My Full Story

This story shares the virtual rollercoaster that I was forced to embark on over four years ago and lasted for more than three years. As a woman of 37, in 1998, I had spent many days wishing I were a man when yet another cervical smear test was due. Having had abnormal cells identified on my cervix before the birth of my first son at the age of 26. This has meant having to undergo regular smear tests, then, agonising for three to four weeks before the letter came saying my smear was clear. Like many other women this experience although unpleasant was necessary and became a 'matter of fact' part of being a women, like childbirth pain, I accepted it as part of life.

After the birth of my two sons, life was on an even keel, until in December 1998, when not only was I due to have another smear test, I discovered a small pea shape lump on my right breast whilst in the bath. The initial reaction was one of 'oh it will be nothing' and carried on, occasionally feeling the lump and not thinking anything sinister. I decided to go and check it out with my doctor when I went for my smear test after Christmas so I could enjoy the time off work relatively worry free, except for buying a ticket for the invisible roller coaster!

So in the first week in January I visited my GP, he did my smear test and said that my cervix looked different and that he would like me to get it checked out after I had the results of the smear test. I then told him about the lump, which he examined and said he thought it should be checked out at the hospital.

I came home and believe it or not I was more concerned about my smear test as I didn't think I could face any more treatment on my cervix, as the diathermy loop I had had in the early nineties had been painful and uncomfortable. Nevertheless again I began to prepare myself for this possibility and put the lump on my breast to the back of my mind apart from occasionally feeling to see if it was still there, it was.

This was the start of the most incredible roller coaster ride of my life. Each day consisted of emotional mixtures like; 'carry on, get on with it, what if it's serious? I can cope, I have to, what about Keith (my husband) and the boys?'.

Before going to the doctors I had been interviewed and successfully enrolled on a Master of Arts Degree part time course at Durham University. It was due to start in January 1999. I went to the five-day induction programme of the course and decided this was definitely something I wanted to do. It turned out to be my saviour over the next two years. I did not tell anyone on the course at that time and ploughed myself into the learning that became all consuming when I began the desk work at home or the class work at the University.

Continuing on with daily life, working full time, looking after the children and house along with Keith, the letter then appeared telling me the smear test was clear, what a relief. Then came the appointment at the hospital for the outpatient breast clinic.

Keith and I went to the hospital for the appointment. We waited in a very full waiting area and then received a consultation with a doctor who examined me. They then proceeded with what they called an aspiration, a needle directly into the lump. This was the most excruciating direct pain I had ever felt and could only feel the tears running down my face.

The process for this test was to then wait 45 minutes whilst the test was done in the laboratory on the cells they had removed. Keith and I went for a cup of coffee. I remember it tasting of nothing. I was physically sore where the needle had been pierced through my skin and mentally sore from thinking about what thoughts I should have. Should I expect the worst or be thinking positively so everything would be okay. It was like fete games in my head.

Both Keith and I went back to the waiting area and were then called into the consultation room. The doctor then told me that the some of the cells were not normal and they would like to remove the lump to fully check it out. I then made arrangements for the date of the operation as a day patient. At that time I felt I just sat down in the roller coaster, the safety bar put in place - no way out till the end of the ride, wherever that was.

The next three weeks were spent on one hand trying to be positive and on the other trying to prepare myself for the worse case scenario. The operation happened, the lump was removed with surprisingly very little pain around the wound and a few days at home. Then back to work and university to engross myself in as much activity as possible to aid my brain not going into warp action overdrive imagining all possible connotations of the outcome of the operation. The following 14 days passed incredibly slowly, (up and down, round and round, calm hours, anxious hours) with disturbed sleep and fairly tense everyday conversations, obviously trying regularly not to divulge my understandably scared emotions running wild inside.

My family were aware of me having had the lumpectomy and were also concerned for me. Especially, my Mother who had just spent the last three years coming to terms with my father dying after having secondary bone cancer from primary prostate cancer which lasted for seven years after diagnosis, all of which was time my mother spent caring for him during his good and bad times, before, during and after different forms of treatment.

