In May this year, I started bleeding for a while after my period, and just thought it was probably an infection or something, so I went to have a smear. I started worrying when the nurse called the doctor into have a look, and the doctor wanted to do an internal examination, which she did. They then asked me to go to the GP’s room and by then I was really worried. We sat down and I could tell she was having trouble telling me something. Then she said that she was really sorry but she had found a growth on my cervix. To be honest I took it in my stride up to that point. I’m a scientist and a rational person and thought that there must be many things that this could be and it didn’t necessarily mean cancer. The doctor asked me what I planned to do for the rest of the day and I said ‘go back to work?’. Well she recommended I didn’t and that I call Nick (my fiance) and ask him to come home, and have a few drinks! Well that worried me! If the doctor thought it was serious then it probably was. She put me on the ‘2 weeks - wait’ list for hospital referral, and even though I knew that was quick it still seemed like a long time to wait. I called Nick in tears after the appointment and he came straight home and talked me back into being my usual logical self - there was no point in worrying when we had no clue what was wrong! I phoned my mum and dad later as well and told them, they agreed there was no point in worrying but of course we were all a bit.
Before I heard anything back I was due to do my first Sprint Triathlon at Blenheim palace, raising money for Girlguiding Kidlington (where I am a Brownie leader). I had trained for months for this triathlon but was wary of going through with it when I didn’t know what was wrong with me (and I was still bleeding). After discussions with friends, family and doctors I decided to give it a go. The most likely thing to go wrong would be I would feel faint and have to stop. There were lots of safety teams dotted around the course so I felt quite safe. I managed to finish it and totally forget about my worries for a couple of hours! Had some lovely support from my family and the other Brownie leaders. I’m so glad I made the choice to give it a go.
I didn’t hear anything for a week or so, so I phoned the 2 weeks wait people. After that I immediately got an appointment at the Churchill hospital - the cancer specialist hospital in Oxford - all very worrying. Nick and I went along and I saw one of the gynae-oncological fellows. She was very nice and told me that due to my age it was very unlikely to be cancer, and that it could be a number of other things - some consolation. She did a biopsy (no more difficult than a normal smear), and I would have to wait a week for the results. Luckily we were due to start our Canal Boat holiday that day - so off we went to join my mum and dad on the boat! The following day my sister Cat, her partner Matt and baby Maggie joined us and we set off in the direction of Birmingham! Great weather, great company, lots of pub trips and peaceful countryside meant we could put all the worry to the back of our minds.
The day we got back I had another appointment at the Churchill. The weeks hidden worries resurfaced and I was very nervous. We saw the same doctor and she told us it was unfortunately cancer, and a high grade type that grows quickly. It felt like a dream being told that. The word cancer has such huge and negative connotations, that it feels so serious. In fact it really doesn’t have to be. It’s so common and often curable and treatable. They told us I would have a MRI scan to see how big the tumour was and how far it had spread, then we would decide the course of treatment. It would probably either be surgery (a hysterectomy - partial or full), or chemoradiotherapy, but hopefully not both. It was a massive shock but Nick was a rock of logic and we just took it in our stride. It was so helpful having as much information as possible. There was a Macmillan nurse in the appointment as well, and she took us off to a room afterwards to make sure we had understood and digested everything. She was so nice and I am very grateful to Macmillan for providing this and subsequent amazing support. After the appointment we went straight to my parents house to explain everything - we found that it’s much better for family and friends to actually see you in person to see that you’re actually ok, and to discuss everything fully.
At this point I was also in touch with my good friend Tom who had prostrate cancer 2 years ago, and who has been amazing at being there to discuss stuff because he went through a lot of similar experiences.
Two days later I went for my MRI scan with my parents, I was petrified but not because of the scan - I am not claustrophobic at all. I was worried about the cannula I knew they would put in my arm - I hate needles and blood and everything! True to myself I fainted when they put the cannula in, then I fainted again when she said it was only half way in! Subsequently I always have these things put in while I’m lying down! The MRI took about 40 minutes I think, it was not a pleasant experience but it was fine and they put Florence and the Machine’s new album on for me!
As soon as I left the hospital my dad dropped me off at the train station and off I went to meet my friend Giulia and we hopped on the Eurostar to Brussels - on our way to a music festival called Rock Werchter - what a way to distract myself! I was in two minds about going, but I wasn’t going to get any results until the following week and I didn’t fancy just sitting at home! We stayed with my friend Freya in Brussels and had an AWESOME weekend of music and food and drink. I did have a few upset moments during the festival but mostly it was giggles and beer :)
On the 1st July I went back to the hospital to get the results of the MRI. They said the tumour was 1-2cm big, and said I was Stage 1b1. The best course of treatment for me (because of my age and the fact that I didn’t want to go through early menopause) was surgery. A full hysterectomy. This was scary but again we took it in our stride. I think we were particularly lucky because Nick and I have never been interested in having kids, I am not broody at all and was foreseeing a life with lots of nephews and nieces and friends’ children, but none of my own. Therefore this news could have been a lot harder than it was.
