health, holistic health, ovarian cancer

Carol Bareham 22.12.1972 – 01.04.2020

As many of you are already aware, my dear friend, my ‘cancer bestie’ as I liked to call her, passed away on 1st April this year.

Like me, Carol lived with late stage ovarian cancer, being diagnosed just 4 months before me.

In the year leading up to her death we talked almost every day about life, death and love. In many of those chats Carol would remind me that when she died (always convinced that she would die before me and no wonder with the treatment options in Northern Ireland being far inferior to those available to me in Scotland) that I was to write ‘an epic blog post’. No pressure Carol!

However, despite writing being one of my most utilised healing tools I have found it impossible to write this post for her until now, 6 weeks after her death. The reason? Writing it means that she is actually gone. Writing it is the final goodbye, the ‘closure’ I have been avoiding. Writing it means that I really don’t get to see my friend again and that reality has just been too hard to face.
Almost every day, I find myself having conversations with her in my head,  desperately seeking the advice and guidance she offered me over the past four years of friendship, unable to believe that she is actually gone.
However, despite my avoidance, I could imagine, only too well, Carol telling me to get a grip of myself and write the bloody thing already so, here goes. Carol, this is for you. I’ll love you for always.
—-
Carol and I didn’t meet in ‘normal’ circumstances. In fact we first ‘met’ over the internet on 8th May 2016 . This was an auspicious date. It is World Ovarian Cancer Day and it was also the day before I had major surgery to remove multiple organs from my cancer ridden body.
Carol wrote a comment on my blog that day which read Good luck tomorrow…I had the op in January after 4 chemos too and I am pleased to report all went well and I recovered from it well. Having 2 further chemos after the op, well that is another story! I hope it is a big success and will be keeping everything crossed for you. Have just discovered your blog and have been hooked on it all day…have experienced very similar thoughts and feelings, you have a lovely way of saying what many of us cancer patients are feeling. Will be awaiting your next post now post op! Carol xxx”
People comment on my blog and send me messages and emails all the time. I mean I literally get hundreds of private messages every week and yet this one, from Carol, stood out for me and, to this day, I have no idea why but I am so glad that it did. This simple message became the start of one of my most valued friendships and just goes to show we really never know what a simple act of kindness will lead to.
Over the months that followed Carol and I would often exchange weekly messages. Over time we exchanged phone numbers and began texting each other on a more regular basis. While I had no one in Scotland who I could talk to about living with late stage ovarian cancer, I had found in Carol someone who I could share everything with. She just ‘got it’. Every thought, worry, hope, fear, anxiety, pain, horrible embarrassing experience cancer had brought me, Carol had seen and experienced too. There is nothing quite like a friendship build on the common ground of literally shitting yourself through chemotherapy!
However, despite regular messaging, it wasn’t until two years later that we first finally met in April 2018 when Carol and her family were visiting Scotland from their home in Northern Ireland. Despite having planned a lovely ‘normal’ get together my cancer had other plans and I ended up in hospital for the entire time Carol was over. Despite this she still visited me and it was pure joy to finally put a face to the name I had been messaging and sharing ‘everything’ with over the previous two years.
Then, a whole year later, in April 2019 I visited Carol in her hometown in Northern Ireland as part of my book tour for my second book‘How Long Have I Got?’
During this trip I was finally able to meet Carol’s incredible family and friends, including the group of ‘Northern Ireland Ovarian Cancer Ladies’ that she had established. I have never been made to feel so welcome and supported.
Another year of messaging passed during which Carol’s health started to decline more rapidly than my own. She had stopped chemotherapy; her body, mind and spirit having now had enough and she was now doing her best to enjoy her life as best she could despite cancer. However, it wasn’t until winter 2019/20 that I finally started to accept (as best as one can accept) that I was going to lose my dear friend.
At the time my own health was declining rapidly and so began a daily discussion, peppered with the darkest of humour and jokes that only two terminal cancer patients could share and get away with, of who was fairing worse off. This shared dark sense of humour and a willingness not to shy away from the hard times is one of the reasons I will always love Carol so much.
One of the most powerful things about going through this cancer experience together was that we were able to have completely honest and frank discussions. Neither of us ever avoided discussing the reality of either of our situations. And neither of us ever pretended things were any easier than they actually were. I didn’t pretend that Carol wasn’t getting sicker and likewise she offered me the same courtesy. This is a rare and beautiful gift, as hard as it may seem, because it meant that we were able to have conversations that may have otherwise been avoided.
For instance, once Carol had transitioned from her home to a local hospice and I had finally accepted that Carol was going to die, instead of pretending otherwise, I messaged her one day and said “I am either coming to your funeral or coming to see you now. Which would you prefer?” this was in response to her telling me repeatedly not to come and see her. I knew, however that this wasn’t because she didn’t want to see me but because, like many of us, she didn’t want to accept the love that I would be offering in the act of traveling from Scotland to Northern Ireland just for her. She replied almost instantly, “come now”. And so, I found myself sitting at my kitchen table, at 5.30am the following day making plans to go to Northern Ireland to visit her.

