My toolbox for treatment

On Monday 10th October, I completed part two of cycle five of my chemo. Everything went to plan, but it was a slightly longer session because I needed to have IV magnesium. This was actually quite a good thing because it meant that I could take a break from the daily magnesium drinks that have been playing games with my stomach! It was wonderful to have a visit from my fantastic friend and brilliant artist, Laura Footes. She took my mind off the cold cap and chemo by bringing in some books about some of my favourite artists for us to read. My degree is in French and History of Art and I’ve always seen art as a way of escapism. As Pablo Picasso said, ‘Art washes away from the soul the dust of everyday life.’

Spending time talking about and looking at art with Laura during my chemo made me think about sharing a few of the other things that I do to help me switch off, stay positive, stay calm and keep a sense of normality during my fight with ‘Cyril.’

  1. The power of the pixie

The first thing I’m going to mention might seem a little bizarre…Some of you may know that I’m an avid pixie collector. This collection began when I spent a year living in Old Lyon and discovered an incredible shop that sold all sorts of pixies. Over the course of the year, I built up my collection and so when I returned to London, I was overjoyed to discover a stall in Camden that also sold them. And my collection has continued to grow. Since being diagnosed with ‘Cyril,’ I’ve spent a lot of time on the Internet and found some great websites that also sell them. In fact, the other week I found myself ordering some whilst in the chemo chair! Adding a new member to my ever-growing pixie family always cheers me up and puts a smile on my face. It also means I have more choice with which pixie to place my lottery tickets under. This is a ritual that I’ve been sticking to ever since I won a nice sum of money from a ticket that I’d accidentally left under a pixie! It goes without saying that ‘Cyril’ can brings dark days, but as strange as it sounds, the pixies make me smile and smiling is important because it can easily brighten up some of the dark moments. Below I have shared photos of my collection and a photo of Old Lyon where I first discovered these pixies.

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2. Being kind to your body 

Another thing that I’ve found helpful to keep up with is getting my nails painted and other than a little break during surgery, ‘Cyril’ has not stopped my fortnightly visit to the nail bar! It’s always a great distraction to choose nail colours and designs and I feel good about myself when my nails are done. Fighting ‘Cyril’ can make you feel very different about your body and appearance, so I’ve found it helpful to do things that make you feel good about yourself and how you look. Other things that help me to feel better about my appearance are facials by my superstar auntie! Chemo can affect your skin so these facials help me to relax, but also treat and calm my skin. I’m also looking forwards taking part in a Look Good Feel Better workshop at the Royal Marsden next month. This workshop is run by a charity and offers women an afternoon of skin-care and make up tips to help increase self-confidence and self-esteem, which can so easily be affected by the changes to your body as a result of cancer and chemotherapy treatment. You can find more information on their website http://www.lookgoodfeelbetter.co.uk/.

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As well as enjoying having my nails done, I’ve also always loved shopping. I’ve always been a good (‘good’ is code for big) shopper, but since being diagnosed, buying new things to wear has not really been on my mind. However, more recently I’ve been starting to think about getting back into shopping. It can be a good pick-me-up and it certainly was this week…I decided to make my feet sparkle with some new shoes on Wednesday after I had my 3 monthly breast check-up, which I’m pleased to say showed no changes or abnormalities. I have these checks because the BRCA 1 mutation also increases my risk of breast cancer.

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  1. Mindful activity

Mindfulness exercises and colouring have also become very important to me during my treatment. Since diagnosis my colouring book and pens have rarely left my bag and are always with me during chemotherapy sessions. I find colouring allows me to switch off my brain from other thoughts, focus only on the moment, and reduce any anxiety. Another helpful mindful activity for me has been listening to music. Anxiety is something that I’ve had to get to know and understand since diagnosis. It’s not something that I, or anyone, can avoid but the important thing I’m learning is that there are ways that you can reduce it, even if it doesn’t always feel like it. There are times when anxiety makes me feel like my heart is popping out my chest, and one of the things I’ve found is that putting my music on loud is a great distraction. I can focus on the lyrics and it helps to rest my mind and make anxiety gradually fade away.

  1. The little family members

I’ve said so many times before how much I value having my friends and family around me and giving me such amazing support through my journey with ‘Cyril.’ But one of the things which has been especially important to me is having time with my wonderful nephew and niece. Children have such a unique way of cheering you up and making your heart sing. I’ve always loved being an auntie but having them around when I’ve had difficult days during this journey has been amazing. They keep me completely distracted and give a unique type of support. I’m so lucky that I get to see them so often and I love spending time with them.

