Personal Stories

Gemma
26th Sep 2023

Gemma Jones - PCN Network Coordinator - Breast Cancer

In July 2008, I was diagnosed with breast cancer. I was 23 years old, I had been married for 3 years and I had a 1 year old daughter.

I found a small lump in my left breast.

For a couple of months I tried to ignore it, I was young and my body was changing having given birth to my first child six months before. Despite trying to ignore it, I found myself becoming obsessed with the lump inside me, I would check it every day in the hope that it had gone. After 2 months the lump was still there, and I knew I had to be seen by a GP.

I saw my GP and I was referred to see a Breast Surgeon under a ‘Two Week Rule’.

My husband accompanied me to the appointment, I remember sitting in the waiting room feeling incredibly anxious.

During the consultation I was asked for my family history and examined by the consultant. I underwent an ultrasound and a biopsy was taken of the lump.

When I returned to see the Consultant, I was told that the ultrasound report was normal but the biopsy had showed atypical cells and needed further investigation to determine the exact nature of the problem.

To enable the hospital to diagnose this abnormality I had to undergo a mammogram, and a stereotactic biopsy.

Despite the final biopsies showing no evidence of malignancy, it was decided by the specialists that the lump should be removed for full examination.

I was booked in for surgery the next week.

I returned to see my Consultant following surgery and on 24th July 2008 I was diagnosed with Ductal Carcinoma in Situ (DCIS). I went on to have two further operations to try and achieve sufficient cleared margins around the affected area, unfortunately these attempts were unsuccessful.

It was decided that I had to have a mastectomy.

By this stage I had attended so many hospital appointments that I felt real life had been put on hold. I had to rely heavily on family to support me in caring for my one year old daughter, and this gave me the strength to focus on what I was about to undergo.

On the 16th September 2008, I was admitted to East Surrey Hospital for a mastectomy and reconstruction. Following my operation, I spent 2 days in the High Dependency Unit and received multiple blood transfusions. I was moved to a general ward for a further 5 days before I was discharged home.

I remained off of work for 6 months and due to the method of reconstructive surgery, I required intensive physiotherapy to rebuild my strength.

The histopathology showed High Grade Ductal Carcinoma in Situ (DCIS). Fortunately the disease was not found to be invasive and I did not require any further treatment.

Due to my young age and having no family history I am screened annually to check for further recurrence.

I feel reassured by being monitored annually, but this is always a permanent reminder than one day I could be starting this journey from the beginning again.

Being diagnosed with breast cancer is something that has changed my life.

As a women, having to have a breast removed at any age is mentally scarring, and it has taken me a long time to accept what my body looks likes now.

But despite everything I have been through, I am one of the ‘lucky ones’ and I feel honoured to be able to ‘fly the flag’ for empowered women who have fought this battle.

Jen
12th Jul 2023

Jen Oliver - Park Surgery HR Manager - Breast Cancer

"On 12th February 2020 I noticed an indent on my right breast. Knowing this could be a potential sign of breast cancer I booked an appointment with my GP the following day and having checked me over, she referred me to the Breast Care unit at Worthing Hospital.

On 25th February, I was seen by a specialist breast cancer consultant, given a mammogram and an ultrasound; during the ultrasound they took 8 biopsies, at which point I knew it wasn’t going to be a positive outcome.

I met with the consultant again after all the scans and he confirmed I had breast cancer and that it appeared to be quite aggressive, as I had a number of tumours ranging from 3mm up to 5cm.

They told me that I needed to have a mastectomy operation to have my breast tissue removed, but they would be able to do a reconstruction at the same time, so it would look the same. There was a possibility I would also need radiotherapy, and/or chemotherapy, but I would have to wait for test results following the operation to know for sure what was needed. 

I was 39 years old, my daughter was just 20 months old and I was faced with the news that I had aggressive cancer - it was an incredibly difficult time. I count myself very lucky with the family and amazing friends I have. Everyone rallied round and helped me through it. 

