BREAST CANCER - THE JOURNEY NO-ONE WANTS TO TAKE
THE MIRACLE OF POSITIVE THINKING AND MIND CONTROL
SUZETTE'S STORY
My husband, Andy, is the best thing that has ever happened to me – he has helped me through the most difficult time of my life and given me the strength to fight and keep on going when faced with adversity. I really do not know how I would have managed without him.
PLEASE BUY A CALENDAR FOR 2012 IN AID OF HAVEN CHARITY TO WHICH ME AND 11 OTHER LADIES APPEAR NAKED TO HELP WOMEN AT THE START OF THEIR BREAST CANCER JOURNEYS KNOW THEY CAN LOOK AND FEEL GREAT AFTER THEIR BATTLE WITH THE DISEASE. GO TO WWW.ONTHEBRIGHTSIDE.ORG.UK. PRICE IS £10 PLUS P&P.
PLEASE BUY A CALENDAR FOR 2012 IN AID OF HAVEN CHARITY TO WHICH ME AND 11 OTHER LADIES APPEAR NAKED TO HELP WOMEN AT THE START OF THEIR BREAST CANCER JOURNEYS KNOW THEY CAN LOOK AND FEEL GREAT AFTER THEIR BATTLE WITH THE DISEASE. GO TO WWW.ONTHEBRIGHTSIDE.ORG.UK. PRICE IS £10 PLUS P&P.
1. 2009 Left mastectomy - Operation
2. 2009 - 6 three week cycles of "EC" chemotherapy over 4 months
3. 2009 Collapsed with chemo during cycle 1 - fainting episode in shower banging head, nose and chin - blood everywhere - ended up in A&E
3. 2009 Collapsed with chemo during cycle 1 - fainting episode in shower banging head, nose and chin - blood everywhere - ended up in A&E
4. 2009 Further complications with chemo during cycle 6 - uncontrolled sickness, Shingles, high temperature, loss of bowel control, shivering, Gastroenteritis, delirious - admitted to hospital for 4 nights
5. 2010 Expander fitted to left side of chest - Operation
6. 2010 Right mastectomy and double reconstruction operation moving Latissimus Dorsi muscles from back to front of chest together with use of double breast implants
7. 2010 Complications with surgery - developed fat necrosis in right breast - had another operation to remove
8. 2011 Prophylactic Salpingo Oophorectomy (ovary & fallopian tube removal) - Operation
9. 2011 Double nipple reconstruction using skin from my groin - Operation
The Beginning
I received a visit from my 2nd cousin, Charles (who used to be my GP) to tell me about a cancer gene which was in our family. Charles had had breast cancer and he informed me that he carried a cancer gene and thought it was his duty to let all the family know this information so they could decide for themselves what they wanted to do.
I decided to get checked out by my GP. She could feel nothing wrong with me but she sent me to a Cancer Specialist as a precautionary measure.
My Cancer Specialist checked me out and also could feel nothing wrong with me. After telling him about Charles he decided I should see a Geneticist and did not recommend a mammogram at this stage. The Geneticist told me my risk was 50/50 of having a breast cancer gene as she did not know at this stage whether my mother had one or not. My mother had died aged 38 of malignant melanoma and at this point I did not know which members of my outer family had the breast cancer gene apart from Charles.
As I had no lump and no symptoms there did not appear to be any urgency and I therefore just got on with my life and forgot about it. That was until the invitation arrived, nine months later, for a mammogram which the Geneticist had organised.
The mammogram had picked up calcification in my left breast and I had to return to the hospital to have 10 biopsies before it was picked up to send it off for testing to see if it was cancerous. After being given a local anaesthetic a long fine needle was put into my breast as it was clamped in by the mammogram machine. I was in that machine having the procedure done for about an hour and felt very emotional and light headed afterwards. The anaesthetic had worn off during the time it had taken the hospital to locate the calcification and I had to have another one. It was like trying to take out eggshell from an uncooked egg – every time you try to locate the shell the membrane makes it move and it becomes difficult to catch hold of. Having this procedure done was very similar.
The Diagnosis
Eventually I was sat in front of my Cancer Specialist to hear the outcome of the biopsy. Being told I had breast cancer at the age of 42 and that I needed a left mastectomy was the most shocking thing I had ever heard anyone say to me. Andy was with me as I sat in front of my Consultant when these words were uttered to me. The shock was obviously too much to bear as he slowly lost consciousness and had to be supported as the words started to sink in. My mind was all over the place, I started to stutter and ask question after question but not hear the answers, just lips moving as if everything was in slow motion. How we drove back safely from the hospital that day and arrive home I do not even remember.
I had never had an operation in my life. I had always had a phobia of having one. My mother had died at the age of 38 from skin cancer, malignant melanoma. That was over 25 years ago. It was like history was repeating itself. Would I die having a general anaesthetic? How safe was it? My whole breast was coming off - how much pain would I have and how would I cope? Questions questions questions – they run through your mind like a jogger doing his rounds bringing with them that awful stomach wrenching fear that builds up inside you like a fire, engulfing you and stopping your mind from thinking of anything else apart from what you are facing.
The day before my operation I had to have a radioactive injection into my left nipple. This was because during my operation my surgeon was going to put dye into me to remove my sentinel nodes besides the breast and the radiation helped him to locate them.
The Fear I Felt
I had two choices. I could let the fear take over me and turn me into a nervous wreck or I could try and control it and stop it taking over me. Simple ... two paths to take and it was my choice which one I took. Easier said than done, you might think. However, I was determined to pick the right one and picked the latter.
Slowing down my breathing and stopping my brain from fixing on the operation was what I had to do. Thinking calm thoughts, nice thoughts, happy thoughts. I was not going to let this take over me. Thinking of the now, not of tomorrow or the next day. Nothing was hurting me now, was it? My body was reacting against a “what if”. Right now, this very second there was nothing to fear. Tomorrow would take care of itself.
The night before my op I told myself these words and kept up with my breathing techniques. Slow ... slow ... breathing. I have nothing to fear right now at this moment. Relax. Think happy thoughts. Sleep ... I slept like a baby - all night.
Operation Day
The day came. Of course it had to come. 21 March 2009. As I packed I told myself I was going on holiday. When I arrived at the lovely Spire private hospital I felt excitement. There was no fear at all – nothing. I was calm and relaxed. Andy was looking at me wondering how I was coping and found it amazing that I was so calm. As I lay on the operating bed with my arm outstretched with the cannula inside just before I was to be put to sleep I was making jokes with the anaesthetist.