This week, their mum left me and my other sister in charge of them, (foolish) so naturally we decided to give India-Rose an introduction into fashion and accessorising… As with all my family, she is even sporting a Finding Cyril band! I also have a crazy amount of videos of them on my phone, which I also love to watch when I feel low. I’ve included one below; a video of my nephew, Raphael, explaining how he recently fractured his ankle!

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  1. Trying something new

Fighting ‘Cyril’ has meant that I have quite a bit of time on my hands. When I was first diagnosed I thought about what I could do with the time. I’ve always loved creative activities, and so decided to learn calligraphy and set a goal of (with the help of my friend Laura Footes) designing and writing the wedding invitations for my cousin and his fiancé’s wedding next summer. One of my best friends got married a few months ago and I was so honoured when she asked me to use my new skill to write out the name place settings for the wedding. I’m really pleased that I decided to start calligraphy because although fighting Cyril’ has meant big changes to my lifestyle and routine, it also means that I’ve learnt something new. It has given me a positive focus and challenge.

6. Raising money and awareness

One of the main things that has kept me feeling positive is my fundraising for the Royal Marsden and raising awareness of BRCA mutations and ovarian cancer. My diagnosis at 27 is rare, and so if I can help other young ladies to be aware of the symptoms of ovarian cancer by sharing my story, then I know I have done a good thing.  Fundraising also gives me a way to give something back to the amazing hospital that is saving my life, and the lives of so many others.

  1. Netflix and box sets

I think this one is pretty self-explanatory! However, I will say that I am not naturally somebody who can sit and watch hours of TV, but after being forced into trying some box sets I achieved a personal record of completing three series of Devious Maids in two weeks! I am waiting eagerly for series four to come out, but have lots of other box sets to keep me occupied in the meantime! Who would have thought that I would branch out from Neighbours, Home and Away and Eastenders!

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So those are a few of the things that have been helping me keep focused and positive. More recently, I have started to think about the future and the idea of getting back to the things that had to take a back seat in my life since June. I think this is because I am nearing the end of my chemo and the start of my maintenance treatment. When I think towards the future, I find myself feeling a lot of anxiety, uncertainly and fear. Thinking about what mindfulness has taught me, I’m trying to accept that these feelings about the future are ok, and whilst I cannot stop these, I don’t always have to ‘go with them’ when they appear. To help me with this, I’ve been trying to use the image of a London bus. I allow myself to notice and acknowledge the fears and worries, and then imagine putting them on the bus and watching it drive away. So although I know that these worries are there, and that they will come back round, I have the choice to not always get on the bus with them. This allows me to have space in my mind to think more about the positive things to come: finishing my masters, going back to teaching and continuing with raising awareness and fundraising.

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I would be lying if I said that this always works or that it’s easy to put into practice, but it’s another way that I can feel more in control of a very ‘out of my control’ situation. I also know that in time it will become easier and so I try not to put too much pressure on myself about the future. Instead, I try to keep myself in the present.

 

A tricky week

On Monday 19th September, I was back on the chemo ward for part two of cycle four. I went through all the regular checks, and this week my veins were well behaved for my wonderful nurse! However, my blood caused her a bit of trouble when she tried to do my routine blood tests. But the incredible nurses have lots of tricks up their sleeves to solve problems. Instead of trying to fill up each vial with blood, she attached a syringe to my cannula and took all of the blood she needed. She then put my blood in each vial. Although she got a cannula in on the first go, I will still consider putting the PICC line in the future, if my veins keeping playing up.

When the doctor came to see me, we spoke about how the week had been and how I was feeling. Unfortunately, I got some news that instantly shook me. On Monday 12th September, my CA 125 was taken and it came back at 333 (this is very high). The last time it had been taken was before my operation and it was at 16. This was a confusing result because three days prior to this I had a CT scan, which revealed no sign of cancer, but some fluid on the outer lining of my right lung. She explained to me that they were going to repeat my CA 125 and depending on this result they would possibly do another scan to see what was going on. She told me that later in the day the professor in charge of my chemo would come and see me to explain more. When he came to see me, he explained that they thought the CA 125 reading was high because of a plural effusion that I had developed after my operation. He explained to me that a build up of fluid that is not cancerous could cause a CA 125 reading to increase. He told me that we just had to wait for the new CA 125 reading the next day, and if it had decreased there would be no need for a repeat scan.

