My story begins when I was thirteen, the start of my periods and my journey with endometriosis. In the 1970’s treatment for period problems tended to revolve around the pill and painkillers. Danazol was a particularly nasty pill I was given.

Miraculously my endometriosis went into hiding when I managed to fall pregnant three times. My children were born via Caesarean section.I was able to breastfeed and for a short time I was pain free.

I did suffer a cancer scare when a Consultant felt that my horrendous pain was something sinister and with two children under the age of five I faced my mortality.

My tubes were tied following the birth of my youngest child as my scar tissue was described as “concrete”. At the age of 30 my endometriosis had now spread around my ovaries and bowels.

Endometriosis was finally diagnosed after a laparoscopy showed all the damage, some adhesions were bisected but my condition deteriorated rapidly and I underwent a hysterectomy

This operation solved nothing, one ovary was embedded in my bladder the other in my bowel. I had extensive abdominal adhesions and suffered a low key peritonitis every time I ovulated.I was given morphine injections, suffered fainting and extensive internal bleeding. I have no memory of family holidays or celebrations, I was constantly on painkillers. I tried to work but it was impossible as I wasn’t reliable given my condition.

I had an oopherectomy, I was extremely ill as there were complications. In my middle thirties I was put on Estrogen only HRT.

The pain persisted, I had injections to remove the Estrogen but it still persisted.

The strain from all the abdominal surgery had caused problems with my spine adding to the severe pain I already had and meant I was on a huge arsenal of painkillers. I underwent major surgery to re route a nerve, take bone from my hip and nuts and bolts put in my spine to stabilise everything.

At the age of 54 I was finally pain free. Then Osteoarthritis reared its ugly head, I now have nerve damage, but throughout my life I have remained positive. I have been a volunteer all my married life and Chair various community groups. All this surgery has also resulted in an anal fissure and diverticular disease. I have been hospitalised on four occasions with these problems.

My breast cancer came out of the blue via a mammogram at the age of 65. I have taken HRT for 30 years but old age cancer appears to be the diagnostic term used for me. When I attended the first appointment at the RVI it was explained to me that I needed an MRI and biopsies taken. The Radiologist who took the biopsies was amazing and realised that I had some medical knowledge, so she was very honest with what she was seeing on the screen. It was almost certainly a tumour.

I kept this information from my family and waited for the results to come back. The first surgeon I saw explained to my husband and I that it was a tumour on the chest wall. He talked about the different types of surgery, radiotherapy, chemotherapy and reconstruction. The MRI would give him a better idea what was required. If the size was above 2cm then a sample would be sent to America to see whether my cancer was likely to return and whether I required chemotherapy and hormone therapy along with radiotherapy. An appointment to see him again to arrange my treatment options was arranged and I saw a breast nurse. She asked if I understood the enormity of what I had been told as I seemed very calm. I explained that I had been through other procedures and getting upset would help no one, particularly my family.

I attended the surgeon’s appointment to discuss my options, I had read up on breast cancer and had two close family members and three close friends who had all been through breast cancer with differing experiences. I had made my mind up to have the whole breast removed following discussions with my husband and family.

This time the attitude of the surgeon was far removed from my first meeting. A student and a breast nurse were present when my husband and I attended the consultation. He ignored my husband, a retired veterinary surgeon, who had questions to ask. He laughed at my request for a mastectomy and said if I went down that route he would not give me a reconstruction, he said I might find someone private to do it but he definitely wouldn’t consider it. My only option was a lumpectomy, again no reconstruction would be offered. He said the lump was around 3cm so my breast size would be shrunken, become wizened and brown damaged by 2 weeks of radiotherapy. I would require hormone therapy which may further damage my joints. He may perform a mastectomy if the lymph nodes were cancerous. He arranged a date for the surgery and realising I was shocked by his abrupt manner, conceded I may want to think about what he had said. He then got up and left, no handshake, no goodbye. The student was clearly shocked and came over and wished me luck. The nurse told me she would ring me to arrange the pre op assessment.

I was in total shock and even with my walking stick I outran my husband to the car park. He asked me if I was alright as he felt like he’d just been mugged. I told him that no one was going to operate on me and shockingly told him that the medical profession could fuck off! For the first time I cried.

I was positive the surgeon was not coming anywhere near me. I rang friends for advice, they told me to ring Cancer UK, it was my body and my decision.

I was terrified of complaining but checked the NICE website and the RVI protocol on breast cancer treatment. It was obvious that I had been misinformed, lied to. Cancer UK were amazing they told me to get a second opinion. I arranged a private consultation with another breast surgeon, incidentally one who worked with the first surgeon. He told me I could have just asked to see him through the NHS instead of privately. He would perform the surgery and if I wanted reconstruction that would be available. He was kind and considerate and my surgery was organised for one day later than the previous surgeon had arranged.

The breast nurse rang eventually, to arrange the surgery with tjhe first surgeon. I told her I was now under Mr Critchley. I asked why she hadn’t intervened when I was being given such an awful consultation. She said it was because I didn’t make a big enough fuss! Mr Critchley sent me a letter of apology for his colleague’s behaviour. The breast nurse now hides in cupboards when I attend the RVI breast clinic for my appointments. I still have no breast nurse. I had another scare last August so I had an emergency appointment, I asked not to be

seen by the first surgeon. But, you guessed, he was on the other side of the door, I thought I was going to faint or have a panic attack. Thank fully my husband took over and just said that this was not happening. we were then taken to see another colleague.

My treatment on the breast ward was incredible and I wrote to the CEO to thank the hospital and the ward for my treatment.

I was thrown into the most awful abrupt menopause as my HRT was removed, although thankfully I didn’t need hormone therapy as my lymph nodes were clear. I had a score of 7.

My biggest problem now is sleep deprivation. GP’s don’t seem to understand how debilitating this is. They offer sleeping tablets but only short term then you are on your own.

I now volunteer for Coping With Cancer and Northern Cancer Voices with the hope that I can support other cancer sufferers and make sure that they have a better journey than mine. I see a constant stream of cancer sufferers who are consistently let down by the NHS. A breast cancer survivor, who has for the last year, complained to her GP about back pain and was then treated for sciatica has just been told she has a tumour on her spine. Surely common sense should prevail that a cancer diagnosis on your medical notes s