A Day of Two Halves

Today was a day of 2 halves. I set off at 8am, walked to the bus stop, took a bus, then a tram and then walked (some of it up hill) for 30 minutes to the hospital. The whole journey took about 1 and 3/4 hours. The idea was to have my annual breast MRI at the small private hospital. However it wasn’t to be. They said that they needed to inject a contrast called Dotarem (Gadoteric Acid) and would need to insert a cannula. I explained that my veins may not work for a cannula but that I had a portacath. They said they couldn’t use the port. I think it was more of a skillset issue rather than anything wrong with the port. Anyway the 2 radiologists each had an unsuccessful attempt. They then called the doctor who was also unsuccessful. And they gave up. No breast MRI for 2019 then.

I made the same 1 and 3/4 hour journey home, picking up something to eat along the way. So that was a morning wasted. I had about an hour at home and then headed back out to the cancer specialist hospital to see my oncologist. Anyway this was a much better outcome. The CT scan that I had last week was completely clear. Yay. The words at the bottom of the scan report said, “No evidence of recurrent or metastatic disease”. I was also told that my CA125 result is “less than 6”. Apparently that is the lowest number that they ever report. I really could not ask for more.

It is now 12 years and 2 months since initial diagnosis. There have been 2 recurrences; it is 9 months since the most recent surgery and 4 months since the last chemo session. Tonight I’m off to the OC support group to share the good news. Long may it continue.

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Incurable vs Terminal

A friend expressed surprise recently when he heard that I had said that I have incurable cancer. I was surprised that he was surprised but on reflection I can see why.

For a start I like to tell people that I am cancer-free. What I mean by that is that there is no visible cancer on my most recent scan. However, we have been here before – in Dec 2007, June 2010 and February 2019. Unfortunately the scans can’t show microscopic cancer cells and the reason I have had chemo after every single successful surgery is because the doctors recognise that there may be invisible cancer cells lurking anywhere in my body. And the reason that I have had so many recurrences of ovarian cancer is because of those invisible cells which choose to wake up whenever they feel like it and start growing.

The other thing to consider is the stage at diagnosis – stage 3C. That means that the beast had already metastasized far outside my ovaries. This is why women are told that it’s highly likely to recur and once it has recurred you are told that it is incurable. So incurable (but treatable) means that the expectation is that the beast will keep coming back to annoy you, to terrorise you, and ultimately, if it feels like it, to kill you. But while it’s treatable you are merely incurable, not terminal.

My oncologist’s most recent prognosis was 2 to 3 years. She also estimated that the cancer could be back within 6 months. B*tch! (Lol) When I saw that in my copy of her letter to my GP I was p*ssed off for at least a good 5 minutes. Chupz! I’m pretty sure she was just trying to scare me because I didn’t agree to take the olaparib. However, ” Doctors often rely on a mixture of clinical experience and intuition when determining someone’s life expectancy. “ Here’s the thing, in order for me to die in 2 to 3 years, first I need to have another visible recurrence but since I am currently dancing with N.E.D. there really is no need to fret. My next scan is next week and I will get the results on the 13th. I am lucky in that I don’t suffer from scanxiety. As long as I feel normal I assume that all is well – though I had no symptoms last year when the latest tumour showed up.

And it’s not the first time I’ve been given such a prognosis either, her predecessor, whom a friend of mine nicknamed Dr Death (we ungrateful patients 🙂 ), gave me a similar prognosis in 2010.

The other thing to be aware of is that the most recent recurrence was on the lung side of the diaphragm. My oncologist said that a new diagnosis in the diaphragm would be classed as stage 4 but they don’t change your original diagnosis. The diaphragm is located between the lungs and the liver – vital organs.

Finally, should you be worried about me right now? My answer is no. If I ever tell you that I have terminal cancer you can start worrying. Terminal to me means that they have run out of treatments, cancer is all over the place and I have less than a year to live. I’m not there. And I’m not planning to be there. Nobody knows the hour or the method of anyone else’s death. I continue to make hay while the sun shines. And the sun is shining.

P.S. Someone recently asked me what I did for for work. I said that I gave up work 8 years ago because I thought I was dying (I had taken on board the prognosis from Dr. Death). She said but you’re not dying now are you? You should go back to work was the implication. I laughed and mumbled about the various voluntary work things that I do. This is the other side of the coin. The confusion of it all. Are you living or dying? Are you setting and working on long term goals? I was amazed recently when I met an 82 year old and a 92 year old who had built a huge new home in the last 5 years. They are braver than I am.

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Of Magic, God and Miracles……

Why am I writing this? I’ve been meaning to write this for the last few days because I want my family to remember that:
we as a family have created miracles in the past and we will do it again.

