ovarian cancer

Good News – Let’s Dance

Some good news to share with you all…

Yesterday I was in hospital for my monthly treatment* AND…
My cancer markers are down AGAIN! They are now just 5!! Anything below 35 is healthy and signifies ‘no evidence of disease’ so this means I’m still in remission ☺️💛
And my magnesium is now at a healthy 0.63!
Today is a good day! ❤️💕❤️

Love and light, Fi xxx


*I receive Avastin every four weeks to prevent cancer growing. This amazing drug is only available in some places in the U.K. and so I am very blessed to receive it 🙏

ovarian cancer

Magnesium – how low can it go?…

Although I had my last chemotherapy two months ago, I am still receiving monthly infusions of Avastin to stop any remaining cancer from growing new blood vessels.

This is an utter blessing as thousands of women are not able to receive this previous drug due to the legislations in their area. I feel very blessed every time I recieve my monthly dose as I am all to aware that it is offering me precious time with my loved ones. An opportunity which is sadly  denied to too many others.


Two days before each Avastin dose I visit my GP practice for blood tests to check that I am healthy enough to receive the infusion. Primarily they are checking my protein levels are high enough. In addition, they also check my CA125 levels. This is the cancer marker for ovarian cancer. Although it cannot be used as a screening for whether you have ovarian cancer or not – because everyone’s baseline is different – once you have been diagnosed it can be used to determine if you cancer is active. For example, the CA125 tends to double quite quickly over a short space of time if there are active ovarian cancer cells.

During my Avastin dose I was in discussion with one of my wonderful chemo nurses and she very kindly offered to print out a chart showing how my CA125 levels had changed over the last 10 months, including the month prior to my diagnosis.


This shows that my levels were doubling in December and then started to decline from January onwards as I received chemotherapy and surgery. They are now in the ‘normal range’ which is between 0-35. Even better though, they have come down slightly from 7 to 6 since stopping my chemotherapy.

Here’s hoping they stay there!

Unfortunately, chemotherapy has left my magnesium levels depleted, despite daily tablets, regular infusions, salt baths and a diet high in magnesium containing foods.

For this reason the blood tests also check my magnesium levels. Prior to this test I knew my levels were low as I was becoming symptomatic with aching bones and weakness in my limbs as well as fatigue. I wasn’t surprised then when the hospital said that I’d need another magnesium infusion when I had my Avastin this time.


However, unusually, I wasn’t able to tolerate the complete dose of magnesium. I felt hot and dizzy and my heart was racing. I also felt very sick and like my sugar levels were dropping resulting in me demolishing a tin of sweeties in the ward – very unlike me!

I tried to bear it but eventually I had to ask my lovely nurse to stop the infusion. Since then I have had four days of sickness caused by the mageaium drip – a side affect I get each time I receive a magnesium infusion.

Unfortunately, this time I also still have increasingly aching bones and weakened limbs as well as debilitating fatigue as my magnesium levels remain low. I am feeling very frustrated with this as the side affects of both having low magnesium and the infusion needed to restore my levels are unbearable! On the bright side I’m told that my levels should start to rise the longer I am off chemotherapy.

My nurse also gave me a chart showing my magnesium levels over the past ten months which I find facinating.

My next Avastin infusion is not until mid October so I’ll have blood tests in a ten days to see if I need more magnesium before then. Judging my how my tormented body has felt over the last few days I’d say it’s a definite yes!…but hopefully change will happen of its own accord before then. I can but hope.

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

Postcode lottery: Chemo 4 – Day 12

Cancer care (or any care for that matter) shouldn’t be a postcode lottery. It shouldn’t matter what country in the UK you live in…or, for that matter, what town…

It shouldn’t…

But sadly this is not the case.

In ovarian cancer Avastin (bevacizumab) is an amazing drug that works by preventing ovarian cancer from developing new blood vessels and ‘recovering’ from the damage chemo is doing to our tumours.

Ovarian cancer is renowned for becoming resistant to chemotherapy. Avastin helps postpone this. 