If I am being wholeheartedly honest, in a split second the mantra about accepting bumps along this road, that I have tried so hard to follow went out of the window. I was in complete disarray. All I could think of and say were negative things, and no matter what people said to me, I found it very hard to bring myself back to a clear state of mind. However, with the support of the medical team, my family, and my friends Chloe and Rosie, who visited the chemo ward during their lunch break, I managed to calm down and focus on having my chemo. On Tuesday 13th September, I got good news from the chemo ward! My CA 125 had gone down to 192, and the increase in this level was due to the plural effusion as suspected. There is no need to repeat my CT scan and my chemo is going ahead as planned. My CA 125 will be checked each week.

Time to get back to chemo. Once my bloods came back, my cooling cap was prepared and my chemo got underway. I had to stay two hours extra because I was low on magnesium and the doctor wanted to administer intravenous magnesium. I had my usual foot massage, and it was wonderful to spend time with my friends Chloe and Rosie, who as I said gave up their lunch breaks to be with me on the chemo ward. After a slightly longer session, it was time to head off home and put my feet up.

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As I mentioned at the start of this blog, the good news about the CA 125 level came on Tuesday 20th September, so I did find myself getting very anxious until the phone call came. Once I had heard the good news, I could breath a sigh of relief. By way of celebrating this good news, and given that I was feeling well, I decided to go out to a local restaurant with my dad for some lunch. This was a huge thing for me to do because I had never gone out the day after a chemo session, apart from once when I had to go back to hospital for a blood transfusion and a CT scan. Whilst we were out, we met my friend Rosie’s wonderful grandma (see the photo below), who is a super star at selling Finding Cyril bands!

Unfortunately, when we got home I started to get hot and cold and my temperature went up. This meant a visit to A and E because when you are on chemo you have to be checked if your temperature is 38°C or more. I am sure I am speaking for everybody when I say I hate going to A and E, and this just felt even worse after having such a wonderful morning. My dad and my amazing cousin David, who is like my big brother, came with me. My blood tests and X-Ray were normal, but the decision was made to treat it like an infection. Therefore, I was given intravenous paracetamol, intravenous antibiotics, fluids and then sent home with more antibiotics. We ended up being in A and E for seven hours because they would not let me home until my heart rate lowered. I am known to have a high heart rate, but for some reason it seems to go through the roof when I visit A and E! As you can see below I documented the A and E visit with a photo!

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This visit to A and E took me back to the 3rd June. On this day, I made my second visit to A and E where a CT scan revealed a concerning swelling on my right ovary. This memory came back to me because as was lying in the cubicle opposite the one that I was in on the 3rd June. As I was lying down being given fluids, I was looking at the other bed and recalling the anxiety, fear and pain I felt after hearing the CT scan result and waiting for my transfer to the Royal Marsden. Being opposite this bay (see the photo below) spurred me on to enquire about the amazing nurse who looked after me that day, and came with me when I was transferred to the Royal Marsden. It only took asking a few nurses to find her, and on Friday 23rd September I got to talk to her on the phone! There has not been a day when I have not thought about this nurse. She comforted me from the moment the scan result was revealed. She came with me in the cab to the Marsden and held my hand the whole way. I will be forever thankful to her, and she will always have a very special place in my heart because of the care and compassion that she showed me at a very difficult time.

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So this week has been a real challenge for me physically and emotionally. I had the worry about my tumour markers, a visit to A and E, I am a lot weaker from chemo, I am full of mixed emotions and I am still recovering from my operation. This has all contributed to my anxiety levels rising this week (I can sense it because my heart constantly feels like it is popping out of my chest!). To deal with this anxiety I have taken it very easy. I have had two amazing facials by my auntie Roz, and I have had a wonderful reflexology session at Chai Cancer Care. Messages of encouragement from friends and family have also boosted me (as they always do).  Below you can see some of the beautiful photos that my friend Anna sent me from Italy that instantly put a smile on my face, and a photo from cousin’s fiancé Gemma showing me how well she is doing with selling her Finding Cyril bands to help raise funds for the Royal Marsden! These things have helped but I have still found myself panicking when the thermometer goes in my ear because I worry that I will find myself back in A and E. However, the antibiotics seem to be kicking in!

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As I move into next week, I hope that I will have more ups than downs, but I need to keep reminding myself that these ups and downs are normal when fighting ‘Cyril,’ so if a low moment occurs I have to accept it, allow it to happen and then find ways to deal with it, just like I tried to do this week. I have to remember that ‘Difficult roads often lead to beautiful destinations.’

