Roma

The full story "14th September 2015, my 49th birthday. It was also the day that cancer came into my life. Up until that point, I knew almost nothing about cancer, I was aware of people who had cancer, but I won’t say I was ever directly affected by it.
As far as I am concerned I had been fortunate with my own health. I was born with Achrondraplasia (dwarfism) but have never experienced any of the health issues that normally associated with dwarfism. I had relatives who died as a result of cancer, but my personal ignorance prevented me from thinking it could ever happen to me. In fact, I actually thought that breast cancer was inherited, and in my family, there was no history of breast cancer so it never crossed my mind that I could possible ever get it, how wrong was I.
10 days prior to my 49th birthday I attended a 10-day Vipassana silent meditation retreat. It was all part of my plan to go out and enjoy my last year of being in my 40’s, with the celebrations ending on my 50th birthday when I planned to wake up in the Amazon Rainforest. As I was attending a silent meditation retreat, I was not contactable hence my first day of proper outside contact was on my 49th birthday when I returned to work. I was looking forward to going back to work as I knew I’d be teased by people because I actually managed to not speak for 10 whole days! I am known for enjoying a good banter with friends and work colleagues, and I knew on this occasion who would be the ring leader for the teasing - Eddie. Eddie and I were great friends, we had worked together for a few years. However, on my return to work I was informed that Eddie had been admitted to hospital. This news shocked me tremendously. Eddie had been suffering from backache for a number of months. The doctor kept providing him with pain killers but there never seemed to be any improvement. During my absence his backache got worse and he was admitted to hospital. His backache was found to be caused by him having cancer of the spine. I spent the next couple of weeks visiting Eddie in hospital. He was such a positive, up-beat person who never missed an opportunity to tease me! Sadly, during his stay in hospital, Eddie caught pneumonia and he died on 10th November 2015.
I was very affected by Eddie’s death and wanted to do something in his honour, something associated with cancer awareness but I didn’t know exactly what. I realised that I needed to start with myself. So, in December 2015, during a self-breast examination I noticed a lump on my right breast, it was pretty big. It couldn’t have just appeared. Surely I must have noticed it before? Did I ignore it because I did not imagine that I was at risk? Fortunately I decided to have it checked out just in case it was something serious.
I made an appointment to see my GP but the earliest I could get the appointment was 19th January 2016. I initially told no one about my appointment, as part of me thought I was being paranoid due to what happened to Eddie. However, closer to my appointment time I mentioned it to my eldest brother, Rana who is a doctor. He, not surprisingly was very supportive and when I went to see my GP, she gave me a thorough examination and told me that I needed to see a breast cancer specialist as soon as possible.
I was lucky enough to get an appointment to see Mr Lester Barr the following day. At this point I only mentioned my situation to 1 or 2 more people, I still wanted to keep the news quiet as I have elderly parents, my dad was, 87 at the time and my mum, 78 as I didn’t want them to worry unnecessarily. The following day I went alone to see Mr. Barr and Kate Tomkinson, who would be my breast nurse. After a mammogram, Mr. Barr informed me that I also needed to have an ultrasound and biopsy. Though I was asked to come back the next day for the biopsy result, I got the strong feeling that it wasn’t going to be good news. The next day it was confirmed that I had breast cancer which had spread to my lymph nodes and I consequently needed a CT scan to see if it had spread anywhere else in my body.
People ask me how I felt hearing this news. At that moment in time, for me, my cancer was a new challenge something I had to deal with it. I didn’t feel like crying and I didn’t feel like asking ‘why me?’. My biggest concern was how I do I tell my parents?
The following day I went to see my parents, who live in Warrington. My brother, Rana came along for support. My dad is a retired doctor but I realise when the patient is your own flesh and blood, the situation is very different. Telling them was very hard, but I knew I was strong enough to face whatever the treatment threw at me. Shortly after telling my parents I also had to tell my two other brothers and their families. I was planning to tell friends only once I knew what my treatment plan was. It had been a very emotional day for me but I wanted some ‘me time’ before I began to tell people.
