Tag: Awareness

Eyebrow & eyelash care during chemotherapy

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IMG_0970During my first session of chemo, the nurses suggested a product that you can use which can help with reducing eyebrow and eyelash loss. Hair loss during chemotherapy is dependent on a number of things: the type of drugs you are on, as well as the individual.

The product I’m using is called Lipocils, made by the brand Talika. It is not a product that is specific to chemotherapy patients, but it is known to have really good results. Even if you find that you loose eyelashes and eyebrows, Lipocils helps to stimulate growth, so it is good to keep going with it during and after chemo.

It’s really easy to use; you just apply the gel on your eyelashes and eyebrows twice a day. It is important to ensure that you apply it to each individual eyelash, so I find it easier to have somebody help me with this…as you can see in the photo, my wonderful aunt is applying it for me!

image1 (1)So far I’ve had really good results with Lipocils, so I’m going to continue using it. I understand it is difficult to know whether the effectiveness will change over chemo (like with scalp cooling). However, trying these things help me feel proactive and offer a feeing of control, in a situation where lots of things are out of my control.

Please refer the Space NK link below for further information. Also, have a look at the reviews. One review is from another chemotherapy patient.

http://www.spacenk.com/uk/en_GB/brands/t/talika/lipocils-expert-MUK200006259.html
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My seventh chemo session – Start of the third cycle

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IMG_1252On 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! IMG_1258

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

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A guide to scalp cooling and managing hair loss

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imageI received my diagnosis on a Thursday and on the Friday I was sitting in front of the professor in charge of my chemotherapy treatment; which was to start on the Monday. There was not much time to get my head around what was happening. I felt relieved that my sister was taking notes during the consultation, because there were moments when I felt like I was present in the room in my body, but not in my mind.

Before the professor came in, we met with his specialist registrar who took us through how the treatment was going to work and what drugs were going to be used. Initially, I was meant to have chemo once every three weeks (3 sessions). When the issue of hair loss came up, I became very distressed. I was told that the hair loss would happen three weeks after my first session and that it would fall out quickly. I think this distress was due to the fact that so many things were changing so quickly.

When the professor eventually came I was imageclutching my sister and was very tearful. He immediately said, “Everybody has given you bad news so far, but I am going to give you some good news.” Instead of having the drug that causes hair loss in one big dose every three weeks, he decided he would administer it weekly so I could try the scalp cooling treatment. Even though he was clear that scalp cooling does not always work, this news instantly took a worry away from me. Although it is hard having chemotherapy each week, this pattern has actually worked well for me. I feel comforted by the fact that I see the doctors each week, and having the chemo drugs administered each week gives me clear milestones to tick off.

imageScalp cooling can reduce the hair loss caused by chemotherapy drugs. These drugs can cause hair loss because they target all the rapidly dividing cells in the body. Cancer cells are rapidly dividing but there are also healthy rapidly dividing cells in our body, like hair follicles.

The scalp cooling treatment works by reducing the amount of chemotherapy drug reaching the hair follicles. Scalp cooling doesn’t work with all chemotherapy drugs and it is not possible to know how effective it will be. In my case the drug Paclitaxel, which makes up 20% of my treatment, is the one that causes hair loss. Scalp cooling doesn’t work with all chemotherapy drugs and it’s not always possible to know how effective the treatment will be.

The cooling cap is placed on my head thirty minutes before the chemo drugs are given. This ensures that the scalp is frozen to the correct temperature. Prior to putting the cap on, the nurses wet my hair, put conditioner in and place my soft headband on, making that it covers my ears. Next, two nurses place the cap on together and push down hard to ensure that there is no gap between the top of the cooling cap and the scalp. Then, they put the chinstrap in place. I find the strap the hardest element of the cap because it is very tight. I don’t seem to find the cap cold-I know this is bizarre! My boyfriend Jonny, who plays American football, looked at me once when I was wearing the cap and told me that he could not cope with his hand in a bag of ice when he dislocated his thumb in football, so he was in awe of how I could deal with a cap that freezes the scalp to -4C. Interestingly, when my cousin came to chemo the cap impressed him. He is known in the family as the one who always gets hot. I recall family holidays with him sleeping with wet flannels (or sometimes even makeshift flannels!) He saw the cap and declared, “I need one of those at home; it would sort out my issues of getting too hot at night!”

