check up time again…

Check up on the horizon. Bah. And here I am, having a GREAT day just 2 weeks before…why am I worrying??

Trying to be normal. But it  makes me drink too much, smoke too much [giving THAT shit up soon!!], talk too much [well, 'gibber' would probably be the operative word actually - think 'bouncing off the walls'...] - I stand in my garden looking at the flowers and cry for no reason.  My behaviour is erratic. I am out of control a lot of the time. I think about death. A lot.  STILL!! Why?

My husband is an angel when this is going on. This week he brought me flowers for no reason. He understands, and he lets me 'get on with it'. He doesn't judge me or hassle me or question me - he allows for lunacy, and he allows for bad behaviour. Thank goodness for that. Not many people are so forgiving.

I'm not sure how I'd cope without him actually. I have total free reign…I can do whatever I need or want to, for a limited time, and know there is always someone to save me if I push it too far. A safety net. I need that, as I am an addictive personality and a crazy person at the best of times - the FH helps me survive myself.

It's odd - I STILL can't cope. I do cope - but I don't. Pathetic really. But I am not so far from the diagnosis and surgery and chemo that I feel safe yet. I do wonder if I ever will. Feel 'safe' I mean. I hope I will. Eventually. I am sure I will - but when? I still starkly remember being bald. I still remember the shocking pain in my legs from chemo. I recall the night I had to phone the ward because I suddenly developed a burning rash. I recall being frightened quite a lot. And trying so hard to hide that.

I mean, at the end of the day, I'm not a weakling, I'm not new to this. So why do I have a total meltdown at each check up?? I think I know why - because at each check up, there's the chance that MAYBE this time the cancer may have returned. Quite often with ovarian cancer there are no symptoms of recurrence until it's late in the day. That sucks. No matter what you do, it could be there, sneaking about, ravaging your insides - and you'd never know. Fuck. It's so frustrating. And so scary.

BUT - hey ho, we have to KBO eh? Churchill understood the dangers of defeatism and poor morale as a soldier and leader, so he set the example needed to inspire others around him…and he kept “buggering on.” Well, I shall just do that.

Bugger…on.

next fundraiser and looking for work…still!

So now I am sorting out the NEXT fundraiser! Tell you what, this fundraising is exhausting stuff! If I were being paid to do it, I'd be raking it in. I am worried, as I am actually starting to enjoy it. Hmm - madness sets in?

I am seriously considering applying for jobs as an Events Organiser - can't be more difficult than finding a job as a graphic designer!! You'd think 10 years experience would be of interest to SOMEONE. But no…every job I apply for I get no reply. How rude. In Devon it seems it's ok to employ only people who have just left school. Oh, and to not bother to let one know whether you have the job or not. This explains a lot about Devon's advertising and marketing!! Anyway…onward and upward, I still have the cleaning job, the furniture maker thing and some gardening. So, all is not lost. Yet.

Today I went with the FH to the job centre - well, they were about as much use as a third buttock. I have to 'go away and phone in for an appointment ' and their job seeking help is to allow one to use their [odd] computers to access the job web site. Which I do at home anyway! It seems that if I work more than 16 hours a week, I am not eligible for benefits. If I work less than 30 hours a week, I am not eligible for tax credits. So, seems if I just don't bother my ass, I can be on the dole, but as I am trying my best to work, they won't help me. This makes no sense. Grr.

In the meantime back at the ranch, I have another fundraiser on the go, at the Port Royal pub on Exeter Quay. I have discovered that if I want to do a raffle in advance of the event [and I do want to - the 3 night weekend at Fingle Glen Golf club, kindly donated by Andy Bridgeman], I have to have a 'gaming licence'. Uh what? Now I am a gambling type? So we are having a 'discussion', the council and I, to try to sort it out. Very complicated. I just want to raise money for women's cancers - and the licence costs £40.00! uff…but they are being very helpful, so I'll see what tomorrow's phone call brings. I'm hoping for a good result, as the event is SOON! I need to sell a LOT of tickets for that - it's worth at least £300.00, so I need to raise more. Eek. But I do have my Secret Weapon: Graham!

