met I told the anaesthetist/surgeon to be careful because this was going to go wrong – he just laughed. Mokbel Mk 2, he was not. When I woke up in the recovery room, the surgeon still in his operating clothes, told me that there had been no problem and disappeared. The nurse from the ward made a brief appearance and promptly went again for what seemed like an age. When she eventually returned, she said that she had asked the surgeon to come back to see me. It was then that I learnt that when moving me off the operating table, I had fallen onto the floor because someone had forgotten to put the brake on the trolley. When I asked why he hadn’t told me in the first instance, he said it was because I was too spaced out. My notes described me as tearful but coherent. I was left with the nasty thought that they were trying to cover it up and that it was only because of the insistence of the nurse I was told about it. The curse of St George’s had struck again. The next ordeal was the first chemotherapy session. I had developed an allergic reaction to the dressing used after the operation so my wound was cleaned before the drugs were inserted. Once they started, my chest immediately started to throb and when I told the nurse, she said it was because of the allergic reaction. I sat there in tears, muttering “I can’t believe I’m letting you put this crap into me.” As soon as the drugs were finished, the throbbing pain calmed down but my chest was very red and sore. It got worse over the next few days, large blisters appeared and the sore red area grew bigger every day. The District Nurse called to flush the Hickman Line but she couldn’t make it work only one week after it had been inserted. When I returned to the hospital, the nurses realised that something was seriously wrong. An x- ray revealed that the line had moved and arrangements were made for it to be removed by the surgeon. He told me that provisional arrangements had been made for yet another operation to take place three days later to insert a line into my neck. It would not be at St George’s as he no longer trusted them, but this time it would be carried out by another breast surgeon and he would be the anaesthetist. Mmm - over my dead body I thought. I was incandescent about this. I had no intention of letting him near me again and why another breast surgeon when I was more than satisfied with my original one? After all, I had referred to him as “God” and I am not easily pleased! Before leaving the hospital, I made an appointment to see the newly appointed Professor Mokbel on the day before the proposed operation without telling any of them. That evening, I was telephoned by the oncologist who made arrangements for me to attend the clinic at St George’s the next day. This turned out to be the worse day of my life. When the oncologist took one look at the state of my chest, she immediately went to fetch Prof. Mokbel. His face was also picturesque when he saw it, and probably for the first time I realised the seriousness of the situation. I was lucky not to be immediately admitted. Instead I was given a course of injections, strong antibiotics and serious painkillers. My future treatment was put on hold as more chemotherapy was considered to be too dangerous. By now I was in a dreadful state and told the oncologist that this was my body telling me that it had had enough. I said that I was not prepared to have any more chemotherapy in any event, or any radiotherapy. Against my better judgment, I had trusted the system once and had been seriously injured. There was not going to be a second time. I was prepared to take the drugs and take my chance. Ironically, this was the first day I was allowed to drive after my hysterectomy and “the icing on the cake” came when I discovered I had to pay £10 parking fee to escape from the wretched place!! In normal circumstances, I am a positive, forthright person (“what you see is what you get”) and well able to deal with the ups and downs of life. If something has to be done which I don’t like, I may moan but am usually able to grit my teeth and get on with it providing I think the right decision has been made. I demonstrated this with my attitude towards the cancers but when it came to chemotherapy I couldn’t do it. I was concerned about my negative feelings towards it - I learnt to trust my instincts a long time ago but persuading others to trust them is much more difficult. I didn’t even cry until things went so badly wrong. Five years later, I still feel partially responsible for what happened to me because I knew I should not have signed that consent form, let alone set foot in St George’s for the operation. It was now a question of waiting to see how the extravasation (spread of damaged tissue) healed before any decision could be made about further surgery which was ominously looking like another mastectomy. Having to lose a breast because of cancer is bad enough but the thought of having to face it again because of something which should not have happened was very hard to come to terms with. The injury got considerably worse before it finally started to show small signs of improvement some eight months later. It hurt all the time, sometimes it was bearable and I didn’t need the painkillers and others I was screaming at the walls. I quickly learnt that stress and excessive heat exacerbated it. Although I had used a cold cap, I lost my hair through the one dose of chemotherapy which was a dreadful experience. Being a Leo, I was known for my mane of long naturally red hair in my younger days which I loved. I was completely unprepared for the fact that the re growth was in the form of two-tone grey tight curls. When I looked in the mirror I was devastated as I saw my grandmother. I found this harder to deal with than the cancers. There was no way I was going to wear a wig as they all looked like bits of dead cat to me so I just had a large selection of hats. People soon realised it was better not to mention the “H” word to me and it took two years before it returned to anything like its former glory. "At this meeting he suggested counselling to me. Recoiling in horror, I replied “I haven’t done anything to deserve that.” He then went on to tell me about the Breast Cancer Haven in Fulham about which he had heard favourable reports from his patients."During this period I met my GP for the first time, Dr Narendra Sornalingam. He turned out to be another credit to the medical profession – kind, interested, sympathetic, and above all, approachable. At this meeting he suggested counselling to me. Recoiling in horror, I replied “I haven’t done anything to deserve that.” He then went on to tell me about the Breast Cancer Haven in Fulham about which he had heard favourable reports from his patients. I wasn’t very keen on this idea either but not wishing to appear too negative at our first meeting, I agreed to give it a try. This turned out to be another of life’s turning points. The Haven is housed in a beautiful converted Welsh chapel. It is a wonderful organisation which offers free support, advice and a number of complementary therapies to breast cancer sufferers. At my introductory assessment I met the breast care nurse, Joan Travers, who was about as different as it is possible to get from the previous one and