Everybody needs good neighbours…especially when recovering from surgery.

Being at home after surgery has had its ups and downs; both emotionally and physically, but I do believe that being in my own surroundings has pushed me forward in my recovery. The way that I’ve been trying to manage is by taking each day as it comes. I find it helpful to have routine. I’ve been keeping on top of my medication, trying to walk a little more each day, and doing my physiotherapy exercises. I have also started working with a physiotherapist from Chai Cancer Care at home, which has helped me become more confident and motivated with my daily exercises.

Eating has been a gradual improvement and I’m now able to manage more food and bigger portions again. I’ve been able to get back to my usual weird mix for breakfast: kiwis, eggs, bananas and pancakes. Diet is a really important focus for me because I want to be preparing my body for restarting chemotherapy.

I’ve tried to keep things as quiet and relaxed as possible at home – I’ve had lots of relaxation time and with the help of my auntie, two wonderful facials. My skin really needed this after a week in hospital!

 

The texts, emails and phone calls from family and friends have also helped to push me forward in my recovery. The encouragement I get from everyone reminds me that I am strong enough to deal with what I’ve been through, and what I’m still going through. And the support has come from people of all ages. This includes my three year old nephew (see the video below), and two of my young neighbours baking very tasty brownies for me!

I’ve also had some words of encouragement from some celebrities. For those who know me well, you will know that I have been an avid Neighbours and Home and Away fan for as long as I could turn the TV on. I will never miss an episode, especially now that I have quite a bit of time on my hands. I’ve even been known watch episodes on my phone when I can’t get to a TV. So you can imagine my excitement when I received signed cards and messages from some of the Neighbours cast, who had taken the time to read my blog, learn about my experience with cancer and what I am trying to do to raise awareness. It’s made my week and I’m fully intending to take them up on their offer to meet them all once I’m well enough to travel to Australia!

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Emotionally and physically I’ve been up and down, and I’d be lying if I said that ‘Cyril’ hasn’t tested me since being home; probably more than it ever has on this journey. I have had my moments where I’ve cried, sometimes not even knowing why, felt in pain, angry, sad and happy. However, I kept to the promise I made to myself; I look down at my scar and no matter the emotion, I’m spurred on because my scar reminds me that I’m surviving.

I can’t quite believe that time has come already but I am starting back on chemotherapy tomorrow. Do I feel ready to begin cycle 4? The answer is yes. Am I anxious? Yes. Tired? Double yes. I’m worried about how I will find having the chemo treatment and side effects now that I have gone through surgery and am still in recovery mode. But in the words of Franklin Roosevelt, ‘When you come to the end of your rope, tie a knot and hold on.’ So I’m going to tighten my grip and hold on tight, as I start the next phase of recovery.

On 10th September, I took my first proper trip out with my sister. There really was only one thing I wanted to do…get a manicure! I had my nails painted and I opted for a more personalised style than normal to match the #FindingCyril wristbands.

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These bands are a sign of support for the amazing work The Marsden does. They cost £2 each and proceeds go straight to the Royal Marsden. You can donate on the Just Giving Page or by texting FICY58 £2 to 70070. Please get in touch if you would like one.

Finding Cyril has so far raised £5,538.07 for The Royal Marsden which is just beyond amazing! I want to take this opportunity thank everybody who has donated. I find it hard to express in words just how much it means to me. The Marsden are providing life-saving and amazing treatment on a daily basis. Treatment which I’m still receiving and will be for quite some time. I’m determined to raise as much money as I can, and so the support that people have given, and continue to give, means just so very much. So thank you.

So it’s more resting and relaxing for me to prepare for chemo tomorrow. Which means back to my Monday routine of scalp cooling, card games and foot massages…

 

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So I’ve had my surgery…

IMG_1984On Wednesday 24th August, I woke up a lot earlier than usual because I was due at the Surgical Admissions Unit at the Royal Marsden at 7am. It was the day I had been nervously waiting for; my surgery day. I was feeling anxious, frightened and confused, but I knew that the surgery was the next important step in my journey, and the only way to say goodbye to ‘Cyril. 

