I didn’t update the blog last week because I had a lot happening with chemotherapy on Monday and then three additional hospital appointments. So I thought that I would update the blog at this point… I have the time to because I had no chemotherapy this week- my first Monday in 9 weeks without it!

I completed cycle three of chemo last Monday and was given the brilliant news that my tumor markers are now 16! My iron was low again which meant that I found myself back on the chemo ward the next day for a blood transfusion. This took four hours but I was as cool as a cucumber about it because I knew what to expect this time round. It was irritating that I started to experience tummy cramps during my transfusion, which makes it uncomfortable to have to sit for as long as you do, but once again I have come to the stage where I know these cramps. Also, they don’t worry me because I know they are a side effect of the chemo.

I also had to stop eating during the transfusion because a few hours later I was due to have my repeat CT scan As 3pm came closer, I started to get more anxious about what would be found on the scan. I could not stop myself from worrying that the chemo would not have done what it needed to, even though my tumor markers were so good. The scan itself was quick but it felt like an eternity. As the machine was doing its job, I found myself panicking and questioning whether ‘Cyril’ was being defeated or not. Once I was out the scanner, I knew it was a waiting game until Friday. However, luckily the appointment was brought forward a day and so on Thursday I got some more good news….I am overjoyed to say that the scan looked great! The cocktail of chemo drugs has successfully taken the lead in the boxing match with ‘Cyril,’ and has now well and truly started to push him out of the ring! The good news meant that I was then given confirmation that my surgery will be on the 24th August. During my appointment, we also reviewed what the operation would involve, my recovery and what to expect during my hospital stay.

On Friday, I was back again at the Marsden to meet the professor in charge of my chemo. This meeting reviewed the three cycles of chemo overall and the plan ahead for my chemo schedule post-surgery.  The support provided by my team at the Marsden is amazing. Every appointment feels so well planned and I go into them feeling supported, not only by my family but also my team. They are there at every stage and answer any questions you have. It doesn’t matter how many times you ask a particular question…which is good because I’m known to repeat myself!

With the consent form reviewed and signed, it is now just a waiting game. The last time I had an operation I was three years old, so the idea of having one scares me. I have this fear of waking up during the operation, which I know is not going to be the case but it does still play on my mind. When I am not thinking through that worry, I am trying to imagine how I will react and what I will see when I come round after the operation. I’m worried about seeing the wires, drains and tubes attached to me. I know these are normal worries, and that the thing that helps me calm down is reminding myself that I am in very safe hands. It also helps knowing the outline of the plan and I know that with all of the support from my family, friends and the team I will get the things I need to heal physically, mentally and emotionally.

My siblings refer to me as a ‘tenacious little thing,’ and through my chemo they kept telling me that it was my tenacity that would ensure I came out on top after three cycles of chemo. They have told me that they expect me to wake up ready and raring to get on my feet and make my usual demands such as, “I need my lip balm,” “Tie my hair up” or “Rub my feet”. I can’t see this being true right now but I am sure that they will end up being right!

I think at the moment I’m scared of the unknown like I was before I started the chemo, but I look back on the past nine weeks and it feels strange to think how ‘normal’ it all became as I grew in confidence with what was involved. So at this point in my battle against ‘Cyril’ I see it as having another choice to make. I can focus on 24th August or I can take each day as it comes. I’m trying to do the latter but if I’m honest I’m probably doing a bit of both at the moment, and that’s ok. I have moments where I find myself freaking about the operation and the recovery and others where I can focus more on the day ahead. With the support of Chai Cancer Care, I am going to be learning Mindfulness. The idea of this is to develop skills in focusing on the here and now and being in the present moment. I think this is going to support me ahead of, during and after surgery. It will also equip me with useful breathing exercises to do when I begin my recovery.

When I get worried and anxious I try hard to not go with all the fears in my mind but instead focus what a huge milestone I will have crossed once this operation is over and I begin to recover from it. I also know that there will be moments where this hard to do and that is okay. I know myself and I know that I can get anxious and it becomes hard to get out of that state. This is when the support around me will help the most. I also feel that laughter and humor are essential. For me that is such an important part of my personality. I’ve learnt already that when you face hard things in life, like cancer, I can’t feel sad or be serious about it all the time because laughter is such a big part of who I am.

