Thursday, February 10, 2011

One Woman's Breast Cancer Story

Mrs M.L. 'My Story So Far......'


On Tuesday 5th October I was looking after my 3 year old grand-daughter. We were getting ready to go out with a friend of mine who has a daughter of a similar age.

As usual I was late and in a hurry, whilst showering I noticed a knobbly lump on the top of my left breast, my hands were soapy and this made the lump more evident. I immediately panicked when I realised what it could be.


I had been fortunate in having had the same doctors for many years and I did not hesitate, I got on the phone straight away and made an appointment to see him at his morning surgery two days later, on Thursday October 7th. During those two days the lump was continuously on my mind but I only examined myself once more just to make sure. After that I could not bring myself to touch it anymore until just before I was admitted to hospital nearly four weeks later. I decided not to tell my family although I had a very strong sense the lump was serious. I am very close to my family and I did not want to worry them until I was sure. This was not an easy thing to do and I was constantly in two minds.
Thursday 7th October - I visit my G.P.
The day of my appointment was a day of very mixed emotions. I was very confused, one minute I was feeling very positive and the next very frightened. I had had two previous mammogram scares but I knew this lump was very different from a cyst I had had fourteen years ago, and I now had a real gut feeling that this was going to be a different result from the last two.

I arrived at the G.P. surgery for my appointment with Dr Ian Roberts and after a brief tem minute wait I was called through to his room. He examined me and explained that regrettably he could not discount the lump, he also checked under my arm and said how pleased he was that this area was clear.


He then told me he would send me without delay to Mr Peter Jones. His words were 'we are very lucky to have a great team in Maidstone Hospital under Mr Peter Jones'. He also told me how pleased he was that I had found the lump and had come to see him so quickly.

"...[my doctor] was extremley confident that if our worst fear was realised the treatment success rate was extremley high..."

That afternoon I was telephoned and given my appointment with Mr Jones. On the following Wednesday October 13th, being slightly superstitious this was not good. That evening on October 7th I told my husband of my findings and of the following appointment. I insisted that I wanted to attend the appointment on my own, and that I was not ready to tell the family yet.
My husbands reaction to my news as I knew he would, he was very logical, very calculating, very calm and reassuring in the fact that he was extremley confident that if our worst fear was realised the treatment success rate was extremley high.

Friday 8th October - Keeping Calm
.
The next day I went to work at Marks and Spencer's and a great number of colleagues. I had decided not to tell anyone of my problems as it could after all be benign, I now realise I was extremley hopeful that week. I kept very busy all day Saturday, I had my grand-daughter and I foound her invaluable, not a moment for thought with her around. Mondays and Tuesdays I also look after her so it was Wednesday almost before I knew it.

I must admit I thought that week would have been the longest of any in my life but it proved to me that I needed to keep my mind active. Time to think was not good. The nights were obviously the worst but I did sleep remarkably well.


Wednesday 13th October - The Consultation and Investigation.

I met Mr Jones at Maidstone Hospital and after a quick examination he told me I was going to Preston Hall immediately to have a mammogram, ultra-sound and biopsy taken from the lump. After a telephone call I was on my way gripping a piece of paper with a rough sketch of my boobs with a mark on the left one.

"...it was a good feeling that other people knew about it - professional people who wanted to help and would do everthing in their power to eradicate the problem..."

The speed and professional way in which this was done must have had an extremley calming effect on me as I left the hospital and drove my car to Preston Hall very aware of my actions and waited to be called for the treatments. Yes I was a little nervous but with quiet resination. A very unusual feeling for me on reflection I was now thinking straight and realising everything that could be done to analise the problem was being done and it was totally out of my hands, it was a good feeling that other people knew about it - professional people who wanted to help and would do everthing in their power to eradicate the problem.