Despite my fears, I knew that my chemo had prepped my body really well for this day. Also, it was comforting to hear that the dietician felt that I was going into my operation well nourished, which was not only important for my body during the operation, but also for my recovery. Since diagnosis, one of the main ways that I have been looking after myself is through food. I have made sure that I eat all the right things to keep my weight up. I’ll give you an example – my daily breakfast has consisted of three boiled eggs, two kiwis, a banana and some mango. It has sometimes felt like a huge challenge, but has meant that my body has been getting exactly what it needs. I don’t eat meat so eggs are a good source of protein for me. My dietitian told me that there is no problem with having more than two eggs a day, and she also taught me that eating kiwis with eggs helps my body to take in more protein from the eggs. It’s no secret that I cannot cook, and that I’m rarely allowed anywhere near a kitchen, but I guess since being diagnosed I can now offer people healthy eating tips!

 Once admitted to the surgical unit, my consultant and his team came to see me. The plan was to go down to theatre for about midday. I then met the anesthetist. AI mentioned in my previous blog, one of my biggest worries was general anaesthetic, because I’d not had one since I was a child. I had this fear of waking up mid operation. My anesthetist was incredible, and when I met him, I instantly felt less worried about this. He told me that he knew about my website and had been reading my blog as a way to get to know me. So he already knew about my worries and was able to reassure me so much – I cannot thank him enough for this. 

IMG_2030At about 10am, the nurse on the ward came to tell me to stop drinking water and to get changed into my gown. I had a lorazepam tablet, which helps with reducing anxiety, and got changed into my very fashionable surgery outfit, hat and (very hard to get on) socks. It turned out there was little time to wait, because not long after, I was told by my nurse that the team were ready for me earlier than planned. I had enough time to get my sister to help me with my plan to write a message for the surgical team across my stomach with my eyeliner… It only seemed right to bid farewell to ‘Cyril’ in French because of my love of the language! I hugged my dad and everyone else, and was then taken down to theatre. Because I’d taken a lorazepam, I wasn’t allowed to walk down, so had to be wheeled down in the bed. This made getting down to theatre less frightening. My sister, auntie and boyfriend came down with me and said goodbye at the theatre doors. After more hugs, I was wheeled into a small room that led onto the theatre. Soon my anesthetist came in and was just really calming. He asked where I’d like to go holiday. My response was the Peloponnese in Greece because that’s where Jonny and I were meant to go this summer. He then started to do something with the equipment and all I remember is that I asked him whether it was going in, and hearing him say, “Yes.” At this point, my job was over and would start again in recovery. 

The operation took about seven hours. Some of my family stayed near to the hospital for the whole day. My sister, Davina, kept a diary for me of their day waiting because one of the things I found hard to get my head around was the idea of loosing a whole day and having no idea about what was happening. It was really helpful to read it after so I knew what had been going while I was dreaming about the Peloponnese!

Once I was out of surgery, my consultant met with my family to update them and let them know that surgery had gone really well. My dad and aunt were able to see me briefly in Critical Care. I was sedated and intubated at this point so I have no memory of this. However, I do know what I looked liked, because before surgery I made my dad promise to take a photo! 

Fast forward to Thursday 25th August – I could not tell you what time. The first thing I remember was opening my eyes and it being really dark. I had no idea where I was or why I couldn’t talk. I heard a very sweet and calming voice explaining that she was my nurse and that I was in Critical Care. She told me to stay calm and that the tube in my mouth would come out when the doctor arrived. She also told me that my dad had telephoned and we would call back soon so that I could say hello to him. Before I knew it, the tube was out, I was put on oxygen, the lights had come up slightly, my nurse held the phone to my ear, and I heard my dad’s voice. It was at this point that I remembered that I’d had the surgeryMy nurse gave me a bed bath using wipes, changed by gown and helped me to brush my teeth. I was becoming a bit more alert and my consultant and his team came round to tell me that everything had gone well and that they would be back later on once I was more settled to explain things in more detail. 

IMG_2208My boyfriend Jonny and my sister visited that morning – it was wonderful to see familiar faces. We spoke for a little while and then I started to feel very sleepy. When I woke up I had a new nurse looking after me. She explained that the physiotherapist would be coming to see me. She combed my hair and fashioned a hair tie out of a hospital glove (that’s right, a glove!), which made me feel much better and dealt with the interesting bed hair situation! 

The physiotherapist explained the goal for that day was to sit at the end of the bed and do exercises to move my legs. I thought that there was no way that I would be able to do this so quickly but was proved wrong! With her help, I managed to roll over and lift myself up so that I was sitting on the side of the bed and was able to move my legs. My sister was able to stay with me for this, which was great because knowing she was there spurred me on. It was also the first time that I could see around the bed and look at all the machines and drips I was attached to. After a few exercises, I started to feel nauseous so with a lot of help and a very useful sliding sheet, I was put back into a lying position and had another much needed sleep.

