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Pain, drain and a friend’s baby

Today was another busy day. I knew I was to be admitted to the oncology ward but didn’t have a time and had been told to just wait for a phone call. However, instead I woke to the wonderful news that one of my best friends had given birth to her baby girl during the night – and in the hospital I was being admitted to! Nothing brightens your day like meeting a brand new baby!

Barely able to concentrate after that awesome news, I spend the next hour reading through the information sheet on the drug trial my oncologist suggested I enter and writing a list of questions. I had so many! My poor oncologist underestimated asking someone who is a researcher for a living to enter a drug trial!

The hospital then called to ask me to come in just after lunch – I was to have another abdominal drain to remove the fluid that had built up in my abdomen (again) and then tomorrow a biopsy of my cancer and then on Thursday a kidney function test for my chemotherapy – so a few days in hospital were definitely on the cards again!

I had already booked a head and foot massage at my favourite salon a few days ago for this morning and I wasn’t away to cancel it so the owner very kindly squeezed me in a wee bit earlier. This meant I got to have an hour of something nice happening to my body, rather than the needles and tests it had been constantly subjected to over the last few weeks! I’ve been told I can’t have a body massage because of my tumours but the head and foot massage were utter bliss! This may be something I’ll include in my weekly treatment to help ground me and give me something nice and relaxing to look forward to.

After that my husband and I headed to the hospital where the labour suite made an exception, given the circumstances, and let us sneak in for 15 minutes to meet my friend’s new baby. She was utter perfection! And it was such an honour to meet her whilst still in hospital! Wonderful and definitely a highlight of recent events!

When we arrived on the oncology ward I was taken for an ultrasound to mark where would be best to put the drain in my abdomen to remove the fluid. This was painless and just involved a big black marker pen!

I was then subjected to countless nurses and Drs coming for chats about my diagnosis and treatment, including my oncologist coming in to answer my questions about the drug trial. During this chat she explained that only 60 people in the UK will be given the drug and only 9 of these will be in the hospital that I am being treated in. She also explained that I would be the first in this hospital to be given the drug. I felt reassured by her answers though and encouraged that she said if she were in my position she would enter the trial. On this basis I have initially agreed to enter the trial – although I can change my mind at any time.

She also filled out my cancer insurance forms – yes I have cancer insurance and I highly(!) recommend that anyone with a family history gets it! It costs about £5 a month and, let me tell you, cancer is an expensive lifestyle and money is definitely required! I sadly discovered that my life insurance doesn’t cover me because I only have critical illness cover and not terminal illness cover – also something I suggest people look into while they are still fit and healthy! It’s not morbid – it’s sensible!

The meeting with my oncologist was also really upsetting. She explained that she can’t cure my cancer. She can get me into remission but the cancer may come back and then I may go through this process again. When you are 30 and full of life this is not easy to hear and take in. It didn’t physically hit me until two hours later though when I saw my husband and I just cried and cried. It’s something I knew but hearing it was part of accepting it.

After all these chats – which lasted over three hours! – it was time to have a cannula put in my wrist and  a drain put in my abdomen. The Dr came to put the cannula in and it was so painful I actually called him a bastard! Poor guy because in reality he was lovely but the word just came out! The research nurse then came and tried and put one in my other hand. This time we managed to get through without any additional profanities!

The Dr then came back (the one I’d sworn at) to put a drain in my tummy. This involves injecting local anaesthetic into my tummy and then cutting a small hole and inserting a tiny tube to be left in overnight. The hole is only about 0.5cm across but it goes through your abdominal muscle and, although I’d had a drain in the past, I just couldn’t take the pain at all and he had to stop after a number of attempts. In hindsight I’ve realised that when I’m feeling emotional about something, my pain threshold is lowered (like when I had the dye at my CT scan) and so I think this was a result of having just had a chat with my oncologist. So, we are planning to have another go in the morning in the radiology ward when they do the biopsy of one of my tumours – fingers crossed it goes more smoothly. Usually my pain threshold is very high!

Now I am, once again, worn out from all the prodding and so I’m having an early night to ensure I’m ready for another busy day tomorrow.