Going back to the cooling cap.. As I said, it goes on thirty minutes before the chemo is given and it must stay on one hour after the chemo drug have been administered. It is at this time that I have one of my aunt’s famous foot massages! The massage seems to take my mind of the cooling cap. The paracetamol and lorazepam that the nurses provide also help to deal with the cap. The paracetamol minimizes the chance of a headache and the lorazepam instantly calms you down. I also find that playing games or working on my colouring books helps to take my mind off the cap.
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The nurses are amazing because from the first session they gave lots of advice on how to care for your hair during the treatment. I have been following this carefully in order to have the best chance with the scalp cooling. The fabulous Sandra washes my hair for me on Tuesday mornings and that is the only time I wash my hair. We do it on Tuesday mornings, because after the treatment on a Monday, my hair has lots of conditioner in it. It sounds strange, but having somebody else wash my hair makes me feel better. This is because if hair comes out at this point, I seem to panic less.

We wash my hair using the Paxman shampoo and conditioner. The company that make the cooling caps produces these products, and they were recommended by the nurses. Once my hair is washed, Sandra gently combs my hair with a wooden wide comb, taking care not to apply pressure on the roots. I then wear a soft headband and leave my hair down to dry. The nurses also advised that I do not use straighteners or a hair dryer on my hair as it damages the follicles. After this, I do not comb my hair until the following washing session. I wear soft bands to keep my hair away from my face, or tie it up with a very soft scrunchie. Finally, I sleep in a hair net (this was also recommended by the nurses) The hair net means that my hair is contained during the night, and fewer knots occur. They are actually quite comfortable to sleep in. It is quite an interesting look to be sporting and my sisters have come up with some interesting nicknames! The nurses suggest sometimes cutting a couple of inches off your hair to reduce the weight of it on the roots. Now that my hair has got longer, this is something I will be doing soon.

imageUp to this point the scalp cooling has proved effective for me. I have had normal hair loss but nothing has come out from the roots. I fully expect my hair to thin because the nurses explained that this happens. Today, I commence cycle 3 of my chemo. I will continue with my hair regime to give myself the best possible chance of the cap working. If it continues to work, I will be really relieved and happy. I feel like whilst a lot of things are out of my control, using this cap has given me the chance to take control of, what is in the grand scheme of things, a small thing. In the back of my mind, I know that the effectiveness of the cap might change, but I feel more at ease with this now. This is partly due to a lady I met on the chemo ward. When I went for my second session, the lady sitting next to me was having her first session. My family and myself got chatting with her. She was bright, bubbly and kind. We spoke about the treatment we were both having. She is not having the scalp cooling for her hair, and when she said to me that she was going to embrace any hair loss and “rock the look,”she made a very big impact on me.  I realised that if it happens to me I have the strength to do exactly what she said. I feel like I was meant to sit next to this lady on that particular day because sometimes it is the words of somebody that you do not know that make a mark on you.
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The quote below is taken from the Paxman website and is a description about what scalp cooling offers.

“For patients, this means the opportunity to regain some control, maintain their privacy and encourage a positive attitude towards treatment.”

I firmly believe these words, because if I think back to the meeting with my professor when I was clutching my sister in complete distress at the thought of loosing my hair, the mere fact that I am using the cold cap has instantly given me a more positive attitude towards the treatment.

Using the cold cap can be worrying, but if it is something that can be offered to you, it is worth trying. It can be uncomfortable and some patients will find the cold harder to deal with than others, but the nurses go above and beyond to make you feel comfortable, like making sure you have heated blankets.image

I was anxious the first time the cap went on, and there were moments when I wondered if I would manage with it. However, I think it helped that I had made my mind up that I was going to persevere and think positively about the cooling cap, no matter how it felt. As Theodore Roosevelt once said, “Believe you can and you’re halfway there.”

Further details on Paxman’s scalp cooling and hair care products can be found on http://shop.paxmanscalpcooling.com

 

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With BRCA, knowledge is power- Laura has been featured in Ovarian Cancer Action

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Ovarian Cancer Action has posted a new article about Laura today.

“About a year ago, my great aunt in Australia was diagnosed with breast cancer. Discussions regarding the family history of breast and ovarian cancer prompted her oncologist to carry out genetic testing. My great aunt tested positive for the BRCA1 mutation so her oncologist advised her to inform family members.

