Tag: women’s health

BRCAfest update!

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On 9th April, BRCAfest is taking place in Mill Hill. As well as having our raffle, we are also going to be having an auction on the day.

We have wonderful auction prizes.

1) accommodation for one week in Quinta Do Largo in the Algarve

2) a signed goodie from Jessica Ennis

3) two signed framed framed football shirts. One by Gareth Bale and the other by Juan Mata.

To be in with a chance to win these incredible prizes buy your tickets for BRCAfest now! Use the link below to purchase your tickets.

https://www.eventbrite.co.uk/e/brcafest-tickets-32137050784

Remember this event is going to spread vital awareness of BRCA mutations, hereditary cancers and the incredible work that the Royal Marsden does.

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Happy birthday to me!

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Today marks my 28th birthday and so it feels like an appropriate time to update Finding Cyril with a new blog. A lot has happened since I found that I was in remission on 16 November 2016. I have adjusted well to my three weekly Avastin treatments, I have started to go back to school, I feel able to go out and do more things, and as a result, have met some really lovely new people. It goes without saying that I have good and bad days. And then there are the days when I can experience what feels like every emotion under the sun in the space of a day. 

 It is hard to put into words what I am feeling on my birthday this year. It’s a real mix of emotions, thoughts and feelings. I thought I would try my hand at poetry as a way of expressing some of it. I’m no poet but here goes!

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The thing that comes to mind most of all today is how grateful I am to my team members who are helping me in my current boxing match with ‘Cyril’ (the match where the goal is to remain the champion). My team includes: my medical team, my Avastin treatment, my family and friends, my dog Oscar (concerning that I’ve just realised he has not been mentioned in this blog thus far), Chai Cancer Care and every person who has and continues to support Finding Cyril raise awareness and funds for the incredible Royal Marsden. Thank you all – you really have made this birthday one I’ll never forget. 

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Angels in comfortable shoes

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I have spoken many times about the incredible medical team that looks after me. It consists of so many amazing people, but I wanted to write specifically about one group of people who are so integral in the supporting patients through their cancer journey: the nurses. As a patient, you end up meeting so many nurses: at chemotherapy, during inpatient admissions or at outpatient clinic appointments. Every nurse that I have met at the Royal Marsden has left a mark on me – and I don’t just mean at the site of my cannula! So to try and explain more, I’ve written about my experience of nurses from when I was diagnosed, throughout my chemotherapy and surgery and as I continue on with my treatment. 

 Diagnosis

On the 3rd June 2016, I entered the Royal Marsden for the first time clutching the hand of an A&E nurse who had decided to travel with me from Barnet hospital. She had made the journey with me because she saw how distressed and overwhelmed I was. When we arrived, I was met by an extremely caring nurse who did everything she could to make me feel calm whist I waited for the consultant to arrive. I always remembered her and how much she tried to put me at ease. Months later, on the 7th November, I was having my final chemotherapy session which had overrun as I needed a blood transfusion. The chemo ward was closing and so I was moved to a general inpatient ward to finish treatment. Unbeknown to her or me, she was my nurse that evening! It was such an emotional reunion; I was able to update her on how my treatment had gone and tell her that I had succeeded in kicking ‘Cyril’ out of the boxing ring! This nurse put my first Marsden cannula in, and it seemed quite fitting that she took the cannula out from my final chemo session (shown in the photo below).

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 Chemotherapy and day treatment unit nurses 

I had eighteen sessions of chemotherapy and it did not take long for me to get to know all the amazing nurses on the chemo ward. They are always smiling, eager to know all about the things that you have been doing between sessions and always there to comfort you. They make you feel like a person and not just a cancer patient. The care they give you is nothing short of incredible.  For me, I always remember the small things: how they would take time to prep my hair for the scalp cooling, explain complicated medical things in a way that makes sense (even after I had asked them the same question numerous times!), make sure you are comfortable, warm enough, cool enough, hydrated and not hungry. They’re also always ready to have a laugh with you. I can think back to so many funny times when I had my pre-meds which would make me feel slightly drunk or make me wriggle in the chair because one of the pre-meds causes an itchy bottom! I still have my treatment every three weeks on the ward so still get to be looked after by this wonderful nursing team.

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 Inpatient ward nurses 

I also met many different nurses when I was admitted to hospital for my surgery.  I clearly remember the nurse who looked after me in the surgical admissions unit. He was amazing at keeping me calm when I was possibly the least calm I’ve ever felt. I obviously never met the nurses who assisted my operation, but I know from reading and talking with my consultant what an important role they have in theatre. Throughout my stay in Critical Care I was cared for so well. I remember waking up on the unit after surgery and knowing that I would be ok when I heard my nurse’s calming voice. Every nurse I met in this unit made me feel incredibly safe in the initial post operation period, which can seem really frightening at times. Again it was the small things: helping me to keep clean, doing my hair (without a hairband…one nurse managed to fashion a hairband out of the top of a surgical glove!), making sure I was comfortable with pillows, helping me to slowly start drinking fluids and just holding my hand and encouraging me when I was in pain.