Later on, more family visited but only for short periods and two at a time. I was still quite dazed but it was wonderful to see more familiar faces. Just knowing that they were there comforted me and gave me strength

My consultant and his team came back in the afternoon and I was more alert to hear about the operation. They explained that they took out all signs of visible disease; lots of which was ‘burnt out’ disease because the chemo had worked so well. They also mentioned the message on my tummy and how much they liked it! 

Critical Care have specific visiting hours, so by the end of the day my family had left, but my dad stayed with me until 8pm. He held my hand, spoke to me and encouraged me. He helped to get me settled for the night and make sure I had earphones in so I could watch some of Eastenders on the TV. I’m not sure that I really paid much attention but it was a nice distraction because Critical Care can be a noisy place. I found it hard to sleep that night because of the pain but the team there are amazing. They just seem to know how to make you comfortable, both mentally and physically, and I did manage to drift off at some point. I also had a patient controlled analgesia button (PCA), which meant that I could respond really quickly to the pain that I was feeling. 

On Friday 26th August, I woke up feeling a little more comfortable. Up until this point I had only been allowed water, but it was a special morning because I was allowed apple juice! The first sip was just incredible. It may sound like a very small thing to be excited over, but recovery from surgery is like taking lots of small steps and when you’re doing it, each one feels like a massive achievement. My consultant came round and examined me. He was able to hear small bowel movements so told me I could start to try eating soft foods, if I felt that I could.  

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It was soon time for my second physiotherapy session, and this time the plan was to walk! I doubted myself again, but I had my dad, sister, nurse and physiotherapist spurring me on. Despite being attached to several things, I managed to walk in the corridor for a few minutes and then out onto the veranda behind my bed. Breathing in the fresh air was amazing, but all the exercise was overwhelming and exhausting. When I went back to bed I fell into a deep sleep for two hours. I remember thinking, ‘How have I just been walking one and half days after major surgery?’ Looking back I know the answer. It was down to my determination (which I didn’t feel that I had at the time), my family supporting me, and also the reassurance and encouragement from the physiotherapist and my nurse, whom I had complete trust in. 

That afternoon I woke up to more family visiting: my sister Tara, brother in law Chris, and cousin David. For me, seeing the faces of everyone encouraged me to stay motivated and move forward with recovery. It also was a really good distraction. That day I attempted some food. My sister fed me some tomato soup and then a little bit of ice cream. Again another small step, but a great feeling to be able to do it! 

I had a chest X-ray in the day, which had showed a small pocket of air (pneumothorax) on my right lung, which I learnt can happen after surgery. It was partly why I was finding it quite hard to breathe, but the team felt confident that this would resolve on its own, so it was agreed that I was ready to be discharged from Critical Care and transferred to the ward. So I was off into the hands of another wonderful set of nurses. My consultant came to check up on me that evening and it was decided that I would have a blood transfusion overnight as my iron was low. One of the main things that made me feel safe in hospital is the close monitoring and amazing speed at which issues are investigated and plans put in place.

IMG_2040On Saturday 27th August, I woke feeling as though I had lots more energy – which was thanks to the transfusion. I still had very little appetite and my tummy was quite bloated because my bowels had not started working again. This is a very common effect of anesthetic. It was great to have visitors that day, but I also needed lots of rest and had to save my energy for my walking. My wonderful nurse got me up and walking around the corridors of the ward along with my myriad of medical attachments!

Sunday 28th August was another step forward because I had my catheter and central line taken out. Having the catheter out meant that every time I needed the toilet I had to (with assistance) get up and walk. This was a good thing because it meant more exercise, which is so important after surgery. Although I felt quite good in the morning, one of the things I’ve learnt about recovery is that things change very quickly, and by mid-morning I started to feel sick. I was vomiting and had developed a temperature. My first instinct was to view this as a setback, and when you’re already feeling weak and tired it’s sometimes really hard to feel motivated. However, ‘a setback is a chance for a comeback,’ so with this is mind, when the physiotherapist arrived and asked if I still felt up to walking, I didn’t think twice. 

I felt awful for the whole of that day, but I tried to remain as calm as I could, and tried to remember that on the days when I didn’t feel well, my body was continuing its boxing match against ‘Cyril,’ and perhaps this bit was just a slightly tougher round. 