The following week I had a pre-op assessment - more bloods taken (urgh), and on the 14th June my surgery was scheduled. The thing I was most scared about was that during the surgery they were going to check if the cancer had spread to the lymph nodes. If it had they would stop the surgery and I would have chemoradiotherapy. If they hadn’t been affected they would continue with the surgery. I was just hoping so much that it hadn’t spread that I forgot to worry about post-surgery. After an 8 hour surgery (key-hole) I woke up very groggy and out of it, but pleased that they had completed the surgery successfully, and that they had found clear lymph nodes. I was fine until my morphine drip ran out, then the oral painkillers started and I experienced the short-staffed nature of the NHS. I had to wait a long time to get my painkillers, and I was in a lot of pain, but I just had to grin and bear it. The next couple of days were not pleasant - a catheter, weakness, tiredness, lymph fluid escaping - it was not the best few days of my life. They said that I could go home after 2 nights there, but I refused because I didn’t feel ready. Once I got home though things started to improve loads and I was seeing a difference every day. I walked around the block - it took me forever but it was a good day!
I still knew that radiotherapy was on the cards, and I knew from some hints the doctors had given that it might be quite likely, but as I got stronger and even went swimming, I started to feel optimistic and ready to get back to normal. When the appointment time came to find out if I needed more treatment I was feeling good, and it was crushing to find out that they recommended I have 5 weeks of radiotherapy with 5 sessions of chemo, and then brachytherapy at the end (internal radiotherapy). They said it was because they had found that the tumour was actually 4.5cm big, and there was some evidence it had tried to spread, as well as the fact that the cancer is high grade (highly abnormal). It was difficult to come to terms with but people I spoke to said that the radiotherapy wasn’t that bad, and defnitely worth it to make sure the cancer was all gone. So I prepared myself for that and got a start date. I had to have a day of CT scans and PET scans to ‘plan’ the radiotherapy, and had little point-like tattoos so they know where they were aiming.
The next curious decision we had to make was about fertility. The radiotherapy would most likely destroy my ovaries, and so we were offered IVF and egg extraction on the NHS. My initial reaction was no - I didn’t want kids anyway and I really didn’t need another procedure. However it turned out that the procedure was pretty simple, and they could do a fast-track schedule so it wouldn’t interfere with the radiotherapy starting. So we had a consultation and signed on the dotted line. I began to think that if one day we decided we would like kids, a surrogate birth wouldn’t be a bad way of doing it! Pain-free!
After that things took a turn.
All week I had been feeling a bit odd. I had been out the previous weekend with the triathlon club and we drank a LOT of prosecco. I walked home and took a stumble. The hangover was bad but then my cough and breathlessness seemed to get worse, and I started getting aching joints around my pelvic area and the top of my legs. I just thought I overdid it over the weekend (I had also done a pilates class - first exercise since surgery). I had phone 111 twice, they told me go to the out-of-house doctor and they had a once over and told me to rest. By the end of the week I phoned my Macmillan nurse - it was really worrying me and I wasn’t sleeping. She phone back on friday (4th sept) and told me that the doctors wanted me to come into hospital, to bring an overnight bag just in case, and to not come on my own (worrying). Nick was at work so I phoned my mum and dad to come and get me (lucky they live so close).
We got shown to a private room and had to wait an hour or two to see the doctor. He asked me to tell him what was bothering me, and then said that he had some bad news for me. From the PET and CT scan that they had done to plan the radiotherapy, they had seen that the cancer had spread. To lungs, liver, pelvic bone and a little bit in other places. The cancer was small in all of these places, but pretty widespread. This ultimately means it’s incurable. Hearing those words was like a dream. I had even joked to my mum while we were waiting that I might have lung cancer. It’s just like they describe in books, you’re world starts to collapse and the future changes from a clear path, to a fuzzy unknown. Then the dark alleys open up where you start to think the worst is going to happen, and panic begins to set in. My parents were there too and were feeling similar things - disbelief mainly. The doctor had been waiting for an appointment with my oncologist before they told me the news, but since I was having symptoms they wanted to check me out. They did a neurological exam and an x-ray of my pelvis incase I had fractures. They asked me if I had any questions - my main one was - what does ‘incurable’ mean, that we can’t do anything? that it’s terminal? They clarified that hopefully we can use chemo to reduce the cancer, but ultimately we probably can’t ever get rid of it - he said the word ‘manageable’ was better suited to someone in my position (so young). The previous treatment plan would be cancelled. Nick had been making his way ever since I called him to come quickly, and he arrived. I told him the news and you can imagine how hard it was. Our lives would be changed forever now.