Speaking of results, I am off for the beastly blood tests in the morning. Ugh. Next check up looms. Not in the best of moods this week I dare say. In fact, feeling quite the grouch.

And today was mad - after the pathetic result at the job centre, the FH decided that I need a new dress for my friend Julie's 50th birthday bash. I was NOT in shopping mode - so of course I found the perfect dress!! AND in a size 10 which I haven't fitted into since before my dx. Woop! Credit card is feeling the strain heh heh. But as it's her 50th AND her '5 year survivor of ovarian cancer' bash - well, what can you do? It's a bit special isn't it? Check out the cool frock from All Saints [my favourite shop in the universe]! Will be superb with my R+B leopard skin shoes methinks :o)

Oh and by the way, got the results of my mammogram after a shouting match with the secretary. She didn't QUITE get it that I need to know NOW not in 3 weeks time. But it sank in and she became very helpful - rang me back the same day bless her -  all clear!! Yay!! I should be cheerful right? I AM trying…

such a week!

Monday I was a bit frantic as usual, as the 3 month check up was looming on Tuesday. Even though I've recently had the laparoscopy and biopsy and been told there was no evidence of cancer [by the beenied surgeon!], I was still worried and tense. With cancer you just never know – it seems could sneak back in an instant…or it could remain dead and nuked for good [this, of course , is the ideal scenario]. It doesn't seem to matter what one's been told or when – the worry is still there. But happily, my CA 125 was back down to 7. SEVEN!! Who hoo – that was nice to hear!

It's always such a relief.

Tuesday night was the Secret Guide to Women's Health, which also worried me a bit – I mean I'm not exactly TV material, and we didn't see the final cut before it aired, so you never know what you're going to look or sound like. Thankfully, it seemed ok to me. The FH was fab – made me cry to watch him – it brought it all back. The long nights where I was awake in fear of my life, the days where the FH would make every effort to take me somewhere that would cheer me up – the horrible chemo…being bald and frightened. Being on Planet Cancer.

A lot of it was cut, but Hani came over with loads of info, so it worked. Well, it must have, as so many women have been in touch with me since the program. I am amazed – before I had cancer, I wouldn't have been interested in it. At all. I don't think that's unusual  – after all, it's a pretty horrible subject right? None of us wants to think about dying. Particularly dying a horrible painful cancery death.

But these women are interested because they want to know how to protect their lives. And that's the whole point – to make women aware. Ovarian cancer is the fifth most common cancer in females in the UK and the second most common gynaecological cancer after uterus. You'd never know it would you?

In the UK it affects over 6,800 women a year, and we have the highest death rate in Europe. The incidence of ovarian cancer is highest in USA and Northern Europe and lowest in Africa and Asia. Ugh – not good. I should have stayed in Africa! So being aware of the symptoms is vital – early detection saves a lot of lives.

So, here are some pics from the film set!

From left to right; Dr Rosemary, Coleen Nolan, me and Professor Hani Gabra.

Apart from that, I have been doing a million things – still trying [how frustrating is the internet sometimes??] to upload Hacker Design stuff and Ecobeds to various web sites.

This morning I had an interview just to 'see' my portfolio. We will see if anything comes of that. Doing logo work for Ecobeds and Hacker…excel sheets of prices, packing and weights blah blah. Address data base, email database...and of course stuff for the Riviera Tile & Bathrooms bunch! Posters and web site and then need to get cracking on killerpaint web site too…uff

Yay – busy!!

woo hoo – on the tv tomorrow…

Saturday I watched the video clip from the SKY Real Lives programme, burst out crying and went into 'bad temper' mode. Why? Who knows! My check up is tomorrow too – that certainly doesn't help with equilibrium.

I'd never seen it. I was supposed to watch it as my 'back story' when we did the filming in London. But I couldn't, as it has the FH doing 'my wife is amazing' stuff in it. Messes my head up totally. He is so amazing.

Anyway, we are not sure if we will be able too watch it, as we can't work out which channel it will be on [if any] on Virgin cable. We think it's on 282? We will see tomorrow!

I can't embed the video, as their code doesn't seem to work, but you can see a clip here.

