ovarian cancer

Remission 

This week I was told I am in remisison!


This post summarises my holistic journey so far and the next steps going forward…

In January 2016 I was diagnosed with stage four ovarian cancer.

Due to the cancer spreading into my chest cavity and sitting on my right lung (confirmed by a horrendous biopsy!) I was told that my cancer may be inoperable.

A decision about whether or not I could have an operation was to be made following my first two chemotherapy treatments.

I started chemotherapy two weeks later.

At this time I was unable to walk around the block without collapsing; I was so weak from pain, abdominal fluid and the stress my cancer was putting my frail body under.

So, in support of my cancer treatment (which I know would only make me weaker) I also started to make many lifestyle changes:-

  • Daily Himalayan salt baths
  • Daily exercise
  • Signed off work
  • Reduced/illuminated stress
  • Daily meditation
  • In nature daily
  • No sugar
  • No dairy
  • Minimal meat
  • 8-10 veg a day
  • Only drinking water
  • No processed food
  • No alcohol
  • Natural makeup
  • Coconut oil as makeup remover
  • Coconut oil as moisturiser
  • Drinking at least 2ltrs per day
  • Vegetables at every meal
  • Started seeing a therapist
  • Took control of my health and situation
  • Accepted my diagnosis
  • Had a veg juice every day
  • Daily yoga
  • Built up my strength until I was able to walk 2-3 miles daily
  • Min 2 hours outdoors each day
  • Made all food from scratch – including my cereal
  • Daily homemade ginger juice

Within a month I started to feel much stronger, despite the side affects of my cancer treatment (which is brutal!)

I benefited from:

  • Better sleep
  • Better skin
  • No bloating
  • No pain – stopping pain relief

After two rounds of chemotherapy I was given a second scan. This showed that there was no longer cancer on my lung or in my chest cavity and I was approved for radical, major surgery.

I had a third round of chemotherapy before my operation in May 2016.

My operation took over 11 hours to complete, during which time they removed:

  • my cervix
  • my womb
  • my ovaries
  • my right fallopian tube (I only had one prior to surgery due to a previous operation)
  • my omentum
  • my appendix
  • my spleen
  • part of my colon (resulting in a colostomy bag)
  • part of my liver
  • part of my diaphragm
  • part of my pancreas 

I spent some time in a high dependency ward, followed by four weeks in a surgical ward.

Three days following my discharge home I was readmitted by ambulance due to an infection behind my liver.

I spent an additional two weeks in hospital.

This was the lowest point of my journey, seeing me receive multiple daily blood tests, drips and treatment. I was unable to eat properly and as a result I was growing weaker and more frail. I was also no longer in control of my health and unable to do any of the activities listed above. My oncologist and medical team recognised this and worked flawlessly together to get me discharged as soon as possible.

Despite several further hospital admissions, within four weeks of being at home I was no longer on any pain relief. I put this down to the alternative activities above and my holistic approach to my health care.

Following this episode I have received three further doses of chemotherapy. This has brought me to the ‘end of my treatment ‘ and with it my end of treatment scan.

This scan provided my oncologist and medical team with a baseline for future observation.

I am absolutely thrilled to say that yesterday my oncologist told me that my scan shows that my treatment to date has put my cancer into remission.

I am also extremely grateful that my oncologist took the time to show me all of my scans to date, allowing me to see my cancer and its affects on my body in January as well as my cancer free (and organ depleted) body as it is today. This was fascinating and offered me so much peace of mind.

I am more than aware that there is every chance that my cancer will relapse. My oncologist is very open with me which makes things a lot easier to deal with. However, I’m a strong believer in living for the moment and in this moment I am cancer free and loving my life!

I’ll not be giving the possibility of a relapse a second thought as all this serves to do is take the joy from today! This reminds me of my favourite quote from the founder of Maggies:

Don’t loose the joy of living in the fear of dying

Today I can say I am free from cancer

Today I can say I am in remission

Today I can say I had cancer

And what is more important than today?…

I, of course, will continue to have a holistic approach to my healthcare.

I will continue to focus on my physical, emotional and spiritual health.

I will continue to blog as my journey is still ongoing (I am still receiving formal medical treatment and support)

I will continue with my random acts of kindness.

Today I am happy and wish happiness on everyone else.

Love and light, Fi xx

ovarian cancer

Chemo 6 – The Last One

So the day has finally arrived. Tomorrow is my last chemo. Just six months since my diagnosis with stage four ovarian cancer.

