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

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

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

I will aim to post as many of your photos on the blog and on twitter as possible! Be sure to tweet them to @FindingCyril if you want them in a post. You can also email them to findingcyril@gmail.com.

I have also included out text donation code FICY58 with the campaign. If you are a UK resident, send this code and an amount (e.g. £2) to 70070 to donate. All donations go to The Royal Marsden Cancer Charity.

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

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

Other symptoms can include:

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

 

#FindingCyril

A new way to donate

Finding Cyril is now offering sponsors the option of donating to our chosen charity, The Royal Marsden Cancer Charity, via text. Text FICY58 and an amount (e.g. £10) to 70070. Thank you for all your continued support.

Please note, this option is only for UK residents. If you live outside the UK and want to donate, please click the JustGiving image below.
JustGiving - Sponsor me now!

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#FindingCyril