The earliest I could go was two weeks later due to a number of hospital appointments that I already had scheduled. During these two weeks our connection and friendship grew stronger. She knew that I was dropping everything that I could to come and see her and she accepted that love and connection. Similarly, I knew how important this time was for her and her loved ones, and I accepted the love and deep honour it was to be a part of this precious time. And I mean honour. So many of us shy away from facing the hardest moments in life like tragedy, grief and death but, I’ve found through my own personal experiences, that it’s in these moments that the greatest opportunity for connection truly lies and that is an honour, and a gift.

During this time some of my other friends would message me to ask how Carol was doing. Many would reflect on how sad it must be for her to be dying. I knew a different truth, however. Carol wasn’t sad. She was ready. Over the previous few months she and I had discussed frequently how she was done with the suffering her illness was causing her. She had taken time to connect with and love her family and friends and she was now ready to release the pain. It was because of this that I didn’t feel sadness about her dying. I felt loss yes and I felt pain, deep pain, but they were my pain, my loss, my imminent suffering, they weren’t Carol’s.

Her messages during this time and, indeed, her conversations when I visited her were all about how happy she felt about the life she had lived and how calm she felt about the death she now faced. I remember having a similar experience with my friend Ali before she died from the same disease. Our final conversations weren’t filled with fear, they were filled with love and acceptance. This, I’ve realised is a gift that the dying can offer the living; to show peace in the face of death. In exchange and recognition of this, the living can offer the dying a gift too. We can choose to show up at this time. To be there, in whatever way they need us. To express love and gratitude for the time we shared together. And, above all, to not avoid their death and our grief because it is too hard for us but, instead, to recognise that grief is often an unavoidable expression of love.

I’ll never forget the journey across to Northern Ireland to see Carol. The weather was wild to say the least. The boat rolled from side to side and up and down as many of the passengers took to lying down in a desperate attempt to avoid sea sickness. I have never been so grateful for a childhood brought up on boats in the Channel Islands!

When we arrived, after a stop for some much-needed food, Ewan drove me straight to the hospice. I wanted to see Carol straight away. I’d waited two weeks and I wasn’t waiting a minute longer. He dropped me off at the door, driving away to check into our hotel. This is what I’d asked for. I wanted to see her on my own first. I wanted time for the two of us to connect. Part of this was about my needs, but part of this was also about protecting Ewan. Carol’s diagnosis is the same as mine and, as a result, our stories have often mirrored one another’s. Ewan knows this and I could see the fear in his eyes about what her now being in a hospice meant for me and, ultimately, what it meant for him. Despite the open honesty in our household about my death and, indeed, about everyone’s certain death, I still wanted to protect him from it being so tangible. It turns out, however, there was no need. When death is faced with love, in the way Carol taught us both to do, it can actually be a really beautiful thing.

I walked into Carol’s room with no idea what to expect. We hadn’t seen each other face to face for a year and for at least half of that time she hadn’t allowed any photos. But I needn’t have worried. I was greeted by the same smiling and vivacious woman I loved and remembered. Without a second’s hesitation she had wrapped her arms around me in a hug, despite her pain and multiple medical attachments, and was asking me to get into bed beside her for a proper chat. I, of course, obliged.