For example, the other day, my sister and I somehow managed to change my panic into laughter by googling the following questions: “What do surgeons do when they need to go to the toilet?”, “Do surgeons get hungry and eat during surgery?” and “What if the surgeon accidentally drops something in?”  I thank Google for the myriad of interesting (and sometimes concerning) replies! My boyfriend also managed to turn my panic into laughter over a Friday night family dinner when I asked, “How will they be opening me up?” He replied with, “Bring me the rest of the roast chicken and I’ll demonstrate!”  My friend Laura also calmed me down by sharing her operation stories and the time when she wrote messages to her surgeons on her tummy with eyeliner, which they discovered in theatre!

For those who don’t know, I am primary French teacher. I have had a love of all things French since I was teenager, which is why I ended up studying it at university and eventually teaching French. So, in keeping with my love of French, I wanted to share a quote by Henri Matisse. ‘Il y a des fleurs partout qui veut bien les voir.’ This translates as, ‘There are flowers everywhere for those who want to see them.’ Matisse was highlighting the importance of optimism and having a positive outlook on life. I know that when I face this next week building up to surgery, going into hospital, going into theatre, waking up and then starting recovery, these moments will be scary and I might feel like I want to give up. I’m going to push myself to remember Matisse’s words. I want to remind myself to see the flowers even if they do not seem very visible.

I’ve added a mixture of photos this week from chemo and the things I have done with family and friends to keep me busy and distracted.

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This Monday I had my second chemo session of cycle 3 (each cycle is made up of three sessions). Last week, I found out that my tumour markers have dropped from 58 to 31, so I was feeling really positive about having more chemo. Last week, I also met with my consultant surgeon to talk about: how I am doing, the plan for my upcoming surgery and chemotherapy plans following this. It was a really positive meeting and it felt so different from when I last met with him to confirm the diagnosis. This time I felt better emotionally and felt more able to think and talk about what’s to come. It’s a long road ahead, but I just have to take it one step at a time.

Once again, my chemo session this week went smoothly. I had just one little hold up because I had to have my full blood count test repeated because there was not enough blood taken in the first set. You do sometimes end up feeling like a pin cushion by the end of the day!  I was happily distracted by playing ‘UNO’ and ‘Guess Who?’ with family. It was also great to see my friend Rosie at lunchtime. Also, as you can see from the photos, I had one of the best sleeps ever during my foot massage!

I now have to prepare myself for the last session of my current chemotherapy cycle next week and then for surgery in a few weeks’ time. I naturally have my fears about the operation. I worry about being put to sleep, coming round in Intensive Care with lots of tubes, being attached to machines and wires and being in hospital for up to three weeks after. I’m also worried about the pain I will feel after and coping with recovery. One of the biggest things which has started to hit me more now is the consequences of surgery with regards to my future, and not being able to have my own children. It is obviously a really difficult thing to get my head around and something which I know will take time, so I know not to pressure myself to ‘be ok’ with everything at the moment but instead to think one step at a time at the moment.

The Royal Marsden team understand all of my concerns and they are encouraging of the additional therapies that the hospital offers that can support people on their journey with ‘Cyril.’ I am keen to access the art, relaxation and psychological therapies before and during my stay in hospital to help me through the next hurdle and find ways of coping with what is to come.

Eleanor Roosevelt once said, “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.’” This quote makes a lot of sense to me at the moment as my current chemotherapy treatment draws to an end. When I reflect on my last eight sessions of chemo, I can honestly say I have gained in strength, courage and confidence and this is going to help me with coping with the next stage. I know that as I continue on my journey I will keep gaining this strength, courage and confidence to deal with the next chapters.

 

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#FindingCyril

On Monday 25th July, I started my third cycle of my chemo. This was a big milestone for me because it brings me closer to the doctors repeating the CT scan and finalising an operation date. Whilst the repeat CT scan and the pending operation are scary, the fact that my tumor markers have now come down to 58 brings me hope!