 When I moved of the unit on the general ward the nurses were also brilliant. Each stage of your recovery requires something different and they seem to know just what you need to get you through it. The ward nurses were reassuring but also very encouraging; if they thought I could do something on my own they would help me to do it rather than do it for me. They helped me have a shower for the first time and were so encouraging with my rehab. After surgery one of the goals on the ward is to be able to get your catheter removed as soon as possible and use the bathroom instead. This obviously involves walking, which after surgery, is much harder than you can ever imagine. My nurse would keep encouraging me to walk just that little bit more each day because she knew I could get to the point of having it removed…which felt like such a big milestone. I also was so grateful to be able to talk to the nurses – they have so much experience that I always felt like they understood what it was like when I feeling low or having a bad day.

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Clinical Nurse Specialist 

 At the Royal Marsden you are also assigned a clinical specialist nurse who is there to support you throughout your journey. I met my nurse on my first night in the Royal Marsden back in June, and I know that she is always there when I need her. After my operation it was so helpful to talk through all of the possible symptoms of menopause with her, some of which I had never even considered before then. After having this conversation, I remember feeling a lot calmer about menopause because I knew what to expect. It’s also reassuring to know that there is someone on the end of a phone or email who you can contact with a question or worry. 

 So there’s a brief look at how the nurses at the Royal Marsden who have been, and continue to be, such an important part of my journey. They hold a very special place in my heart. As a patient, I’ve found that you never forget what the nurses say, what they do and how they make you feel. I would like to take this opportunity to thank, not just nurses that I have come in contact with, but to nurses in general. 

You may have started reading this blog and wondered about the title. When I was reading up on the role of nurses I came across the idea and it just seemed to completely fit with my experience of them. ‘Angel’ is one of the best ways to describe nurses. And the comfortable shoes…well if you’ve got to the end of this you will hopefully understand just how much nurses do in a day – even angels would get sore feet.

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Be BRCA aware

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 I remember the day when I answered the phone and received the news that I carry the BRCA 1 gene mutation. It is a really clear memory for me. I was midway through marking my Year 5’s reading comprehensions. Hearing that I had tested positive, somehow felt as though I’d been told that I had cancer. I didn’t know quite what to think or how to feel. What I was sure about though was that I couldn’t wait until I was 30 to start screening my breasts; I needed to do something proactive straight away. So I took control. I started to have my breasts screened every six months and my ovaries and CA 125 level checked once a year. I only ended up having this check of my ovaries once before I was diagnosed with ‘Cyril.’ Below is a photograph of my siblings and I. I am the the only who inherited the BRCA 1 mutation. 

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I never ever imagined that I would be diagnosed with ovarian cancer at 27, because all the statistics indicated that, even with the BRCA mutation, the risk of ovarian cancer only increases later on in a woman’s life, usually past the age of 40. I think this was part of the reason why I held a lot of anger towards my body when I was diagnosed. I let go of some of this anger when I discovered that the BRCA 1 mutation would actually be one of the things to help me fight ‘Cyril.’ When I was diagnosed, my oncologist told me that patients with a BRCA 1 mutation are often more sensitive to platinum-based chemotherapy. 

Throughout my journey with ‘Cyril’ so far, one of the most important things to me has been raising awareness of BRCA, the testing process and the chance to take preventative measures. After the initial shock, learning that I carried the BRCA mutation for me very much felt like I was in control and that ‘knowledge is power’. In keeping with this idea, I wanted to share an article that I read a few weeks ago in The Jewish News. 

The article was about The Venus Project – a photo exhibition that is a joint collaboration between BRACHA (an Israeli charity focused on raising awareness about Hereditary Breast and Ovarian Cancers), British artist David Scheinmann and London based curator Tamar Arnon. The exhibition aims to raise awareness of hereditary breast and ovarian cancer, BRCA testing and the ways to reduce the risk of these hereditary cancers. I have included a description of the exhibition below:

“The exhibition shows 20-30 photographs of different sizes, two video installations and a book featuring healthy BRCA mutation carriers, previvors – healthy carriers who underwent risk reducing surgeries, young breast cancer survivors, a man who is a BRCA mutation carrier and two women with ovarian cancer – one of them, Sigal, has sadly passed away 6 months ago.”

The exhibition is a really unique and beautiful way to remind BRCA mutation carriers that ‘knowledge is power.’ I’ve put a few images below taken from the Scheinmann’s website: 

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To see more images from the exhibition have a look at the the artist’s website:

http://www.davidscheinmann.com/photo/works/Pages/The_Venus_Project.html. 

Reading this article led me to want to find out more about what the Royal Marsden has does within the field of BRCA testing (I had my testing done over a year ago and through another genetics service). 

The Royal Marsden have developed a pathway that aims to ensure that more breast and ovarian cancer patients are able to get BRCA genetic testing at the Royal Marsden, rather than needing to be referred to a separate clinic for this. Increased access to testing also means that family members who may have inherited the genetic mutation can then also get tested and have the chance to make choices about their bodies.

The Royal Marsden Translational Genetics Laboratory has also been a crucial development within the field of genetic cancers. It allows cancer patients to have access to the latest genetic testing, providing greater understanding about their cancer and therefore allowing for more individualised treatment plans. Genetic testing remains restricted due to cost and the resources needed, so at present, the focus is on breast and ovarian cancer patients because of the known high prevalence of causal genes (i.e. BRCA), which can determine effective treatment. However, the eventual aim of this work is for all patients at The Royal Marsden to receive a genetic test as part of their diagnosis. A significant part of the funding for the laboratory came from supporters of The Royal Marsden Cancer Charity. 