As I lay there with her laughing and sharing stories with one of her other friends who was also there, sitting in a chair beside her bed, I began to reflect on the beauty of this connection. Here we were, three women, all of us living with a terminal diagnosis of ovarian cancer, two of us currently receiving chemotherapy and one of us dying from the disease and yet there was not one ounce of sadness in that room. There was only joy. How often could I say the same of other encounters in my life?

While in Northern Ireland I’d spent my mornings with Ewan walking our dog Ozzy, before spending the afternoons and early evenings with Carol at the hospice. We spent most of our time together sharing stories and laughing. Carol had even managed to plan a short 80s themed party in her honour at which all of the people in her life were able to come along to; many of them to say their final farewells. It wasn’t a sad affair, however. Instead it was one filled with music, food, celebration and fancy dress. Above all, it was filled with love. This wasn’t a woman mourning her premature death, it was a woman celebrating her incredible life. As I stood back and observed all of these people coming to see her, dressed in full 80s fashion no less, I couldn’t help but think of my own death and how what I was witnessing would be exactly what I wanted for myself – love, laughter, music and, of course, fancy dress.

The following day I knew I would have to say my own goodbye to Carol. We didn’t have the 80s costumes, or the party to hide behind. We were having to face this head on, in full recognition of the fact that we would never see each other again. I spent the afternoon with her, as I had done over the previous days. We were joined by one of her best friends, whom had welcomed my presence with such warmth despite it, undoubtably, encroaching on their precious time together. During this time we recorded a podcast together. This was something that Carol wanted to do to not only dispel some of the fears around being in a hospice, but also to share some of the lessons she had learnt about life and death. Unsurprisingly, most of what she talked about was love.

We both put off the moment when I would have to leave. “Just ten more minutes” became a frequent and then desperate phrase until, eventually, there was no choice but to say goodbye knowing that we would never see each other again.

It was one of the hardest things I’ve ever had to do.

As I drove away, my heart broken, tears streaming down my face, I reflected on how often I take for granted that I will see someone again. You see, while I knew I wouldn’t see Carol again, I never know I ‘will’ see anyone else in my life again. I reflected on myself saying goodbye in a rush to those I love; dashing away, not always lingering to hear my loved one’s words, to hold them a little longer, to entwine our fingers, to kiss their cheek, to hold them close for just one more second. All these things I did with Carol instinctively as I fought back the inevitable, love filled, tears from cascading down my cheeks until I left the room, not wanting her last image of me to be one of sadness but, instead, one of love and joy.

In one of the last messages I sent to Carol after I had returned back to Scotland, I asked her “but how will I do any of this without you?” “Simple,” she replied, “You will love harder like I have taught you just as you make every day good like Ali (my other friend who died from ovarian cancer) taught you and you will keep living your life every single day as best you can for as long as you can.”

As I reflected on this and the legacies that her and Ali had gifted me through our friendships, I wanted to know what my own legacy would be. What message would I leave for the people I left behind and those that came after me? I realised then that there was no better phrase than “never at the expense of joy”. If I were to leave any kind of impression on the hearts of those I love and who love me then please let it be that.

This brings me to the final and lasting lesson and legacy that Carol left me and all those who love her: LOVE HARDER.

Perhaps it’s that simple. Perhaps it’s not about always thinking that you may never see a loved one again. After all, that does feel more than a little depressing. Perhaps, instead, it’s just about loving them harder.

What does loving harder look like?

For me it’s about looking someone in the eye when they speak to me, rather than looking at my phone. It’s about always valuing my time together with loved ones as sacred, fleeting and precious. It’s about listening when they talk. It’s about asking about the things that matter to them and caring about the response. It’s about making memories, laughing and experiencing joy but also about being there in times of need and support. It’s about not being afraid to show your vulnerability when times are tough and also not being afraid to show your awesomeness when times are great.