 It is given through an IV every three weeks for a period of 9 months.

It is given to woman with stage 3 and stage 4 ovarian cancer.

At this stage our cancer is incurable.

Avastin gives us time.

Time with family. Time with loved ones. Time when our cancer isn’t spreading.

But it isn’t given to all of us.

Whilst I am lucky enough to receive treatment from an NHS trust that administers Avastin, neither the National Institute for Health and Clinical Excellence (NICE) in England, nor the Scottish Medicines Consortium (SMC) in Scotland have recommended its use. It is also not administered in Northern Irland or Wales.

Whilst some people are given it as part of a clinical trial, or if their NHS board has specialist funding, everyone else has to make a choice to move house or to go without.

To go without that extra time…

But…you can help ensure every woman with ovarian cancer is given Avastin.

You can help ensure grandmothers, mothers, daughters, sisters, aunts and friends have more time…

The Westminster Government is currently reforming the Cancer Drugs Fund (CDF).

You can write to your MP asking them to raise this with the Secretary of State for Health. 

Target Ovarian Cancer have created an online form with a letter already written. All you need to do is enter your name, address and email address and click send.

It will take you less than 2 minutes.

It could give thousands of woman another 9 months.

2 minutes of your time for 9 months of theirs.

Think about it..but not for too long…

Do the right thing.

Thank you on behalf of every woman still to be diagnosed* with late stage ovarian cancer.

Love and light, Fi xx

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*whilst under the proposed reforms there is a risk that Avastin (bevacizumab) might not be available to women diagnosed with ovarian cancer in the future it will continue to be available to women receiving it now.

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ovarian cancer

Receiving Chemo: Chemo 4 – Day 3

Today I received my forth dose of chemotherapy…and some very welcome flowers!
 As predicted I had very little sleep last night…I finally got to bed at 1am after taking my steroids and woke at 5am unable to get back to sleep.

I took my second dose of 10 steroids at 7am as directed. They make me feel so sick and their affect is already visible in my face…for honesty I’ve included a photo without makeup (don’t judge me) as it can be hard to hear I look well when I feel so awful. My secret is that I just use good makeup!

 
My husband dropped me off at the hospital for 9.30 am. He doesn’t come with me to appointments as I like to spend the time on my own as I usually get so sleepy during the treatment. Also I like to get to know the nurses and other patients.

When I arrived I was told that they were starting the treatment with another blood test as my red blood cells are low and I need a blood transfusion. I need a what now?! I didn’t know this could happen so it was a huge shock! I’ll be receiving 2 units of blood on Monday. I’m told this will help stop me feeling so fatigued and also help me to stop feeling so cold all the time. I was also told that my white blood count is low. It’s high enough for chemo but not ‘normal’. In fact I was told today it will now take about 6 months after I complete all my chemotherapy cycles before my level will get to a ‘normal’ level. I’m a bit freaked out about getting a blood transfusion whilst my white blood count is low but I know that I need it for my red blood count and Ibdefinitely look forward to feeling a bit better afterwards.

I’ve mentioned in my blog a few times that my veins in my hands are increasingly challenging to get a cannula into so the nurses gave me a bowl of hot water to soak my hands in to help get my veins to the surface. This trick appeared to work well but it still took a couple of attempts to get a vein willing to cooperate.
  
Once the cannula was in the nurse was able to take a blood sample to send to the lab so that they can find a blood match for my transfusion. Next she put a syringe of saline through the cannula to flush my vein.

Before each of my chemotherapy treatments start I am given a number of medications to prevent an allergic reaction. So in addition to the steroids I’ve been taking (and will continue to take over the next couple of days) I was also given two different anti sickness tablets today – one of which I will need to take with my steroids and usual medication over the next few days and one which I take just today.

 
I am also given two medications throughly IV line into my cannula – the first prevents damage to my stomach and the second is an antihistamine. Administration of these drugs takes about 30 minutes for each one and involves a syringe to flush the cannula with saline between each drug.