Then I woke up. I felt the deepest relaxation sensation I had ever experienced. I had remembered dreaming, a nice pleasant dream. As I started to focus I could see a nurse bending over me and she was reassuring me everything was over with and it was all okay. A lovely warm blanket was put over me and a pillow under me for comfort. I felt no pain at all, just a heavy sensation on and off in my legs which was a pump to help the circulation go round. I had two drains inserted into me to remove excess fluid and oxygen to help me breathe.
Aftercare
I went home a few days later and Andy took good care of me. I needed help with bathing in order to keep my plaster dry and couldn't do any household chores. Andy kept telling me how well I was doing and how much he loved me and did as much as he could to help me whilst working 6 days a week as a private hire driver. He was continually praising me, popping in to see me between jobs and trying to make me feel good about myself.
The plaster was taken off a few days later and I was shocked at what I saw. There was a huge build up of fluid under the plaster swishing around; it felt very strange like I had been all stitched up but carrying 2 pints of liquid which had nowhere to go. It was an awful feeling. I learnt this was a Seroma which is very common after a breast operation and my body would absorb the fluid eventually.
I went through a lot of pain and worked hard at doing mobility exercises to get my arm working after my operation. It is common for your arm to stiffen up after surgery and I could only lift it to a 90 degree angle. I exercised my arm 4 times a day and within a month of having physio I had turned the corner and could stretch up fully with my arm above my head. My cancer specialist thought I had better mobility now than before my operation and was very pleased with me! I think all the years of yoga I practised must have helped with my recuperation.
I was also told that they had taken away not one but two cancers which were grade 3, the most aggressive kind and that I was Oestrogen Receptive Positive. I would need Chemotherapy as they had found isolated tumour cells in one of my four nodes. My HER2 result was negative so I wouldn't need Herceptin.
Photo of me before I lost my long hair.
Chemotherapy
Chemotherapy started on 24 April 2009 at The Spire in Leeds whose service and staff were excellent. I felt very supported by the staff there as well as by my breast care nurse who helped with any emotional support or questions that I had. It was wonderful to know I had someone there who I could talk to if I needed it and her positive way of dealing with my all my fears were very reassuring.
The drugs I was having were known as “EC”. This was administered via a cannula. One of the drugs was red and the other was clear and it made my urine go a bright red colour. All in all I would be having Chemotherapy for about six months with 6 treatment sessions.
I tried the cold cap to stop my hair from falling out but it was so tight and cold I would be guaranteed to get a headache a few minutes after it was placed on my head and it really was mind over matter to get through the pain. I stuck it out for two sessions as I was determined not to lose my hair as it was down my back but unfortunately by the end of three weeks it had already started to come out in handfuls. It didn't take long before I was totally bald. This was the most upsetting part of my experience and I cried for days over it. My long beautiful hair which had taken years to grow had all gone and I had to come to term with the the idea of wearing a wig.
I tried the cold cap to stop my hair from falling out but it was so tight and cold I would be guaranteed to get a headache a few minutes after it was placed on my head and it really was mind over matter to get through the pain. I stuck it out for two sessions as I was determined not to lose my hair as it was down my back but unfortunately by the end of three weeks it had already started to come out in handfuls. It didn't take long before I was totally bald. This was the most upsetting part of my experience and I cried for days over it. My long beautiful hair which had taken years to grow had all gone and I had to come to term with the the idea of wearing a wig.
On a plus side my body was the smoothest I had ever felt. You don't just lose the hair on your head, all hair disappears. My body felt as though I had been at the beauty salon and been exfoliated, scrubbed and buffed. I had never felt so smooth in my life.
Andy came with me to my sessions. He was there always supporting me and helping me and saying kind words to help me get through everything.
When I got home after my sessions I would start to feel sick and my heart would start to race. The fear feeling started to take over me. Recognising this was a fear symptom I put on some sea bands and took myself to bed. Lying flat I did some deep breathing and closed my eyes and mentally tried to calm myself down. I told myself I wouldn't be sick and that it was just my own feelings making me feel this way. I pressed the points of the sea bands and told myself the feelings of sickness would ease. They did do. I lay very still and just concentrated on my breath. Eventually I fell asleep. When I woke up the sickness feeling had gone. However, I was still very delicate and the weekends were the worst after the drug had been in me for five days when I would need total support.
Food Cravings and Enhanced Tastebuds
I experienced food cravings for the first time in my life whilst having Chemotherapy. I had never experienced food cravings before. I think the Steroids were to blame for this. I remember eating 20 sandwiches in one session I was so hungry! I also got a food craving for Cottage Cheese of all things and couldn't stop thinking about food all of the time.
Let's turn the food craving debate on its head. When ordinary people cannot stop thinking about food and therefore give in to their cravings and then develop a weight problem I think this is caused by a chemical imbalance. If a person such as myself who is slim and has never experienced food cravings yet suddenly develops it while on Chemotherapy surely there must be a chemical imbalance in the general population who cannot stop eating certain types of food. If there was a drug which could counter this imbalance this would cure the world of obesity. It has to work both ways – I weighed more than I had ever weighed in my life while on Chemotherapy because I couldn't stop thinking about food and then giving in to my cravings. This unusual thinking disappeared once I stopped having Chemotherapy and once the chemicals left my system.
On a plus point the Chemotherapy enhanced my taste buds. During one session I was drinking a green tea with cranberry and before I had my Chemotherapy I could hardly taste the cranberry. However, after the session my taste buds exploded with strength and I could really taste the cranberrys. Behind every cloud there is a silver lining!
Having my chemo. My head covering is a wig.
Cancer Gene Diagnosis
I eventually decided after everything I had been through to find out whether I carried a cancer gene - unfortunately the news was bad. I now face an uncertain future as I have a fault in my DNA and carry a harmful mutation in my BRCA2 gene. Apparently my mother's malignant melanoma to which she died aged 38 is linked to this fault and hereditary but the highest risk for me I am told is up to an 80% lifetime chance of a new breast cancer forming in my other breast as well as up to a 20% lifetime risk of ovarian cancer besides the risk of other cancers I can do nothing about. It has been strongly recommended to me that I have an operation to have my other healthy breast removed and my ovaries and fallopian tubes taken out because of this risk. The gene mutation passed to my mother but fortunately not to my mother's sister. This is how the gene works – there is a 50% chance of it being passed down to the next generation and it is a fresh gamble each time someone is born as to whether they inherit the faulty gene or not.
