7 days 21 hours and 52 minutes to go!

What happened?? This cycle was AGES away…now it's next week! I don't feel ready at all, and yet I feel I can't wait to get there and get to it. I am going with a great bunch of women – they really are something. So we will support one another, and of course, it's always easier to achieve something as a team than it is to do it alone. That's the theory anyway!

I HAVE trained. The FH has been a Godsend, in that he has been forcing me out, and because he's faster [grr!] I am always pushed to keep up with my short little legs. He gets little breaks to drink water and rest while he waits for me to huff and puff my way to wherever he is. I get to try [and fail mostly] to guzzle water and speak [complain] whilst not being able to breathe…then off we go again.

To be honest, I am astounded at myself. I am NOT a person who has ever done charity stuff. And I am certainly not a person who has ever been sporty.  I think the most extreme sport I ever did was ice hockey – and it seemed easy because I was on skates! A bike is a totally different thing – one has to actually put a 'whole body' effort in…but I'm doing it. And enjoying it.

Recently, we  [the cycle group] have been wondering precisely how much of the money we've raised actually goes to the three charities we are supporting. Obviously the Action for Charity peeps have to make something, so we are interested in what is left after they take their cut.

I was interested [and shocked] to read the way that Cancer Research UK use THEIR funds for research. See below – ovarian cancer, which has the WORST survival rate in the UK [compared to the rest of Europe] seems very low on the scale. 

So – now we know why we have the worst survival rate!!

Ovarian cancer is the second leading cancer in women (affecting about 1/70) and the leading cause of death from gynaecological cancer, and the deadliest (1% of all women die of it). It is the 5th leading cause of cancer-related deaths in women, causing an estimated 15,000 deaths in 2008. Incidence is higher in developed countries.

Here is what Cancer Research UK say [and - where does the other 20 pence in a pound go??]:

"For every £1 donated, 80 pence is available to spend on our work to beat cancer. We receive no government funding for our research.

"We spent £332 million on our annual research activity in 2010/11. In almost every type of cancer, we fund more research than any other organisation in the UK.

We need to make sure nothing slows down the tremendous progress we’re making. Whilst we make the best use of every pound we raise, each year we receive a growing number of outstanding research proposals that we cannot afford to fund."

This image is from Cancer Research UK. They are patently quite pleased with themselves. I am just confused – why not have an even distribution of funds?

WHY is the funding for Ovarian cancer research A QUARTER of the amount spent on Breast Cancer research?? Ovarian cancer is the second most common gynaecologic cancer and the deadliest in terms of absolute figure. It's insane – any research into ovarian cancer benefits breast cancer research. The reverse is not true.

Ovarian cancer is the second most common cancer in women - around 6,500 cases are diagnosed annually in the UK. Around one woman in 70 in the general population is at risk of developing ovarian cancer. Ovarian cancer often develops without any clear symptoms and many women only discover they have it once it has spread. Surely this warrants the self same amount of funding as breast cancer?

And here's a peculiar factoid I discovered on Wiki:

"A Swedish study, which followed more than 61,000 women for 13 years, has found a significant link between milk consumption and ovarian cancer. According to the BBC, "[Researchers] found that milk had the strongest link with ovarian cancer—those women who drank two or more glasses a day were at double the risk of those who did not consume it at all, or only in small amounts."

Recent studies have shown that women in sunnier countries have a lower rate of ovarian cancer, which may have some kind of connection with exposure to Vitamin D.^[27]

And another [rather horrible] thing I discovered on Wiki is this: Grade 3 tumours have the worst prognosis and their cells are abnormal, referred to as poorly differentiated. There are four grades indicating the likelihood of the cancer to spread and the higher the grade, the more likely for this to occur.

Oooo shit! 'Occur'. HATE that word. Although 'reoccur' is worse…I didn't realise that I have the 'worst prognosis'!! Ovarian cancer, as  any other type of cancer, is graded, as well as staged. I had a Grade 3B [IIIB - macroscopic peritoneal metastases beyond pelvis less than 2cm in size] tumour. The tumour was bigger than my womb! [revolting factoid for your horror] the metastases was in the peritoneum. And other bits. Deleted.

