Tessa Shewan

My journey started in February 2008. I had just been to my GP where I had been given my first smear test. I was 24 years old and had never had a smear as the law changed just before I was due to have my first one. I'd been having a few problems with irregular bleeding for over a year and slowly they had been getting worse. I was at university when I first started having light spotting in between periods. My GP at the time thought it was probably because I had been on the pill since I was 16 years old and my hormones might be changing. I changed pill. The spotting continued and over the next six months became heavier and heavier until I was having to use tampons and essentially having two periods a month. I decided to come off the pill to see if this would help as the GP still didn't seem to have any answers as to why I was bleeding. I wasn't really worried about what was happening as it never occurred to me bleeding was a sign of cancer. I had never been educated about cervical cancer. So I continued to tolerate the bleeding for another six months. During this time I started bleeding after intercourse. This was embarrassing but still didn't set alarm bells ringing. It wasn't until I bled so heavily one night that I realised something must be wrong. This bleeding definitely wasnÕt because of hormones and so I woke up the next morning and went straight to my GP.

I had moved house and had a different GP. It was my very first visit to Dr Kansagra and after I explained my history he did a smear there and then even though I was only 24. And I'm so happy he did so.

Six weeks later I got the smear results. It confirmed severe dyskariosis or CIN III. I had never heard these terms before so started researching immediately. I was being referred to my local hospital for an urgent colposcopy appointment and so I read up about this too. So three weeks later when I went to the appointment I was well informed. The doctor took a biopsy before telling me to sit up slowly. And then she gave me that look. A look that you know means it's not good news. "It's the worst cervix I've seen in a long time; best case scenario is that it's just pre-cancerous cells." I'm grateful for her saying that as when I got the results of the biopsy four weeks later, I was prepared when they confirmed it was cancer. I met the gynecological oncologist soon after that and he explained the next step would be a cone biopsy. I was booked in for the surgery under general anesthetic on the 16th May. It was around this time that I stopped working. I found it was too hard for me to concentrate on my job as a Wine Bar Manager. The surgery was quick and I was allowed to return home the same day. I wasn't in too much pain and after a couple of weeks of resting was back to my normal self. I was hoping to return to work as soon as possible but decided I didn't want my job anymore. I wanted a new one, my priorities had changed already and my health and happiness was at the forefront of my mind. So I took the plunge and officially quit my job. Four weeks after the surgery I went back in to the hospital for the results. The cone biopsy showed they had not been able to remove all the cancer so more surgery was needed. Because of my age, the preservation of my fertility was important to both me and my doctors. The next surgery would be much more technical and so I was referred to The Royal Marsden.

My first appointment at The Royal Marsden was at the beginning of July. I was meeting a specialist to discuss having a trachalectomy. I was excited as this meant I'd still have the chance to have a baby/babies in the future. I'd heard so many great things about The Royal Marsden and was so happy to be being treated there. The day quickly took a turn for the worse though. The specialist I was speaking to was given new information about my cone biopsy. It had already been analyzed at my local hospital which I knew had shown that there was still cancer remaining inside me. The sample was passed onto The Royal Marsden and they analyzed it again. They found neuroendocrine elements which meant that my cancer wasn't as straightforward as they had hoped. Neuroendocrine tumours only account for less than 1% of cervical cancers and are a very rare type of tumor. It behaves aggressively and because of its rarity not as much is known about it. One minute I was to have a trachalectomy, and the next my fertility was no longer the priority. "The priority now is to save your life"' I was told. For the rest of the day I sat in waiting rooms as teams of consultants, nurses and specialists discussed what the new action plan would be.

The plan was to start chemotherapy as soon as possible. This was to prevent neuroendocrine cells traveling or growing anywhere else in my body. After six cycles of chemotherapy I was to have a radical hysterectomy. I was heartbroken as things seemed to have sped forward really fast and I was suddenly told that I would definitely lose my hair and will never be able to carry and give birth to my own child. My mum and I left the hospital that day feeling extremely overwhelmed and shell-shocked. I was to start chemotherapy within two weeks which meant I would be bald within a month so I decided to cut my beautiful long hair short that very same day in preparation for what was to come.