I was at Preston Hall over two hours. The specialist Dr Sver was very thorough it was obvious he was having difficulty coming to a conclusion, I was told I would be a considerable time as Dr Sver would carry on until he was sure he knew everything. I remember being quietly pleased when he told me that for my age I had 'young breasts' (a nice way of saying my muscles were in good condition). In total he took several x-rays, and ultrascan on both breasts, a biopsy of the outer and the core.

The staff seemed concerned that I was on my own and had to drive home to an empty house, with this in mind I decided to call and see my daughter just a short stay and chat before returning home.

It was only when she opened the door to me that I decided she should know. I knew that those tests would be conclusive, I am and always have been extremley close to my 27 year old daughter. We sat down and I told her where I had been and why my voice was shaky. I had to stop for a few seconds-I was going to cry, if I remained strong I knew she would and that was the most important thing to me at the time. Yes I admitted to her that it could possibly be malignant but it was small. Everybody was telling me I had acted quickly and treatments were very successful these days.

A few tears rolled down her cheeks and I went to cuddle her, my words were 'you must be strong for me', maybe a selfish remark but after that we were able to talk about it which I believe is very important.

I told my son and daughter-in-law because as I have previously stated I now believed this was not a thing that was going away on its own, as I have my grand-daughter, Hannah, two days a week in order that my daughter-in-law can go to work, the sooner they knew the better, Hannah would have to have another 'nanny' while I was in hospital and having treatment.
Mr Jones had arranged for me to attend Somerfield Hospital on Friday October 15th so that I did not have to spend the weekend not knowing the results.

My husband, on the evening of October 13th was supportive, concerned but noticebly quiet and thoughtful. He also announced that he would be accompaying me on Friday for the results.
I must stress that these were the worst two days of the whole ordeal. I suffered with a tummy upset through nothing but nerves and during this last week I had lost 91bs in weight, the majority of that was in the last few days.

Friday 15th October - The First Diagnosis.
We attended the Somerfield Hospital where a lady came into the waiting room, and called us into her consulting room, this lady was Sue Jones, wife of the consultant Peter Jones. I was certainly impressed by the husband and wife team.
She sat opposite us and calmly told us that the results were 'positive grade 2 cancer' hearing this word for the first time sent a shiver down me. I am not aware that when I told my friends and family I said 'I have a lump in my boobs' even now I find it impossible to say I have 'breast cancer'. These words to me are like a death sentence. I am sure that many people think the same way.

Sue Jones explained that the lump was quite small, I had noticed it early and that I was extremely lucky as the mammogram, ultrascan and first biopsy were not conclusive and I could have been one that slipped through the net, but the biopsy of the core was conclusive.

Surgery would be in three to four weeks time.

As Sue sat there telling us this I felt completely numb, although I was as sure as I could have been that this would be it, it still came as a shock. I started to shake and my teeth chattered, I remember saying I needed a drink- I was going to faint, I felt extremely hot and light headed I couldn't wait three to four weeks, 'I want this thing out now' and 'its growing all the time' were some of my ramblings and reactions.


I still remember her sitting calmly and telling me she was starting treatment for me today, HRT patch to be removed and 'Tomoxafen' to be taken daily. I cant remember what questions I asked but her reply was that 'we would not be wasting our time if we thought we could not be successful', 75% of patients are. This immediate treatment was to contain it and hopefully shrink the lump.


I must say I didn't believe her, she also said I would have to have sleeping tablets as I could not possibly sleep without aid.


Anna, one of the team specialist breast nursing sisters was called into see us and we were taken to another quiet room with Anna who sat with us and spoke very quietly and re-assuringly of what the operation would involve, including the removal of the nodes as well as removal of the lump. She talked us through the after effects on the arm and the possible discharge where I could still have a drain inserted and the emptying of this bottle which could be done by our-selves. Also books and leaflets were given to us along with telephone numbers where we could ring at anytime for support. The most important thing I gained out of the meeting with Anna was the importance of , as she put it 'getting your head around it, getting your mind to accept it and thinking positively'. Yes she said it will always be there popping in and out of your mind but it will get better. I didn't believe her.