Here's a world map – of ovarian cancer death rates. Nice huh? NOT

English: Age-standardised death rates from Ovarian cancer by country (per 100,000 inhabitants).

No wonder we're all trying to raise money for research! It's critical!

So all you women complaining about sore arms from inoculations and sore butts from cycling…worrying about whether we need mosquito nets and hair tongs…think about how bad it is for women who have sore arms from having an 8 hour dose of chemo…once every few weeks until there ARE no more veins to push the needle into. And no hair to use those Ever So Important hair tongs ON.
Be proud of yourselves for what you're doing – SO many women will benefit. And, God forbid, it could be you who benefits one day...it sort of makes the sore arm less painful doesn't it?

and last [for today!] but certainly not least

On Saturday I woke up to my iPhone meeping at me. Telling me to go to my Justgiving page immediately [what is it with phones that they're so bossy?!]. And, slave to technology that I am, I did.

Woop! A person called Sarah donated £100.00 [ONE HUNDRED POUNDS!!!] to my Justgiving fund!! I almost fell out of the bed!  Specs flying and kittens shoved off onto the floor!

Sarah - thank you so much. I wish I could get in touch, but you didn't leave your email on Justgiving. Please get in touch if you want to - I know you are going through treatment. Just make a comment on the blog or add me on Facebook? Or not - as you choose.

But thank you - it's always amazing when people one doesn't even know do something so kind. And every single penny goes to research into women's cancers - bring it on!! :)

Thank you Sarah, and sending you LOTS of positive thoughts. I hope your treatment is going well and that you will come out the other side as fit and fat as I have.  I know you can.

last chemo in 10 days time - good, bad or just scary??

Saturday 12th July

Since the last chemo I have been feeling sick most of the time and AWAKE a lot - I think it’s a combination of the steroids [well known for causing sleep disturbance] and worrying about the chemo concluding, what happens next etc. I seem to just lurch between trying to stay awake, trying to work and trying to go to sleep. This post has been sitting in drafts all week. Thought I'd better crack on and finish it before next year!

The joint pain is back with a vengeance, all side effects as usual, but worse this time. Apparently it gets worse on the last one too! Aaaargh. Feeling sick, pain in my stomach, wrists, knees and ankles, and a bit depressed [I am convinced that’s the steroids - as soon as they leave my system I feel better. Although saying that, the fact that it rains every single day isn’t helping!!]. I've been trying to use any time at all that I have as an awake person, to get work done – concentration is very, very difficult. So many things whizzing round my head, and so, so tired. Enormously frustrating, as I always worry about letting people down.

This time the total and utter exhaustion is really total and utter! I think I feel tired even when I'm asleep. But I just keep thinking I only have to go through this once more, then that’s it.

It's odd, but until now I didn't think much past the end of the chemo cycles. Now that I know I have a date for what we HOPE will be the final cycle, I am starting to think further than that. Three weeks after that final chemo I should be able to think about not having cancer, growing my hair and nails, losing all this weight I’ve gained; basically getting a level of fitness back and generally helping my self confidence, which is gone with the wind. I was thinking about all this, and I started off feeling really happy about it, but the more I pondered, the more anxious I became, until I was in what amounted to a total panic!

I am sure everyone is thinking that I must be jumping for joy now that the end of the chemo is finally in sight. But it’s not so. It’s very confusing actually. While I am having chemo, 'something' is happening to kill any cancer that might be lurking about, and even though it’s an awful cure, no matter how awful it may be, it’s helping. BUT. What happens when the chemo stops? What if there are still bits of cancer lurking about that it missed? I wonder how they know it's enough? How did they measure that it takes 6 cycles to destroy it all? My main worry being that there was some of it on my bowel. Hmm. Scary - lots of crying going on here last week.

Probably the 3 monthly check ups will be reassuring, but how can they see if it's appeared again? It's so insidious and sneaky. All the articles about the cancer coming back within 2 months and being resistant to the chemo at that point, are quite scary. Rummaged about in this website adjusting to life after cancer, as it's quite helpful, probably not just for me, but for my friends and family as well. But no-one can really help what goes on in your mind - in fact I am starting to feel a bit like Jekyll and Hyde in my own head. One voice screaming about dying quite soon, the other voice saying "don’t be so stupid, you’re not helping yourself deary". Where’s my positive attitude gone eh? Seems it has been having a wee vacation.