The day of my first chemotherapy was quite exciting. The staff at The Royal Marsden make you feel like you are the only person in the world and keep you informed every step of the way. I had no idea what chemotherapy entailed and that it would take all day. We left the hospital at 6pm laden with a bag of drugs: steroids, anti-nausea tablets, mouthwash. I had no idea chemotherapy had so many side-effects and was a little anxious to see how it would make me feel. The first couple of days after the chemo I felt fine but was starting to feel lethargic. By the third day I was feeling agitated and uncomfortable and needed someone to be with me 24 hours a day as I wasnÕt feeling up to cooking, cleaning and looking after myself. I basically slept solidly for the next 4 days. But then a week after IÕd had the chemo I was feeling back to my old self again. And this was the pattern for the next five months. I had the chemo every three weeks between July and November.

It only took a few days for my hair to start falling out. A few strands at first then I'd wake up in the morning with my pillow completely covered. Eventually it would just fall out every time I moved. I had to vacuum my flat a lot that week, hair was everywhere! After a week my hair had thinned so much at the front that I decided it was time to wear one of the wigs I had. I turned up at my mumÕs house wearing my wig and mum said I should just shave my head or cut the rest of my hair off. I didnÕt think I was ready to take that plunge. I sat in the conservatory thinking for a while and then told mum to go and get a mirror and the scissors. I expected to feel utterly devastated watching my hair fall out and having to cut it off. Whilst looking in to mirror and holding the scissors to my head I could have easily burst into tears but I held them back. I asked my 14 year old brother to help me cut my hair off and then my mum had a go too. We laughed at what I looked like and it turned into a really important family moment. My dad died when I was 11 and so itÕs only been the three of us for a long time, we are very close.

So that was it, my hair was gone. I got used to wearing a wig quickly but didn't like seeing myself bald for a few weeks and wore a headscarf whilst I was at home. I continued having my chemo every three weeks, as I knew what to expect it got easier to deal with. I ploughed on through for five months, trying to live as normally as I could, going out with friends, shopping and all the everyday things. It went by quickly and I realised that the time for me to have my surgery was coming up very soon. I wasn't nervous or scared just a little anxious. I wasn't worried about being in hospital as The Royal Marsden staff are just fabulous. I felt prepared.

November 27th arrived and I checked in at the hospital and was taken to my bed in the ward. My surgery was first thing the next morning and I was starting to get a little nervous. The surgeon still hadn't decided whether they would keep my ovaries and said it would depend on what he saw when he looked inside me. He said he would start the surgery key hole but if necessary he would need to cut me open. So basically I wouldnÕt really know exactly what heÕd done until I woke up after the surgery.

I woke up in recovery and found out theyÕd kept my ovaries and performed the whole surgery via key hole. Fantastic news! I was put on morphine for 24 hours and had intensive care over night but 10 days later I was allowed to go home.

That was 3 months ago. The surgeon decided I didn't need anymore treatment and so far so good. I haven't had any side-effects from the surgery and have recovered really quickly. My hair has started to grow back and maybe within the next month I'll be brave enough to go out without a wig on. I'm looking for a job but as my priorities have changed I'm not in a rush, I want a job I truly enjoy as life is too short to be unhappy. In the meantime I am doing everything I can to raise awareness of Cervical Cancer working with Jo's Trust and Macmillan. I want young women to be educated about the symptoms of cervical cancer and also why a smear test is important. There is a fear around smear tests that needs to be erased as they save lives and prevent ladies going through what I and many other ladies have been through. I can't carry my own babies but I will still be a mother one day, I have no doubt about that. It's the hardest thing I've ever had to go through but cancer has shown me I have a strength and positivity I never knew I had.