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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