You can find and read the article on the link below.

http://ovarian.org.uk/news-and-campaigning/blog/with-brca-knowledge-is-power

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My sixth chemo session – end of the second cycle

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IMG_1105I 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 tIMG_1100he 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.

IMG_1099My 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. IMG_1107

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

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You don’t have to wait to be nominated – Share a #loveyourovariesphoto now

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To help women know and remember the symptoms of ovarian cancer, Finding Cyril is trying to launch a viral campaign- the #loveyourovariesphoto. As in my Facebook post below: take a #loveyourovariesphoto, list some symptoms and nominated some friends to do the same. Every person who partakes is another person who will learn what symptoms to be wary of.

As I mention in my blogs, no more should women be satisfied with the diagnoses of IBS for symptoms that are indicators of ovarian cancer. Under the picture I have written what I put on Facebook for you to copy and paste with your photos.

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 in a post. You can also email them to findingcyril@gmail.com.

I have also included out 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.

Thank you for for your support! Cant wait to share all your photos here!

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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

Other symptoms can include:

  • Irregular periods or vaginal bleeding after menopause
  • Lower tummy (abdominal) pain
  • Back pain
  • Passing urine more often than usual
  • Constipation
  • Pain during sex
  • A swollen abdomen
  • Feeling of fullness or loss of appetite
  • Loss of appetite or a feeling of fullness in the abdomen
  • Feeling or being sick
  • Constipation
  • Tiredness
  • Shortness of breath
  • Noticeable swelling of the abdomen

 

#FindingCyril

My fifth chemo session – Halfway to surgery

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IMG_0956So 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.IMG_0982

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.IMG_0967

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!

IMG_0971I 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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My third chemo session

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Two days ago, I had my third chemo session. Remember, I have them weekly, in smaller doses, as I have scalp cooling for my hair. This session marked the end of cycle one! Cyril is realising that he is not wanted and must leave. This brings me closer to the operation, which I am also happy about. When I walked into the unit on Monday, I didn’t feel the usual fears. Even the doctor noticed how calm I was! This is because I now  know what to expect. If it were last week, I probably would have freaked about being told my iron levels are on the low side, meaning that I might need a blood transfusion next week. However, this news didn’t panic me. I’d like to mention that this is a common thing that can happen when having chemo. I will be eating foods rich in iron this week to see if that helps, and if it doesn’t then, it’s not an issue. In the words of my dad, ‘after a transfusion, you feel on top of the world. You’ll have more energy than all of us!’
My brother joined us for this session.  We played a great game, similar to articulate, where you had to describe the celebrities on the stick you picked up. We had lots of laughs and some interesting guesses were made! Thank you @JennieDallal. I also had my regular foot massage from my amazing Auntie, who comes equipped with her oils and creams. The nurses have spotted her and told her how wonderful they think she is. The foot massage takes my mind off the cold cap, generally calms me down, and as you can see from the photos, actually sent me to sleep yesterday!
My wonderful nurse also came to me. I simply adore her. She is there to talk to whenever you need (phone and email). I feel I can ask her anything. For example, I was worried about getting gel nails, as I had heard there may be risks associated with the drying light, but she put my mind at ease. She has been there from day one, (from the night I was admitted with fluid on my tummy), and she will be by my side throughout the whole journey. It’s remarkable how quickly you feel a bond growing with the team of people around you. I have already shared my pixie collection with my team of doctors. They (the pixies, not doctors) are my good luck charms. I carried one with me when I got my results and when I met the professor handling my chemo. I want each person working to make me better to have a pixie. My nurse really liked the one that I chose for her!
I know it’s now only Wednesday but I already feel ready for next Monday. I am getting used to the process so it does not feel so scary. I want to get cycle 2 going, so I can continue to show Cyril who is boss. The start of round two will mean a slightly longer session, but it means more drugs will go in my system and remind Cyril to go away!