The inherited type of breast cancer I have is very rare. To put it into perspective only 5% of women who have breast cancer will have the inherited form. You are even higher risk if you are from an Ashkenazi (Central and Eastern European) Jewish background (which is the background I am from). I found I had mine from having a genetic test. I became aware that breast cancer ran in my family when I received a visit from my cousin Charles (who is a man) who had experienced breast cancer himself and who carried the faulty gene. I feel he saved my life giving me the information so I could get myself checked out. I now know a lot of my family members have been affected by the same genetic fault as me. My Grandpa Manny on my mother's side of the family had passed the gene down the line to my mother and then to me. My Grandpa was the youngest of his 3 brothers and 3 sisters and various members down the line of his brothers and sisters carry the gene or have had breast cancer. I have only recently found out that my dad's mother's side of the family too have experienced a larger than normal amount of breast cancer. My dad's mother was one of nine children and I am aware of 5 members of the family who have had breast cancer but I am not aware of anyone who has yet been tested for the cancer gene.
Charity Support
I took the time to find out what support I would need and I list the main ones I used and how they have supported me.
I attended a “Living with Cancer” course at The Robert Ogden Centre and tried to help people in my group by being positive talking about living for today and not for tomorrow as tomorrow would take care of itself. At the end of the course two of the attendees told me I had inspired them with being so positive and that they wanted to try to think like me. It felt good being able to help people.
There was also a “Looking Good Feel Great” course which is available to all cancer patients which, by the end of it, I did feel absolutely wonderful. There I was taught how to wear make up to make the most of myself when I was bald and had lost all colour in my face and we were all given a goody bag to take home generously donated by many leading brands.
The Haven was a fabulous place to relax and ran many different sessions which I could choose from. The Haven specialise in helping people who have breast cancer through their difficult journeys and do fantastic work. I found the group visualisations and private hypnosis sessions worked best for me when I felt the most vulnerable. There I was “allowed” to let out all my emotions supported by others who truly understood what I was going through. I also attended a young womens' support group for women aged 45 and under who have had breast cancer and took part in an acupuncture trial for fatigue.
The Haven liked my positive attitude and published my story on their website -
http://www.thehaven.org.uk/how-we-can-help-you/what-people-say/what-our-visitors-say/suzette-muentz
http://www.thehaven.org.uk/how-we-can-help-you/what-people-say/what-our-visitors-say/suzette-muentz
Later on they asked me to prepare a speech at very short notice for their 2nd birthday party celebrations to address past and future visitors in the afternoon then their sponsors and prospective new sponsors in the evening. I wrote the speech in 2 hours and personally delivered it in front of everyone on 4 November 2010. I really enjoyed the challenge and used the technique I had practised previously which stopped me becoming nervous. It made me feel that the world was my oyster! I can achieve anything I choose to set my mind to do.
Breast Cancer Care run courses for cancer patients throughout the year. I attended a Young Womens' Forum which helps younger women with breast cancer which is a 2 night residential course run regularly throughout the year. I attended this in the middle of having Chemotherapy in Nottingham and it was wonderful to meet people like myself who had come through the other end and completed all their surgery. As well as medical issues the course dealt with emotional issues and I really enjoyed the whole weekend and gained a lot of information.
Here is my speech:-
"I have been coming to The Haven since I was first diagnosed with breast cancer back in March 2009 and it is the best decision I have made. I did not want to feel isolated with my worries at home and felt a strong need to be surrounded by people who understood what I was going through and who could help me with any physical symptoms I may experience from my medical treatment.
I first of all had a consultation and a personalised programme of treatments was set up to help me relax. The Haven have a range of complimentary treatments on offer and I experienced reflexology, massage, nutrition and EFT to name just a few. Once I had a treatment I felt so much more relaxed than when I had first arrived and the benefits were almost immediate.
A particular personal experience which I got huge benefit from was the EFT session. EFT stands for Emotional Freedom Technique and it allowed me to free up emotional energy which I had found difficult to do in front of family and friends. I found it a very powerful visualisation therapy which I needed during the time I was losing all my hair from chemotherapy when my emotional needs were at their highest.
My progress was reviewed regularly so the Haven could make sure they were meeting my needs which made me feel very cared for.
I went to the Introduction Day at the Haven which was a full day in which new visitors could attend and hear about everything the Haven offered, meet the therapists and ask questions on any aspect of the Haven programme of care.
The Haven also offer group treatments such as visualisations and practical group sessions such as cooking healthily. I experienced both of these and felt it was an added dimension to what I had already gone through in the one-to-one sessions because I was sharing these experiences with other ladies going through the same as myself and it had the added bonus of us being able to talk to one other.
There are a range of different ages of visitors who may experience breast cancer but there was a need for a younger group of women who wished for a support group. The Haven met that need by creating a new group solely for younger women. I attended this group and found it was very beneficial. The Haven organised for a personal therapist to direct the group and we met up every two weeks to chat about our lives and support one another.
I have found it so beneficial to have so much support and care from the Haven. Everybody is so friendly and can help with concerns about any aspects of the medical treatment undertaken. The Haven therapies compliment the medical treatments given and any advice needed is readily available. The Haven also supply a large amount of reading material and CDs and any visitor should be able to find answers to any questions they need answering.
The Haven fulfils an essential need for women undergoing the physical and emotional effects of breast cancer and I speak from personal experience to say it has helped me to stay calm, keep positive, relaxed, provide information, guidance and care on any aspect of my medical treatment.
I do not know how I would have been able to cope without its support and can only hope the Haven is here for many year to come so it can help lots more visitors like myself to get through all their treatment knowing they have the care and support from an organisation who truly can empathise in what they are going through."
I also attended a Family History Forum in London where I met others with inherited breast cancer like myself. Breast Cancer Care had arranged for geneticists to attend so we could ask questions about any difficult issues we had.
There is a lot of support for younger women who have breast cancer and is not just for the over 50s which is the most common age group.
The care and support from these charities have been amazing and I would press anybody who has cancer to take full advantage on what there is on offer as there is so much support out there. I am sure these charities would appreciate any donations from readers so they can keep going with their amazing work.