Knowing about BRCA mutations means that that more and more people can then make choices about their bodies and health, for example with the options of surveillance or risk reducing surgery. For me, knowing more about all the pioneering work that is going on at the Royal Marsden adds another layer of importance to those images from the Venus Project exhibition. The images of the BRCA carriers showing scars following cancer surgery is such a poignant reminder of how important it can be to know about your BRCA status at the stage of diagnosis. Equally, the images of previvors (healthy carriers who underwent risk reducing surgeries), are also a reminder about how, thanks to pioneering research, more and more women are having the chance to take control of their health and make decisions about their body before cancer does.

On my cancer journey so far, I’ve had to come to accept that unfortunately ‘Cyril’ was probably always going to be part of my destiny. However, I feel so very grateful that I was already aware of my BRCA status when I was diagnosed. It meant that in some way I was able to hold onto a tiny thread of control in what was a very ‘out of my control’ situation. It also meant that my team had the best understanding they could about my cancer and that my treatment plan was made with this in mind. I feel so proud to know that centres such as The Royal Marsden and others across the world are working hard to ensure that genetic cancer research is on-going and that more and more individuals can have the chance to be ‘previvors’. 

pink_and_teal_ribbon_heart_sticker-r55d9af1e50d94500811e28ef8165089c_v9w0n_8byvr_210Details about The Venus Project Exhibition:

The Venus project will travel to the UK and the US from the end of this year. I will update the blog with more details as they are published.

• http://www.bracha.org.il/Files/File/venus.pdf

• https://issuu.com/jewishnewsuk/docs/jn981 pp.20-21

Merry Christmas to the Royal Marsden

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When I heard the words ‘complete remission’ on 16th November 2016 I was able to breath a big sigh of relief; I had reached a huge milestone. I’m now a few weeks into my second boxing match with ‘Cyril’ – the aim of this match is to remain the champion. As I expected, its been a rollercoaster, with good and bad days. 

 My three weekly Avastin treatment is going well. My tumour markers are behaving and my ‘Normal List’ is helping me to stay focused on reconnecting  with all the things I’ve had to put on hold over the last six months. Doing this is helping me to regain control of my life instead of allowing my fears and anxieties to take over. Sometimes the fears do overwhelm me, but I see it as my job to try and take the reins back when this happens. Otherwise I risk stopping myself from achieving all the things I want to do. It’s like what Dame Elizabeth Taylor once said:

“You just do it. You force yourself to get up. You force yourself to put one foot before the other, and God damn it, you refuse to let it get to you. You fight. You cry. You curse. Then you go about the business of living. That’s how I’ve done it. There’s no other way.’ 

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 This week I was feeling well enough to attend a Monday staff meeting at my school (doing ‘school things’ was on my normal list) and go to the staff Christmas dinner. It was an opportunity to focus my mind on work for a while which I really enjoyed. Next up on the list is to go to the gym on my own. I’m so grateful for all the support from the Chai Cancer Care’s physiotherapy team who have worked with me on a weekly basis and helped me get to this point. They have given me the confidence I needed to get back to a point where I can think about going back to a gym on my own. 

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 This week I also attended a carol service outside the Royal Marsden in Chelsea to mark the turning on of their Christmas tree lights. Every Christmas, the Marsden offers people a unique way to remember and honour their loved ones. They give the public the opportunity to purchase a personalised star on the Christmas trees, which stand tall and proud outside the entrances of the Chelsea and Sutton hospital sites. You give a donation to buy the star that then goes up on one of the trees. You also receive a gold star lapel badge as a reminder of your star on the tree. The money that the Marsden raises goes back into the hospital to help them continue doing the incredible work that they do. I put a star on the tree year in memory of somebody very close and special to my family, and I will continue to do this each year. It was a beautiful and moving ceremony and I felt very emotional as I thought about everything I have been through in the last six months and what I continue to battle with. I also thought about others who are affected by cancer, and about the inspirational young man who I put a star on the tree for. At the same time, this service gave me a chance to look forward and think about my future. There was something very special about standing outside the hospital that saved my life, surrounded by a beautiful Christmas tree, gorgeous Christmas lights, carol singers and lots of people. 

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Continuing with the Christmas spirit, I would like to share something that my school have done to mark Christmas this year. They decided that rather than giving out Christmas cards to one another, they would instead donate the money they would have spent on cards to Finding Cyril’s just giving page. I felt so overwhelmed by the gesture, and I am honoured to be part of such a wonderful and supportive team. I am so excited to eventually be back at work with them all. 

 These Christmas donation ideas got me thinking, and this week I have come up with an idea that I have appropriately named ‘Merry Christmas Marsden.’ I am sure we all have those moments when our wallet gets too bulky with coins, or we find loose change at the bottom of our bags. So this Christmas, why not count out some of these coins and donate the value of them to the Finding Cyril’s fund for the Royal Marsden? I opened my wallet this morning and had change to the value of £1 in coins, so I donated this to Marsden by texting FICY58 £1 to 70070. 

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 You can donate £1, £2, £3, £4, £5 or £10 by text, and anything from £2 upwards online on the Just Giving Page. If your loose change makes up less than £1, or you just want to get rid of your loose coins I have Royal Marsden Charity boxes to fill up. Please email findingcyril@gmail.com if you would like to do this. These small donations add up and will contribute to the on-going care the Marsden offers people living with cancer. So go on…lighten your wallets, rid yourself of noisy loose change and donate to a great cause this Christmas.