Eventually the day came to go and receive the results of the operation from the out-patients breast clinic. Keith and I sat in a full waiting area and were called in relatively quickly. The doctor said he had removed the lump and that it was cancerous. I remember feeling like I wanted to laugh but couldn't quite understand everything that was being said. I then glanced and saw Keith's face he looked like he had just seen a ghost. I then asked amid a thumping heartbeat what treatment I would need to have. The doctor explained that they would need to do another operation to ensure they had removed all of the cancerous cells. Also to check and see whether the cancer had spread into my lymphatic system. This meant some of my lymph nodes from under my arm being removed and tested.

The nursing sister who had sat in during the meeting with the doctor took Keith and I into another room and asked if we needed to know anything further, she also asked if we had children and how old they were. She then explained that the Macmillan breast care specialist nurse would contact me next week and then proceeded to book me in a time for another operation.

Both Keith and I felt numb and my mind was racing, at this point the thought of dying never entered my head, I was more concerned with how much pain I would have to endure before I was cured. These thoughts were mainly due to watching my father deteriorate with cancer very slowly and at times in obvious pain.

I went back into work, and when asked by a colleague how I was, I marched past saying 'oh just fine'. Luckily I had plenty of work to keep my mind occupied that day, the most concerning thought was how I was going to tell my mum. That evening I told her the results and explained that I would need another operation and after six weeks would then need six weeks of radiotherapy. This was the most difficult thing I have ever had to do. She was very upset and we both cried. I didn't want her to go through any more worry, I felt so guilty and said I was sorry but also realised that it wasn't my fault. I did feel angry as I felt my life was changing and I was happy with it the way it was.

I told my manager at work, which also was difficult as he had only two years previous lost his wife to breast cancer. I did not go into too much detail but gave enough information of time of absence expected. I continued working until the operation was due. It helped to keep my mind on a positive track.

I went in for the second operation and stayed overnight, again the pain was surprisingly mild, I returned home feeling fairly low and wondering how I would manage over the following two weeks waiting again for the results. The roller coaster days seemed to weld into constant up and downs. Some days I felt ok and others I felt fed up and wanted to talk to someone, but couldn't seem to find the right people to talk to.

I carried on functioning as best I could, going to work, coming home. Keith and I then went in to get the results and were feeling very tense. The time in the waiting area seemed like an eternity. We were then called in and the consultant came and gave me my prognosis. The lump had been removed successfully in the first operation, further tissue had been removed and any possible cancerous cells, and five lymph nodes had been taken from under my arm which were clear of cancer, so it had not spread into the lymphatic system. This was the best prognosis I could have wished for.

The details were then explained to me about the radiotherapy and how I would be expected to go to the Cancer treatment centre every day for 5/6 weeks other than weekends. It would start in four or five weeks once the wound had healed properly, with a consultation with an Oncologist who would fully explain my treatment plan. Followed then by the marking up of my breast so that the radiotherapy could be administered to exactly the same place every day.

During this time I had contact with a Macmillian Breast Care Specialist Nurse who was most helpful just to chat to, she helped me come to terms with my feelings and helped me stay positive. Again I returned to work and university although was struggling to keep up with assignment deadlines and had to request extensions for each one. I had thought a lot about whether to stay at work and have my treatment and class it like any other meeting or to have time off and worry and think all the time. I decided to class the treatment like any other meeting.

The week before I was due to start my treatment, I went to the hospital to be marked up, they even gave me a permanent tattoo, a tiny pinhead sized spot to help them realign the machine at each of my treatment sessions. I was at work and suddenly realised the magnitude of what I was trying to cope with. I broke down, feeling totally distraught and unable to cope with the fact that someone had told me I had cancer. The dreaded word, what did this mean, how would I carry on, all these thoughts. My manager considerately emphasised the important priorities that I was facing and suggested that I ought to put myself first as the work and job would be there when I got back. I went home, and cried.

Somehow, for some reason, it all began to sink in. The next two months I tried to relax in between visiting the cancer treatment centre daily. In the centre, which I remembered by me having taken my father there for his treatment was the same, although I felt as though everyone was looking at me. Was it because I didn't have grey hair, or because I was on my own, or maybe I was just self-conscious.