"The most important thing I gained out of the meeting with Anna was the importance of, as she put it 'getting your head around it, getting your mind to accept it and thinking positively'..."

We left, my husband was very quiet, both with our thoughts. We both said afterwards we felt very lost not knowing what to do, where to go - to go home or visit a member of family, just sit in the car, cry - numbness took over.

On the way home I decided I wanted to speak to my own G.P. This for me was possible and he was able to see me within ten minutes. He re-assured us by echoing Sue Jones and Anna's words of the drugs 'Tomoxafen' and the mental state of the patient is so important, time must be given to help your mental state. How true that is.

He did prescribe some drugs for sleeping but did ask me to try and refrain from using them. To this day I did not need one, much to my surprise and determination.

It was not easy, infact many nights I woould wake at all times of night, some times once, others two or three times, I'd end up watching television, or trying to read, I'd read the same page three or four times and still be aware of the contents.

Saturday 16th October - The Long Wait.
That weekend of October 16th was the start of some very low days, some not so bad, and then noticing that things did seem better, it was a see-saw effect, somehow the positive factors started coming to the front more and more. I still not told my colleagues, only my manager and four very good friends at work, the reason for that was I didn't know how I could handle people acting sympathetically towards me as long as people around me remained strong and positive that made me stronger even in my quieter moments it gave me strength to look to the future.
The date of November 16th was given to me for admittance, It was strange because I should have felt elated but to me it seemed a lifetime away although it would only have been five weeks from first seeing Mr Peter Jones. I must admit the fear of keeping this thing inside me growing and spreading plagued me. This fear compelled me to re-examine my lump and to my surprise it had shrunk. This discovery made me very positive and when I received a letter bringing the operation date forward toNovember 9th I thought it was wonderful news, my attitude was now good.

On returning from a weekend away (October 29th and 30th) I received a phone call from Francis, Mr Jones' secretary on Tuesday 2nd asking me to go in that afternoon for tests and report to the 'Day Ward' November 3rd at 7.45am for the operation.

I was overjoyed I never ever thought anybody could look forward to going to hospital for an operation as I did, I just wanted this foreign body out of my body, the sooner the better.

Wednesday 3rd November - The Operation.
The admittance staff were wonderful, kind and explaining about everything that they were doing and were about to do. I met the team, Mr Jones, his registrar and his doctors before going into theatre at 9am.

At 2pm I was sitting up in bed wondering where my visitors were. I was on a saline drip and also had a drain.

At 7.15pm a nurse appeared and wanted to send me home as there were no spare beds in the hospital, the day ward was closing at 8pm. I was not too happy with this and asked to speak to the doctor so he could re-assure me before I was willing to go home.

The duty doctor was decidedly agaainst me being discharged and I was wheeled into 'Jonathan Saunders Ward' in front of the emergency exit.

The staff were very apologetic and very caring.

Thursday 4th November - The Aftercare.
I was visited by Mr Jones' registrar and doctors to be told that the operation went very well and all the nodes were removed and a draining system was in place. I was visited by the breast cancer Physio and given a sheet of exercises where Gill, the Physio assistant took me through all four of them, she informed me she would return the following day, which she did and was able to answer all my queries on my left arm regarding hymedema.

I was very happy with the treatment I received in hospital but very sympathetic with the nurses and staff concerned with the shortage of beds and closing of wards through lack of money.
I was discharged on Friday November 5th after seeing Mr Jones' team again and getting the thumbs up, I left with a follow up appointment for November 10th for final results of the operation.
Wednesday 10th - The Final Result.
We arrived at 2.10pm on November 10th at the clinic and we were given apologises for a delay of about one hour because the results of some of my tests were not ready
.
We were finally called through to the most wonderful news we could have wished for, nodes completely clear, radiotherapy to start in January for three to four weeks. We were introduced to Dr Pickering who will now be in charge of my ongoing treatment.

Getting Back To Normal Life.