I don’t always get it right. Far from it. I’ll sometimes sit scrolling through my phone replying to messages rather than cuddling into Ewan on the sofa. Or I’ll get distracted when someone I love is talking and miss the important part of their story. But I catch myself now and I call myself out for it. I’ll pause and ask myself “Is this how I want to live my life? Is this how I want to be remembered? Is that what Carol would have done” And then I’ll make different choices the next time. Ultimately that’s all any of us can do; take little steps, day by day to love harder, to connect more deeply and to choose to spend our time with those that matter most to us. Anything else, over time, ultimately costs us our joy.

This is what Carol taught me above all else and it’s the lesson I will carry in my heart until the day I take my own last breath. May this lesson be a gift to you too, even if you never had the honour of meeting Carol for yourself.
With love for Carol and all those who love her always, Fi xx
I’m sorry Carol. This post isn’t as ‘epic’ as you might have hoped because how can I put into words what you truly mean to me, the lessons you taught me or the fact that I will always carry you in my heart every single day that I am alive and able to do so.
I may not have known you through your school years, never had the opportunity to work with you, to go to the pub with you, to have adventures or holidays or build wild and fun memories together but what we had was something entirely different from these types of friendships. What we had was a deep understanding of each other’s pains and fears, of our daily struggles and what it feels like to live with late stage cancer every single day year in and year out knowing that one day it will cause so much inevitable pain to those that we love.
What you gave me, dear Carol, is one of the greatest gifts anyone has ever given me. You gave me true, unconditional love and friendship that enabled me to be seen in all of my darkness as well as my light, without fear of judgment.
I am so grateful that cancer brought us together and so sad that it tore us apart. While this blog post may not have been what you hoped for (it’s a lot of pressure writing for a dead person you know!) I want you to know that when I publish my next book it will be dedicated to you my lovely so that everyone will know what an incredible woman you were and continue to be in the hearts of those who love you.
May your name and all that you stood for continue to shine bright for many years to come and, in your memory, may we all remember to tell the women in our lives to be hyper aware of the symptoms of ovarian cancer. I know that you, like me, had only one wish following your diagnosis – if we can’t be saved then at least let our diagnosis save the lives of other women.
So please, dear readers, share the following symptoms with the women in your lives. There is no screening test for ovarian cancer (no, smear tests do not test for it!) The only way to find out if you have it is to know the symptoms and see your GP if you have two or more of them for two or more weeks.
Please do not ignore any of these symptoms. Early diagnosis of ovarian cancer is curable…only late stage diagnosis is not.
THINK TEAL
T – toilet habit changes
E – energy levels dropping
A – abdominal pain and/or swelling
L – loss of appetite and/or weight
Carol and I also both experienced shoulder pain prior to diagnosis and I always start to get migraines when my cancer is spreading.
Know your body.
Don’t be embarrassed.
See your GP.
If you don’t do it for you or for me then, please, do it in loving memory of Carol Barenham.
With love and gratitude always, Fi Munro xxx
gratitude, health, holistic health, kindness, ovarian cancer, positivity

Today I Rise Again

Today is a new day.

I rose today having felt what I was meant to feel, having seen what I was meant to see, having said what I was meant to say.

So many people ‘advised’ that I stop writing and that I focus on me. I know they meant this with the deepest kindness but writing ’is’ me focusing on me. It is my therapy, my release, my way of processing and feeling everything that is there to be felt.

I do not write for anyone else but myself – although, admittedly, it brings me so much joy to realise how my words have helped so many others.

I can’t help but wonder how different our world would be if someone had told Anne Frank to stop writing. I’m not suggesting I am anything like Anne Frank, a courageous young girl whom I have admired since first discovering her words when I myself too was only young, but I am suggesting that our stories are important, healing and essential. We must share our stories. We simply must.

I feel in a good place today, like I am emerging from something, like I am shedding an old version of myself and stepping forward into something new.

I sense change ahead, yes, but change isn’t necessarily bad and I find myself feeling a sense of excitement at this new adventure I find myself on.

I’ve been in worst places in the past four years since my diagnosis than I find myself in just now. There is, of course, one significant difference now. Now I don’t see chemotherapy as an option for me when the trial completely stops working (which it hasn’t, yet).