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 As we approach the Christmas holiday and end of the year I’ve been reflecting on my year and all that has happened in it. I think about just how special the Marsden is to me, not just the doctors and nurses, but everyone there who works tirelessly to make a difference to people living with cancer. It is because of them that I’ve got to the point where I can do ‘normal’ things again and even new things. It means that as I bring in the New Year I can look ahead to getting back to being ‘Laura Moses.’ Because whilst ‘Cyril’ is a part of my journey and identity, it is definitely not all of it. So thank you and Merry Christmas to the Royal Marsden.

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Let’s talk menopause!

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Menopause can be scary and bewildering. It’s a step into the unknown; especially so if you step into it far earlier in your life than you’re meant to. 

When I discovered that my body would be going through the menopause at 27, I struggled to make sense of it and what I would be facing. I was really anxious, especially because I had no real idea of what the symptoms would be like. I’d heard of them, but never quite understood how bad they could be. It was also hard to deal with the emotional side of early menopause. There are still times when I feel like an older lady trapped in a young woman’s body, but with time, I find myself slowly adjusting to it and knowing the things that I can do to help deal with some of the symptoms. So, I thought I would share some my personal top tips about menopause!

1. Seeking professional advice instead of using Dr Google

Consulting Dr Google is always so tempting, but it can cause unnecessary anxiety and worry. Early on in my treatment, I made the decision not to look up the symptoms of menopause on the internet, because I knew I would get caught up and overly focused on everything that I read. Before my operation, all I really knew about menopause were the infamous ‘hot flushes’ that the older women in my family would talk about. After my operation, I very quickly realised that it was much more than that. I started to experience many other symptoms that made me very anxious and unsure about myself. It was so helpful at that point to spend time with my specialist clinical nurse at the Marsden, talking through all of the possible symptoms, some of which I’d never even considered, such as moods swings. After having this conversation, I felt a lot calmer because I knew what to expect. 

doctor-google-asylum2. The power of the cold can

I find that putting a cold canned drink on the back of your neck is a really good solution to managing the hot flushes, which can often feel like a giant explosion of heat engulfing your body. They can feel like a small makeshift version of a cooling pillow (see link below) that helps with hot flushes and night sweats. For more information about cooling pillows look at: 

http://www.sleepcomfortably.org/the-best-cooling-pillow-for-hot-flashes-reviews-guide/

 

 3. The benefit of wearing a nightie 

I have always loved wearing pajamas, and up until now have always opted for long trousers and top sets –the warmer the better. I never liked the idea of wearing a nightie (it just sounds so granny like!) but when my friend got me one for me to wear after surgery, I was instantly converted! It has been amazing for helping me to regulate my body temperature at night. And contrary to my former judgmental thoughts about them, I’ve discovered that there are so many different types out there. Check out the link below.

http://www.debenhams.com/lingerie/nightwear/nightdresses-shirts

 

4. Thinking through outfits carefully

Due to all this menopause malarkey, I find it very hard to regulate my body temperature in the day. I lose track of how many times my jumper goes on and comes off during the day, and I find that when I’m out and about, my coat is constantly coming on and off. It can be quite annoying because sometimes only seconds after taking a layer off, I then get really cold! I have found that layering is key, and I now tend to wear thinner jumpers with a strap top underneath to help with the situation.  

5. Having herbal tea before bed

I have found that a hot drink before bed really helps me to relax and worry less about potential night sweats. I really like drinking red rooibos tea. It’s a caffeine free tea that grows naturally in South Africa and is also thought to have various healing properties.

458220b6. Holistic treatments 

Since my diagnosis, I’ve tried various alternative treatments that have helped with relaxation and managing anxiety, especially menopause related anxiety.  Chai Cancer Care offers lots of different treatments that I’ve found can really help with anxiety. At the moment, I have Reiki therapy, massages and reflexology.  Reiki is a very spiritual healing treatment that involves a light touch on or around the body. I’ve found that it helps me to stop focusing on the thoughts that whirl around in my mind by being more in touch with my body. Massages have also helped me loads – having a massage actually increases the levels of oxytocin and serotonin in the body. Regular massage therapy also lowers your blood pressure, lowers the heart rate and improves your breathing. Finally, I have found reflexology to be really good at helping me to relax and relieve tension and stress. Reflexology is basically a system involving massage, or a degree of pressure, in certain areas of the body. It’s based on the theory that there are specific places called ‘reflex points’ on the feet, hands, and other areas that are linked to helping restore proper functioning of internal organs. Look at the links below for more information about these therapies. 

 http://hubpages.com/health/10-Ways-Reiki-Helps-People-with-Anxiety

https://www.massageenvy.com/massage/massage-benefits/massage-for-anxiety/

 http://www.naturaltherapypages.com.au/article/reflexology_for_anxiety

 

7. Acupuncture 

After my surgery in August I immediately started experiencing the menopause night sweats. They were so intense to begin that I couldn’t sleep. I ended up having to take sleeping pills most nights. I also had to change my pajamas on a daily basis and would wake up looking like I had been swimming (my hair being would be drenched in sweat). The night sweats caused me a lot of extra anxiety, not at all helped by the fact that I wasn’t sleeping properly. My specialist nurse at the Marsden referred me for acupuncture, as there is evidence supporting this being successful in reducing night sweats. 