My consultant made some changes to my medications that day. He stopped the pain control buttongave me a drip to replenish my electrolytes, introduced new pain medication and also administered some medication to help get my bowels moving. Also, having my aunt’s massages again was such a help with trying to rest that day. By that evening, my bowels started to kick back into action, and the result was a lot of exercise in going to and from the toilet! 

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On Monday 30th August, I woke up feeling as though I had less energy, but my stomach felt so much better. My consultant came to see me and was so impressed with the good results overnight. I thought I was hearing things when he asked me how I felt about going home the following day! I was so shocked because the initial plan was to be in hospital recovering for up to three weeks. However, things just seemed to progress quicker than anybody, (including my medical team), expected and he explained that one of their aims is to get people home to recover as quickly as they can because there’s a higher risk of infection in hospital. I felt anxious at the thought of being away from the doctors and nurses who were making me feel so safe, but also so excited thinking about being back in my own home. I spent this last day in hospital resting and also took my first proper walk outside with my dad and brother, Josh. It was so wonderful to have a change of scenery from the hospital room and breathe in the fresh air! 

On Tuesday 31st August, I had another chest X-ray that showed that the pocket of air on my lung was improving. That morning my sister visited and helped me get ready to go home. This felt important for me because I wanted to leave feeling as good as I could. She helped me to wash my hair, get dressed for the first time and paint my nails. Those of you who know me will know how important painted nails are to me, and because I had to have all nail varnish removed before surgery, this was an important goal for me to get to!  Unfortunately, because I have to wear lovely surgical socks for a month, my pedicure will have to be put on hold! However, given English weather at this time of of year, this might not be an issue! 

I saw my consultant again, went through all my medications with the nurse and the plan for managing these at home. My consultant reiterated how amazed he and his team were at how quickly I was able to leave hospital which made me feel so encouraged. Getting to the point of being able to be discharged was very emotional for me because in my mind it took me back to Friday 3rd June when I was first admitted to the Marsden under investigation. It made me think about how just how far I have come. This time I wasn’t leaving the hospital with the fear I had waiting for the diagnosis, but instead knowing that the surgery had taken me one step closer to hopefully saying goodbye to ‘Cyril’ forever. 

IMG_2129I’m now back at home continuing to take each day as it comes. I am also being very organised with my medication and protein drinks! It’s only been a few days so far, but I’ve already gone through so many emotions and ups and downs. I’ve laughed, cried, felt happy and felt sad. I have points when I feel physically different about myself, and I have times when I feel pain (physically and mentally). I have to keep reminding myself that this is normal and all part of the healing process. I know that the next few weeks will be hard but there are lots of things in place to support my recovery. 

I will be working with a physiotherapist at home thanks to the wonderful support offered by Chai Cancer Care. This will help me to strengthen my muscles and areas of my body that are weaker at the moment. 

Also, my team at the Marsden will be supporting me with understanding and coping with changes in my body because of now starting menopause. It’s still a really confusing and hard thing to make sense of at the moment and especially when I think about doing this at 27. It’s going to be a hard journey but for now, just knowing that there is support for me as I start this journey, is making me feel more at ease. 

The other thing I’m starting to now have to deal with more than I was before is not ever having children of my own. At the moment, this is bringing up all sorts of emotions for me and I have to allow myself to feel this sadness. However, as I have said before, I must try to remember that there is more than one way to become a mother. I know that support is there for this too and I must call upon it when I’m ready. 

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The support that I have, and continue to have, from family and friends is such a help with recovering from my operation. They help me with something physical that I can’t do, eating healthy food, doing physiotherapy exercises with me and even just sitting and laughing with me. It is so helpful having family and friends sending me texts to make me smile and continue to push forward, or just reminding me that I’m in their prayers. 

When I stop and think about it, I cannot quite believe that I have been able to come home so quickly. I had a major operation on the 24th August, and my body ended up getting itself to the correct place so that I could leave hospital only six days later. There are so many people that I am thankful to for this. My consultant, his team and all of the surgical team, the Critical Care Unit, the ward nursing staff, the physiotherapists, my family, friends, and also myself and my own body. Back in June, I was harbouring a lot of anger towards my body because I felt it had failed me for allowing ‘Cyril’ to enter. As chemo progressed I started to feel a bit different and see that my body was now protecting me and fighting ‘Cyril’ with me. My body’s greatest test was surgery, and it has coped really well. I’m also so thankful for how my body has helped me start to recuperate quicker than expected from my operation.