As I’ve written many times before, chemotherapy (and any treatment) is a very personal choice and I do not advocate for or against any options. But I do know that chemotherapy is not the right option for me. Not again. Not after 4 years ago. This is my inner guidance and I trust it profusely. Nothing and no one will ever change my mind.

So what are my options?

Just now, medically, it is to stay on the trial. It is to keep breathing in the gratitude that this wonderful cocktail of significantly less toxic drugs is doing something to slow down this disease (even if they can’t stop it completely).

But that is just the medical picture and, if I’ve learnt nothing else on this journey it is that the picture is bigger than what can and can’t be done in a hospital. There is so much more that can be done for my mind, body, spirit and soul.

So, yes, it is accurate when I say I am excited because I find myself wondering ‘what if there is another way?’

And that’s exactly what I intend to spend the next 16 weeks finding out.

Why 16 weeks? Because that is the length of time someone with ovarian cancer is on chemotherapy for…AND, more importantly, because 16 weeks today I plan to get my adventurous soul onto a plane to Bali where I plan to spend 4 weeks healing with my gorgeous husband…something that will only be possible if my lungs stay stable…so I’m excited…I have a focus, I have an aim and I have a shit load of passion.

It ain’t over and, as ever, I ain’t dead yet (motherf*ckers)

Uncategorized

Day 5 ‘inside’ and counting…

Well I’m still in hospital…

After my readmission on Friday night/Saturday morning the weekend was spent trying to get my symptoms under control. I continued to get antibiotics and fluids continuously via IV alongside morphine and anti-sickness through a syringe driver. Sickness continued to be an issue and eating a challenge I never thought I’d face – I mean did you see how much I ate at The Kitchin the week pre surgery!?! However, one or two mouthfuls and I was still being sick. I asked to be weighed and was horrified to discover I’d lost 1.5 stone in the last 2 weeks!! I didn’t even think that was possible! Weighing in at just 54kg now I became determined this was to be my main challenge to overcome.

I remember when I got diagnosed someone said to me…“you just need to eat, drink and go to the toilet, let the medical team take care of everything else.” I didn’t understand what they meant at the time, but I do no. I can’t control the drugs and medical interventions. The Drs can’t control my eating and drinking. Together we can work towards recovery…but apart…well that’s when things start to breakdown.

Step one was getting the medical help to get my sickness under control – so the anti sickness medication in my syringe driver was doubled. Now it was up to me to retrain myself to eat after three weeks of not being able to. It’s not as easy as it sounds. Very quickly your body builds negative associations. If, for example, every time you touched a door handle it gave you an electric shock you would soon learn not to touch the door handle! The same is the case if for three weeks, three times a day, every time you eat, you throw up. You no longer associate food wth pleasure, fuel or nourishment. You associate it with pain, anxiety and fear.

But, I’m a stubborn little buggar and this was not going to defeat me. Baby steps. Day by day. Bit by bit. It wasn’t easy and, as crazy as it sounds, retraining myself to eat was one of the hardest challenges I’ve had so far on this journey. Yesterday was actually the first day I managed to eat three full meals. And I tell you what…I feeling a great deal better for it! To overcome this I used meditation. I realised that whilst I had been very conscious of my emotional health prior to surgery, since my op I had gone on a downward spiral, completely disregarding my emotional health…which is probably what had gotten me into this whole cancer situation in the first place…I guess old habits die hard. Anyway, reflecting on how great I’d felt prior to surgery, for the past two days I have been meditating and I think I’m getting there now. I’m now going to lie though, the threat of artificial feeding may have also played a role! 

Monday brought with it the usual ward rounds and, with it, my oncologist, my Macmillan nurse and the local gynaecology surgical team; all of whom I have gotten to know really well throughout my journey and whom I feel all truely get who I am as a person and my outlook to life. It was comforting to see familiar and friendly faces and, once again, I felt assured I was in the best possible hands.