After hearing the wonderful news of the Lymph Nodes being totally clear and only radiotherapy treatment needed and Tamoxifen tablets to be taken for the next 5 years, my husband and I were totally elated. With both of us on cloud nine and now had a future to look forward to. The death sentence that had been given to me had now been lifted and I feel owe my life to my GP, the Specialists Peter and Sue Jones and their wonderful staff at Maidstone Hospital.

"...my husband and I were totally elated. With both of us on cloud nine and now had a future to look forward to."

We immediately telephoned our three children and families with the news, then went shopping with a spring in our step. Brought lots of goodies, chocolates, wine, lovely cheese and biscuits, everything that we really enjoy but had not been in the mood to enjoy in the last few weeks, as all food had seemed tasteless. Life took on a complete new meaning for our children and us and we celebrated a fantastic night with the whole family. I felt and still feel extremely fortunate.

The After Effects.

Whilst I was being examined by Mr. Peter Jones he noticed the swelling under my arm and told me he would drain it. I had suffered the discomfort from this but thought it was part of the healing process and would possible disperse on its own accord. When the fluid was drawn it gave me considerable relief. I should add that the draining of the fluid was a very simple, painless process and although I found it preferable not to watch I was told about 1 ½ pints had been taken. I was amazed. If the swelling returned I was assured that I could return to the hospital any time for further draining. It was also explained to me at that time that the build up of fluid seems to effect some people while others seem to have no problems at all. There seams to be no explanation for this or for the length of time that it can occur, for some a few days or months. In my case I had to return many times as often as 3 - 4 times a week for about 4 - 5 weeks. It was very time consuming but a very small price to pay. It was never painful only uncomfortable. Especially when exercising the arm which I did religiously 3 times a day.

The Exercises.

Lymphoedema was a condition that I was extremely concerned about. Again it seems some people suffer from this and others it does not effect. I had numerous discussions concerning this with my physiotherapist who stressed that the exercises would probably help prevent this happening.

I do know that the amount of effort and time put into exercising has certainly reaped rewards for me. After the operation it is quite worrying to start exercises with an incision and stitches under the armpit but the very next day you are encouraged to move the arm with gentle movements and then gradually building to different stretching exercises. It seemed a slow process and I wondered if I would ever be able to use my left arm as I had before, but it was actually only a few weeks before I could fully extend my arm out and straight above my head.


Wednesday 8th December -

Measuring And Preparing For Radiotherapy. An appointment was made to attend the Radiotherapy Clinic to be measured for the forthcoming treatment.

A very accurate measurement is taken and minute markings are placed on your body making sure the treatment you will receive is exactly where it needs to be. Again it varies as to how long the treatment will be prescribed. It was decided I would have 20 treatments Monday to Friday inclusive for 4 weeks starting 10th January. I was not at all concerned about this and was assured if I had any worries or questions, to just telephone the breast care nurses.

The back up team was superb, as there were occasions when I was concerned and needed advise and reassurance there was always somebody at the other end of the telephone to advise me.

Although I wanted to return to work my GP advised me to wait until after Christmas as I work in retail and obviously this would be an exceptionally busy period. I returned to work on 3rd January and although very pleased to be back I found it extremely tiring.


10th January - Radiotherapy Treatment.

Several people had offered to accompany me on this first day but I declined. I felt I would like to start getting back to normal and doing things on my own (since my diagnose my family had made sure I always had company and this was a great help at the time).