Before bed though I managed to squeeze in a wee bit of tomato soup with ‘buzzy bee’ and my husband by my side for company – I’m pretty sure the nurses think I’m weird but it brings me comfort and reminds me of friends and that’s all that really matters!…

love and light, Fi xx

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Drug Trial…

So today was officially one week since my cancer diagnosis…although it feels like months because so much has happened and my brain is about to explode with all the new information it now contains!

Anyway, today was a busy one. First I had to meet with my GP and we talked about the support they can offer which includes them being available for calls and appointments if I have any questions, supporting my husband and putting together an anticipatory care plan for when I start chemotherapy incase I ever go into hospital out of hours. They were lovely and helpful and it was encouraging to see the NHS working as it should. She also signed me off work for 6 months as a starting point. Whilst this is great on one hand as it means I can focus on my health and recovery, it was also really challenging as work is a really important part of my life and I’m one of those crazy people who actually enjoy what they do for a living! Madness I know! She also noted my husband as my carer. This is a weird one to get my head round – I’m a (very!) strong willed, independent 30 year old woman so the notion of having a ‘carer’ is totally alien to me but luckily I married a superhero so if anyone can do it I know he can xxx

Following this my husband and I went to our local Maggie’s Centre to meet with the volunteers and talk about the resources and classes that they have on offer. This is an amazing service and entirely free!! I was soon signed up to ovarian cancer support groups and hair loss groups and given lots of clear information on my diagnosis and treatment. My husband was also given loads of support and information and this is so important – since my diagnosis I can honestly say that I think it’s harder on my husband, family and friends as they try to find their role in my journey and as I try to figure out where I will need the most support…this is something I guess I will get to know more clearly once I start my treatment and figure out what I can and can’t do for myself anymore. In the meantime it’s just chats and messages and knowing that they are there – which they are in abundance! Cue teary sentimental moment!

It was then time to go to my oncology appointment to meet the oncologist who would now be looking after me. She is lovely! We chatted about my diagnosis and she had a feel of my tummy and then she talked about the chemotherapy drugs I’ll be taking (more on that when I actually start). She explained that chemo will work by destroying the cancer cells in my body and stopping it growing new blood vessels. I will be given three different types of chemo through a drip every three weeks for a period of nine weeks. After this I will have another CT scan and then she will decide if I have surgery or another nine weeks of chemo and then surgery.

She also explained that there is a clinical drug trial taking place in which patients with my type of ovarian cancer (a genetic BRCA gene mutation that has lead to stage 3 or 4 cancer) are given an additional drug during their chemo and for two years after, that aims to stop cancer cells coming back. Obviously it isn’t yet licensed and so definitely a lot to think about before making my decision!

She gave me a lot of information and sent me away home to chat it over with family and sleep on it. I was then told that I would be admitted to the oncology ward tomorrow for a couple of days for some tests before starting my chemo next Wednesday.

I felt completely overwhelmed with information when I left her office and so headed home with my husband for a serious chat about our decision about the trial with my parents. I have to admit I was knackered though and so decided to leave it till tomorrow – it never ceases to amaze me how exhausting I find everything just now!

love and light, Fi xx

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When life gives you lemons…

So I’m always of the opinion that “when life gives you lemons, make lemonade” and I wasn’t going to let something silly like a cancer diagnosis change my opinion on this so, when I got diagnosed I made the decision that I wanted as much positivity to come from my journey as possible.

when-life-gives-you-lemons-224454_w1000As well as sharing my story on social media I also set up a ‘Justgiving page’ to raise money for Macmillan Nurses and invited friends and family to donate to this wonderful charity that, in just a short while, had made our journey so much smoother already. Amazingly in just 24 hours they had donated nearly £15000!!! Isn’t that mind blowingly awesome! I can honestly say that the love I felt from every one of those donations and the lovely comments people left will give me the strength I need to make it through my journey!

I will continue to raise money for Macmillan Cancer Support throughout my journey and always so that together we can help them to continue in their pledge to ensure that no one faces cancer alone.

I have also made my own pledge to cut all of my hair off before I start my chemo so that it can be donated to be made into a wig by the Little Princess Trust for a young child facing cancer and to dye my remaining hair pink until it falls out as a result of chemo. I invited others to do this too and was amazed to receive messages from people that they would be donating their hair to this amazing cause. My heart honestly sings for people like this!