For example, my oncologist is wonderfully understanding and knows how important being outside and independent is to me and so actively encourages and supports me to make it outside for 15 minutes each day – these little things make a massive difference to your overall recovery and already I feel a million miles from how I did when I was first admitted.

However, despite this, I’ve been told to ‘bed down’ until at least next week. Whilst I may be over the worst of it (fingers crossed!!!) I am far from fighting fit. Over the last couple of days I’ve had three blood transfusions alongside a continuous cocktail of antibiotics and fluids. This has involved an IV in each arm and two drip stands, either side of my bed. I’m sure you can imagine the comedy of me trying to make my way to the toilet!…but I guess, at least, the fact that I can joke about it must be a sign that I’m getting better.

The plan now is to keep me on fluids and antibiotics and to repeat the CT scan later this week. If the ‘collection’ is decreasing then the antibiotics are having an affect and it is an infection. This could mean it may need to be drained, under sedation, using a CT for guidance. If it isn’t decreasing, however, then that would indicate that it is just a collection of fluid or blood and, ultimately, not an issue and that the pain and sickness was caused by something else. I guess time will tell. Until then I am making myself at home, making friends with my fellow ward mates and adjusting to life with ‘sound proof’ hospital curtains.

Love and light, Fi xxx

ovarian cancer

Readmitted to Hospital

An account of Friday 27th May – Saturday 28th May.

After an amazing evening meeting Nina Conti things took a turn.

When we returned home after the show, I went to bed feeling only a little more sore and tired than the previous few days but nothing to really complain about – but then through the night I was up three times to take ‘breakthrough’ morphine to help with the pain. I had, of course, expected to feel more tender after braving a trip to the theatre so soon after my discharge from hospital but this was crazy pain – I was in agony!

Morning soon arrived and with it a whole new set of issues. I couldn’t stop being sick. Every time I tried to eat anything I was sick. This was an issue. I needed to eat to take my tablets and my tablets were my pain relief – so now I had uncontrollable pain and sickness. I spent most of the day in bed, except for when the district nurse came round for her daily visit to change one of my dressings. She offered to call in a Dr but I thought I had things under control and declined, returning to bed for more rest. As evening came my symptoms began to settle as I finally(!!) managed to keep my tablets down. I thought I’d overcome the worst and went to bed hopeful of better things the next day…

How wrong was I…

During the night I woke to a pain I didn’t think was humanly possible to feel. I remember vividly thinking death would surely be a more humane option than the suffering I was feeling. Medication wouldn’t stay down and even a sip of water resulted in continuous vomiting. It was time to admit defeat. Something was seriously wrong. This wasn’t just a case of overdoing it going to the theatre.

My husband called the national cancer helpline for advice. For the first time ever no one answered. I knew my husband was panicked and I was now on a different planet with the pain, unable to move and hardly able to speak I remember mumbling for him to call 999. He did and was told it wasn’t an issue for them and that they would get NHS 24 to call him back.

He tried the cancer helpline again and someone answered straight away (hurray!). After he explained the situation they transferred him to the oncology ward at the hospital I receive my chemotherapy and they agreed I needed to be admitted and that they would send an ambulance. Incidentally it was another 90 mins before NHS24 called back…

I don’t remember much after that, I think I kept falling in and out of sleep. I do remember that every time I came to my husband was siting by my side ensuring I was ok. He’s told me since that it was two hours before the ambulance arrived.

When the paramedics did arrived they came upstairs to our bedroom and strapped me to a seated stretcher so they could carry me downstairs and across the driveway to the ambulance. It was early daylight by this point and I remember a misty rain hitting my skin – I was shaking from anxiety and pain and wrapped tight in a blanket but the rain on my face was refreshingly comforting nonetheless.

The paramedics soon had me strapped onto the trolley in the ambulance and one of them held me during the drive. I remember him reassuring me the whole drive, telling me we would be there soon and that my husband would meet us at the hospital.

By the time we arrived I was a mix of exhaustion and anxiety but I so vividly recall one of the oncology nurses, who had treated me in January, meeting us and taking my hand as I was wheeled to the ward and saying ‘hello stranger‘ and smiling warmly at me. It was a tiny gesture but I knew I was in safe and caring hands and I physically felt so much tension leave my body.