---------------------------------------------------------------------------------

Sky Real Lives 2: Tue 23 Mar, 10:30AM

Sandhy Robinson Jones talks candidly about her experiences of dealing with Ovarian Cancer. See more from her on The Secret Guide to Women's Health.

Unexpectedly diagnosed with cancer in January 2008 Sandhy Robinson-Jones has been treatment free for a year. She is living with the constant threat that her cancer will return.  Sandhy wants to raise awareness of ovarian cancer which is frequently misdiagnosed because of its ambiguous symptoms.
Sandhy Robinson Jones, 47

In December 2007, having felt tired for seven months Sandhy went to her GP having noticed her usually flat stomach was swollen and a tiny bump in her groin. She was quickly referred for a scan and was told there was a growth on her ovary that looked like it could be malignant. Sandhy was shocked - it had not occurred to her that she may have cancer. Sandhy had a full hysterectomy and oopherectomy (to remove her ovaries, uterus, fallopian tubes and omentum) and her bowel was scraped where the cancer had spread. She then had a six month course of chemotherapy.
The hardest part for Sandhy was losing her hair through her chemotherapy treatment. Nobody had warned her that not only would she lose the hair on her head but the rest of her body hair too. She was also unaware that she would put on weight because of the steroids she was taking. Sandhy has the unwavering support of her husband and two stepdaughters.
Sandhy now devotes a lot of her time to raising awareness and providing support for women with ovarian cancer. She is doing the Relay for Life this year to raise funds and has set up a mutual support group for ovarian cancer sufferers on Facebook. Sandhy is committed to helping women recognise the symptoms of ovarian cancer so they can get help quickly. She does not want anyone to have to go through what she has.

Sandhy Features in Episode 6 of The Secret Guide To Women's Health which looks at Cancer.

Find TV listings and set your Sky+ to remote record

About Ovarian Cancer

Ovarian cancer is the second most common kind of gynaecological cancer with nearly 7,000 women diagnosed in the UK each year, around three times the number of cases of cervical cancer and only 30% of those women will survive for more than 5 years after.
Currently the risk of developing ovarian cancer stands at approximately 1 in 48 for women in England and Wales. Ovarian cancer is often referred to as the ’silent killer’ as it is difficult to detect and treat.

Resources:

www.ovacome.org.uk

www.ovarian.org.uk

an invigorating day

Tuesday, 7 April 2009


What a great day - it was supposed to be pouring with rain. It didn’t - it was really sunny! Lots of those lovely gigantic fluffy white clouds racing about, and a breeze, but it was sort of invigorating. Especially when I got out of the car to walk to the entrance of the RD&E. I was almost blown right past.

This time I went really early, to avoid the mad panic of trying to park [last time I was in tears as I was almost late through looking for a spot]. I got stuck in traffic though, so I only had about 12 miles left in the tank and no time to fill up. So much for planning. I was wondering if that would be enough petrol to drive round the car park 600 times. Then I thought "I don’t care - if I run out, I shall dump the car and run for it". One less thing to worry about. But startlingly enough I managed to get a spot in 15 minutes! So I was very early. Nipped into the hospital, got a big fat sandwich and some crisps and sat in the car eating them, faffing about on the internet. Oh I love my iPhone. Excellent brainless distraction machine! And it was hot! Paid £3.00 for the privilege of parking there, so I thought I may as well make the most of it.

At 3.00 I went in. And happily, Aj arrived not long after. He also managed to find parking quickly. See? I told you what a good day it was.

Today's check up was no problem. Although my CA 125 has risen from 6 to 9, apparently that's fine. [take note!! it's gone up, but I am ok. It was 9 before, then 7, then 6 now 9 again]. Renninson, my demented surgeon, said that he is not even remotely concerned, and has decided I only need go back in 4 months now instead of 3. Yay!! The other thing he said was that he treats ‘me’ not my blood results, so I shouldn’t worry about those unless it jumped to 40 for example. Then he’d think more seriously. And I don’t need a scan because he whipped everything out, and I have no signs of a recurrence so far. IF there were any signs, they would do a scan. Otherwise it’s not necessary. Ok again. Scans are weird and if I don’t need one, I don’t want one. He’s the expert.