In March 2020 it was confirmed that I had stage two invasive ductal breast cancer, which had been caused by oestrogen cells. My operation was scheduled for Tuesday 11th April 2020.

Unfortunately, covid hit and hospital surgery times were massively affected. The breast unit contacted me to inform me that my operation was now cancelled until they knew what theatre availability they had. They also informed me that due to restraints with time and theatre availability I would no longer be able to have reconstructive surgery at the same time, but would be having a single mastectomy only, to remove the breast entirely.

Thankfully as one of the “lucky ones” my surgery was rescheduled and I was in hospital on Thursday 9th April 2020 with my surgery scheduled for 3pm. At 3pm I walked down to the theatre, where I walked in and lay myself down on the operating table, this was one of the many changes they’d had to implement to reduce patient contact.

I was one of only two ladies able to have surgery that day, and what would normally have taken an hour, took over three hours due to all the additional procedures required due to covid. 

Following a slow recovery from the anaesthetic I was taken to the ward at 7:30pm. I don’t react well to anaesthetic and was particularly ill for the next 12 hours. Thankfully my mum came and picked me up at 1pm the next day and took me to her house to recover. My husband had time off work to look after our daughter while I was at my mum’s house. After a week I went home and tried to get ‘back to normal’. I had to get used to my new body and the restrictions I now had, including not yet being able to pick up my daughter which was heart-breaking at times. There were daily exercises I had to do to help move my arms and muscles; these were particularly painful at times.

In May I had a post-surgery check-up at the hospital and they were very happy with how it was all healing. They told me the lymph-nodes they removed were clear and they were very confident that having removed the breast, they had taken all the cancer.

The gene testing came back negative, which was good news and even better was the news that I wouldn’t need radiotherapy or chemotherapy. A relatively new test called an Onco-DX test had been carried out on a sample of my breast cancer tissue and this informed the doctors that chemotherapy wouldn’t be of use against the cancer I had. Normally if you’re under 40 years of age chemotherapy is automatically given, so I consider myself pretty lucky to have had this test done and for the result!

In May 2020 I started taking a daily tablet called Tamoxifen which prevents oestrogen cells from being absorbed in my body, with the idea that if they are prevented from settling anywhere they can’t grow into cancer again. I will have to take these for 10 years.

In November 2020 I started a 4-weekly hormone injection treatment called Zoladex. These stop my ovaries from working and therefore reduce the production of oestrogen within the body. This is for 5 years, so I’m now half-way through!

The side effect of these medications is a false-menopause, which for me has meant insomnia, hot flushes, headaches and joint pains, as well as many other things. Both treatments can affect my bones so I have 2 yearly bone density scans. I had my first scan in 2022 and following that I am on calcium tablets as it showed the medication was affecting my bones already… my next scan is in 2024, fingers crossed it’s not got worse!

I will be having annual mammograms until I’m 50 years old and then I will be on the standard 3 yearly rota.

In April 2021 I had a one-year review and was offered reconstructive surgery, which I declined. There were many reasons for this, the main ones being my reaction to anaesthetic and the fact I was now used to how I looked and it wasn’t important to me to ‘be normal’ again.

In September 2022 I got my mastectomy scar tattoo done. This was part of my recovery process and was rather emotional for me as I was taking that part of my body back and making it my own again (plus it gave me an excuse to have another tattoo!)

I refer to cancer as “the gift that keeps on giving” - my journey didn’t end when they removed the tumours, or when I started the treatment, it’s on-going and some days are hard but I’ve found that remaining positive and acknowledging what I have got in life has pulled me through. Plus, I’m super lucky with the people I have in my life and how much love and care I’ve received from them. I genuinely would have struggled a lot more without them.

If anyone who reads this is affected by cancer and they want to talk to me, please contact me. If I can pass on the support I received in any way, I will certainly try.

There are two pieces of advice I can give:

1. If you spot something, no matter how small a change, please go to your doctor and get yourself checked out. It’s much better to check it sooner than leave it and hope for it to go away.