I arrived early and was told to put on a hospital gown and take a seat in the waiting area. With trepidation's I took a seat only to realise I was the only person on my own, and at that time I needed someone to talk to as my nerves were getting the better of me. I flicked through a magazine but was not concentrating on any of the contents; I found myself eves dropping on other people's conversations. The sight of some people looking extremely ill, some thin and frail, others obviously wearing wigs because of their hair loss with treatments. I had overheard conversations where some of these extremely ill and mature people had to travel as far as 80 miles round trip everyday for the duration of their treatment; others were discussing secondary and third cancers, mastectomies and men with prostrate cancers. Oh, I wish I had a friend or a member of my family to have helped me through that ordeal. The more I listened the worse I got, panic seemed to choke me, I seemed to be rooted to the chair wanting to get as far from the hospital as I possibly could. I rushed to the toilet and felt very unwell. I should have felt extremely grateful that my cancer had been detected and removed so quickly and that I only needed radiotherapy as a precaution, but I was very frightened. When I finally made it to the treatment room it was not a problem. The machinery was slightly intimidating as it was so large and I felt very vulnerable, lying on the bed. I was put into a position and told not to move. The nurses then left the room and the machine started, it whirls and buzz's over you for a few seconds, the nurse then re-entered and moved me into a different position and repeated the process.


There was no physical feeling what so ever, but mentally I was having difficulty coping with the treatment as the days went by, the easier it became but the more exhausted I was becoming. I had to take time off from work again as I was falling asleep as soon as I arrived home after treatments and by the last week I was really like a zombie. I had no interest or enthusiasm for anything; a very unusual feeling for me. I knew how I felt, depressed, I tried my utmost to fight it but it was hopeless, all I wanted to do was sleep. My treatment finished 4th February, but I did not return to work until the middle of March. As it took a few weeks to regain some energy. The other problem I had was my breast had become burnt. Firstly it was only a blister but soon developed into a nasty burn underneath, my left breast. It was noticeably larger than my right, and it was very heavy and was rubbing making the burn worse. I was painting the wound three times a day but it was a very slow healing process as it was in a difficult position for the air to get to. I still have a large red mark now but a small price to pay for my life. At this time I was definitely at my lowest ebb and still tiring very easily, extremely emotional and very weepy. These feelings very slowly improved but it was a year before I really could say I was back to my old self. The surgical scar is virtually invisible I had been warned against sunbathing for at least a year and given a list of preventative skin care treatment also advised to be extremely careful and wear protective clothing on the hand and arm for gardening and household duties.


March 15th - Dr Pickering, Head Of Radiotherapy.

After examination of my breast and underarm, Dr. Pickering was pleased and another appointment was made, June 28th, earlier than normal as I had made holiday arrangements with my husband.

"I must say I really do feel completely back to my old self, lots of energy, full of enthusiasm and confident that the cancer has been completely eradicated thanks to my Specialist Doctors and Nurses..."

I try to attend the Maidstone Breast Cancer Support Group meeting, organised by the Breast Cancer Nurses Anna and Fiona, which they hold once a month. There is always a speaker, lots of advice, fund raising events and of course ladies who have had breast cancer. Everybody is so friendly and helpful, mentally we all help each other, it can be a huge boost and very reassuring when there are ladies that had their cancer diagnosed 10 to 12 years ago and even longer. A year has now passed since my operation and I still do my exercises especially when I feel my arm tightening and I am now leading a normal life. I have had 2 follow up appointments, one with Mr Peter Jones and the other with Dr. Pickering who have both been extremely pleased with my progress. I am not due another visit to the hospital until May next year, with that news I feel absolutely wonderful and so very lucky. Also I must say I really do feel completely back to my old self, lots of energy, full of enthusiasm and confident that the cancer has been completely eradicated thanks to my Specialist Doctors, Nurses and of course the wonder drug Tamoxifen. I would like to add that this drug has had a side effect with me in the form of extreme hot flushes, quite embarrassing but I am assured these will end after the five years of taking the drug. Also my left boob is still larger and firmer than my right but improving all the time. I am extremely thankful for being here and able to share in my children's future and to see my grand daughter start school and take part in her life.
I would like to take this opportunity to express my sincere thanks and gratitude to Dr Roberts, Mr and Mrs Jones and their team, Dr Sever and Dr Pickering as well as all the staff of Maidstone Hospital. I hope this short appraisal of my care can be of some value.

M.L.

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