During my consultation with the doctor prior to starting to chemo we went through the regular checks and penciled in a date for the CT scan, meeting the professor in charge of my chemo, meeting my surgeon and a possible 4th round of chemo. She prepared me for the fact that based on CT scan my professor might decide to attack ‘Cyril’ a bit more prior to my operation. This is not a bad thing. It means that the operation will be made easier. My doctors will not know if they are going to do this until they repeat my scan.

For this chemo session, it was lovely to welcome my great auntie to the usual crew. She is a fun-loving person who always makes me laugh. UNO was the game of choice for my brother Josh, my boyfriend Jonny and myself. My meds must have been extra powerful yesterday because I beat Jonny (twice) and he’s known to win any game that you play with him! Overall the chemo session went smoothly. Although it was the start of a new cycle, I didn’t have Avastin (Bevacizumab) which is one of the chemo drugs I usually have at the start of each cycle. The Cancer Research UK website gives a good explanation about Avastin; I have copied it below:

Bevacizumab targets a cancer cell protein called vascular endothelial growth factor (VEGF). This protein helps cancers to grow blood vessels, so they can get food and oxygen from the blood. All cancers need a blood supply to be able to survive and grow. Bevacizumab blocks this protein and stops the cancer from growing blood vessels, so it is starved and can’t grow. Doctors call treatments that interfere with the development of a blood supply anti angiogenesis treatments.

I didn’t have the Avastin yesterday because I am too near the point of surgery. It shouldn’t be used for at least 28 days before or after surgery and until surgical wounds are fully healed as it can slow down the healing process.

I felt quite drained after this week’s chemotherapy session, as you can see from the photograph of me on the sofa. I lay down intending to watch my daily dose of Neighbours but ended up sleeping through the whole thing! I woke up with an appetite (which doesn’t always happen at the moment) so I took advantage of this and tucked into a my new favourite meal…hoisin duck and pancakes with a twist. The twist being the duck is turkey. Eight (ok nine) pancakes later, I felt much better. A good meal definitely helps to boost your mood! 

I would like to finish by saying fighting ‘Cyril’ is a bumpy journey. You have to be prepared for changes to your treatment plan. I was reminded of this on Monday when I was told about the possibility of a 4th chemo cycle prior to my operation. Tony Robbins, the motivational speaker, says, “Your life is controlled by what you focus on.” This is an important quote because I am not going to focus on changes to my treatment plan; instead I am focused on the end goal. That is to say, saying goodbye to ‘Cyril’ in my ovaries once in for all!

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If you would like to read more about chemotherapy for ‘Cyril’ in the ovaries, have a look at the links below. 

http://www.cancerresearchuk.org/about-cancer/type/ovarian-cancer/treatment/chemotherapy-for-ovarian-cancer

http://www.macmillan.org.uk/information-and-support/ovarian-cancer/treating/chemotherapy/chemotherapy-explained/chemotherapy-for-ovarian-cancer.html

http://www.cancer.org/cancer/ovariancancer/detailedguide/ovarian-cancer-treating-chemotherapy

#FindingCyril

I had another good week before having chemo session 6 yesterday, which marked the end of the second cycle. I also felt the effects of my blood transfusion from last week. I had more colour in my face, I was a lot less sleepy and I was able to walk more without getting breathless. Last week, I also found out that my tumour markers dropped again to 151! The doctors are really happy with this and getting these results weekly gives me a great boost!

Last week, I was asked to take part in a segment called ‘Jewish Views’ on Spectrum radio. Clive Roslin led a conversation with Jenni Frazer (Jewish News journalist), Phil Dave (Spectrum Radio Presenter) and myself. The aim of this was to open up conversations about cancer because this is often something people find challenging to discuss. The interview gave me an opportunity to share my story and raise awareness of the BRCA gene mutation. I was also able to talk about how my diagnosis at age 27 shows that we need to be wary of statistics that suggest ovarian cancer is only a risk for women of an older age, and that women need to know about and be vigilant of the symptoms. We also spoke about the cancer journey and the importance of keeping a positive mindset. One thing for me that contributes to my positive mindset is sharing my story and raising awareness.