I should feel elated. I should feel relief. I should be buzzing.

I should…

But instead I find myself faced with mixed emotions.

On the one hand I’m, of course, relived that I won’t have to go through chemotherapy any more. No more side affects. No more hours of sitting connected to a drip. No more chemo related hospital admission. Instead my body will finally be able to start recovering from months of treatment including extensive surgery.

On the other hand, however, I feel afraid. Chemo has been ‘attacking’ my cancer (and me!) for the past 6 months. It’s been doing its job to shrink my tumours and make me ‘well’. What will happen when chemo stops? Will what I’ve received be enough? Will I hear the magical word ‘remission’ following my final scan? What if I don’t? What if the chemo hasn’t been enough? What if cancer still occupies my body?

And…what if my cancer is in remission? Will I spend my life worrying about its return? Does cancer ever, truly, leave your life? Or does it remain a dark shadow from which you peer at over your shoulder as you try to live as a ‘normal’ human being?

So many questions are running around my head as I write this but don’t worry, I don’t feel sad or depressed I just feel inquisitive and a little frustrated (more on that later). Ending chemotherapy treatment opens me up to the next phase in my journey. It is an unknown phase and, as a result, it’s only natural (and healthy) to enter into it with questions.

I’m not alone in these thoughts either. Every ‘cancer book’ I’ve read which has been written by a fellow warrior shows evidence of these shared thoughts. Every fellow ‘warrior’ I’ve spoken to about this phase also shares some, if not all, of these thoughts and questions.

I take comfort in this.

What is hard, however, is the dialogue with people without cancer and the misconception that the end of chemotherapy automatically means that everything is ‘ok’, that everything is ‘all fixed’, that I am ‘better’. It’s a misconception I had myself before my diagnosis and of which now I feel very sad…and a little guilty.

Unfortunately, in particular with a stage four diagnosis, that just isn’t the case. Instead, the end of chemotherapy just marks the end of what the NHS is able to provide. Fingers crossed its worked and I’m in remission, but, unfortunately, not everyone is that lucky.

That’s another thing – Remission. The magical word everyone with cancer wants to hear. But remission doesn’t mean ‘cured’ it just means that your disease has stopped growing…for now. However, the word ‘remission’ is all too often followed by the word ‘relapse’.

I used to think that when someone was in remission that they were all better, that their cancer was gone and things could ‘return to normal’. Now I know the frustration that this misconception can cause a cancer patient. The end of chemotherapy (and even remission) can be a scary time for a patient. Perhaps even scarier than the cancer diagnosis itself. After months of support and treatment that we know is prescribed solely to ‘treat’ our cancer, we are suddenly going it alone. Yes of course there is the emotional support of wonderful organisations like that which I receive through my local Maggie’s Centre and Macmillan nurse (without whom I would be so lost!) but that ‘medical’ lifeline, the chemotherapy that we hate but that we also know is a necessary evil, is now gone.

Don’t get me wrong, I’ve dreamt of this day for months. With each chemotherapy treatment I have counted down the number of sessions left before I can say I am free of chemo. I’ve seen the happy photos of people marking their last day of chemo – and tomorrow I’ll even take my own, knowing that one day I will want to look back on the monumentus achievement of completing my chemotherapy because, let’s be honest, it’s bloody tough! But, deep inside, I feel like my security blanket has been pulled away from me.

The issue isn’t about prognosis or fear or uncertainty. These are aspects I’ve been dealing with since being diagnosised with stage four cancer.

The issue is the frustration of having to explain that the end of chemotherapy doesn’t mean ‘all better’, that maybe I’ll never be ‘all better’, that maybe I’ll be living with cancer for the rest of my days…however many there may be. And that’s ok. I’m still grateful for my cancer – whatever the outcome.

So, amongst my ramblings and deep thoughts that I so desperately want to express because no one ever really wants to talk about this phase of their journey, I guess what I want to do is provide some dos and don’ts for supporting someone with cancer when they are finishing treatment.