 At the moment I’m having weekly sessions of acupuncture and once these are finished, I will be taught a self-needling technique so I can continue doing it at home. I have found acupuncture to really successful – I no longer take sleeping pills, the night sweats are not at all as intense as they were and I’m able to sleep a lot better and for longer periods without waking up.  Look at the links below for information about how acupuncture can help to alleviate menopausal symptoms.

 http://www.medicalnewstoday.com/articles/279714.php

 http://www.acupuncture.org.uk/a-to-z-of-conditions/a-to-z-of-conditions/menopausal-symptoms.html

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8. Laughter 

I am a 27-year-old lady going through menopause. It’s a lot earlier than it should be in life, and is something takes a lot of adjusting to. It can still make me feel really strange. There are times when I’m out with people and experience hot flushes and end up feeling like I’m drenched in sweat. I can become very aware of myself in these ‘sweaty moments,’ and worry about whether they are obvious to other people around me (this probably makes me more anxious and makes the sweating worse!).  However, I’m slowly starting to see that laughter can help with these feelings, so I’ve started telling people I’m out with that they are not hot flushes but instead ‘power surges!’ 

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It seems like the positive impact of laughter where menopause is concerned is a popular idea, because there is even a play on the subject.‘Menopause The Musical’ is definitely something I want to see – I’ve included the synopsis below:

 “Starring Cheryl Fergison (EastEnders), Maureen Nolan (The Nolans), Rebecca Wheatley (Casualty) and Ruth Berkeley (Penny Dreadful) Menopause the Musical is heading out on another UK wide tour. This hysterical show packed full of one-liners about night sweats, hot flushes and memory loss is backed by an instantly recognisable soundtrack of innuendo-laden versions of 60s, 70s and 80s pop classics. An all-singing, all-dancing comedy set in a department store, where four women with seemingly nothing in common, meet by chance and make fun of their woeful lives experiencing “The Change”. They soon bond as they realise that the menopause is no longer “The Silent Passage”, but an unavoidable stage in every woman’s life. The hysterical and uplifting Menopause The Musical will have you laughing, and singing, all the way home. The show has played sold out-out tours across the world so call your girlfriends and book now for the ultimate girls night out.”

The show will be in Richmond on Sunday 26th February 2017and Milton Keynes on Sunday 19th March 2017. I will definitely be booking tickets! The link below provides more information about the show and how to book tickets. 

 http://www.atgtickets.com/shows/menopause-the-musical/#overview_tab

So these are just a few things that I have found help me at the moment. I hope that by talking a bit more about the menopause, it will help others who are also going through it. I also hope that it will bring about more discussion about any ideas or tips that other people have. I’m keen to hear about new ideas to help with menopause symptoms, so if you have any ideas or suggestions that you want to share, then please do mention them in the comments section on the blog!
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Laura 1 – Cyril 0

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Back in June I entered into the ring to start my boxing match with ‘Cyril.’ There have been rounds that I’ve found simple to win, others that have felt like a bit of an effort, and those that have been extremely challenging. And then there were the ones that felt just completely impossible to win. The final round of the match was on Monday when I had my repeat CT scan. Shopping and lunch with my aunt followed my scan!

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And the winner was announced on Wednesday, when I met with the professor in charge of my chemo for the scan results. He confirmed that the scan showed no evidence of ‘Cyril,’ which means that I am now in remission!! That’s the word I’ve been waiting for and it felt just as good to hear as I thought it would. Wining this match doesn’t mean the end of my treatment, but it marks a huge milestone for me, and one that I’m so proud and grateful to have got to. 

 For the next year, I will be back at the Marsden every three weeks for my Avastin – the maintenance IV drug I’ll be on. I had my first one on Wednesday after my scan results and my veins and blood behaved themselves so treatment went smoothly. Once again, I had my usual dose of IV magnesium for 3 1/2 hours, but the time past very quickly because I had my trusty colouring book and was chatting away with the wonderful nurses and doctors on the ward. I finished this long day at the Marsden with my third session of acupuncture. This is helping to reduce the intensity of the hot flushes and night sweats that I get due to the menopause. Before heading back home on the train, I had a celebratory burger with my dad and sister. I am so proud of myself, as eating in a restaurant is no longer as anxiety inducing as it was a few months ago, and I can enjoy doing this a lot more now. 

Last week, I shared some of the things on my ‘Normal List’. I wrote it to help me deal with the fact my treatment is now every three weeks, to stop me worrying about what my tumor markers are doing and my future health. It was also to help me get back into all the important non-cancer things in my life. They may seem like small things, but they’re things I’ve not been able to do until now. The list seems to be working well. So far I’ve ticked off:

• going on the train on my own 
• going up to the Marsden for an appointment on my own
•  going out for dinner 
• out for lunch with friends 
• going shopping! (supermarket and clothes shop) 
• cooking a meal
• buying an outfit for my friend’s wedding next year 

 

I have also added some new things to the list this week. I’m going to visit the school I work at on Monday 21st November and I’m also planning a trip to a Christmas market. I find that when I’m doing something from my list, I’m focused on the activity,  and all of things that worry me seem to temporarily fade away. I have become eager to tick things off my list, and take a selfie of myself or a photo so I’ve got a record of what I have done. I’ve included some of the selfies and photos I have taken so far…

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The list is really helping, but I know from my experience so far, feelings come and go and you always need to keep mindful of what you might need or what might be helpful at different points on this journey. This week I was reminded about the importance of asking for help if I am struggling to cope.

