"My breast cancer journey of compassion and respect"

About: Leicester Royal Infirmary / Plastic surgery Pilgrim Hospital / Breast surgery

(as the patient),

I woke up on a Saturday morning in July 2012 with severe pain in my right breast. I went to the doctors the following Tuesday and an appointment was made for me in two weeks at the fast track clinic at Boston Breast Unit. At the appointment, a mammogram was done (it was explained to me how as I was only 47 at the time and under the age for screening). This was followed by an ultrasound scan (which I had never had done before either). An egg shape showed up on the screen and Mr Abdel-Rahman, the Breast Surgeon, was fetched into the room. He checked my scan and told me that a biopsy was needed to be done. He thoroughly explained to me how in an easy to understand way. One week later I was back at the Breast Unit for my results – I had definitely got stage 3, grade 3 breast cancer. I thought to myself ‘why me, what have I done to deserve with happening? ’ So began the other appointments for me to have – a measuring device fitted into my right breast to keep track on the size of the tumour, a CT scan, a Bone Density scan, a chat with the Chemotherapy staff and routine blood tests.

At the beginning of September, I had my first session of FEC chemotherapy, to try to shrink the tumour, which was not as bad as you may think. Everything was thoroughly explained to me. The staff are very friendly and understanding of the situation you are in. After having my second session of chemotherapy, I was back at the Breast Unit for an ultrasound scan to check on the effect the chemotherapy was having on the tumour. Once more Mr Abdel-Rahman was fetched in – I had got an infection and had to be put on antibiotics for 10 days to clear it. Also the tumour was not shrinking. By now I was totally bald so started wearing my wool hat. I was having all the side effects from the chemotherapy such as loss of appetite, strange marks in my nails, very sleepy and my legs went to jelly for 10 days each time after the treatment. My chemotherapy was changed from FEC to Docetaxel as it is a stronger drug. I had my first session of this. The following week I was back at the Breast Unit for my follow up appointment after the antibiotics. As I was unwell and unable to walk any distance, I was taken to the Breast Unit in a wheelchair. Mr Abdel-Rahman checked me over and discovered that the infection and abscess had got worse. He tried to drain the abscess but could only get blood. He decided to have me admitted to Ward M2 immediately. I was on 7 IV antibiotic drips for several days and oral antibiotics for a further week.

When I went back for my check up, he told me that the infection had cleared up and I could resume my chemotherapy. I had my second dose of Docetaxel. The following Wednesday I was so poorly when the district nurse came, she phoned the Breast Unit and spoke to Mr Abdel-Rahman. I was taken to Pilgrim A and E by ambulance. He checked me over and guess what; yes I had got another infection in my right breast. I was admitted to Ward M2, back on the antibiotic drips and then oral antibiotics when I went home. I knew by this time that with Mr Abdel-Rahman looking after me I would come out the other side of the cancer treatment with an excellent result as he looks after the patients so well no matter what age they are (I was talking to other patients he had on the ward) or the situation they are in. He is a true professional putting the patient as ease with his polite, caring, friendly manner and sense of humour. He is very understanding of the situation for being a male dealing with delicate female problems. He is the best person you could wish for to be treating you. He said to me “It’s a hard and difficult enough situation for someone to cope with. I want to make it as easy as possible for them and their family as I can. ”

When I went for my follow up the next week, he had some good news for me – no more chemo for you, I’ve sorted a date for your operation but it is to be done at Leicester Royal. I was shocked at this but he explained the situation to me about the plastic surgery side of things being done there. He thoroughly explained the full operation to me and did the consent form. I had to have an immediate reconstruction done as no skin could be kept to put me back together with after having the mastectomy done. I went to see Matt Smith, the plastic surgeon, to discuss the options for me. I decided to have the LD Flap done after he thoroughly explained it to me. After going to Leicester Royal for my pre-op assessment, I had serious reservations about having the operation done there. I went to see Mr Abdel-Rahman to voice my concerns. He reassured me that he would be there to do the operation for me. He also reminded me what would happen if the operation did not go ahead.

The day of the operation (Mid December 2012) had arrived but I still wasn’t sure if I wanted to go ahead or not. I arrived at LRI and met Mr Abdel-Rahman at the Theatre Arrivals Area. Everything was sorted with both my surgeons and the time came for me to go to Theatre 10. I walked along the corridor having all sorts of emotions, took 2 steps into the operating theatre and froze on the spot. I couldn’t go any further in the room – there was the operating table in front of me. “This isn’t Casualty on the television, this is for real” I thought to myself. Fortunately Mr Abdel-Rahman was there waiting for me. He came across to me, spoke to me to reassure me (“you’re a tough little cookie Sarah, you’ve come this far, not much further for you to go now, let’s get your life back on track” he said). He put his hand under my elbow to guide me over to the operating table. If it wasn’t for him I would not have had the operation. The operation (mastectomy, lymph node removal and the LD Flap reconstruction) was then done by Mr Abdel-Rahman and Mr Matt Smith. After time in recovery, I was transferred to the Kinmonth Unit of Leicester Royal. In the early hours of one day in mid December, I was transferred back to Pilgrim – I could now have visitors and the staff on Ward M2 are very good. (Three stays in three months on there and well looked after each time) Mr Abdel-Rahman was visiting me every day to keep an eye on me. I could not have been better looked after by him if I was royalty. He has an excellent sense of humour and has laughed me through my breast cancer treatment. 5 days leater he gave me some good news – I could go home that day.