Accident in the Shower
Five days after my first Chemotherapy session I had an accident in the shower. I have naturally low blood pressure and did not realise that the Chemotherapy might make it even lower. I was taking a shower when suddenly I felt overwhelmed by the steam and the last thing I remember was sliding down the shower wall before I fainted. I was alone in the house as my husband was working and woke up in a pool of blood. I had banged my head on the corner of the bath as I had fallen - my nose was bleeding and my head and chin was cut. I managed to crawl out of the bathroom to a phone to call my husband who immediately rushed home and took me to A&E. A&E were fantastic in helping me and the nurse was very sympathetic to my circumstances. It took quite some time before my nose would stop bleeding but the care given to me by the NHS was second to none.
The following day I had a family celebration to go to and even though I felt and looked terrible I wanted to be there to support my Auntie in celebrating her 60th birthday. She started crying in her speech saying how much she appreciated that I had managed to be there for her.
Chemotherapy Fog and Fatigue
After that incident Andy insisted on being around when I took a shower and would make sure he came home from work every morning so he could be there with me. However, after a while I wanted my independence back and to shower alone. I noticed my head always felt fuzzy whilst showering and I never felt fully in control any more, as though I could collapse at any time. This feeling stayed with me during the whole 6 months of my Chemotherapy. I never felt 100% there, as if I was in a fog. I never realised it until the fog cleared after my Chemotherapy ended when I started to feel more normal and human again.
Andy made sure he had a meal on the table for me every night. Even after working 6 days he would cook, wash up, do the garden and always be cheerful around me. He would always listen if I needed to talk or give me a hug when he thought I needed it. My energy levels became very low and he was always there to do anything I needed and support me in whatever way he could. The love he gave me during those difficult times was second to none and I never allowed myself to use up emotional energy feeling sorry for myself but just to get on with it. As the drug got into my system my energy levels would go down very low in the first week and I would describe the feeling as like being trapped in a 90 year old's body. I had to walk at a snail's pace. The fatigue would continue with each cycle of Chemotherapy. Each cycle lasted 3 weeks and I had six cycles of Chemotherapy.
My family had found out about some honey which is called Life Mel. It was supposed to be good when you were having Chemotherapy as it kept your blood count up. I took it morning and night over the 6 months I was having my Chemotherapy and I did not have to miss any Chemotherapy sessions due to low blood count. I thought it was wonderful and would recommend it to others to try.
Complications and Hospital Admission
By cycle 3 I had developed complications with my veins in my right arm where they had administered the drug and the arm became painful especially when stretching. During the administration I could feel the Chemotherapy burn through my veins and each time it was put into me I just gritted my teeth with the worst pain ever. It felt as though my veins were going to explode and they felt as if they were literally burning – it was the hardest pain I had ever had to endure. The veins were very painful and felt like a stringing sensation when stretched. There was a point during the administration of the drugs that the nurse considered using a second cannula but I just couldn't face it and she carried on with the same cannula until it was completed and I felt as though I had been to hell and back. My arm where the drugs were being administered was icy cold.
That evening the pain intensified and I had to call the hospital at 3 a.m. to ask for advice what to do as I felt my veins were going to explode.
I couldn't have my Chemotherapy in my right arm after session 3 because of the pain and had to make the agonising decision to have the final 3 in my left arm which was my operation side which could slightly increase my risk of getting Lymphoedema. I now have permanent problems with my veins in my right arm and all the veins have collapsed and there was no way I could have experienced any more Chemotherapy into the right arm.
The 6th and final session caused me the most harm. I started to feel very ill and sick and then actually started being sick unlike my previous sessions. I felt different and much worse than the normal sessions I'd had in the past and had the runs as well. I knew something was very wrong but chose not to bother anyone about it. Eventually it died down and after thinking I had finally got over whatever it was the same thing happened 4 days later but this time was even worse and Andy called the hospital (even when I was protesting I was okay) who told him to get me in there within the hour. I could hardly walk by this stage, disorientated and continually being sick and was held up with Andy on one side of me and his mother on the other as we all walked slowly up the pathway to the hospital until eventually someone saw us and found a wheelchair for me.
I had to have my clothes taken away as they had all been soiled from my sickness and I threw my wig off (the Oncologist joked he had never had a wig thrown at him before). The Spire hospital had to transfer me by ambulance to the Bexley wing in case my symptoms got worse. I had nothing on apart from the hospital gown and just a towel over my head to keep my head warm.
I was kept in hospital for 5 days whilst they tried to work out what was wrong with me. I lost control of all my bowel movements and soiled my bed then started shaking in the middle of the night due to a high temperature. I could hardly control my movements. It was very frightening but the nurses there were excellent and reassuring. I could not have hoped for better care in the NHS and was treated with respect and felt really looked after. I was never made to feel anything was too much at any time. I had to have blood taken regularly which I found an ordeal due to my poor veins and I was having antibiotics administered into me via a cannula. The cannula at one point got blocked and my arm swelled to twice the size. In the end after doing blood culture tests they thought I had a Gastroenteritis type bug and Shingles. After I had been dismissed from the hospital the sickness came back two more times but the Oncologist reassured Andy it had nothing to do with the Chemotherapy so I just had to put up with it. It was a bit of a mystery and my immunity levels being low did not help matters and it took me a while to get over the Shingles.
Hair Loss
The Chemotherapy affected my hair badly and I first of all saw the quality of it being affected. I found this the most difficult . My hair meant a lot to me and it went through a stage of taking on a life of its own. By this I mean it started to fuse together like electric and entwine round itself like a coil. Once it did this it was very difficult to separate and as my hair was down my back I was forced to get it cut short. I could not bear the thought of just shaving it all off and had to endure watching all my hair slowly come out bit by bit. When I took my hair band out it was just all stuck together. I could see the thinness on my scalp.
It started with my body hair when I would see it first of all in my underwear and in the bed. When I brushed my hair chunks would come out in my hairbrush. My nose hair fell out too and I had a continual problem with a dripping nose – for some strange reason I have been left permanently with this side effect even after my nose hair grew back.
I noticed hair was all over my house. Where ever I went I left a trail of hair. When out with friends at the end of an evening when I stood up hair would just cascade down my back and land on the floor. It was a very upsetting experience.
