So this past week has gone quite well for me. I had one day where I was sick but it passed quickly this time and I did not have to visit A&E! I also got an updated tumour marker result… In three weeks, my markers have gone from 3052 to 375! This news gave me such a boost and the doctors are really happy with the result.
I felt quite washed out last weekend so it was nice to spend some time relaxing in the garden; on Sunday night, my boyfriend, my friend Chloe and I sat outside wrapped in blankets drinking tea, eating fruit and cheesecake and surrounded by candles (there’s a photo in the slide show). We spent a couple of hours chatting about all sorts! This was the perfect way to calm myself down before my chemo session the next day. I get my moments where the anxiety can get too much, and I don’t always feel I know how to handle it. However, I know that this garden time is one to keep on the list for these moments… despite the insect bites that I got!
‘Cyril’ in my ovaries means that, for the moment, I cannot be at work. It is hard to put down in words how much I miss the pupils and the staff I work with. I love my job, feel privileged and honoured to be part of such a wonderful school and cannot wait to be back there. I was beaming from ear to ear when I recently received beautiful cards and gift from my colleagues and pupils. I look at these every day because they help me to stay positive, and they remind me of just how many people are fighting Cyril with me. This continued love, encouragement and support really does mean the world to me. It’s helping me to show Cyril that he is not wanted and must simply go away! I looked at these reminders before I went for session number two of cycle two yesterday.
I felt slightly more nervous having chemotherapy yesterday than I did last week because I was having a blood transfusion, which is a new experience for me. After going through the regular things yesterday morning (checking weight, putting a cannula in, taking bloods and talking to the doctor), it was time to get started with the transfusion. My haemoglobin fluctuated again over the past week so they decided to give me two units of blood to avoid me becoming lethargic and breathless. The blood transfusion process took five hours. Initially this felt like a lifetime, but surrounded by loving family and friends it flew by. My wonderful nurse and doctor made sure that the blood was covered up to avoid me feeling faint at the sight of it and potentially being on the floor before the infusion even began!
My friend Rosie joined me for my chemo session yesterday and brought the card version of Guess Who, which was a great distraction and kept my focus off the drugs. We then moved onto the ‘guess the celebrity game’ followed by ‘Heads Up.’ My cousin David proved himself to be pretty good with accents and impressions! I did of course have the famous foot massage by auntie Roz! As I was sitting and lying down for longer than normal yesterday, the foot massage helped to improve my blood circulation (and transport oxygen though my the cells in my body) over the five hours. There were moments where I felt hot, tired, stiff, agitated and woozy but these feelings seemed to pass quickly because I had lots of people to distract me and talk with. When my nurse came round and said, “Four minutes left,” I felt a sense of relief and achievement at having managed the five hours.
Before starting the chemo yesterday, my nurse gave me an injection of a drug called Zoladex. This goes into my ovaries and is given once a month. It works by essentially telling the brain to stop the ovaries from making oestrogen. Once you stop taking the medicine, the ovaries begin functioning again. The doctor’s aim is that it will put my ovaries ‘to sleep’ during chemo because otherwise ‘Cyril’ can cause damage to the ovaries and affect fertility. Research studies have shown good result from patients who have used Zoladex. In my case, I know that ‘Cyril’ has affected my right ovary but I’m unsure for the moment if he has affected the left ovary, which is one of the reasons why I am having Zoladex. So I don’t know at this point if my left ovary can be saved and even if I want it to be. I am at higher risk of ‘Cyril’ than other women. I am in the very rare situation of battling ‘Cyril’ in my ovaries at a young age and because of the BRCA gene mutation. This makes me feel uneasy and very scared to possibly keep one ovary even if there is a chance that I can. I feel that will I be continuously wondering whether the other ovary will be affected by ‘Cyril’. For me this is too much anxiety to bear because the BRCA 1 gene mutation (which caused ‘Cyril’ for me) is not leaving my body. This is a very hard thing to get my head around but I know that even if I cannot have my own children in the future, there is more than one way to be a parent.