I tried very hard to continue with social outings to my friends, but found it more of a strain than helpful. I found the way they treated me very difficult to come to terms with. I knew it was hard for them but felt I needed them to listen to me. They just wanted to carry on as if nothing had happened, they didn't want my 'bad time' to monopolise their evenings. Some friends and colleagues treated me with kid gloves, which was equally difficult to cope with.

At such an emotional time, all I wanted was for my family and friends to allow me to be how ever I wanted to be, some times I wanted to talk and other times I didn't. My family did, however, some of my friends did not and I ended up not going on my regular evening get-togethers as I wasn't enjoying spending time with them. Upon reflection, they treated me how they thought they would like to be treated if it happened to them rather than treating me how I needed to be treat, all they had to do was ask.

As two or three weeks of treatment had passed I began to feel very tired. It was a strange tired it felt like someone had drained every ounce of energy from my body, it was not a sleepy tired, more of an exhausting feeling. This then made me realise I had done the right thing by finishing work until my treatment was over and I had time to recuperate.

My treatment completed and all that was left was to take tamoxifen (a tablet) every day for the next five or maybe ten years depending on research that comes available, as it changes. At that time and it's still the case now, five years seems to be the most beneficial time scale. As I write this I realise I only have 15 months left of taking this drug.

During the summer months I found that I couldn't stretch my arm as fully as I had done before and felt a thickening of the skin under my arm. I told the Macmillan nurse and she arranged for me to see a physiotherapist who I visited regularly for a good few weeks as there was 'tethering' of the muscles under my arm. This is one of the down sides of the radiotherapy. I had some unusual exercises to do but conscientiously did them, even in the classroom at university!

By this time at university I had begun to get to know my fellow students quite well. I had also missed a few sessions of lectures. I had told the course director about the cancer but asked for him to tell the rest of my group as I wanted them to know. I felt that because of the learning experience/journey we were all contributing to, I was letting them down by not attending all the lectures and they were therefore entitled to know. My course director told the whole group and they were absolutely brilliant.

I remember being quite desperate to talk to other people who had experienced what I was going through but didn't feel as though a support group at the hospital was my sort of thing. I started to look on the internet and began to read lots of bulletin boards, one particularly was in Nova Scotia, where ladies who were having treatment logged on and wrote about how they were feeling. I found this helpful, and even was able to help another lady by advising her to get E45 cream to put on whilst having radiotherapy as it helped my skin remain moisturised.

My life seemed to be rekindling itself into a reasonable normal state again. At least I had stopped shopping! I continually told myself that I could have anything I wanted, as life was too short and I was worth it. My credit cards took a huge hammering. I returned to work part time, was continuing with my studies and having regular check ups at the hospital. They are three monthly for two years then went down to six monthly which after five years will go down to yearly.

It was difficult returning to work and I had underestimated the reaction of other people towards me. Some ignored me, obviously feeling uncomfortable and not knowing what to say. Others were superficially enquiring offering insincere words that had no meaning or context, and then there were my life savers, those people who just treat me the same as before, allowing me to talk about it when I wanted and not making me feel guilty for mentioning the C word - cancer. This I have to say was my preference.

I also became very angry as many people kept asking me how I was and then qualifying that I must be feeling very good now that I have had the all clear. This lack of understanding irritated me. I began to think how more people needed to talk about their cancer experiences to help educate those people who hadn't. You don't get the all clear, you just have to be positive and hope it won't come back.

My children were considerate and somehow through all of this experience sensed the need to contribute more to the family at what was a very stressful time for all concerned. I told both my sons, Dean (11yrs at the time) and Rhys (8 yrs), they asked sensible questions, like will I die? Would I be OK? And did it hurt? What were the tablets for? These questions helped me to maintain a level of reasonableness in my life, once I had answered the questions, they continued watching TV and playing on their game boy computer games. Boys will be boys!!