Out of Body Experience
Finding the situation difficult and trying to be strong for other people this took up a lot of emotion and I lost track of who I was. I started to feel very low but unable to cry and felt I had a lump in my throat all the time from holding back all the tears. To other people I was just strong and brave, and nobody knew the emotional trauma that I felt inside as I kept it from everybody. I felt so upset and had reached rock bottom. I felt like I was losing my identity and that I wasn't a woman any more. I felt like half a person with my chopped up body and awful patchy hair. I took myself out for a walk and the feelings of loneliness intensified. I could not recognise myself and as I saw other couples holding hands in the park I felt a great loss and felt I didn't know who I was anymore. Still to my family and friends the smiley face went out to each person as I didn't want to upset anybody with my problems as I appreciated other people have problems of their own and I felt they wouldn't want to be dragged down by me.
I remember reading an article about embracing change at this time and started to think of my work and my life and whether I was happy and at this low point in my life identified that my current job had no meaning to me or satisfaction. As I saw it I just shuffled papers about and how did that help people. I had a feeling at this time that a proper job consisted of helping people and I started to dream of doing other things where I could feel good about myself as I had so much to give to others but felt trapped and couldn't see how I could change this situation.
At this time I was attending the Haven for help with all of my emotions. I couldn't identify what I was feeling so I went for a one-to-one session with a therapist who specialised in EFT and NLP. This stands for Emotional Freedom Technique which is a kind of emotional acupuncture which involve tapping on the points at the end of meridians (energy pathways identified in Chinese medicine). NLP stands for Neuro Linguistic Programming which is a mind-body therapy to help find calmness and re-balance your emotions whilst facing breast cancer and its treatments. At this particular point in my life I was feeling out of balance and unable to identify how I was feeling.
I was first of all allowed to relax by listening to the therapist's voice until I was at a point of deep relaxation. I was then taken on a mind journey which I could see in vivid colour. The images were real and life like and I could visualise what the therapist told me with great clarity.
I was first of all told to imagine seeing myself in my bedroom and I could see myself sitting on my bedroom stool by my dressing table. There I was combing my hair as it was all falling out. I started to feel a great sense of loss and my emotions welled up to the surface and I could finally cry as I saw myself sitting there. I was then told to come out of my body and see myself sat there as a third person, watching myself sat on the stool combing my hair – in other words there were two of me in the bedroom. One me was the observer and the other me was the experiencing me sadly combing my hair as it was falling out. I was asked to identify what the observer me thought the experiencing me was feeling. I finally could identify my feelings now and said “sadness” and “fear”. The observer me could take a good look at the experiencing me and it suddenly became so clear and I saw my sad face looking into the dressing table mirror. The “real” me in the therapy room was crying her eyes out and all the emotions were coming to the surface and I was just letting go.
Next I was told to imagine a third me flying above the two former mes in the room. The experiencer me and the observer me were then lower down and I could feel myself coming out of my body flying freely and I flew up to the top of my bedroom ceiling and looked down at my two other selves. The flying me who was on my bedroom ceiling at this time had to pass on a positive message via a beam of light and to identify what message I wanted to pass down. I said I wanted to pass down “love” and “hope”. I could see the experiencer me's lips turn up into a smile and a sudden calmness took over all my body and I was waking up from the session.
I felt so much better after this treatment and the emotional lump which was stuck in my throat finally left my body for good to never return.
Fatigue – Could Acupuncture Help?
Like most people who experience Chemotherapy the drugs unfortunately make the body lose its energy levels and I suffered badly from fatigue as I mentioned previously. Even after the Chemotherapy had been out of my system I still felt my energy levels had not returned to what they had been previously. I therefore decided to see if I could do anything about it. I was asked if I would like to take part in a scientific trial to see if acupuncture could help with energy and I decided I would like to take part.
This involved six sessions of acupuncture every week for 6 weeks to see how I got on and then after this I would be put into the non-acupuncture group or self-acupuncture group where I would have to give myself acupuncture at home.
I managed to give myself the acupuncture at home over four weeks.
I did feel it helped me with my energy levels during the trial period.
I managed to give myself the acupuncture at home over four weeks.
I did feel it helped me with my energy levels during the trial period.
New Hair – From Straight to Curly, then From Curly to Straight 1 Year Later!
Once the Chemotherapy ended my hair started to grow back. It was the most amazing sight. It was a shock at first as it grew back silver. The hair was very fine, like baby hair. Before my cancer I'd had long straight blonde hair. Another transformation was about to take place.
My hair grew back 3 shades darker and curly. I've never had curly hair before. Tight curls started to emerge and I was really pleased with what I saw. I've always wanted curly hair. It was very strange. I boycotted my wig on 30 April 2010 and had my hair styled and highlighted. Everyone who knew me before was amazed at my new look.
Hair starting to grow back after chemo
The curls starting at crown of head
I was so pleased to have curls. I had always wanted curly hair and my wish had temporarily come true! [Unfortunately my curls only lasted a year and the curls have now all disappeared].
Prophylactic Mastectomy and Double Breast Reconstruction
I then started the reconstruction process. I had an operation to fit an expander inside the mastectomy side of my chest and weekly visits to hospital to have the expander filled up with saline via an injection. As I have lost all sensation since my operation on my mastectomy side I cannot feel the needle going into my chest. As the weeks went by I started to feel like I had a hard ball inside my chest. After 5 injections and 360 mls of fluid in total I had my final injection.
My operation date for the reconstruction was 3 July 2010. I had my Lattisimus Dorsi muscle from each side of my back moved to create two new breasts as well as silicone implants for maximum fullness which will need replacing every 10 or so years. My healthy breast was taken away in the operation at the same time and I was stitched up on the left and right side of my body. Unfortunately I have now lost sensation on the other side of my chest so I am permanently numb in the whole of my chest area including part of my upper arm. During the healing process previously my body sent electric shock pains through me which would make me jump where the nerves had been cut. Fortunately, these have not been as bad this time round.
My operation date for the reconstruction was 3 July 2010. I had my Lattisimus Dorsi muscle from each side of my back moved to create two new breasts as well as silicone implants for maximum fullness which will need replacing every 10 or so years. My healthy breast was taken away in the operation at the same time and I was stitched up on the left and right side of my body. Unfortunately I have now lost sensation on the other side of my chest so I am permanently numb in the whole of my chest area including part of my upper arm. During the healing process previously my body sent electric shock pains through me which would make me jump where the nerves had been cut. Fortunately, these have not been as bad this time round.