But at first I was like: "what??" and he was like: "the longer you go on with no problems, the less I want to see you. And the more 'normality' you can attain". Suits me thanks!

I got him to do a thorough check of my abdomen though, as I have a lot of pain after the circuit training - his comment was: "you would have had that before the surgery". I would? Who knows - I didn’t do circuit training before I had cancer. I had more sense!

But I have an ongoing/on/off pain in the left side of my abdomen. Apparently that is my lower bowel [after being prodded rather violently, he ascertained that] and it may be that it's not 'clearing' properly. Hence the pain. Oh joy. Now I will be guzzling gallons of water a day on his advice. Although I can't say as I've had any bowel problems, but if that will stop it hurting, good for me. He said that’s the reason I can feel it. So. Water. Lots of. I wonder if wine counts?

Then I was wittering on about the 'hard, thudding' bit under my navel - that's my aorta and apparently [Renninson is most peculiar - very dry humour] if I didn't have it, my legs would fall off?? whahahaha - don't you love it when someone is peering up your nether regions and cracking jokes?? hmm...maybe not! eheheh. And the only other reason I can feel it is because I’m so 'slim'?? Had to tell you that! I feel like a fat porker, but if my surgeon thinks I'm slim, well, it can’t be that bad eh?

So, good news all round, but a very sore gut this evening where it's been prodded, poked and the blasted speculum was FREEZING cold!! I felt like bashing him over the head! I would have, but after all, if not for him I wouldn’t be feeling anything at all. So he can do what he likes actually.

I am totally exhausted from relief. I did do rather well this time in the stressing out department. But I don't think you realise how much you're worrying until it's done. No more worrying now for 4 months. Cancer free once again. Hooray!

nerves or no nerves?

Monday, 6 April 2009

It's strange. The 3 monthly check up seems to engender terror in all of us OC girls - at the very least, fright or worry. I have been thinking about this, and it’s hard to understand why we are so afraid. For instance, we go every year for a cervical smear, [well, the rational women amongst us do - the rest just have no sense]. Although now I don’t need to do that, having no cervix! Heh heh - one less revolting thing to have to do!! That nasty ripping sensation? Yuck!!

The smear test is obviously to check for cervical cancer. Right. So, we do this every year, and we don't stress with it. Well, I personally never have. I just trundled off to the GP [in the UK] or the gynae [in South Africa], did the unpleasant deed [ankles in the air and little bits torn out of ones insides? horrid, but sensible] and trundled home again, expecting that everything would be ok. And I was right. I never had cervical cancer. Thank you, Oh Powers that Be. I don’t think I could cope with two types of cancer - although I know a very strong woman who has had to. Amazing.

So how is it that a check up every 3 months after having HAD cancer removed, nuked and bashed over the head is so stressful? I haven’t worked it out yet, but I will eventually. Perhaps it’s down to all the bad press that OC gets - all the 'statistics'. The interesting remarks that we’ll be 'dead before 5 years are out'. WHAT!!??? WHO are these people?? I would quite like to smack them one. Bet they never had cancer?! My oncologist [an expert in her field] doesn't agree with them. My surgeon [also an expert in his field] doesn't agree with them either. So, where do 'they' get their 'facts' from?? Personally I don’t believe any of it - I will survive this disease the same way I have survived coughs, colds, pleurisy...whatever. I will survive this too. It’s just another disease.

By the way, I forgot to mention that the mammogram was clear!! Woop woop! [I know - how could I forget to mention that? er...I forgot!] I had the ghastly little brown envelope through the post while I was working in Portugal - Aj rang me to see if I wanted him to open it - oh, of course I did! He opened it and read it to me over the phone. Well, that was a relief! Everything is clear, and I have an appointment for next year. Thank goodness I work for a company that allows me unlimited calls to my husband - and for Outlook, or I'd never know WHAT I was doing. And also thank God for such an amazingly understanding husband. Most men would have just opened the envelope. And I would expect Aj to- but he didn’t. He called me first. How great is that?

And - as for chemo brain - so extremely irritating. I really can't remember any appointment/date/event or anything unless I put it in my reminders. Yay for technology. Thanks for the iPhone!! It’s a brilliant little piece of equipment. But – bad if I actually forget to add something to it - after all, the phone can’t recall anything unless I tell it to!