still be on the same planet. We hit it off immediately - she was down to earth, helpful, funny and did know how to deal with women who had minds of their own. Not one word of psychobabble passed her lips – so refreshing! She was wise enough not to try to pressure me into group therapy or counselling. Rather to my surprise, I was impressed by the Haven, and not being well enough to return to work, tried as many treatments and group classes on art, make up, hair etc. as possible. I enjoyed reflexology but was mega impressed by shiatsu massage after which I could actually sleep. It was only when I was standing like a tree in a Qi Gong class that I started questioning my sanity! I enjoyed reflexology but was mega impressed by shiatsu massage after which I could actually sleep. It was only when I was standing like a tree in a Qi Gong class that I started questioning my sanity!Prof. Mokbel, seemed quite surprised at our next consultation, to hear that I was going to the Haven, and was amazed to hear serious praise for the breast care nurse coming from me! “What is her name?” he asked and then went on to say that he was seeing her that very afternoon for a preliminary job interview! Needless to say she was successful, the rest is history and I like to think I eased the way for her. Whilst playing this waiting game, I consulted a solicitor, who came highly recommended, as to whether I had a claim for negligence. His advice was to wait for about another year to see what developed whilst stressing that medical negligence claims were not for the faint hearted because they were notoriously difficult to prove. Having spent my entire working life in or around the courts, I have been called many things but faint hearted was not one of them! I was determined to try – not for financial reasons but to try and get some answers, and perhaps an apology. I did not proceed because there was a conflict of opinion in the experts’ reports as to whether the line had been inserted correctly and if the dropping was the cause of it to move. I had volunteered to help on reception at the Haven one morning a week which I did for a year. The date for further surgery kept being advanced because of lack of improvement, my degree of anger about the injury varied with my pain level and I was getting very bored. It was during one of my bad moments, that a nurse suggested I sought the help of a psychologist in dealing with my anger. Why being angry was considered to be inappropriate was something I failed to understand. My initial reaction was to turn it down flat, but quickly cynically realised that it could only help any negligence claim. Again, it was an interesting experience but not for me. Between sessions I went on holiday to Cape Town and realising I could cope with long haul travel again did me much more good than psychotherapy so I cancelled my future appointments. I appreciate that I am being very negative about counselling but, although it can be very helpful, it is not suitable for everybody. I found that the small amount I received added to my stress levels and made me feel considerably worse. Talking and therefore having to think about it over and over again did me no good whatsoever – what I needed was action. This eventually came on a glorious afternoon in November 2004 when Kefah decided that the injury had healed enough for him to perform a lumpectomy and implant reconstruction. At the same time, he would start the reconstruction process of my left breast. Seizing the moment, we fixed a date in January 2005. Joan and I went out for a coffee and it was then she told me of Kefah’s plan to start a charity to raise funds for his research which she had been asked to deal with. Having breast cancer concentrates the mind wonderfully on the bigger picture and she was aware I was interested in and had contributed towards his research, so this task was promptly delegated to me! I was so pleased to have escaped the mastectomy, I would have agreed to anything that particular afternoon! Thus the first seeds of Breast Cancer Hope were sown in a coffee shop in Marylebone High Street. "Joan and I went out for a coffee and it was then she told me of Kefah’s plan to start a charity to raise funds for his research which she had been asked to deal with. Having breast cancer concentrates the mind wonderfully on the bigger picture and she was aware I was interested in and had contributed towards his research, so this task was promptly delegated to me!"The operation was successful and I was very pleased to be free of pain for the first time in almost two and a half years. Two further small operations followed but I have been delighted with the final result. There is still a lot of visible scarring so I will have to live with a constant reminder of what happened for the rest of my life. However, being pain free, as well as not needing to wear a prothesis has made it so much easier to cope. I soon realised that trying to set up and register a charity was very time consuming and involved an incredible amount of bureaucracy. However, it was all worth it when Breast Cancer Hope became registered charity 1110926 in August 2005, and the honour of being the first patient trustee was mine. Its aims are to fund and/or support worthwhile research projects. After a slow start, we are making good progress as the word spreads. Fundraising has led me down many new avenues e.g. cake making which is definitely not my scene – chickens have spurned my efforts in the past, the embarrassment of selling a designer handbag on e-bay which turned out to be a fake and the stress of organising a successful evening of greyhound racing with the mayor present. My story is not typical as thousands of women undergo chemotherapy successfully but I trust I have been able to demonstrate, that despite everything, I have survived to tell my tale and there is hope for us all. Breast cancer, particularly since the reconstructive surgery, has not stopped me and I have not lost my fighting spirit. The care and treatment I have received from Kefah, his team and my GP has been impressive. If I had not needed so many consultations, I probably would not have got to know the professionals as well as I did and it is unlikely that Breast Cancer Hope would yet have been founded. I firmly believe, that whenever possible, we should seize the opportunities life throws at us – I wanted to be a magistrate, not a charity trustee, in my early retirement. The villains of Wimbledon have probably had a lucky escape! I can even think of one advantage - the excellent perfume and cosmetics provided for the “Look Good Feel Better” events. Although my breast cancer experience was more protracted than it should have been, it has, with the exception of the horrendous treatment fiasco, been rewarding and interesting. I have made some new friends, learnt a lot about the medical profession, hopefully been able to repay something, and am very grateful, more than five years later, to still be alive and well. Without Kefah Mokbel, to whom I owe so much at the helm, it would have been considerably more miserable than it actually was. Thank you. My eternal gratitude goes to: And to the unknown lady mentioned in the first paragraph – I hope you made it darling.
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