Being asked whether you will die by your child, you have two options, tell the truth or lie. I chose to tell the truth, I said " Yes, I will die but hopefully not till I'm very old, just like everybody else, as we all have to die". I then launched into one of those speeches my Dad used to give me about how every living thing will die sooner or later. You just have to try and make sure it is later, emphasising that dying is part of life and we all have to accept it.

Having got through this, I began to realise that life was never going to be quite the same again. I felt angry as I had been happy enough before and didn't need anything to change. I wanted to talk a lot about what had happened, understandable since it was probably the biggest thing that had ever happened and reminded me very much of the feeling I had experienced upon the death of my Dad, not the physical pain in the heart but the highly dispersed emotions of all sorts in each and every day.

As part of the treatment, I continued taking tamoxifen for the following year then was suffering from discomfort in my lower abdomen. Having researched very carefully the ingredients of the drug and all the possible side effects, I began to worry that one of the side effects, namely the thickening of the womb lining might be the cause of the discomfort and pain.

I visited my GP who suggested I seek further opinion from a gynaecologist. Because of my employers private health care plan I managed to get an appointment fairly quickly and the consultant said that he did not think the tamoxifen would be the cause but said an internal ultrasound scan would show if any thickening had occurred to the womb. I couldn't believe that yet again I had to have another examination, but at least it would set my mind at rest, as it was in 'roller coaster' mode again.

The ultrasound scan was surprisingly painless and the consultant reported immediately, that although the womb lining was thicker than normal it wasn't anything to worry about. He then said that probably the reason for the pain was the fact that I had two ovarian cysts, one on each ovary, and that one had some sort of growth on it and he would recommend having it removed. He then organised for me to have an operation.

I could hardly believe what had been said and drove home in a state of shock. Keith could not believe it. I had ten days to wait till the operation then another 7 - 10 days to await the results that would tell me what the growth was. My mind kept darting back to how I had felt only ten months earlier whilst waiting for the results of the lumpectomy on my breast. I tried very hard not to imagine the worst but felt I had to prepare myself for the possibility of it being cancer, but then it couldn't happen again could it?

For some reason I kept thinking that maybe since this would be the third general anaestetic I would be having in a ten month period, I was pushing my luck and maybe I wouldn't come round after the operation or that something would go wrong. Because of this I decided to make sure I was prepared, I then wrote a letter for Keith and the boys, I told my sister where the letter was just in case it didn't work out.
I still have the letter, don't ask why I keep it, I don't know.

I had the operation and recovered well, the Consultant surgeon reported a successful operation, but that he had had to remove the ovary itself and the filopean tube as the cyst could not be separated from it. We then started the waiting game again for the results to identify what the growth was. I spent the time at home, trying to keep myself busy by catching up on my course work from university and catching up with reading for literature reviews as part of my assignment research.

After ten days the consultant rang me at home to say everything was fine and just to return for my post operative check a week later. This was a relief not only to me but to all my family. By this time, my sons were becoming used to me being in hospital and being a little under the weather whilst re-couperating at home and not able to do as much as before. I felt sometimes that they should be more considerate but in actual fact looking back, they maintained the equilibrium and sameness of every day hum drum living which helped me bounce back quickly.

I returned to work three weeks after the operation and was grateful to be able to continue building my life back together after these ordeals and challenges. Everything rumbled along including deciding to move house.

At this point I continually woke up and the first thought I had was ' I have had cancer', not in a panic way, it was just there each morning and last thing each night. Like when you have lost someone close. You think of them in each waking minute but this subsides over time. Having cancer is similar, now nearly four years on, the thoughts about having had cancer are a lot less, I don't ever believe they will ever go away. There is always a tiny kernel of doubt, will it come back, I'll check, what if I find something, it is sore there, it feels strange here, will I check it out? These thoughts are all still in my mind each day.