Back to the boxing match and my win! There are so many people who have helped me to win this fight: my medical team, my family, my friends, Chai Cancer Care and every single person who has supported, and continues to support, Finding Cyril. And possibly most important of all my body has helped me. I am so thankful to my body because it did an incredible job at letting me know that ‘Cyril’ was there, and then in helping me fight it. 

So now I have started my next match, but this time with the experience and knowledge from having already got through the first one…

Match two statistics 

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 Aim: To keep ‘Cyril’ out of the ring so that I can hold my position as the champion

 Player: Laura and her body

 Team members: Avastin, Royal Marsden medical team, family, friends, Chai Cancer Care, my Finding Cyril blog and my ‘Normal List’

The challenge of this match is time. It’s going to be a very long one and I have no doubt that there will be bumps along the way, and times when I feel my position as champion is being challenged. But I won the belt in the first match, and I will also win it this time round. I wear my belt from the first match every day. It’s my scar and it is proof that I am stronger than ‘Cyril.’ The belt from the second match will be the joy of achieving all of the things that I want to, whilst also dealing with any obstacles that the match may throw my way. 

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As my oldest sister told me on the 9th June when I was diagnosed, “Cyril messed with the wrong b****!”

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Keep calm and make lists

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On Monday 7th November, I was back on the chemo ward to complete cycle six of my chemo. This also marked the end of my chemo! Below is a photo collage that my brother made for me to mark this milestone. The end of chemo doesn’t mean the end of my treatment though; it means I’ve finished one more stage of it. I will be back at the Marsden next week for a new CT scan, and to see the professor in charge of my chemo to get the scan results. I’ll also find out a bit more about my three weekly Avastin maintenance treatment.

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So back to chemo this week. After took two attempts to get my cannula in, everything went smoothly. It was great to have a visit from my consultant and specialist nurse during the day. As we stood together talking at my final chemo session, I had a flashback to 3rd June when we all first met, but in very different circumstances. I had not slept for a day, was in my pyjamas and a hoodie that was far too big for me with a crazy, ‘I’ve not dealt with my hair for two days’ hairdo. I was also filled with anxiety, fear and shock. On Monday, it was a completely different story. I was dressed in clothes that made me feel good, had make up on and had exchanged the crazy hairdo for a cooling cap. More importantly, I felt like a completely different person. This flashback made me emotional because it was another reminder of how far I have come with the support of my incredible medical team, family and friends. We all spoke about what I was going to do to celebrate getting to this point. I have a long list, but the first thing I plan to do is get my nose pierced! After years of saying I want to get it done, but being too scared of the pain, I’ve decided to go for it. Given the amount of cannulas I’ve had this year, and not forgetting the major surgery bit, I’m hopeful that a small piecing will be nothing in comparison!

Back to chemo this week…My magnesium and haemoglobin were low, so that meant another 2 ½ hours of IV magnesium and a 4-hour blood transfusion after my chemotherapy drugs. I ended up being at the Marsden from 8am-9pm… A new record for me! As I was there so late, I had to be transferred to an inpatient ward for the final unit of blood, because the chemotherapy day unit closes at 7pm. Luckily I had plenty of evening company. It was wonderful to have my friend Rosie, my dad, my aunt and my sister with me. I also received beautiful bouquets of flowers from my friends Rosie and Jessica. As I have explained before, flowers make me think of 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, which is something I know I need to be doing, despite the uncertainties that I feel I am facing.

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That evening on the ward, it was such a wonderful surprise to see the first nurse I met at the Marsden the day that I was transferred there from A&E back on 3rd June. She put my first Marsden cannula in, and it seemed quite fitting that she took the cannula out from my final chemo session. I hadn’t seen her since that first night, so I got to tell her all about my treatment and the blog.  I’m also so pleased that she now has a Finding Cyril band!

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In last week’s blog I spoke about my fears regarding my future health and how the ongoing support from my medical team, family and friends is helping me to deal with these fears. I also mentioned the need to find ways to cope with some of the difficult feelings and emotions. A few days ago, I tried something else – I decided to write a list called: ‘Normal Things.’ This list (I have shared a snippet of it below) includes lots of things that I haven’t done over the past six months, because I either haven’t felt able, or have been too anxious to do. Some of the things might seem really easy but they have become quite hard for me. My theory is that this list of things will help me to keep busy between my now three-weekly maintenance treatments at the Marsden, and therefore help keep my mind from focusing on what my tumour markers will be doing, and my worries about the future. My idea of the list relates to something that the American writer Dale Harbison Carnegie once said: ‘Inaction breeds doubt and fear. Action breeds confidence and courage. If you want to conquer fear, do not sit home and think about it. Go out and get busy.’ As I have said before, I know that it is a case of trial and error to find the coping mechanisms that will help me deal with the uncertainties that I face, and I might have to adapt and change these mechanisms depending on what I am going through. I’m pleased to say that I’ve already ticked three things off my list this week….I took a tube on my own and went to my Marsden appointment on Wednesday on my own! On Thursday, I went to a shopping centre for the first time since my diagnosis and made some great purchases! I know that there are bound to be days when whatever I try to do to help me cope might feel futile, and that I may feel like I don’t know what my next step is. For now though, I’m just trying to stay focused on reminding myself that when things get tough, I have to get tougher and continue to push forward, however hard it feels.