Do

  • ask them how they are feeling about this stage in their journey.
  • ask what support they need – they may want to celebrate or they may want to cry. Whatever they want, be there.
  • Understand that this can be one of the scariest times in a cancer journey and the most likely time for social support to cease – be the one to stand by them.
  • If they chose to open up to you, listen. Really listen. They may want to talk about outcomes you don’t want to hear about but they need to say those thoughts out loud so that they are no longer as frightening as they seem in their head or even, sometimes, just so they can laugh at how ridiculous they are being!
  • Ask if they need you at any follow up appointments.
  • Respect their decisions regarding their treatment, even (maybe especially) when you don’t agree with them.
  • Respect that they may not want to talk about cancer anymore. They may wish to cease being labelled as ‘your friend with cancer’ and just return to being ‘your friend’.

Don’t

  • Presume that they feel the same way as you do about this stage in their journey.
  • Compare them to other cancer patients – everyone is different, even those with the same diagnosis.
  • Tell them everything will be ok. You don’t know that and it can stop them from feeling that they can open up to you.
  • Only talk to them about cancer. They are still interested in all the same things that they were prior to their diagnosis. They are still the same person.

If you’ve had a similar experience at this stage in your journey, or want to add to these dos and don’ts please get in touch. I’d love to hear from you!

Love and light, Fi xxx

ovarian cancer

Chemo 5 – In a Mermaid Tail

On Thursday I had my fifth dose of chemo – also my first chemo post surgery which, on numerous occasions, I’d be warned would be ‘rough’.

I’ve gotten myself into quite a nice routine with my chemotherapy now. I get my bag packed the night before with everything I might need – from books and my iPad to a wide range of snacks! I also try to get the house as organised as possible, knowing that over the next few days I’ll not be up to doing much. I have to stay up until midnight to take ten steroids the night before chemo (and then ten more at 7am!) so that usually gives us plenty of time for running around the house getting things in place before my husband and I settle on the sofa to watch something together until I need to take my meds.

This chemo was different though. My husband was going to London with work for two days (just one overnight) and my sister was coming to stay to look after me. This meant that he also had to pack and we had to get the house ready for a guest. We got everything done but it felt less relaxed and organised than usual. I also felt sad at my husband going away. Of course I was happy he was having a well deserved  change of scene – goodness knows he deserves it! – but chemo can be unpredictable and I’ve become so used to his amazing support.


The morning routine was different too. My husband was collected by taxi first thing and my parents picked me up to take me to the hospital. Ordinarily my husband would just take me on his way to work. It felt strange going with them but again it was also nice that they were able to see a little part of my journey.

I’m a bit funny about chemo, I like to do it alone. I don’t mind visitors, but I also really like to spend the time chatting with other people getting chemo and getting to know the nurses. So my parents left after 15 minutes and the nurses began their routine of putting a venflon in my arm and giving me my many anti-sickness drugs.

I’d been worried about getting a venflon. A PICC line had been discussed and I was so desperately hoping that some miracle would happen and my veins would be easily accessible for once. As it happened I was in luck. My chemo having been delayed by a day meant that a nurse who I swear has X-ray eyes was on shift. She manged to get a venflon in my vein on the first attempt with no pain! That’s never happened! I’m also pleased to say that now all my treatments will happen on a Thursday so she’ll always be working – here’s hoping this means I can put off that PICC line a little longer, if not forever. No pressure!

Receiving my chemo was pretty straightforward as always. It’s just a case of sitting there for 8 hours whilst the nurses change the bags of fluid running into my veins. We start with IVs of antihistamines and antisickness before moving on to two different types of chemo and then finally a bag of avastin – the maintenance drug that helps prevent my cancer growing new blood vessels. Sadly this drug is not available to everyone with ovarian cancer so I always feel very blessed when receiving this.

To keep my spirits high and because why the hell not, I decided to wear my mermaid tail blanket during chemo this time. It gave me a smile and proved a hit with the other patients too. It’s always important to maintain a sense of yourself during treatment – goodness knows chemo takes enough of you away!

I foresee these becoming a future hit in chemo wards. Haha!

Ordinarily in the three days after chemo I’d rest at home before venturing back to my usual routine. Unfortunately my blood tests that morning had shown that my magnesium levels were still low and so I was told I’d have to come in the next day to receive another magnesium infusion over five hours. Partly this was a relief as it meant that for the majority of the time my sister was watching me while my husband was away I’d actually be in hospital and she wouldn’t need to worry. However it was also a pain as I really like just lying in the bath the day after chemo to stop my bones aching and now this wouldn’t be able to happen.