I had a reasonable, lazy Christmas but a rough new year as I had pain in my back. In early January 2013, I was at the Breast Unit and had 275 ml of fluid drained off my back from near the scar site. This is a routine thing to happen after having the LD Flap done. A couple of days later, the fluid was filling in again. Once again I was at the Breast Unit and saw Mr Abdel-Rahman. He told me I couldn’t be drained that day (it can only be done once a week) but he would do it the following Friday for me. Another 90 ml fluid was drained off. He told me to see how the fluid levels behave and if all goes well, I’ll see you in one year! Mid-January, I was put on Tamoxifen by my oncology consultant for five years.

At the end of January, I went to Lincoln County for my radiotherapy assessment. I started my radiotherapy treatment in mid February. On day 3, I had a rash on my back (allergic reaction they think to the wipes used to clean the board you lay on). Day 5, I was having severe pains in my right side (it felt like I had been kicked in the side and the pain staying all day). Day 9, I was put on morphine to control the pain. Day 13, I had got the marks on my back once more. My last day of radiotherapy was in early March. The treatment is not painful to have done and does not take much time.

I was having “Z” spasm attacks – pain shooting across my back ribs, up my right side and behind my new right breast which tightened my right side and made breathing difficult. This could happen up to five times a day. I went to see Mr Abdel-Rahman and had an attack while there. Had an appointment at physiotherapy and was given some new exercises to see if they would help with getting better movement back in my shoulder.

In early June, I saw Matt Smith at Pilgrim to discuss the option of more surgery to help balance me up shape wise with my new breast by having lipo modelling done. It had to be done at Leicester Royal again though. In early October, I saw Matt Smith at Pilgrim and sorted out the details with him for having the operation in December. Mid October I developed a red rash on my right side where I had the operation done going from my spine, under my arm and above my new right breast. This was diagnosed as shingles, which lasted for 6 weeks, due to having a reduced immune system. In early December I was at Leicester Royal for my pre-op assessment. In mid December, I was at Leicester Royal for my lipo modelling operation to be done. During the last week of January 2014 I began to feel very tired and during the first week of February another rash had begun to appear – guess what the shingles are back again. On tablets and it lasted for 4 weeks. Mid-March the shingles are back again.

On 20 February 2014, it was the ULHT Staff Awards Evening at Belton Woods Hotel near Grantham. Unknown to Mr Abdel-Rahman, in early December 2013 I had nominated him for the Compassion and Respect Towards Others Award. In early February I was informed that he had won the Award. I was asked to present the award to him on the evening. He told me afterwards that it was very unexpected. I had nominated him for the excellent way he had treated me throughout my breast cancer treatment. It was a way I could thank him for doing an excellent job.

It is a difficult job that the staff in the Breast Unit has to do when dealing with cancer patients and they all do an excellent job no matter what the situation. Unfortunately, I seem to have had a roller coaster of a ride with ups and downs along the way but I know that the staff – particularly Mr Abdel-Rahman and Dr Elham Abdelaziz – are there if I ever need any help or advice. One thing I can certainly say is that no one in the Pilgrim catchment area need never fear having breast cancer or any other breast problems if they are treated at the Breast Unit as well as I have been by all the staff be it a surgeon, doctor, nurse or secretary. They will certainly be treated with compassion and respect.

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Response from Communications Officer, University Hospitals of Leicester NHS Trust

Dear Sandy,

Thank you very much for sharing your story with us so transparently and honestly. It is great to get an insight into a patient's personal journey across a varitety of services and hospitals, who by the sounds of it, have offered a thorough and joined up service for you.

We have passed this onto those you have mentioned above such as Matt Smith, the TAA and Kinmouth ward as well as the services they work in so everyone can share your story.

Wishing you the best of health and all the best for the future,

Kind regards

Communications Team

Leicester's Hospitals

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Response from United Lincolnshire Hospitals NHS Trust

Thank you for your kind words about Boston Breast Unit.

Your story about your Breast cancer journey and these lovely words about trust, compassion and reassurance, they are our aim when we treat all our patients.

I was involved in your treatment but I am just a member of a team who I am sure consider these words as “stars on our chest” and encourage us to work harder to keep this level of trust. Of course, there will be more room for improvement because we have not reached our target yet. Thank you again on behalf of the whole Breast Team in Boston.

Best Regards

Mr Alaa Abdel-Rahman

Breast Surgeon

Pilgrim Hospital -Breast Unit

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