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As I enter into the next phase of my treatment, I also find myself reflecting on the last six months, and the fact that I have learned, and I continue to learn, that I am a lot stronger than I ever thought I was. There have been many times in my life where I have questioned my ability to do things, or thought that I was not strong enough to deal with certain things that were happening. But ‘Cyril’ has shown me that there seems to be a lot of truth in Bob Marley’s famous words: ‘You never know how strong you are, until being strong is the only choice you have.’

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Letters to my future self

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On Monday 31st October, I was back on the chemo ward for session two of cycle 6.  Everything went to plan, and as is becoming routine now, I  needed IV magnesium.  I was lucky to have a lot of company this week, with my friends Rosie, Chloe and Sophie, who all gave up their lunch breaks to visit me on the ward. They kept me smiling and laughing the whole time. It reminded me just how lucky I am because I have the most amazing friends by my side. John Milton Hay, an American statesman and official, once said, ‘Friends are the sunshine of life,’ and these words ring true to me when I think about all of my incredible friends.

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I will be back at the Marsden this week for my ‘Look Good Feel Better’ session (check last week’s blog for more information on this). I’m also going to need another blood test this week to double check my haemoglobin level, which is dropping. So it might mean another blood transfusion. It’s strange to think back to how I felt when I was told I needed my first transfusion, as these have become such a routine part of my treatment now, that I don’t worry in the slightest!

As I might be having another blood transfusion, I wanted to use this an opportunity to remind everybody about an amazing charity called the ‘Joely Bear Appeal.’ They organise and run blood drives in North London. On 27th November, they will be running two drives: one at Edgware Community Hospital (8:20am – 16:30pm) and the other at Borehamwood & Elstree Synagogue (9:15am – 12:15am & 14:00pm – 16:30pm). Check out http://www.joelybear.org.uk/2016_11_Mitzvah_Day.html for further information.

As I have mentioned previously, I have started to become more anxious and worried about the future, and what might happen in terms of my health. I know that part of this is because my weekly chemo is coming to an end, and I’ll now be moving to a maintenance treatment that will happen every three weeks. The thought of not being at the hospital each week feels scary because it has become like a safety blanket for me. This sense of security is a testament to everybody there who is looking after me and helping me to get better.

I know that I’m going to find it hard to adjust to not getting my tumour markers results weekly. Getting these always and makes me feel reassured that the treatment is working. I know that I will have moments between my three weekly sessions where I wonder if everything it still going to plan. It’s a worry that I’m sure everyone who is fighting ‘Cyril’ feels when their treatment pattern changes. I am always reminded that my medical team at the Marsden is always there for me, and that if I ever have a worry, concern or a problem all I have to do is ask. They want to support you in getting back to your regular routines, being safe in the knowledge that they aren’t going anywhere.

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I also know that I have to find ways to cope with the thoughts and worries that I am having now, and which I know that I’ll continue to have throughout my maintenance treatment, and beyond. It is a case of trial and error to find the things that work. Some things that I have tried haven’t worked as well as I’d hoped. For example, allowing myself to notice when I’m having a worrying thought, to acknowledge it and then and visualize it going away. Although this mindfulness technique is helpful, it’s something that I do find challenging, because I find it really hard to ‘let go’ of the thoughts. However, for me, a better way of being able to ‘let go’ of them seems to be through writing. Starting to write when I was diagnosed with ‘Cyril’ helped me to deal with the shock of the diagnosis and the treatment I needed to have. I don’t think that I realised just how helpful writing could be. It has allowed me to clear my head when it sometimes feels like it is going to explode with thoughts or worries.

You may be wondering about the title of this blog… After my surgery, my sister’s friend got me a beautiful book. The book has letters that you write to your future self, seal up and open whenever you want in the future. It now seems like a perfect time to start using it and something I feel will be helpful, both now and in the future. Writing about my goals, hopes, fears and worries in these letters allows me to express what I’m thinking now. Opening them in the future will allow me to look back on this journey at a time when I’m in a different place; psychologically and emotionally. Like I said already, it is going to be trial and error in terms of finding things that help me cope with my worries about the future and the uncertainties about my health. I know that the things that help me might change at different points depending on what I’m going through.

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In life, we all have to learn to deal with uncertainty at different points. I think the author Jaeda DeWalt describes this perfectly:

“Learning to navigate the unpredictable terrain of life is an essential skill to develop. We can’t live a happy life if we are unwilling to pave the path that will lead to our personal fulfilment and destiny. Learning to sit comfortably in the seat of uncertainty is challenging, but equally rewarding, because discovery is what waits just underneath the surface of that uncertainty and that gives us the chance to become fearless explorers, of our own lives.”