Anyhow - tomorrow I have the appointment at 3.15. Jones will arrive sometime after that, as we know well that the appointments are never on time. Do I care? Er - no. I don't - those people have been so good to me that I will wait however long it takes. As long as I see either Renninson or Hong, I am happy.

And thank you all you crazy people who sent me cards and messages - it means so much!

things to be cheerful about: part 01

Tuesday 20th January

wow, what a great week I had last week - I wish I could share how good it has made me feel with everyone I know! No that’s wrong - I wish everyone could feel as happy as I am right now, and as well as I feel right now.

Monday I went to see my Great GP, [I love my eccentric GP] as it has been niggling me that in the States, they send you for a mammogram if you have had OC. OC and breast cancer are quite closely linked and that makes me a bit nervy.

In the UK you are only entitled to have a mammogram free after you turn 50 - there is a sensible reason for this, as apparently the breast tissue 'thickens' after you hit menopause, and until that happens the mammogram is not much use. As I am now in menopause, albeit surgical, I asked him to send me for one. No problemo, says the Great GP. So, viola! I have a breast crushing experience to look forward to. Can’t be as bad as being hacked in half, so I am not concerned. Better that than getting surprise breast cancer.

Monday night, off to circuit training. Groan. But I am improving, and I am definitely noticing a difference in my energy levels. And I have a semblance of stomach muscles!!

Tuesday - the Dreaded Day. The bloody check up. That was at 3.00, so I had the whole day to wait, but it was a mad day, as I seemed to run from pillar to post organising a zillion things; check in on-line for Frankfurt the next day [another new experience - so cool! you can download your boarding pass! brilliant, no waiting!]. Find the passport and the letter. Do some work. Order some groceries so Aj doesn’t have to live on rice while I am gone. Etc.

Eventually arrived at the time, Jones was waiting outside in his speedy van to zoom me to the hospital. That was unplanned so it threw me and I left the car unlocked I was in such a hurry. Got there - no parking - aaargh stress, swear etc. I jumped out and left Aj to it. So of course he found a spot almost straight away. It was quick this time! Last time we waited about 2 hours. Which I don’t mind [I seem to go into Zen mode once I am actually there], but nicer to be in and out.

This time I saw Mr Renninson. My beloved surgeon. Dr Hong had sensibly done a runner. Mr Renninson ate a lot of Christmas dinner I think, as he is looking a tad portly [strange what you notice!]. He marched in and the first thing he said was 'your CA 125 is 6'. So casual! SIX??? I was so pleased I almost fell off the bed, knickers or no knickers! As for Jones, well I would love to have a photo of his face at that moment. Really that’s when you know how much someone loves you - the total relief there was shocking.

Anyway, Renninson did the physical exam [NOT as thorough as Hong, but I won't bore you with the technical details and I am sure he knows what he’s doing]. He then pronounced: "right, you’re ok, you can bugger off". What? I had a million questions! And what was an eminent surgeon doing saying 'bugger' anyway? I managed to remember one, and had him in fits. One of the girls in the group we have started on Facebook [marvellously named by our Tracey; ScAaaarrrggghhh!! Tissue – heh heh] told us all that when they do the full hysterectomy / oopherectomy, the vagina then becomes like a sock. It's not attached, and could be yanked inside out if they didn't sew it to other things!! Yuck. What a thought.

I was very sceptical of this, but promised the girls I’d ask about it, and so I did. Renninson’s face - hilarious! I am sure I was his tea break 'spazzo patient story'. He told me in no uncertain terms that that was not true. His final words were: "that’s a load of bollocks". Ok, don't mince your words there R! He was obviously on a roll that day. Full of cheeky remarks. Apparently [and obviously] the vagina is attached to lots of other things anyway, so there’s no need for them to sew it to anything else. Good show! Right, off we went, great relief. To say the least. Rang Mumsy with the good news, text all my friends the same and off home.

Right - out of there and off to Bristol to stay overnight with my darling Godmother. Had a superb dinner, and a lovely evening - up at 5.00am to go to Frankfurt and she even drove in front of me so I could find the airport in the dark. Such a darling. What can I say - I was still delirious from the results the day before, so likely would have ended up in Brazil. Thank you sweetie.