Recently, Finding Cyril tried to launch the #loveyourovaries campaign and I’m happy to say its started to develop some traction. So far, there have been quite a few #loveyourovaries photos being shared on Facebook  and I am hoping for more. The aim of this campaign is to help women know and remember the symptoms of ovarian cancer. Here is all you need to do:

1. Take a #loveyourovaries photo (see below)
2.  List some of the symptoms of ovarian cancer that you know of and then nominate some friends to do the same.
3. I have also included the Finding Cyril text donation code FICY58 with the campaign. If you are a UK resident, send this code and an amount (e.g. £2) to 70070 to donate. All donations go to The Royal Marsden Cancer Charity.
4. Post it on Facebook!

You can copy the text from my photo here to use on yours:

Persistent pelvic and abdominal pain, constant and increasing abdominal bloating, difficulty eating and the urge to wee more often. I know the symptoms of ovarian cancer. NAMES- Do you? What symptoms can you name? Spread awareness and show love for your ovaries with a ‘Love your ovaries photo’. If you want to donate to The Royal Marsden Cancer Charity, text FICY58 £2 to 70070 to donate. findingcyril.com #FindingCyril @FindingCyril

The way I see it, every person who takes part is another person who will learn about symptoms to look out for. As I have mentioned previously in my blogs, women should not be satisfied with the diagnoses of IBS for symptoms that may be indicative of ovarian cancer. I will aim to post as many of your photos on the blog and on twitter as possible! Be sure to tweet them to @FindingCyril if you want them on the website. You can also email them to findingcyril@gmail.com. Here are some from last week:

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So onto chemo session 6…It was so nice that sun was shining from start to finish. Once I had gone through all the usual bits and bobs, (weight, cannula, blood tests, talking to the doctor etc.) I was ready to start. This week I found out that I’m still low on potassium so I’m going to keep on with the daily potassium drinks. I also found out that I’m low on magnesium so depending on the level next week, I may start supplements for that too.

After this, my hair was prepped for the cold cap and then I had my pre-meds. Once the cap is on, a flush goes through your system for 30 minutes before the chemotherapy drug (Paciltaxel) is started. This allows the cold cap to start working before the drug does. The Paclitaxel takes one hour to go through. After this, the cap stays on for an extra hour to make sure that my scalp stays cool while the drug is still moving round my body. This is the time when I find distractions so helpful. Yesterday, it was the usual games with the inclusion of UNO. It was wonderful to have my superstar sister Tara and my wonderful friend Sophie join the usual crew. Competitive sides came to the surface and UNO is now definitely on the list for next week! And of course, I had my regular foot massage from my wonderful auntie. Yesterday’s session was much shorter than last week. This is because my treatment plan is weekly. The longer sessions are at the start of each cycle. They includes: Avastin, Carboplatin and Paclitaxel drugs. The following two sessions are shorter because I only have the Paclitaxel.

My lovely specialist nurse Jane came to see me during my session yesterday too. The moment I saw her walk through the door she made me smile. She is so comforting and I feel so lucky to have her by my side throughout this journey. We spoke briefly about what will happen at the end of cycle 3. I’ll have another CT scan and then meet my surgeon to talk about the plans for surgery. It’s good to have an idea of what’s coming up because it means I have small goals to be working towards.

I left yesterday feeling really excited that cycle 2 is complete. To be honest, I’m now just waiting in anticipation for next Monday to come round because I just want to get cycle 3 started. As more chemo drugs drip through my veins, I know that ‘Cyril’ is being hit harder. Hopefully, it won’t be long now before ‘Cyril’ looks exactly like the depiction created by my wonderful friend and fantastic artist Laura Footes. 

This week I’ll be back at the Marsden again for a kidney function test. This is routine when you’re on Carboplatin. It can feel scary to be having lots of different tests as well as the chemo. However, I keep reminding myself that these help the doctors monitor everything and make sure that they are giving you exactly what you need.

#FindingCyril

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.

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#FindingCyril