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#FindingCyril

Spreading BRCA mutation awareness

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img_6204Today I had the privilege of meeting Caitlin Brodnick (@caitybrodnick), who is 31-year-old comedian living in New York. Caitlin carries the BRCA 1 gene mutation and made the life-changing decision to have a preventive double mastectomy. I am currently battling ‘Cyril’ in my ovaries, but my mind is made up that when I am back to full health next year, I too will have a preventive double mastectomy. My current situation makes me feel that my breasts are a ticking time bomb. When I watched Caitlin’s documentary; ‘Screw You Cancer,’ which documents her journey, I felt inspired by her story. Previously, the idea of removing my breasts seemed terrifying. Meeting Caitlin today, and seeing how happy she is with the surgeries, fills me with hope for when it is my turn to go through it. As Caitlin says, ‘they are DIY boobies!’ But these DIY boobies will take all my fears away, and as I discovered today, the constant need for a bra (so every cloud and all that!)

Caitlin spoke of growing up knowing that cancer was prevalent on her father’s side of the family, but it took her a long time to want to take the test. After finding out that she tested positive, it took her a while to comes to terms with it and decide on her next steps. I felt similar to Caitlin. When I heard that I had tested positive, I did not know what to think. I was so anxious about this news, and waiting for breast screening at age 30 did not sit right with me. I immediately went to have my breasts checked and a plan was put in place to have screening every six months. At the same time, I went to my gynecologist to have a pelvic scan and CA125 blood test, which would be once a year. My anxiety about the potential risks of this gene started to get better because I was being checked. However, in the back of my mind, I always wondered about what would show up on the screen. Lumps in my breasts were found, but thank God they were always benign.

Even though going for constant checks is frightening and leaves a nervous feeling in my stomach, I do not regret being tested. In fact, I am thankful that the BRCA 1 gene mutation was discovered in my family, because knowledge is power. It allowed me to make informed decisions about my body. Even though Cyril has hit me at an age that is very rare (most probably due to the gene mutation), I am comforted by the fact that I knew about the gene mutation and was getting myself checked. If you have strong family history of breast and ovarian cancer, I urge you to visit your GP and have the discussion about genetic testing. As I prove, it can hit earlier than the national statistics state in BRCA 1 and 2 positive people. It is a very challenging test to go through, but knowing allows you to make plans for the future and take steps to manage the risks. I had my test at Northwick Park Hospital and the genetic specialists support you through the whole process.img_6202

I also had the privilege of meeting Caroline Presho, who is head of the BRCA Umbrella group. Caroline works tirelessly to raise awareness for BRCA mutations and provides vital support to lots of people. We spoke today about the issue of misdiagnosis; the need to raise awareness amongst GPs and how women of all ages with BRCA gene mutations need to be vigilant of the risks these mutations cause. I look forward to doing more work with Caroline in the future and being part of a group that is bringing BRCA gene mutations to the public’s attention and making people stop and think.

To follow Caity’s story, please click this link to view her documentary.

http://video.glamour.com/series/screw-you-cancer

Please have the conversation with your loved ones about your family history regarding breast and ovarian cancer, and get to the GP to see if you are eligible for the testing. The links below will provide you with further information.

http://www.cancerresearchuk.org/about-cancer/causes-of-cancer/inherited-cancer-genes-and-increased-cancer-risk/genetic-testing-for-cancer-risk

http://www.cancer.gov/about-cancer/causes-prevention/genetics/brca-fact-sheet

http://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/genetic-testing-and-counselling/genetic-testing.html

#FindingCyril

Support and love from France‏

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At the start of this academic year, I created a link with a French class in France at my school. The English and French children have been able to Skype most weeks, write to each other and exchange gifts. We look forward to welcoming the French students next year! Although I have not yet met the French teacher and the children, I value the teacher as a good friend and the students feel like my students too. They have a special place in my heart.

When I arrived home from treatment two a package was waiting for me. Every French student had written me a beautiful letter. Every letter made me smile and filled me with a little more hope. I want this wonderful class to know that I will treasure these letters forever, and whenever I feel down I will read them. Their beautiful words and pictures help to keep me in the positive mindset needed to show Cyril who is boss!

Please have a look at the slide show which shows these letters. I feel honoured that the class in France is following the website, and their support and thoughts mean more to me than I can describe in words.

I have found Cyril. I have now started to show Cyril the exit. I am one lucky lady to have people of all ages fighting Cyril with me.

Thank you again to the amazing French class. I can’t wait to see you soon, and continue all the wonderful work we are doing together!

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#FindingCyril