However, the chemo nurses were very supportive of my concerns about my husband being away during this dose of chemo and of my sister caring for me in his absence – my husband has had months getting used to side affects and hospital admissions, I didn’t want my sister suddenly put on a fast track course! So they gave me extra anti-sickness drugs and pain relief and, thankfully, these did the job. I went home feeling relatively normal aside from being tired and a little grumoy – which I’m sure my sister would concure! We even managed to have dinner together before I napped on the sofa!

I maintained feeling well the next day during my magnesium infusion too. This was some kind of record…I’d thought this chemo was meant to be tough?…little did I know this was the calm before the storm. Two days later I was admitted to hospital in a similar style to my previous visit. I was in pain. I was weak. I was scared (more on this in a future post when I regain my strength).

Love and light, Fi xxx

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Did you know smear tests DO NOT screen for Ovarian Cancer?

ovarian cancer

Chemo Pre-Assessment & CA125 Levels: Chemo 4 – Day 1…

I get lots of questions about what chemo is like and how I react to cancer treatment and all the appointments etc etc so I’ve decided to blog on each of the 21 days in my fourth chemo cycle so you can read what it’s all about and what’s involved.


There are many different types of chemotherapy, however, and everyone responds differently so please don’t read this and think it’s the same for everyone on chemo…us cancer patients hate that! 😉 for instance even two women with stage four ovarian cancer receiving the same chemotherapy will respond entirely differently from one another…

…Anyway, my chemotherapy cycles are 21 days long with my chemotherapy being administered on day three…

So today is day one in my fourth cycle and involved a wee trip to the chemotherapy ward to have my weight, blood pressure, pulse and temperature taken. The nurse informed me I’ve lost another 2kg! I’m not sure how this is possible since I am eating lots and on steroids! But nevertheless this means I’ve now lost a total of 9kg since my diagnosis!…turns out chemo is the secret weight loss program we’ve all been waiting for!…haha!

I also had some blood tests taken. These tests are looking at two things. Firstly they are checking my white blood count to see if my immune system has returned to a high enough level for another dose of chemotherapy. Secondly they are checking my CA125 levels (aka ovarian cancer marker levels) to see if these are reducing after each cycle and thus providing an indication that I am reposing well to chemotherapy.

Today the nurse managed to get some blood from me with great ease – a rare event as my veins are increasingly worse thanks to chemotherapy which thins your veins.

All my vitals were as expected and when I saw the Dr (after the nurse) I was assured that she thought I’d be fine for chemo four in two days time but that she’d call me if my blood results suggested my white blood count was too low – I’ve not received a call so I should be good to go!

Whilst there I also asked the Dr what my cancer marker levels had been doing since my diagnosis…and here is the interesting bit…

At the time of my diagnosis my levels were 453.

After chemo cycle one they had reduced slightly to 326.

Then after chemo cycle two they had reduced to 94!

‘Normal’ levels are 20 so this is all good signs that I’m responding well to chemotherapy – hurray for some good news!

Since my diagnosis I’ve become increasingly aware of all of the toxins in my life and so, in addition to chemotherapy, I’ve also changed a number of factors including the food I eat which is now all organic, dairy free, mostly sugar free and free from all processed food. I made this change after chemo cycle two and I think the blood marker results speak for themselves on the impact of this in partnership with chemotherapy…more on this in a future post…
On Wednesday I’ll find out what level they are at now but in the meantime the Dr was able to give me preliminary results of my CT scan from last week which also shows I am responding well to chemotherapy.

Now this is obviously all good news but also expected – as I’ve said before, they don’t give you chemotherapy if they don’t expect it to have an effect! So no celebrations at this stage!…

For me the real good news will be if/when they can get my cancer to an operable stage. Fingers crossed until then!

The Dr also gave me some ‘great’ (insert sarcasm) news that after chemo four most people loose their eyebrows and eye lashes. Well that sucks! Especially as my hair is starting to grow back now and she also told me I’ll loose that again too…it’s not very glamorous this cancer lark!

After my appointment I had some lunch with one of my sisters which was lovely! I always try to see family in the couple of days before I receive my chemo as I’m so unwell afterwards and really not up for any visitors for at least a week.

Going out for lunch means I’ll need a lazy afternoon and evening on the sofa. This is because the affects of chemotherapy are accumulative and so now I’ve had three doses I only really mange a couple of hours a day before I start to feel fatigue. This is something I’m becoming used to so I no longer find it a big deal but rather just something I have to accept as a way of life during my treatment….it certainly helps to prioritise the day!

Love and light, Fi xx