I found the operation very hard going. The morphine made me feel nauseous and I felt a lot of pain. At one point I couldn't move or have any energy to speak as I felt so sick and ill. I wanted some water as my mouth was dry but found I didn't have any energy in which to lift up the jug to pour it for myself. I could fast track how it must feel when you are in an old age home and have no energy to do anything for yourself and are totally dependent on other people – it was a really sobering and frightening feeling.
Having my drains taken out in hospital was the most painful experience ever. They had been in me 7 days and the area was very sore anyway from the foreign body embedded into my sides. There was a head and tail and it went up into the muscles I'd had removed. Just touching the area made me jump with excruciating pain so you can imagine having to take out the head of the drain and pulling it through the hole must have felt, then the tail. Absolutely dreadful. I had no pain relief when this was being performed either and actually felt faint from pain. It caused me to hyperventilate as I got myself so worked up and I screamed out as it was pulled out from within me.
I took 56 painkillers a week and extra strong ones as and when necessary. I started to reduce them slowly weekly and soon felt over the worst. I had to go to hospital weekly to have the fluid drained where the muscles were moved from as there were 4 pints of fluid which was uncomfortable. I preferred having the fluid drained from me manually via a syringe. There was a time when I had a machine attached to me on both sides which tried to suck out the fluid and it got blocked. I found this experience unsettling. I slept for 7 weeks in an elastic bandage and wore this bandage during the day and night to allow my body to heal.
When I looked at my reconstruction after my operation I thought one breast was bigger than the other, the shapes were different and they were a little mis-aligned. My left breast has a scar horizontally across it and my right breast has a scar vertically down it from where the nipple would have been. I do not have any nipples - they both got taken away during surgery. However, in clothing you cannot see any difference in shape or size and it is nice to have a cleavage again. It will take about 8 months for the reconstruction to settle before I consider whether I need more surgery for a symmetrical look.
In August 2010 I received the results of the breast tissue which had been taken away to which the mammogram had shown a healthy breast one week before my surgery. Unfortunately they found early cancer, which I found very shocking considering the mammogram had been clear. This is very frightening for other women and proves to me that the mammogram is not sensitive enough to pick up early breast cancer. Luckily for me the cancer was in-situ but it was a shock nonetheless. At least on a positive note I have done everything I can to reduce my risk of a new breast cancer by 90%. I just have to hope that I do not have ovarian cancer.
I had a slight scare when I went for my check up with my plastic surgeon as there appeared to be a hardening in the right side of my breast at the bottom and felt to me like it was bone or a hard lump. My surgeon took two biopsies of it to send to Pathology and they confirmed it wasn't cancer. However, my surgeon thought it would be best removed so I had to be re-opened up along the line of my current scar. The lump moved around a bit and it is a kind of fat necrosis. My operation was on 26 November 2010.
Fashion Show – Queens Hotel, Leeds - 23 October 2010
Please read my story about my dream of becoming a fashion model as a young women and how a cancer charity has made my dream come true. See http://www.leedsth.nhs.uk/news/newsitem.php?newsID=397 and the NHS Staff Magazine Bulletin at page 19 http://www.leedsth.nhs.uk/documents/3/bulletin_1110_intranet.pdf. I attach a photograph below of me modelling my dusty pink trouser suit, lingerie and eveningwear.
Taking part in the above fashion show made me feel fantastic. I really enjoyed the buzz I got from doing it and hope to be able to do another one soon.
On The Bright Side
On the Bright Side is an autobiographical photography project celebrating inspirational women who are thriving following breast cancer with the primary aim of giving hope and inspiration to those in the early stages of diagnosis and treatment. The project will feature nude and semi nude glamorous, bold, beautiful, positive and celebratory photographs, highlighting a positive view of bodies often perceived to be damaged and ugly. The photographs will be accompanied by a story about each woman, her personal journey and relationship with breast cancer. If you want to know a little more about the project see http://www.youtube.com/watch?v=19yHpqqpKTE
See my personal journey at http://www.onthebrightside.org.uk/. This charity is creating a calendar in aid of Breast Cancer Haven and I have been selected to be one of the “calendar girls”. The calendar will be launched in October 2011 at a dinner dance event at Cedar Court Hotel, Huddersfield. Click on “Gallery” on the website and scroll to the bottom and you will see me in Gallery Eight. Here is a sample of one of the many photographs published:-
The idea is to show other women facing breast cancer that there is life afterwards and how far all the women have come in their personal journeys. There is light at the end of that tunnel of darkness - even though at the beginning of one's journey you cannot imagine ever getting to that end point and it feels like a huge mountain to climb. For me getting over my lifelong fear of surgery feels like a huge achievement to me and such a relief and I want to show other women that you too can get through your journeys and come out the other side and face your fears. It feels so liberating to have finally put that particular fear to rest and I feel it is fantastic that all money raised from the project will go to The Haven to help other women going through similar experiences. The Haven has been a wonderful support for me and there is always someone there to ask anything you need to know about any of your treatments in hospital, meet other visitors going through similar experiences as yourself and pampering to make you feel wonderful. It's a lovely feeling to know you have that support as long as you need it and it certainly stopped me from feeling isolated.
Fashion Show - 1 August 2011
The Haven have decided to have their own fashion show at Goldsbrough Hall in Knaresborough. I decided I would model lingerie again as it felt so wonderful when I performed last year and all the proceeds would go to The Haven to help another person through their programme of care.
Photos from this fashion show are below:-
My Hair
Fashion Show - 1 August 2011
The Haven have decided to have their own fashion show at Goldsbrough Hall in Knaresborough. I decided I would model lingerie again as it felt so wonderful when I performed last year and all the proceeds would go to The Haven to help another person through their programme of care.
Photos from this fashion show are below:-
Amazingly, as I said previously my hair has now gone from curly back to straight. Maybe the chemo is all out of my system now so it has corrected itself but I find it amazing that it has totally transformed itself.
The Miracle of Positive Thinking and Mind Control
As you can see I have been through a lot and have yet more challenges to face. However, practising being positive has helped me become a stronger and much better person. My philosophy has been that we all have a choice on what we choose to think. We are the creators of our thoughts. The way we think has a direct impact on what our bodies then feel. I had enough to deal with in getting over everything I had to face without using up emotional energy feeling sorry for myself. I needed to remain strong to fight the cancer and didn't choose to think non-beneficial thoughts which in turn stopped me feeling fear and any negative emotions and I could keep in a state of calm. I took a step back and practised living day by day and not thinking of the past or the future and every night before bed (when our thoughts start to cause havoc in our minds) I breathed slowly and deeply and thought about my breath and what reaction that was having on my body. Once I went to bed any useful thoughts I wrote down so they could be freed from my mind and any others I just thought of as fluffy clouds and visualised them blowing away with the thought wrapped up inside the cloud.