I found myself in floods of tears on the plane while watching the film “Breakthrough” which was about a boy who walked on a frozen lake with his friends and fell through the ice. Spoiler alert! Spoiler alert! If you might want to watch that film and don’t want to know how it ends stop reading this now.

The doctors told his parents that he would die because he had been underwater for over 15 minutes. If he didn’t die, he would be severely mentally and physically disabled. His mother refused to believe that he would die. She had a great faith as did many of the children and families at the school that her son attended. To cut a long story short, the boy, John, didn’t just not die, he made a full recovery, mentally and physically and was back playing on his school basketball team before the end of the movie.

So why was I in tears? Perhaps because it triggered a memory in me of when my own niece, only about 4 and a half years old at the time, drowned at a school outing. The story that was relayed to me was that she was seen at the bottom of the pool, and had perhaps been there for several minutes before they realised that there was a problem. I don’t know what happened but she was one of these super bright kids so she was in class with kids who were a couple of years older than her so no doubt much bigger too. She was taken by air ambulance to hospital but was unresponsive for a couple of days I think – my memory is hazy on the exact details.

However, what I do remember is, despite my own lack of faith, getting down on my knees in my living room and praying to a god that I barely believe in. I was heavily pregnant at the time so getting down on my knees was a feat in itself. (LOL). I also told my friend LK and she got her Mum and her Mum’s prayer group to pray. Now LK is as much of a non-believer as I am but she still engaged her “prayer warriors”. I guess our catholic upbringing is still lurking somewhere nearby.

The outcome was that my little niece made a full recovery and I remember my sister saying that the doctors said that “it wasn’t anything that they had done”. My niece is now all grown up and is a doctor of medicine. I think when loads of strangers around the world pray for you that makes a difference. (Oh dear, I’m recognising a clear similarity to Peter Pan here. Lol. “Tell all the children in the world, if you believe in fairies, clap your hands”. I remember clapping my hands as a little girl and it saved Tinker Bell’s life.)

But seriously, when I was seriously ill, back in 2007, I accepted all prayers gratefully and gracefully. I don’t care what religion it is either. I accept them all. In fact, one of my Tramadol induced hallucinations were of monk-like men in robes surrounding my hospital bed and they looked like they were praying for me. And then they were replaced by little girls in party dresses carrying lights. It was a lovely contrast – the serious monks followed by the little girls dancing lightheartedly. I’m sure the change from monk to party girl was when the decision was made that I would live. But I am rambling….

Let me say this again:
we as a family have created miracles in the past and we will do it again.

How do you create a miracle? Well the first thing is that you have to believe. You also need to disassociate yourself from those who don’t believe, those who practice negative thinking – they will drag you down. Plus life is better lived with hope.

My elder sister will call this magical thinking. Lol. She did say that it seems to have worked for me so far though.

The truth is, that when science/medicine have nothing left to offer you, when science/medicine start quoting statistics at you that leave you hopeless, that’s when people turn to magic/god. Because that’s when you need a miracle.

And I know they exist. I myself am a walking miracle. And so is my wonderful niece. And what’s more, there are more miracles coming our way!

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12 years and counting

Today’s Facebook post (in one of the ovarian cancer groups)

Good morning Lovely Ladies, I just remembered that it’s September which means that I am now 12 years since diagnosis of Stage 3C High Grade Serous ovarian cancer. I’m writing this mainly for the newly diagnosed who are, no doubt, like I was at first diagnosis – full of fear for the future. I spent many a day and night in those early years wondering whether I would be alive to see my daughter finish high school. Well she graduated from university 3 years ago, is working and recently moved out to share a flat with a friend. I celebrate her independence every day and celebrate that I have been here to share it all with her.
The road has not been a straight one. I have had 2 recurrences – in 2010 and 2018 – 3 more surgeries and finished third line chemo in July this year. The good news however is that I am once more NED (No Evidence of Disease). My wish is the same for you all. I also wish for a cure for us all and my hope remains for an effective screening test so that in future, no one ever has to deal with recurrent ovarian cancer.
What I have learned over the years is that fear and worry achieve nothing. I have found that keeping busy doing something that gives you a sense of purpose helps. Also, things like writing/blogging help me to figure out what is bothering me and help me move forward. Counselling can do the same. I do a lot of walking for exercise though I have been slacking recently. People often ask me if I have been following a special diet and the answer is no, I eat what I like but it does include daily fruit and vegetables and wholemeal bread etc.
So all in all, when you get a diagnosis of late stage ovarian cancer, don’t assume this is the end. Even when you have a recurrence, don’t give up hope. Instead, if you can, try to get the best out of every day, focusing on living rather than on dying.
PS: Apologies for the long post. Only meant to write a few words. LOL.