Since being home, I’ve been back for a check up with my consultant and he took my bandage off to reveal the coolest scar on my tummy, which I will always wear with pride!  know that the next few weeks and more might feel like an emotional roller coaster, as my body continues to recover. But when I feel low, I am going look down at the scar and remember that my body and I are surviving stage 3 ovarian cancer. I know that this will help to push me forward, regardless of whether I feel happy, sad, angry, scared, unwell, weak or tired.  Why look at a scar to help in low moments? Keynote Speaker, Dr. Steve Maraboliexplains this well… 

‘My scars tell a story. They are a reminder of times when life tried to break me, but failed. They are markings of where the structure of my character was welded.’ 

There is a lot of truth in these words for me because my fight against ‘Cyril’ is making me stronger as a person, even when I don’t know or feel it

Back on the 3rd June ‘Cyril’ on my ovaries was suspected. On the 9th June, ‘Cyril’ on my ovaries was confirmed. Then followed nine weeks of chemo. On the 24th August I said, ‘Au revoir’ to the parts of me that had been infected by ‘Cyril’. Now I am building up my strength ready to fight any remaining ‘Cyril’ with more chemo. 

Writing this and reflecting on the huge events of the past week has reminded me once again just how lucky I am, and it makes me more motivated with my aims for #FindingCyril. I have so many people who are loving me and supporting me through my journey, which makes it all that bit easier. This is why I am adamant that I want to find ways to continue to be somebody who loves, supports and guides others going through this journey, now and forever. 

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Its been a good week

IMG_1778I 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.

IMG_1709I 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.

IMG_1691On 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!

IMG_1568I 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!

image1For 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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My eighth chemo session

IMG_1344This 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!

IMG_1341I 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.

IMG_1338Eleanor 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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Eyebrow & eyelash care during chemotherapy

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

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

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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Getting to know Laura; Her friends perspective – A guest article by Jess Millett

image3When Laura told me about her diagnosis, I was devastated. I could not think of a less deserving person. Having never smoked, never drank alcohol (apart from that one time at Oceana in second year 😉 ) Laura was the healthiest person I knew. Her dentist even told her to stop eating so much fruit at 15, at a time when most kids were cramming their bodies with junk food and alcopops. But Laura has never been one to dwell on life’s lemons.

You see, Laura is incredibly special. She touches lives and never does anything by halves. She sees the finish line in the distance but on crossing the line, she continues going for a second lap – not to gloat or boast but simply because giving 100% is simply not enough for her. This blog is that second lap. Instead of taking her diagnosis on board and working on her health and happiness, she has taken ‘Cyril’ and created something so incredibly powerful and inspiring.

I have had the absolute pleasure of knowing Laura for the majority of my life. We met in Turkey and on discovering that we lived one street apart and that Laura was to join my school that September, we quickly became inseparable. Laura describes her first day at school and how I coaxed her out of her Dad’s car. It is not a memory I remember but I do recall countless walks home from the bus stop, endless gossips and teenage giggles. Over the years, we went our separate ways. Laura moved house and I moved school. It wasn’t until our final year at the University of Birmingham that our friendship was cemented, moving into a three bedroom mould-ridden, filth-infested house in Selly Oak – Jewish Princesses, we were not.

It is here that I got a glimpse of this determination that had been developing over the years. One of four siblings, Laura gave as good as she got in that dusty old house in Birmingham, retaliating to practical jokes, putting up a fight and standing her ground. It became clear to me while we were at university that instead of scratching the surface, Laura would dig for Australia. It’s a determination that only being part of a large family can give you and she puts it into everything she does. image1 (1)

On graduating, this strength and determination only grew. Not satisfied with being a teaching assistant, Laura gained experience by working at a school for children with learning difficulties. Not content with a PGCE, Laura threw herself into a Masters and today, Laura heads up the French department in a primary school, revolutionising the way French is taught.

Like all of these huge accomplishments, kicking ‘Cyril’ off her ovary is not enough for her. Laura wants to change the way women view their bodies. She wants us to get talking to our family and find out our medical history, get checked if there is a cause for concern and raise awareness for a type of cancer difficult to diagnose.

The last month has been an emotional rollercoaster, not just for Laura but for all those who love her and it will continue to be tough but for every bad day, let’s make sure there is one person out there getting tested for the BRCA mutation, putting them in control of their destiny.

#FindingCyril

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