I think getting used to cancer is a bit like grieving - the process isn’t a slow, stately progression toward acceptance. It's a constant back and forth between being utterly devastated and being ok. As time goes on and your mind starts to get used to the idea [or gets bored with being so stressed about it], the devastated times become less, and the ok times become more. Hopefully at some point the 'ok' times take over. Such a lot of emotional uproar is pretty draining.

Another worry is having a lower resistance to infection for quite a long time after chemo - apparently it can take months to gradually get back to the usual levels. And the tiredness doesn’t just go away unfortunately. According to the facts, it will ease off gradually once the chemo has ended, but it can often be three or four months until you feel back to normal. Some people find that they still feel unusually tired a year or so afterwards!! Need a plan of action here methinks! People are going to expect me to be back to normal after the chemo - so I’ve become all pretentious and contacted a Fitness Trainer. Move over Kylie, here I come. It seems that being physically fit boosts your immune system too - bonus! And it certainly can't hurt.

Physically, psychologically and emotionally I think I might be at the worst point so far now, even though I’m nearly at the end. It’s just a 'worn out' feeling - small things can be gigantically upsetting, and supposedly 'important' things have become totally insignificant...and everything is just so much effort...oh well, KBO eh?

first day after – insomnia, nausea [yuck] and nice things!

Wednesday 2nd July

Could not get to sleep at all last night – read a book until 2.00 then finally managed to go to sleep – unfortunately I woke at 5.30! Hideous – started work at 6.30, as I knew I’d be in collapse mode by lunchtime, and I was right – had 2 hours sleep in the middle of the day. Felt pretty sick all day, and ate loads of trash! All of it tasted vile, so I am not sure why I bothered?

Weird thing that happened – more bits of stitch coming out of the bottom of the scar – not very impressed with dissolving stitches in this house I’m afraid.

First nice thing today, a call from my Style Queen!

Second nice thing today; flowers from my Clarinha! With a beautiful message [Actually I don’t know how they managed to fit it on the little card!]. A celebration bouquet, as I am at the 5th chemo – so typical of Clara to think like that. Thanks sweetie!! They smell divine, and they are all my favourites [how did you do that??] – Peonies, Gerberas, Phlox...gorgeous! And so frivolous. They are next to me on my desk. So nice to be treasured...

And I had a visit from a local celebrity this evening, that was fun! And I managed to look quite normal. Judy Spiers from BBC Radio. She’s SO cool! She was collecting tiles from Andrew for her bathroom, but Andrew was delayed so I had a chance to have a chat with her – what a lovely, friendly woman – loved her, and she really cheered me up too. AND she is getting her personal trainer to call me, as I have decided the best plan is to sort myself out AFTER the chemo, and a bit of beasting from a trainer will help me a lot, as I am a generally lazy oaf and need a good push to get me started. Then join the group once I am on my feet. It is a proven fact that if your fitness levels are higher, your immune system works more efficiently, and as that can help prevent a return of the cancer [which one always has to consider], I am all for that. Bang goes my Christmas money, but a good plan I think.

Opened a bottle of the Planalto this evening as a treat, and it still tastes pretty good! But I am saving the rest for next week – better to have a red wine now while my mouth is in chemo country, as it is easier on the palate and also it is better for the nausea – but I just couldn’t resist! So many gifts from family and friends – thanks, every little thing means a lot!

29. 1st chemo session - 1 down | 5 to go!

Tuesday 8th April

Early. Yuck. I do so detest having to be civil first thing in the morning. Appointment was at 8.15. Aj dropped me off [he would have come, so would Mum and ten other people, but I decided to go alone, as sitting around for 8 hours or so is tedious, especially with a grump like me] and I raced into the little shop, grabbed a sandwich, bar of chocolate, a big bottle of water and a bag of sweeties. Some Werthers Mints – never again. They are so sweet I was at risk of diabetes...dumped them in the free sweetie tray for general consumption. Anyway, I was late going in which freaked me out totally – waiting is not my strong suit, and particularly not today.