On the ward there was already a Dr waiting to put a cannula in my arm so that an IV of fluids could be connected. Obviously by this stage I was dehydrated to say the least! Bloods were taken too and my surgery site was checked over before I was sent for chest and abdominal X-Rays.

I’m not sure when my husband arrived, in my memory he was there the whole time but I know that’s not possible because he had to sort out our pets and gather together my medication and bags before even following the ambulance. I do remember, once the IV fluids started to take affect and the lovely hospital morphine was masking the pain, that the nurses sat with us and comforted us. They gave us so much support. They made us laugh. They reassured us. They were everything and more and I am so so grateful. I remember one saying to my husband that they appreciated what he must have gone through in the last 36 hours and that he was to go home and sleep because I was safe now. I loved that. The fact that they weren’t just treating me but instead seeing us as a whole unit entwined in this cancer journey – truely person centred care to say the least.

Saturday morning I was taken for a CT scan. I hate CT scans. My first CT scan was an emotionally traumatic experience and I’m never overly trilled at the suggestion of one. However, it was of course painless and fine. The staff were wonderful and it was over in less than 5 minutes. More importantly, whilst the X-rays had been clear, the CT scan started to give some indication of what was causing my pain and sickness.

It appeared that there was a ‘collection’ sitting behind my liver. A ‘collection’ of what remained the question – Blood? Fluid? Infection?

The infection markers from my blood tests indicated the latter and so I was soon prescribed a range of strong anti-biotics to be administered continuously via IV. I was still getting fluids and also had a syringe driver (pictured) administering morphine and anti-sickness. Things felt under control and, although annoyed I was back in hospital, I began to accept that it was the place I needed to be…even when told to expect to be in for at least a week…

Love and light, Fi xx

Uncategorized

Stage Three Ovarian Cancer*

The next morning my parents arrived and it was wonderful! They had been in Spain when I had to tell them the news and had spent over 24 hours driving back (with little to no sleep acquired only in service station car parks) since my diagnosis and I have never been more happy to see them!

I may be 30 years old but let me tell you, when you hear you have cancer you are instantly a 6 year old wanting a cuddle from your parents…I don’t care how old you are!

The nurses kindly let us sit in a side room together and we talked for a couple of hours about my diagnosis and the questions they had. I am in awe of their strength for me as I can only imagine what was going through their heads but, as ever, they respected my positive outlook and stayed optimistic and strong throughout our chat.

Again, I repeat that the hardest part of a cancer diagnosis is telling the people that you love that for some unknown reason this devastating illness has now selected you.

After my parents left my husband and I were met by an oncologist and macmillan nurse to receive my full diagnosis.

They explained that my cancer had spread to stage three. This meant that it had spread out with my pelvis and was now in both of my ovaries, my womb, my peritoneum (the membrane that surrounds and keeps my organs in place) and my omentum (the fatty membrane that covers the front of my bowel). I’ve included a very helpful image from Macmillan Cancer support’s “Understanding Cancer of the Ovary” booklet (pg. 13) incase, like me, you hadn’t taken all this in during biology at school!

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They explained that this diagnosis meant that I would need to have a full hysterectomy as well as having my peritoneum and omentum removed and that this would involve a team of up to 6 specialist surgeons in one operation. They also explained that I would need chemotherapy and because of the aggressive nature of my cancer (feisty like me!) they would be starting with chemotherapy before surgery and repeating the CT scan after three rounds of chemo. Yay more dye in my wrist – note sarcasm!

They went on to explain that the CT scan had also shown a small collection of fluid in my right lung and that this would need to be drained to be tested for cancer cells. If this did contain cancer cells then I would be diagnosed as stage 4 because the cancer would have spread to organs out with my abdomen. It goes without saying that this was a lot of information to take in but I can honestly say that the clarity that it was explained in by the oncologist and the support of my Macmillan Nurse made it all the more easier to take in.