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NED – No Evidence of Disease

I would like to say a few words about no evidence of disease. No Evidence of Disease is often shortened to NED. So here I am, once again dancing with NED. This is not as much fun as it might sound. Both my surgeon and oncologist have told me that they fully expect the cancer to come back again. The challenge then is how to keep living and getting the most out of every day when there is this constant reality that the cancer can come back at any time. My clinicians have no idea why I had a 2 year remission followed by an 8 year remission. They have no idea why I’m still here. So they can offer no advice. All they can offer is their personal experience of reality which to them is that the beast will be back in its own time, whenever it feels like it. Sigh….

I think I need to take up Boxercise again so that I can punch the living daylights out of something. I remember when I was at work and my boss was getting on my nerves I would pretend I was punching him during Boxercise. Lol. Or maybe I could learn how to karate chop a board in half. Okay, okay, I’ll just settle for stamping my feet. 🙂

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Clean bill of health

So I got the results of my 26th July CT scan today and it’s all good – a clean bill of health. Also, my CA125 that i had on Friday was below 6 so couldn’t ask for more. None of this is a surprise to me as surgery in February successfully removed the tumour and I’ve just had a course of Carboplatin & Taxol. Still, in this game of cat and mouse, of tales of the unexpected, anything is possible so while I’m not surprised I am immensely grateful.

I had a brief chat with my oncologist about Olaparib. I explained that my instinct is not to take it. I think she understood where I was coming from. She explained that if you’re taking it you must start within 8 weeks of completing chemo (or a very maximum of 3 months). She said that it doesn’t “prevent” the cancer from coming back but it “maintains” your cancer-free status. That’s the reason why they wouldn’t give it to you if you are a year cancer-free. Seems 6 of one and half a dozen of the other to me – maintenance vs prevention – but I wasn’t going to argue. She also said that the trials show that on average, women who don’t take Olaparib recur within about 5.5 months whereas women who do, recur within about 19 months. So Olaparib is giving you an extra year or so progression-free. However, so far I have had 23 months progression-free (from 2008 to 2010); followed by 8 years progression-free (from 2010 to 2018). No one has any way of knowing when next I will recur but so far the average period for me is about 5 years. Or it could be never. Or it could be next month. There is no rhyme and no reason.

Both my oncologist and my surgeon believe that the cancer will be back. I have to say that I now believe them too. But no one can tell me when. So I believe that my choices are two: FEAR or RECKLESSNESS!!!

FEAR says: Do what the doctors recommend: take Olaparib.

RECKLESS Optimism says:
– why take a drug that will lower your blood count and make you feel unwell when it might not come back?
– girl, just go out and enjoy your life; make the most of now

And I think it’s the “make the most of now” jury that is casting the winning vote. And unless I change my mind before the end of September I will have missed the boat anyway as that will be almost 12 weeks since chemo completion.

I want to make the next year count. I want to do everything that I want to do, see everyone that I want to see and go everywhere I want to go. Live as though this is my last year of feeling good.

And then the Tina Turner lyrics start competing for air time:
“I’ve been taking on a new direction, But I have to say
I’ve been thinking of my own protection,
It scares me to feel this way”

And then the “This is me” lyrics start coming through, “Look out cause here I come”. Lol

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On the 14th June I raised a formal complaint to the hospital which was responsible for the failed surgery on 8th October 2018. On 18th June I received a response saying that they would respond by 19th July 2019.
On 18th July I got a call to say that they needed more time as they were waiting for a response from a consultant so said they would come back to me by 9th August.
On 26th July when I went for my end of treatment CT scan I was told that the Complaints person wanted to speak to me on the internal phone. She asked whether I wanted to come in and speak to two of my consultants. I think Mr B & Dr B were mentioned. I explained that I wanted something in writing.
On 8th August, while we were on holiday, I got another call (which will have cost me £1.80 per minute to receive). This time they said that the report was written but needed to be reviewed by the head of surgery so I would get an answer by 24th August.
Today, Friday, 23rd August I called to ask if I would get an email or snail mail. The deputy head of QA called back to say that she didn’t feel that everything had been answered and that she needed a response from Mr K who wouldn’t be back from holiday until Monday. She said that she would try to get me a response by Wednesday, and no later than Friday next week, so 30th August.
So, 10 weeks after my complaint went in I’m still waiting for a response. Not to mention that it is more than 10 months since the failed surgery.
And this is a top hospital…
P.S. On Wednesday afternoon I got a call from the same hospital asking why I hadn’t shown up for my appointment that afternoon. The reason was that I’d never received any information about the appointment. Oh dear. Things fall apart. I asked if a letter had been posted to me while I was away but she couldn’t say. Anyway, another appointment was then made for next Wednesday, 28th August.
I got a call this morning saying that they’d noticed that I hadn’t had a CA125 blood test for quite a while so I should go today if possible so that the results would be in place before I have the appointment on Wednesday. I went along and it was no trouble to me but again it just looks sloppy.
I still think this is a good hospital but they are just not covering themselves in glory right now. Things fall apart.