Eventually got going at about 8.40. had the pre-meds, which take ages, but as the pharmacy are merrily mixing up your chemo in the interim, it’s just as well. First they soaked my hand in hot water to get the veins up, then they throttle your arm with a band, and put in the cannula. Didn’t feel a thing. Marvellous.

I then had Ondansetron, Dexamethasone and Piriton. All of these for anti-nausea and ant-allergen. Having been told some chuckalicious tales about the Piriton tickling your nether regions by Tracey, I was rather expecting some amusement there, but nope! Nada! Everything went in through the cannula, and then they chuck a bag of saline in there to clear the line for the chemo. Piriton made me very dopey, and for the rest of the day I coasted between being sleepy or wide awake. Had the Paclitaxel first, that took 3 hours. Then a bag of saline to clear the tube, then another one of glucose, as the chemo is in glucose [I think that’s what she said], then the Carboplatin. That took about half an hour. Then another two clearings, and out! All told, I was there for about 8 and a half hours.

The Paclitaxel is exhausting, and it made my arm really hurt, near the cannula, and further up the arm. Not screaming pain, but painful enough. The nurse put a fluffy heated blanker around it and that knocked it right back to bearable like a small headache, with occasional sharp stabs of pain [it obviously is an attention seeking drug this one]. She said it’s because it’s so cold it bothers the veins. My veins were NOT amused. I could read my book and ignore it [during an awake bit!]. Also made me feel a bit delirious for a while. But nothing radical.

1 hour in my hand was ok and I gave back my new friend, the fluffy heated thing. Once I sassed out the system, I could unplug myself from the wall and trundle about. Just as well, as I drank more water than a thirsty camel, and was nipping back and forth to the ladies and the water machine for refilling my water bottle every half hour. WHAT a palaver trying to get reorganised clothes-wise with all those wires hanging out of my arm! NOTE TO SELF: must plan better clothes next time. Roll on summer. Oh, and remind veins that this is a team effort and they should kindly not be so disruptive.

In the meantime the lovely ladies from Force were nipping in and out with cups of tea and coffee, biscuits and smiley faces. Managed to trundle out to the waiting area and get a coffee myself too. Rather startled the waiting people I think. Woman And Personal Darlek get A Cuppa. Hmm.

Lunch time the nurse came round with sandwiches – thank goodness I bought one – all they had was egg and tomato. YUCK! What?? Who thought of that for people who are trapped in chairs for 8 hours? Are they mad? I had chicken and stuffing – far more civilised. But at least they offer you something. Better than a poke in the eye. And the coffee is ace.

Aj arrived as the Carbo was due to go in, what a nice thing to see his face! By the way, the chemo comes in huge great bottles instead of bags, and everyone dons a big smock to deliver it. The Carbo was ok for me – feels very cold going in, but apart from that, no problemo. One of the other women had a side effect of a very red face with breathlessness, and had to have oxygen and a lot of attention, but she was ok after a while. Poor thing, she was very stressed. I was very grateful that I didn’t get that. This time.

The place was like Piccadilly Circus today – full to the rafters, and I was amazed at the nurses having such a lot of people to deal with all at once. I don’t think they had much break time, and they were running all day. Ran out of chairs too, and everyone looked a bit frazzled. But everything still done with a kind word and no fobbing off if you needed to know anything.

Hoorah – last glucose wash and: ESCAPE at last – raced into the car with Aj, lighting a ciggie on the way ;o] Felt ok apart from a sort of wobbly leg thing, but I think that was sitting around for so long. They joined the veins in making their disgust felt. We went to the Quay for a quiet glass of wine, and then home. I felt slightly queasy, so took the tablet they command you to take, drank yet more water and sipping a glass of wine as I type this. I am not tired today, don’t feel too bad at all. Still a slightly wobbly tummy, but it might be psychological? Anyway, will see what tomorrow brings, as that’s supposed to be the day it hits you. I have 2 more tablets to take tomorrow for in case of nausea, then a pack of ‘in case’ ones for the days after, and hopefully I won’t need them. Hand still having stabbing pains but I think that's just from the cannula - had it after the surgery too.

If each one goes like today, I shall be eternally grateful. One down, five to go!!

Righto! Back to the wine and water!