Other people also offered to dye their hair pink too – including my mum and dad! Support like this is priceless and I feel like the luckiest person alive knowing I have so many awesome, positive people cheering me on from the sidelines.

I also have friends and family signing up for the race for life and the overrun ovarian cancer run and I plan to join them all – walking, or crawling, if I have to!

I cannot put into words how grateful I am or how loved I feel but want everyone to know that I have never felt so blessed. Thank you.

love and light, Fi xx

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“we’ve found cancer cells”

I’d like to say Monday 18th January started like any other day…but it didn’t. It followed another weekend of pain, bloating and throwing up…and sadly not because of overdoing it in the pub! I’d been in the hospital the week before having 4.5ltrs of fluid drained from my abdomen and although that had briefly relived the pain I still felt crap!

That morning I was having an MRI to try and find out what was making me so unwell. Drs had told me that they expected to find some infection or scar tissue from surgery I’d had last summer but, as I’d told them and others, my gut instinct was screaming that it was something more….and more specifically that it was ovarian cancer…however my concerns were silenced for months despite my CA125 blood levels rising and ultrasounds showing masses on both my ovaries that were increasing in size.

The MRI was pretty straight forward, just lying down and listening to some Katy Perry for 45 minutes while the machine did all the work. They put some dye in my arm, but other than it making my cheeks a wee bit rosy I can’t say I really noticed.

A friend’s wee girl had sent me a ‘buzzy bee’ to keep me strong – isn’t that the cutest! – and so I snapped a cheeky wee pic afterwards to keep me smiling (he’ll be making quite a few appearances on this blog I’m sure).

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Following the MRI I went to the ward to see my consultant about my sickness. He suggested some more(!) blood tests which, as a result of my dehydration and the fact I have crap veins anyway, took 12 attempts involving three nurses and a dr! Although feeling like a pin cushion, I was still able to have a laugh with the lovely staff and really enjoyed taking to the nurses and Drs about their day.

Before I left my consultant explained that the fluid they had taken the previous week had shown no signs of infection and they were waiting on one more test result and he would call me with the results as soon as he received them.

I left the ward set on going home for a rest but that’s when things started to change…10 minutes after leaving the ward I received a call from my consultant. I’ll always remember I was sitting in a supermarket car park about to buy some GF bread. Random I know but it will stick with me forever. He didn’t say much but I knew then what was coming. He told me to meet him on the ward at 3pm and to bring my husband because they had some test results. I’d been speaking to this consultant nearly every day for two weeks and he always told me everything over the phone – although he didn’t confirm anything on the phone I knew things were no longer looking good and that my instincts had been correct.

I cried all the way home.

Two hours later my husband and I were on the ward where we were shown to a private room to wait for my consultant. When he arrived he explained that they had found cancer cells in the fluid that they had drained from my abdomen. Cancer. Such a small word. Such a huge impact. I knew then that nothing would ever be the same again.

I looked to my husband, his face just a picture of stunned disbelief. We’d just celebrated our two year wedding anniversary a couple of weeks ago, how could this be happening?

The consultant started to explain the next steps but I’m not sure I heard any of it. How would I tell my parents, my sisters, my friends, my work – I was due to start my dream job in a matter of days? So many questions running through my head.

The consultant left us and a nurse brought us cups of tea.

I don’t know how long we sat there but I know that I wanted out as soon as possible. I had to tell people, I wanted it out, I wanted to scream it from the roof tops. Like that was going to make it any less real?! any less painful?!?

The hardest part of having cancer isn’t the diagnosis, it’s having to tell the people you love. Having to hear them muffle tears as they try to stay strong for you. Having to break so many hearts. That’s where the pain comes from.

My family and friends rallied round as always that night and I felt an overwhelming sense of support and love. I spent the evening phoning and texting close friends and sitting with my sisters before coming home and lying on the sofa crying with my husband – even I can’t be strong all the time…

My parents were in Spain and I had to tell them over the phone. That was the hardest call…knowing they were so far away and not being able to tell them face to face. How do you tell two loving parents that their youngest has cancer?…

love and light, Fi xx