In my life there have been numerous times when I have sat in that ‘seat of uncertainty,’ and coming through those experiences was indeed rewarding. The greatest uncertainty that I have ever encountered was being told that I carry the BRCA 1 mutation and then being diagnosed with ‘Cyril’. In this period of my life ‘learning to sit comfortably in the seat of uncertainty’ is, as DeWalt says, and continues to be, challenging. I know that it will continue to challenge me as my treatment routine becomes less and I get back into the other aspects of my life. It will mean that I need to keep in mind the things that I find help me to cope and also find new coping strategies, so that I can enjoy getting back to some great opportunities. I have a wonderful job to get back to, a Masters degree to complete, which will be followed by a third graduation ceremony (the satisfaction of that being that I will be the sibling to don our father’s wall with three graduation photos!), as well as new opportunities in life that I don’t even know of yet.

So whilst I worry about chemo ending, treatment only every three weeks, and my future health, I must keep reminding myself that there are so many good things to come… And that’s why I think it’s a good time to start writing these letters to my future self, and see if this is an effective coping mechanism to help me to deal with the uncertainties that I am facing.

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My bag of sunshine!

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On Monday 25th October, I was back on the chemo ward to start cycle 6! Everything went smoothly, and once again, I had my two hour dose of IV magnesium. I am also continuing with my potassium drinks at home. I passed the time by teaching my aunt how to play Top Trumps (over the weeks I have introduced her to several new games), chatting to my wonderful friend Rosie who came to see me at lunchtime on the chemo ward and by doing more online clothes shopping! This seems to be becoming a weekly occurrence, so perhaps I should leave my phone and wallet at home next Monday…

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The highlight of Monday was discovering the real reason behind my funny tummy that started a couple of weeks ago, and has taken a while to calm down. Initially, it was thought that magnesium drinks had upset my tummy, and whilst they may have contributed to it, the main reason was because I had some how got Salmonella! Everybody was totally shocked by this, particularly because I did not get sick and did not lose my appetite. The only problem I had was going to the toilet a lot more than usual! I have had food poisoning on several occasions and always been quite poorly from it, so it surprises me that I seem to have sailed through this bout of Salmonella! To be on the safe side, I’m now on a course of antibiotics for the next week.

 I have two chemo sessions left before my CT scan will be repeated, so I thought I would share what I keep in my chemo bag. My siblings prepared this bag for me before my very first chemo session  in June, and lots of things have been added to it since. I find this bag very handy because you never know if you will be on the chemo ward longer than anticipated. For example, you might find yourself there longer if you need IV magnesium or a blood transfusion, so it is good to have things to keep you occupied!

My chemo bag essentials

 1) My mindful colouring book of swear words from my wonderful colleagues is always with me for chemo. This is book is actually permanently in my handbag because I love it so much! The words (often very explicit) in this book remind me that I am pushing ‘Cyril’ out of the boxing ring! 

2) I have a wide selection of games in my chemo bag (some childhood favourites). Thank you to everybody who has purchased games for me. They have not only kept me occupied during chemo, and in the hospital, but also at home.

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3) I also keep a comfy pair of trousers (on loan from my sister) and a hoodie (on loan from my brother) in my bag. The trousers are handy if I find myself on the chemo ward for a lot longer than planned, and the hoodie is handy when I have the cold cap on.

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4) I also keep Jennifer Young mint foot cream in my bag. I got this product using the vouchers that my school generously gave me when I started my chemotherapy. Jennifer Young specializes in beauty products for chemotherapy treatment. For more information look at: http://www.jenniferyoung.co.uk/. I keep this is my bag because my wonderful auntie gives me fantastic foot massages, which I find very relaxing when having chemo.

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5) There is also a very cool bag (a gift from friends) in my chemo bag. It is full of jelly beans and other sweet things. This comes in handy after I have had my premeds, two paracetamol, Lorazepam and my anti sickness tablet. This is because I have five minutes or so where I feel like I am drunk and often end up in fits of giggles! These few minutes take me back to my Birmingham University days, and the nights that proved I could not handle too much alcohol; one of which resulted in me falling asleep on the floor of a toilet cubicle in a club! For the purpose of this trip down memory lane, I have included a photo from that infamous night (it is before my little sleep because this was not caught on camera)! I was funnily enough reminded of the other photo (the one where I am sporting a very interesting facial expression) this week. It is further proof from another night when I once again showed that I can’t handle my drink!

6) I keep my slipper socks in my bag as well because I find them more comfortable than shoes when you are sitting down for long periods of time. Grip on the bottom of shoes or socks is important on the ward as hospital floors are often slippery. 
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7) My earphones are always in my bag because I have found music is very calming for me, particularly when I feel very anxious, and it feels like my heart is popping out of my chest.

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8) My wooden comb, Paxman conditioner and soft headband are also in my chemo bag because I am using the cold cap during the treatment. The nurses use the comb when they prep my hair for the cold cap and they put the Paxman conditioner on. The headband helps to make the cold cap feel more comfortable because it covers my ears and avoids them from freezing!

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9) I also carry my journal in my bag. My siblings got me this journal before chemo began in June and started it with a childhood photo. It is now full of messages of support and photos. I keep it with me at chemo because I have met some very inspirational people on the ward, whose words of encouragement have been a huge help to me and they have written in my journal. This journal has become so important to me because in my low moments I can look at it, and it helps to give me the boost that I need.

I hope that sharing what I keep in my chemo bag can be of help to others. Without a doubt, this bag has been like a bag of sunshine that has helped to brighten up each chemo session. I don’t always use everything in it but knowing that I have it all there with me is always such a help.

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