**warning the following may be graphic for some**

I was told that I would need to have the fluid drained from my lung and that this would need to be done straight away. This was to be done in the respiratory ward of the hospital where a Dr used an ultrasound on my back to locate the fluid and then inserted a needle into my lung through my rib cage and extracted the fluid using a syringe. Remember I said the dye going into my wrist for the CT scan was painful? Yeah that ain’t got nothing on a needle in your lung with no pain relief! Wow is cancer a painful process!

After the fluid was collected the Dr put it in three vials for me to take back to the ward for the lab to screen. I took these on my lap as I was being wheeled in a chair between wards. Now I’m going to be gross but they were warm and that was just weird! Yeah I know that the fluid had come from my body but oddly I just didn’t expect them to be body temperature- although it sounds kinda obvious as I type it!

**graphic description over**

After that ‘experience’ I was free to go home with my suitcase of drugs! A crazy concoction of pain relief and anti-sickness medication. Something none tells you when you get cancer….you need a huge handbag(!!) for all the notebooks, leaflets, medication, books etc you will need to carry with you at all times! Oh but you won’t have the strength to carry it so you will also need someone to do that! Haha. So my poor husband is on official pink/yellow/orange handbag carrying duty!

When I got home my awesome hubby wrote a motivational quote on our kitchen blackboard that will be my mantra as I get through this:

I have cancer. Cancer doesn’t have me.

That night it was pure nirvana just to be in my own home and own bed and able to get a good night sleep. The little things in life (that we are all often guilty of taking for granted) are really all that matter in the grand scheme of things…

love and light, Fi xx

* I was diagnosed with stage four cancer two weeks after my initial diagnosis of stage three.

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CT Scan…finding the cancer

Following the news I had cancer my consultant asked me to come to hospital the next day and be admitted as an inpatient. This was so I could get a CT scan, some medication to manage the pain and sickness and a drip to manage my dehydration.

I was told to arrive at 10am and, because I didn’t know how long I’d be in for and because I love an excuse for some nature time, I went for an early morning walk with my husband. Isn’t there something magical about the cold winter air when you are feeling down and crapy?!

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It was a beautiful day and really helped to give us some perspective, and time away from our constantly buzzing phones(!), to just be alone together and talk about what was going to be happening over the next year.

When we arrived at the hospital I was put on a drip as planned – cue a million attempts at getting a cannula in my hand!…hard to believe I used to be a blood donor with the hopeless veins I know have!

I was told I’d been booked in for my CT scan at 2pm so in the meantime I sat and chatted with my husband and two sisters playing ‘Cards Against Humanity’ – if you’ve not played it before I can only warn you that it is not for the faint hearted(!!) and probably sums up my dry sense of humour entirely! It is a great laugh!

There was almost a sense of relief in going for my CT scan – it may sound crazy but I knew it was taking me one step closer to my recovery and although I knew it was likely to uncover news I didn’t want to hear, it was all part of the necessary process. However, once I was in the CT room I had what we will call my first ‘moment’. They had to put dye in the cannula in my hand and it was so painful! I am pretty good on the old pain threshold side of things but wow was that a sore one! I cried and think I may of actually screamed at one point as the poor nurse injected the dye and rubbed my hand for comfort.  On reflection, this was the first time I had been alone since my diagnosis and I think what actually caused this reaction wasn’t the pain but the reality of a long journey in which often only medical staff would be able to hold my hand.

The CT scan only lasted about 10 minutes and then I was able to go back to my bed on the ward. I was exhausted – it is amazing how much cancer (and not being able to eat because of cancer) exhausts you!

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That evening my husband and I met with two oncologists and were told the early results of the CT scan. They explained that they review the suspected primary sites first (in my case my ovaries) and then your vital organs (head, liver and lungs) and then the rest. Whilst we knew we would get the full results the following day following their multi-disciplinary team (MDT) meeting they wanted to let us know that it had been confirmed that I had cancer in my ovaries and that my head and liver were clear – well thank f%&k for that…some monumental good news in a sea of crazy!

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That night I didn’t sleep well – a result of having a bed next to the nurses station and the anxiety of waiting for the full results the next day.

love and light, Fi xx