I now feel I can face anything that life will throw at me and that I am a much stronger person than I was before my cancer. My confidence has grown, I feel I am making the most of every day and I love life. I have a fantastic husband who has been my rock and really supported me. I have also had support from the rest of my family and we have become much closer and I have gained new friends.
I always spoke about my cancer right from the very beginning and this was the correct decision in my case. Talking helped others to understand what I was going through so they could ask whatever questions they wanted without fear of feeling they were walking on eggshells which was how I wanted it.
I have taken photographs of every stage of my treatment which I hope to share with others in the future to show the miracle of modern medicine and how having cancer does not have to mean there are no options.
Ultra Sound
In 2009 my Gynaecologist took an ultra sound of my ovaries which showed I had a cyst on one of them and thickening of my uterus. I had a new ultra sound in December 2010. Amazingly the cysts had gone and so had the thickening of my uterus. This was a good sign that all was well and my ovaries were working okay.
Bone Scan
I have had a bone scan so my bone density could be checked, the results of which were normal. Since my operation I am at risk of Osteoporosis as my body will have no Oestrogen in which to protect my bones. Reading about the after effect of going through an early menopause after my Prophylactic Oophorectomy made glum reading due to the risks of going through the menopause. I am doing everything I can to reduce my risk of cancer but having this preventative surgery will not protect me from Peritoneal cancer which is cancer of the inside wall of the abdomen. However, it will give me up to an 80% chance of not getting breast or ovarian cancer which is why I decided to have the surgery. My GP has told me to start doing weight bearing exercises and to make sure I get enough calcium in my diet so I have started to increase my intake of dairy products.
I have had a bone scan so my bone density could be checked, the results of which were normal. Since my operation I am at risk of Osteoporosis as my body will have no Oestrogen in which to protect my bones. Reading about the after effect of going through an early menopause after my Prophylactic Oophorectomy made glum reading due to the risks of going through the menopause. I am doing everything I can to reduce my risk of cancer but having this preventative surgery will not protect me from Peritoneal cancer which is cancer of the inside wall of the abdomen. However, it will give me up to an 80% chance of not getting breast or ovarian cancer which is why I decided to have the surgery. My GP has told me to start doing weight bearing exercises and to make sure I get enough calcium in my diet so I have started to increase my intake of dairy products.
Prophylactic Oophorectomy - Negative Symptoms
My next operation was on 1 February 2011 - my ovaries and fallopian tubes were removed which plunged me into a sudden medical menopause to reduce my 20% risk of ovarian cancer. I started getting night and day sweats and feeling emotional which would strike me suddenly. Since my operation I have burst into tears for no reason every day for a week and the smallest thing would set me off. Sudden emotional mood swings were apparent and I was crying one minute and laughing the next. The operation was performed by keyhole. I have a cut on my tummy button and two cuts left and right on my lower tummy. I started finding it very hard to keep my spirits up and went slightly down somewhat and felt in fear of my cancer returning because of my genetic fault.
Also my energy levels decreased quite significantly and I tired quickly. I understood from my GP this was due to the cumulative effect of 5 general anaesthetics. But the worst part were the hot flushes which were coming on every 2-3 hours and especially at night. It felt like someone had put the heating on full blast and the flushes would rise all the way up to the top of my head like a furnice. They would start from the middle of my torso and just rise up getting hotter and hotter - the strongest point being on the back of my neck. They were then accompanied by heart palpitations which are quite frightening which is the body's way of cooling the body down. As my body has been cut off from the Oestrogen rather suddenly I seemed to be experiencing quite severe symptoms on this front. They appeared to sap my already reduced energy levels and even going upstairs in my home made me feel tired. On top of this I had pain down the right side of my body where scarring is from my previous operation and it would throb and cause me discomfort. I also had pain when I sat for a period of time where my back muscle had been moved which felt like a twisting sensation. Because I was woken in the night by the flushes, by morning instead of feeling refreshed I feel tired.
It is apparently normal to suffer mood disturbances when this operation is performed. On a daily basis when I first had the operation I experienced emotional outbursts which I was unable to control, crying on friends and family who came to see me. These feelings just came on without warning leaving me mentally drained. Every day was a battle.
That was the beginning straight after the operation. You have to give yourself time. I do not feel as negative now. I think it is normal to experience a whole roller coaster of emotions. The Haven came to my rescue again to help me. I decided to have some acupuncture and I noticed it helped to relieve my hormonal symptoms initially but unfortunately they came back later on. I suppose everyone is different. For me the heart palpitations appear to be part and parcel of the flushes in that I can't have one without the other. My body's regulation of heat is all over the place, hot one minute and cold/shivery the next. I saw my GP who told me to think about trying a low dose beta blocker. She said it also lowered your blood pressure. I have low blood pressure anyway (hence the fall in the shower from the chemotherapy lowering my blood pressure) and do not want it lowering any further so I do not think I will try the tablets. It just means I will have to learn to live with the symptoms. The acupuncture also evens out any unevenness in the body - for example I used to wake up with one armpit perspiring quite badly. I thought that was most odd. Acupuncture fixed that problem for me at the time but once I had stopped having acupuncture this came back.
I have not had acupuncture for a while now. I was told caffeine, hot drinks, stress, spicy foods and red wine could be triggers but even though trying to avoid these they didn't stop the flushes happening for me altogether. I found my body being enclosed, ie wearing a polar neck or a quilt covering would bring the sweats on. You have to dress in layers so you can keep warm when you feel cold, ie a cardigan which can be taken off when the hot flush arrives - and I carry a manual fan with me at all times which I use regularly. It's unfortunate that the flushes wake me up and I always seem to feel excessively tired all the time, but I have had 6 operations since March 2009 and my body is still healing which maybe why I feel so fatigued. I am also on medication for 5 years, Tamoxifen, so whether that causes tiredness as well I do not know.
Another symptom I have had since my chemotherapy is my dripping nose. Before my treatment I hardly ever had to blow my nose but then it became like a running tap. This is a very annoying side effect.