2. As difficult as it is at the time, try to stay as positive as you can. Focus on the good things within your life, it’ll help to pull you through.

Thank you for reading ❤"

Ollie
18th May 2023

Ollie Cudd - Engagement & Communications Lead - Ulcerative Colitis

"I was diagnosed with Ulcerative Colitis in 2020 after a year of pretty unbearable symptoms. These included a change in bowel movements, abdominal pain, bleeding and increased frequency.
 
My GP was incredibly helpful throughout the process from checking my stool for inflammation to referring me for a colonoscopy at my local hospital. This is where they diagnosed me, shortly after the procedure.
 
Treatment-wise, I have had multiple courses of steroids alongside immunosuppressant medication to now biological medication in the form of IV infusions every 8 weeks. It feels like it's taken a lifetime to get to this point of full 'remission', but I can no happily say I'm symptom-free and can enjoy life.
 
For me, living with UC is pretty normal now it's well-controlled. I can eat what I like, albeit I like to maintain a healthy diet, and I rarely have to think about the disease.
 
I have personally found the journey very stressful with many setbacks throughout. Nevertheless, It's been extremely beneficial for me to talk openly about the disease and not be embarrassed as there is nothing I could've done to prevent it. The use of online forums to see how others have coped and managed has helped me, and companies with a healthy diet and exercise."
PPG
18th May 2023

Kim Trickey - PCN Social Prescriber - Crohns Disease

"I was diagnosed with Crohns during my third year at University whilst completing a placement in London. I had severe stomach cramps, change in bowel movements, extreme fatigue, headaches, fainting and sometimes sickness that occurred at least twice a month. I went to my GP for a blood test and they found my inflammation levels were higher than normal. Soon after this, I had a colonoscopy, which confirmed mild crohns. I now have medication that I take to help settle symptoms if they become painful however, I noticed some foods were causing the problem as well. So now, I am more mindful of cutting those foods out of my diet. Other people I know with Crohns have varying symptoms and have had major surgery, others similar to myself, can minimise the symptoms with medication and being more aware of how food and drink influences their condition. Crohns is often hidden regardless of how you may feel with it but for some people it can affect their lives in so many different ways. Stress and tiredness can also play a big part in experiences an episode of Crohns for some people and for some exercise helps and for others it can make symptoms worse."

PPG
15th Mar 2023

Emma Corrigan - Park Surgery Admin - Primary Lymphoedema

"I am 42 now but due to being born with a rare medical condition known as Klippel-Trenaunay Syndrome. Following genetic testing in my twenties, it was then decided that Proteus syndrome was a better fit for my symptoms. I wasn’t expected to live past the age of 5 years old. This condition amongst other things affects my lymphatic system and lymph drainage in my body, in particular, my legs and feet.

I first began to notice the signs of Lymphoedema as a teenager going into secondary School just at the time when you want to fit in and look like everyone else. It was then that my legs started to become and feel larger and started to get more pain. My feet, although abnormally large from birth, started to feel more out of proportion to the rest of my body, and I began to feel more self-conscious.

It was at this time that I was told I had Lymphoedema and was referred to the hospital for compression stockings. Naturally, at this time I was reluctant to wear them feeling that it was another thing that made me different. I didn’t start to wear them more regularly until I was 24 when I had surgery to take the varicose veins from both legs. I was still reluctant to wear the stockings as I still felt conscious of what people thought. It wasn’t until we moved to Horsham in 2006 that a doctor at Park (where I was registered at the time)referred me to St Catherine’s Hospice which had a Lymphoedema Clinic. They saw me every 6 months, kept an eye on the measurements and helped find stockings to best suit me. I am now under Pioneer who has carried on that same support.

I have good and bad days but do my best to keep things in perspective. With the help of family and friends, I’ve tried to not let it hold me back and by sharing my story I hope to spread awareness and help others."