They sent us home in a speechless whirlwind. Mum and dad dropped us off at home and we all had a good cry. That weekend was HARD. I had plans to go to London with friends but I couldn’t face it, needed to just spend the day with Nick trying to get our heads around it. So we went to the zoo. It was a nice day, but later sleeping was difficult, I felt sick a lot of the time. I just wanted to have a proper appointment with my oncologist so I knew what the plan was and all of the information possible (I am a scientist after all). We had to wait 3 more days to see her, and we found out I would have to have 3 sessions of chemo (with 3 drugs) once every 3 weeks to start off with. The scary thing is that these drugs only have an affect on 50% of people. After the 3 sessions they will do more scans to see if it’s working, and if it is, they will do another 3 sessions to begin with. There was no mention of any alternative solutions. She told me to stop doing the fertility treatment because it wasn’t relavent anymore. We could have left it like that but I just wanted to know everything, so I asked again about what ‘incurable’ means and how it’s different to ‘terminal’. Her answer was that many people would call it terminal, because ultimately it will shorten my life. She also said on average, people in my position have 2 years to live - but this a broad spectrum and could mean anything really- thank goodness for our science brains - we are used to statistics like this. But it was still very hard to hear.
After this appointment we went straight to my parents house and tried to come to terms with all of this news together. The value of this support is indescribable.
Then we were just waiting to hear when the chemo would start. People kept saying that positivity is key - that it really helps to treatment to work, but it’s bloody hard to be positive, especially when you have a really annoying cough and feel generally rubbish. My cough started getting worse in the evenings, I was becoming very breathless and wheezy which was making me panic and making it worse. My mum went through some relaxation techniques with me which helped. The doctor had given me oral morphine to relax my lungs but it didn’t seem to help much. I began to start feeling rather sick a few days later, and was throwing up in the morning. I put it down to nerves or just general being ill. When on monday I started being violently sick and not being able to keep anything down, and had weird chest pains, my and my parents went to A&E (after the advice from 111). We stayed there for 15 hours. They did tonnes of tests, gave me anti-sickness. They thought it might have been a lung clot which was giving me chest pains but the x-ray and CT scan showed up clear. They concluded that the morphine was making me sick and sent me home with anti-sickness drugs but I have decided oral morphine is bad for me so I haven’t had any since (and feel a lot better!)
After that I felt a lot better for a few days, and had to start preparing from my chemo. To be honest I was petrified, and the doctor gave me some lorazepam (valium type relaxant) which has been amazing. On Friday I had my first chemo treatment and it went fine. We were there for 9.5 hours, had 3 drugs, but all the nurses was so nice and it was fine really (my lovely friends send me lots of things do to and eat (chocolate) which helped a LOT).
So far I feel ok but I’m prepared for that to go down hill, after 4 days my white blood cell count will drop so I may start feeling very tired and weak.
I’m so lucky to have many lovely friends and family who have sent me lovely wishes, and I feel bad if I haven’t replied to everyone. I also want to see everyone but I can’t really make plans too far in advance because I’m not sure how I’ll be feeling.
In terms of hair loss - my friend Sara told me about a ‘cold cap’ which you can wear during chemo which might mean you keep some of your hair. So I’ve done it but but I’m still going to assume I’ll lose it. I’m going to have my hair cut short next week to prepare myself for the transition.
Thank you for reading my blog - well done for getting this far. Please feel free to message me or ask me any questions (and If I don’t reply try again!). I’ll keep you updated when I can.
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Here is a timeline to help with the order of things:
End of May - started bleeding. Registered for doctor and booked smear
5th June - smear test - doctor found a growth, was put on 2 week wait waiting list
14th June - triathlon
15th June - appointment at the Churchill, biopsy.
15th - 22nd June - Narrow boat holiday
22nd June - Results from biopsy
24th June - MRI scan
25th - 29th - Rock Werchter
1st July - results of MRI - plan for surgery
8th June - pre-op assessment
14th June - Surgery, hospital 3 nights
3rd August - appointment with Mr Halder - referred to clinical oncologist
24th August - clinical oncologist
26th August - scans (PET & CT)
28th August - Fertility unit
4th September - Fertility unit
- dreaded friday
8th September - oncologist appointment
14th September - Sobell appoint
18th September - Chemo started