My final operation will be my nipple reconstruction which has been scheduled for 22 August 2011. They are taking skin from my thigh to create the nipples.
Nipple Operation
I have now had my 6th and final operation to restore my nipples. This was created via a skin graph. Skin was take from my groin area, stitched up along the groin crease then the skin used to create nipples which were stitched and stapled on. The teat was made from the same skin. My nipples were put into protective sponges with a hole in the middle held on with steri strips to stop them from being knocked. When I first saw my nipples the teats were very long and gave me a bit of a shock. When I had the staples removed the nurse told me everyone said that and that they would shrink back to a more normal size. I was told to rub E45 cream into them to help with the healing process. They would take 3 months to heal.
During the first week I was told not to wet my scars to help them to heal. After the first week I could shower normally but I wore the sponges to protect them for another week. On one of the days I showered normally without the sponges and unfortunately my right nipple started to bleed so I had to re-dress the nipple and make sure I kept the sponges on. I slept with them on two with my support elasticated bra. The nurse suggested I could buy nipple protector pads which expectant mothers use. I did not like these and found the sponges much better.
The nipples will eventually turn white in colour and at that point I will see my plastic surgeon again. I could then get them medically tattooed so they could be a more natural colour.
Challenges
Also my energy levels decreased quite significantly and I tired quickly. I understood from my GP this was due to the cumulative effect of 5 general anaesthetics. But the worst part were the hot flushes which were coming on every 2-3 hours and especially at night. It felt like someone had put the heating on full blast and the flushes would rise all the way up to the top of my head like a furnice. They would start from the middle of my torso and just rise up getting hotter and hotter - the strongest point being on the back of my neck. They were then accompanied by heart palpitations which are quite frightening which is the body's way of cooling the body down. As my body has been cut off from the Oestrogen rather suddenly I seemed to be experiencing quite severe symptoms on this front. They appeared to sap my already reduced energy levels and even going upstairs in my home made me feel tired. On top of this I had pain down the right side of my body where scarring is from my previous operation and it would throb and cause me discomfort. I also had pain when I sat for a period of time where my back muscle had been moved which felt like a twisting sensation. Because I was woken in the night by the flushes, by morning instead of feeling refreshed I feel tired.
It is apparently normal to suffer mood disturbances when this operation is performed. On a daily basis when I first had the operation I experienced emotional outbursts which I was unable to control, crying on friends and family who came to see me. These feelings just came on without warning leaving me mentally drained. Every day was a battle.
That was the beginning straight after the operation. You have to give yourself time. I do not feel as negative now. I think it is normal to experience a whole roller coaster of emotions. The Haven came to my rescue again to help me. I decided to have some acupuncture and I noticed it helped to relieve my hormonal symptoms initially but unfortunately they came back later on. I suppose everyone is different. For me the heart palpitations appear to be part and parcel of the flushes in that I can't have one without the other. My body's regulation of heat is all over the place, hot one minute and cold/shivery the next. I saw my GP who told me to think about trying a low dose beta blocker. She said it also lowered your blood pressure. I have low blood pressure anyway (hence the fall in the shower from the chemotherapy lowering my blood pressure) and do not want it lowering any further so I do not think I will try the tablets. It just means I will have to learn to live with the symptoms. The acupuncture also evens out any unevenness in the body - for example I used to wake up with one armpit perspiring quite badly. I thought that was most odd. Acupuncture fixed that problem for me at the time but once I had stopped having acupuncture this came back.
I have not had acupuncture for a while now. I was told caffeine, hot drinks, stress, spicy foods and red wine could be triggers but even though trying to avoid these they didn't stop the flushes happening for me altogether. I found my body being enclosed, ie wearing a polar neck or a quilt covering would bring the sweats on. You have to dress in layers so you can keep warm when you feel cold, ie a cardigan which can be taken off when the hot flush arrives - and I carry a manual fan with me at all times which I use regularly. It's unfortunate that the flushes wake me up and I always seem to feel excessively tired all the time, but I have had 6 operations since March 2009 and my body is still healing which maybe why I feel so fatigued. I am also on medication for 5 years, Tamoxifen, so whether that causes tiredness as well I do not know.
Another symptom I have had since my chemotherapy is my dripping nose. Before my treatment I hardly ever had to blow my nose but then it became like a running tap. This is a very annoying side effect.
My final operation will be my nipple reconstruction which has been scheduled for 22 August 2011. They are taking skin from my thigh to create the nipples.
Nipple Operation
I have now had my 6th and final operation to restore my nipples. This was created via a skin graph. Skin was take from my groin area, stitched up along the groin crease then the skin used to create nipples which were stitched and stapled on. The teat was made from the same skin. My nipples were put into protective sponges with a hole in the middle held on with steri strips to stop them from being knocked. When I first saw my nipples the teats were very long and gave me a bit of a shock. When I had the staples removed the nurse told me everyone said that and that they would shrink back to a more normal size. I was told to rub E45 cream into them to help with the healing process. They would take 3 months to heal.
During the first week I was told not to wet my scars to help them to heal. After the first week I could shower normally but I wore the sponges to protect them for another week. On one of the days I showered normally without the sponges and unfortunately my right nipple started to bleed so I had to re-dress the nipple and make sure I kept the sponges on. I slept with them on two with my support elasticated bra. The nurse suggested I could buy nipple protector pads which expectant mothers use. I did not like these and found the sponges much better.
The nipples will eventually turn white in colour and at that point I will see my plastic surgeon again. I could then get them medically tattooed so they could be a more natural colour.
Challenges
I really feel having cancer has changed me for the better. Each medical procedure was a challenge for me and I feel good about myself that I have faced all my fears head on. Doing so makes the fear go away – a fear is like a shadow we all carry round with us, dragging us down – but we all have it within ourselves to stop that shadow gripping us and following us round life. We all just need a little encouragement.
Even though it may have been the worst thing that could have happened to me, on a positive note it also has tested my inner strength and allowed me to prove to myself that I am capable of being so strong. I think my strength has surprised a lot of people.
My future is very uncertain and I constantly live in fear with the thought of having a cancer gene, but at least I have a wonderful husband to keep me going onwards and upwards. He has really supported me and every day he tells me that he loves me. Something as big as cancer can either make or break a relationship and everyone handles things differently but I feel so fortunate that luckily for me our feelings for each other have grown stronger and I tribute how I have coped with one challenge after another to my husband.