One thing about having had cancer is that you become a little paranoid. Every little pain, ache, spot or uneven part of the body gets scrutinised and considered. So when I was continually feeling like I was swallowing a lump at the back of my throat I decided to get it checked. I remember going to the Doctors and saying as I walked in the door ' I know I'm probably being paranoid' but……. He was very good and suggested I get it checked out. Wo, here comes the roller coaster again, I thought. This consultation again ended up by the Consultant recommending the removal of my adenoids, as there appeared to be some sort of skin/tissue attached to them. Keith didn't go as I didn't expect to get that prognosis. Keith was surprised when I told him but now seemed to be taking this sort of thing in his stride and colour at least flooded back into his face a lot faster than on previous occasions.

The university was helpful but not aware of the extent of trauma I had experienced. Although I understood why they would need a letter of confirmation from the surgeon at the hospital with regards to the cancer, therefore evidencing their requests for allowing me extensions on assignments, what would have been helpful is that they requested it rather than asking me to organise it. I was beginning to find it quite a struggle, and now I would be in hospital again.

This time I was in hospital as a day patient, off work for one week and stopped smoking totally, although not a heavy smoker, around 8 - 10 a day, I knew since my dad dying that I should stop. (I have never smoked since). The results came through that week specifying that it had only been extra tissue that had probably been there since birth but had just increased in size, it wasn't cancerous and everything was OK.

Even though it was now over a year since I had first been told I had cancer, I still experienced odd days where I could have cried all day, feeling like life was such a battle. So hard just to get out of bed, get dressed, be normal, how could I be normal ever again. Luckily these days began to get less often, but they still jump up and surprise me from time to time. It is like a jolt from an internal sense saying just remember, you are strong; you can cope; yes it is hard; yes it is difficult; yes it is hard not knowing what you can do to ensure it doesn't come back. But you are doing everything you can, that is just as good. Then the days come when it really is an up hill battle, this is the only way I can describe it, everything is an effort, but they pass.

The rest of that year (2000) was spent working on my dissertation for my Masters Degree, trying to catch up on what I had missed and do all the reading that was required.

Whilst finishing my dissertation I began to have discomfort again in my lower abdomen and I knew I still had another ovarian cyst which had not been removed the previous time. I worried continually, had is grown, was there something else, why was I feeling so much discomfort. I decided even though I thought paranoia was creeping into my being I would get an appointment with the gyneacologist. I did and his recommendation would be for me to have a hysterectomy and then go on to HRT. This then posed a problem as all I had heard was that HRT could cause breast cancer. The Consultant and I discussed at length the pros and cons of taking HRT and how a particular type of HRT (Tibolone)along with tamoxifen had been researched to show that it actually reduced the chance of breast cancer occurring.

Conincidentally the consultants wife was undergoing radiotherapy for a recently diagnosed breast cancer and he asked if I would call her to have a chat. I did, at least I felt I could help someone else. In subsequent telephone calls with the consultant, he also shared with me the fact that his own wife was taking both tamoxifen for the breast cancer and HRT for menopausal symptons (having had a hysterectomy).

This made me make my mind up, if it was good enough for the consultants own wife it was good enough for me. Also even though I would have to undergo yet another operation under general aneastetic, everyone that had ever had a hysterectomy had said they had never looked back.

In January 2001 I went and had a full hysterectomy, womb, ovaries, filopian tubes the lot. This now made me feel a lot happier, I could no longer get ovarian cancer, cancer of the womb, or cervical cancer this was the up side. The down side was spending a very uncomfortable, painful week in hospital and then seven weeks off work not able to do very much.

I recovered very well, probably went back to work too soon, but needed to return for my sanity. Now in January 2003, I still take tamoxifen ( breast cancer) and tibolone (HRT) and am very well and healthly. I have taken up a new hobby - horseriding, mainly as a way of communicating with my teenage son whose every spare minute is spent at the local stableyard. I still work full time, I am a partner in an all women consultancy business and having completed my story am embarking on providing a support package for people like me who are cancer survivors and for those employers who need help to help us in the right ways.

My rollercoaster has now reached its destination, and part of me is glad but also a small part is sad, as this ride has provided me with the strength, tenacity, durability and greater determination unimaginable. I don't think they would have been available to me had this rollercoaster not stopped at my door. I now feel I can do anything, overcome any obstacle, face any challenge, I have regained that wonderful feeling of invincibility I remember having around the age of 17.

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