During this time I was also told that my CA125 levels are now 50. This is a decrease of 44 since my last chemo treatment. I’m pleased they have come down again but would have liked a larger decrease. Good news all the same.

I was also told that my magnesium levels are low and so I’ve been given new tablets to take twice a day – apparently this is a common side affect of chemotherapy.

Because of the need for all of these medications it wasn’t until 10.45 am that I was able to start my actual chmeotheroy.

I usually receive two chemotherapy drugs to kill cancer cells and one drug that prevents cancer cells from growing new blood vessels and therefore spreading.

The first chemo drug I receive is Paclitaxel (Taxol). This is administered through an IV into my cannula. This usually takes three hours, however, an hour into the process my cannula site started to become very painful so the nurse gave me a second cannula in my other hand. This took three attempts because of my bad veins. Now this is the awesome part – I was getting increasingly anxious because I am aware that if they can’t find a vein then they need to insert a PICC line straight into a main artery. This line stays in for up to 6 months and so the reason I don’t want one is because it would be an obvious sign that I’m receiving treatment and also it’s a potential infection risk. The nurse was explaining to me that the more anxious I became the harder it would be to get a suitable vein because your body goes into ‘fight or flight mode’ thus causing your blood to move to your vital organs. She therefor obviously wanted to calm me down and so started talking to me about her recent trip to Orlando. She even started singing the Tigger song!…then when I explained that my favourite ride as a child had been ‘it’s a small world’ she sang the whole song. Talk about being person-centred! I’m blessed to have such a caring nurse!…and you know what, it worked and she got a suitable vein for my cannula so treatment could continue. Hurray!

Towards the end of this drug being administered I had a visit from a friend I used to work with in the very hospital I now get my treatment! She came to sit with me on her lunch break as she has done for every treatment – which is lovely!

Whilst she was with me I received a visit from one of my Drs to let me know that I will be meeting with a surgeon on Monday between my blood transfusion and oncologist appointment because they are planning to operate! How amazing is that?!…when you are stage four you hear the word ‘inoperable’ a lot, albeit sometimes with the word ‘probably’ in front of it but still. So, this was obviously amazing news! At this stage I don’t know what the operation will involve or how effective they are hoping it will be etc etc. I just know that I’ll receive an operation. So I’m holding off on too much excitement at this stage until I hear the full picture and see the scan results.

After my friend left I completed the full dose of Paclitaxel (Taxol) and the nurse administered some glucose through my IV line to flush the line and my cannula before the next drug was administered so as to prevent the two chemos mixing. Glucose is used instead of saline at this stage because the next chemo drug reacts to saline.

The next drug is Carboplaten. This was administered over 90 minutes and is followed by another glucose flush through my IV.

Normally, following this second chemotherapy drug, I’d receive Bevacizumab (Avastin ®) however it is not possible for me to receive this drug in the cycles before or following surgery as it delays healing so, as a result, I was not given this drug today. This meant, amazingly, that I finished my treatment after 7 hours instead of 8! Yay!

On the way home I started to feel really fatigued and this has got increasingly worse since so I’m off to bed as soon as I’ve taken my evening medication which is now my usual omeprazol – to prevent stomach damage I have taken this twice daily since my diagnosis – and my new magnesium tablets.

  
The tiredness that I feel as a result of chemo is so hard to describe. Sleep doesn’t elevate it and it’s hard to get my brain and body to function as one. For instance I could by lying on the sofa wanting a glass of water…and I’ll think about getting the glass of water and even drinking the water…but it will take about an hour for my body to come round to the idea and actually get off of my sofa and go and get the glass of water!

Tonight I don’t even have the energy to speak. Not even to my husband. It is literally taking more energy than I have to have any form of converstaion!…I’m glad I wrote most of this blog post whilst still in hospital!

So for now I must rest as much as possible in the hope of minimising the side affects over the next couple of days and keep my fingers crossed that the medication is doing its job.

Love and light, Fi xx