Once the Zoladex injection was in it was cold cap time. I was quite excited to get the cap on (I was so hot yesterday!). This why I could not understand how my amazing cousin David who joined us yesterday had a sweatshirt on all day! My nurses prepared my hair and gave me my pre-meds. They know I have funny reactions to pre-meds. These range from: asking for jellybeans, holding the sides of chair, giggling and saying things like ‘I feel like I’m flying!’ Yesterday, I did all of the above! After thirty minutes of the cooling cap on, the chemo started to drip into my veins. This meant that boxing match with ‘Cyril’ started up again. ‘Cyril’ has learned that chemo is not a contender to mess with. I had my regular foot rubs with the cap on. This week I have to thank my superstar auntie and wonderful friend Rosie because they both did this for me!
Whilst the cap was on, Rosie and I were talking about #FindingCyril and its aim to raise awareness of ovarian cancer amongst women of all ages (with and without the gene). I encourage women to think carefully about the symptoms, and if you have experienced any of them consistently even for a short amount time go to your GP and been seen. This is because ‘Cyril’ in the ovaries is often known as the ‘silent killer.’ Also, if you get checked and all is okay but the symptoms come back, you must get checked again. Remember this ‘silent killer’ is hard to find and diagnose (it can take months), and this often results in it being found in the advanced stages. If you have any further questions please email Finding Cyril.
Yesterday was such a long day and I didn’t leave hospital until gone 7pm. It was strange because I didn’t instantly feel tired. I think this was because I felt a sense of achievement for completing the long day. In the coming days, I will feel the full effects of the blood transfusion. I will never know the person who donated the blood that I received, but I am forever grateful to them. I am so happy that the post I wrote last week encouraged people to give blood. Thank you to all of my friends who supported the @JoelyBearAppeal last weekend by attending their blood giving session. During my transfusion, Rosie and I asked the nurse my blood type. It turned out to be the same as Rosie’s (A positive). This made us feel like from the two units of blood that I had been given, the unit of A positive blood that Rosie donated on Sunday somehow contributed. It’s great that my boyfriend’s work colleagues have also been inspired to give blood since learning about me needing a transfusion. My brother and his friends are also planning to set up a blood donor session soon; the aim will be to encourage people to sign up to donate at a blood drive they arrange at Edgware hospital – more details on this to come.
Please take a look at my photos from this past week; relaxing in the garden the night before chemo, the chemo session yesterday, and the gifts and cards from school that make me smile and face my recovery so that I can get back to working with my pupils and the best staff team in the world!
I would like to finish this entry with a funny story from last night. As I have explained, I have scalp cooling for my hair (I will be writing about this process and how to protect and support the hair between treatments in another blog post). So far it has worked really well. Yesterday evening, I went to the toilet before bed. I turned round to flush the toilet but as I did, I noticed a clump of hair on the toilet. It was strange because it didn’t look like it came from my head, but naturally, my first instinct was to panic. My dad came running upstairs. He looked at it and was baffled. He was as confused as I was. “But it can’t be from your head!” he said. “Well then where has it come from?!” I shouted back. We stood silently for a few seconds trying to find an answer. All of sudden, my brother chirped up from his room. He said, and I quote, “No, no! It’s my armpit hair….I was grooming earlier and thought I flushed it properly.” My panic fizzled away and we had a good laugh, not only with the situation but also AT my brother. It was so great to be laughing before falling asleep because, as they say, laughter is the best medicine!
Note to self: Check for Josh’s armpit hair in the toilet before sitting on it!
I once again urge you to talk with your family about your family history of breast and ovarian cancer. If you feel you have a history of these cancers, go to your GP and get the ball rolling for genetic testing. Please refer back the article about on Spreading BRCA awareness for information about gene testing. Remember that knowledge is power, so if you find out that you carry the gene mutation you can make choices that are right for you. Once I knew that I carried the BRCA 1 gene mutation I made the choices of getting my breasts and ovaries checked which has helped me with ‘Cyril’ because my doctors know that it was not there seven months ago when I last had a pelvic scan and a CA125 blood test. @BRCAUmbrella is a great group for more support on genetic testing. If you have any further questions about my experience with genetic testing, please email Finding Cyril.