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Bald + Bikini = Freedom

So I’ve been rocking my “No Hair, Don’t Care” bald look for a few weeks now. I even went to Highgrove and met Prince Charles as a baldie. Baldness may not be something that I chose but I am very comfortable with it. As a friend said about her own baldness, “I haven’t done anything wrong so why should I cover up?” To be honest, I mostly forget that I am bald and only remember when someone, usually a child, stares at me. Then I just either stare back or smile and wave depending on my mood. British people of course are very polite and in London, it’s been the case for decades that you can wear whatever you want and no one blinks. Remember the punks in the 70’s? So far, only one man, who had a limp, gave me a negative look. He wasn’t nice but with my best Winston Churchill attitude I thought to myself, “next month I will have hair but you, my dear, will still be limping”. Lol. Not nice I know, but neither was he.
(“Tomorrow I will be sober but you, my dear, will still be ugly” – Winston Churchill)

We’ve been in Jamaica for the last 10 days to celebrate T’s 60th birthday. He has thoroughly enjoyed it and we have all had a fabulous time. Our last guest, my sister A, left today. We are exhausted! Busy doing loads of washing and either napping or yawning in between. T has only just unpacked his suitcase this afternoon. Lol! It’s been so hectic. I was lucky. I’d followed my clever niece S and used packing cubes: – each cube had a different type of item in it; once I’d taken the cubes out of the suitcase I’d pretty much unpacked without unpacking cause I knew which cube to go to for each type of stuff. I recommend them.

Anyway, it seems I’ve drifted off topic…. About the “bald + bikini = freedom”. I think the last time I wore a bikini was on my honeymoon and that was decades ago! After pregnancy I decided that my body was “imperfect” and I couldn’t wear one anymore. The most I would do was wear a tankini. How silly I was! But we all do it don’t we? We scrutinise our bodies, find an alleged “flaw” and decide that it must be covered, hidden or disguised. Well I have managed, finally, to move on from that. I am filled with acceptance of my imperfectly perfect body, with it’s wall to wall scar, which effectively joins the two parts of my bikini to each other.

I think I first formulated the thought that i must wear a bikini when, having shown a friend my scar, she said, “oh well I guess you’ll never wear a bikini again”. And I thought, that’s not right. It’s that same thought again, “I haven’t done anything wrong, so why should I cover up?” Then I forgot about it until my friend AB mentioned that she’d just got a couple of bikinis for this holiday and I thought, oh, I must do the same.

I think it’s quite funny that I chose to hide my relatively firm, post-pregnancy young body under a tankini but am now letting my much older body out there in public. Letting it all hang out (literally! LOL). It was a real “This is me” experience for me. And the next day I wore a bikini again. I’m now a convert!

But that’s the point, first I found freedom by being bald and now I’ve found an even better freedom by going bare (well almost). Who knows, maybe it will be the nudist beach next. LOL!!!

In closing I want to say this: we have only one body in each life that we live. Let us treasure it. Let us only speak nice words to it. Let us only speak nice words about it. Let us take good care of it. Let us nourish it. Let us be grateful for it. It is one of a kind. And most importantly, it is the only one we have.

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A New Dawn

🎶 “It’s a new dawn, it’s a new day and I’m feeling good” 🎶 

So glad to be over the worst of the short term chemo side effects.
I will put up with the long term ones (Tinnitus and Peripheral Neuropathy (in my toes) because everything has its price.
Life goes on a pace – so much to do, so little time – but I’m happy to be here.
Bring on the music!
Bring on the dancing! 💃🏽

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Lady on the road

Lady on the road: “Sistah, put on your hat and drink lots of water”

Me: “Why?”

Lady on the road: “Otherwise you will get cancer”

Me: Laughing as I keep on stepping

Only I can have these interactions. Crazy just follows crazy. When I was a teenager, if the mad man was going to talk to someone it was always going to be me. Lol.

To be fair to the lady on the road, the sun was shining hot and she probably saw my bald head and thought that I needed some serious sun protection. A ha ha ha!

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