When the news was out there, the love and support I began to receive was amazing, it completely shocked me in a very positive way. The response made me decide to use my Facebook page to openly talk about my progress, and also get people to ask me questions. I wanted to be as light-hearted as possible and I knew people’s support would help me during the difficult times during my treatment but I also knew my friends would understand how I felt during the most difficult moments – and I wasn’t wrong. I remember being asked a few times on whether I had a ‘bucket list’ and I didn’t but as I said I wanted to have fun so I decided my bucket list would contain only one item and that was to meet David Beckham!! Everyone who knows me including all hospital staff and complete strangers knows I want to meet David Beckham. What began as a joke has now become one of my life missions!
My initial treatment plan was to have 6 rounds of chemo, every 3 weeks followed by a mastectomy with immediate reconstruction. My chemo would take place at The Christie under Dr. Anne Armstrong. As it was likely that I would lose my hair, I did try using a cold cap but during the first 2 sessions my hair began to fall out hence on the 3rd session I decided to do away with it and shave my hair. Chemo affected me very badly – vomiting, tiredness, stomach issues, unable to eat as my tongue/mouth was badly affected. And with each chemo the side-affects got worse. But as earlier mentioned, initially the lump on my breast was big and could easily be felt but with each chemo session I could feel the lump had shrunk, this is even after the first session so I knew the chemo was doing its job.
After the 6th session I had an MRI scan. The result was fabulous – no sign of cancer! The dilemma was what to do next: was it necessary to have a mastectomy? or was a lumpectomy enough? After a discussion between Mr Barr, my brother Rana and myself it was decided I’d have a lumpectomy and on 16th July 2016 I had my lumpectomy. A week later I saw Mr. Barr for the results of my lumpectomy. Unfortunately, deeper tests showed there were still tiny traces of cancer. The only option now was for me to have a mastectomy without immediate reconstruction as I would now need radiotherapy hence reconstruction would need to take place at a later date. This news broke me. I was so scared on how I’d cope waking up without my right breast. To me my breasts were one sign of being a woman. I pleaded with Mr. Barr to just go ahead with radio therapy and not to do a mastectomy but he insisted that it was necessary to my recovery. The lump in my breast was actually painless, so mentally I couldn’t understand why the whole breast needed to be removed. If my breast had been painful, I think it may have been easier for me to accept a mastectomy. Luckily, by the time I had to have my mastectomy on 27th July I was in a more positive mind set. I am now definitely glad I had the operation.
After a 2 month gap, I had 15 sessions of radiotherapy at The Christie under the guidance of Dr. Vivek Misra. Luckily for me these sessions were painless and I also had no side effects.
In April 2018, I had a Diep operation, reconstruction surgery. This was very successful and amazingly a painless operation for me. I apparently made medical history for being the first woman with Achrondraplasia to have had the Diep operation.
Looking back, I know that Eddie’s cancer was the reason that I became more aware of my own body and I am glad I did. I vowed that I would continue my mission to raise awareness about cancer, in particular breast cancer.
One of the biggest positives that came out of my breast cancer experience was the love and support I received from people especially my family. However, one of the things I have learned was how certain communities still do not say the word ‘cancer’ or want to talk about it. There is an attitude, and I have seen it a lot in my life, where if you don’t talk about it then it doesn’t exist - well I have news, it does exist. Cancer does not discriminate, it affects the young, the old, the rich, the poor, the famous, the everyday person, the Christian, the Muslim, the Hindu, the Jew, the able-bodied, the disabled, a black person, a white person, a brown person, a woman, a man, the good, the bad, the tall, the short and everything in between.
I am very lucky that my breast cancer was caught in time. It definitely could have been caught earlier but that is totally down to my ignorance. If it was caught any later then the likely hood would be the cancer would have spread and I may not be writing this article. Please don’t be ignorant like I was, and think it won’t happen to you. And know that there is a lot of love and support out there, whoever you are."
Love
Roma Xhere.