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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

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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