And THAT was all nice!!

OFFS!!...don’t ask

Friday 8th January

well, not a very good day actually. I know everyone thinks I am really positive and strong. Well, don’t be surprised when I am not. I am just like you - normal - I also freak out at the slightest thing. Not spiders - no. But cancer returning? Yes.

I do try to be positive, mostly. But today was pretty bad. I am not sure if it was the circuit training or just a glitch, but all day today I have had horrible groin pain where the original cyst was removed [maybe ghost pain like when you have a leg chopped off? god what a thought] and terrible low back pain. I was trying to work through this, but had to jump up every half hour and walk around - not too good for the concentration! Work, jump up - work, jump up - brilliant! like yo-yo girl....

So. Walked around the kitchen [which is small!] crying and railing away. Then my Mum phoned and when I put the phone back, I smashed my head on a hanging candle thingy we have – right on my new scar!! Well, that was it - I screamed and cried and cursed at the top of my lungs. Good job we have a 300 year old house with very thick walls.

I think the DHL chap was a bit startled at my appearance today [he is used to me being in a dressing gown, but not used to a wicked hag who is rather abrupt] and let me sign without checking. Nice delivery by the way - it was 5 copies of the book I illustrated for my friend Isabelle’s Mum. So one good thing today. The books are so cute!! I feel rather pleased at having helped Jeannine realise her book. Jeannine wrote it - it’s lovely. I am so proud that I was the person to illustrate it.

Anyway. Back to complaining. Well, not totally. Andrew is feeling better [yippee! fantastic – he has been so ill, it’s great to see him back to a semblance of normality], so off he went and got me bottle of wine and a bit of shopping – good thing too, as otherwise I should have had to go myself – hmmm, bad idea. I am NOT feeling sociable at all. So that was very nice.

But I also feel bad, as one of my dearest friends brother is having terrible problems. Life threatening, and horrible. I think of him every day, as I know that just like me, he must wish that his life were normal – and that he was better. I AM better, so I can really sympathise. He is on constant treatment [painful and unpleasant] and his family are always wondering. So, we all send him our best wishes and thoughts...Nelson, be well soon.

And [just so you know I am not perfect - er, doh] I spent all day today crying. I think it’s the ‘Check Up Thing’ - we trundle along for 3 months [ideally] not thinking about cancer; then suddenly we have to think about it, as we have to have 'The Check Up'. Which is great, as we have 3 months more of being cancer FREE afterward, IF everything is ok when we go. Hopefully. But also not so great, as it reminds one of where we actually ARE. In the land of: 'Oh yes, you may have 5 years to live' or 'you may not'. Oh that totally fucks up your head. And no, I am not apologetic for the obscenity - that’s all there is to it. Try it - you’ll see.

Oh and thank you everyone for NOT saying 'it’ll be ok' – that would really be infuriating. I know that’s the ‘thing’ to say – but actually, it’s not – the ‘thing’ to say is 'I HOPE everything will be ok'. But even so. Thanks to everyone who 'thinks' everything will be ok – I hope so too. I really do.

back to normal?

Sunday 4th January


So, I did feel better the next day! :o) Onward and upward...

Well, Christmas is now behind us once again – not the best one I’ve ever had, with Aj being so ill, but still a nice break [and a nice duck!]. But we are really going to have to try and arrange a ‘proper’ holiday at some point – away from the house, the cold and the bills! This is the worst thing about us both being self employed – every time we take a break, it costs to get someone to run the shop, and I worry now about needing to keep my holiday days in case I need them for some idiot reason. No paid sick leave, no easy ride. BUT saying that, we had a break, so we can’t complain. Some people didn’t stop work at all.

We were talking about the madness of the UK with regard to holidays – suddenly it isn’t the ‘Christmas Season’ anymore – it’s the ‘Holiday Season’. What? hmm...interesting...Anyway, best not go down that road! And of course now that Christmas is over, it’s SALES, and DIET and get FIT. Then it’ll be Easter – eat tons of chocolate, then diet and get fit again...oops, then it’ll be Christmas again...like a manic merry go round of hard selling of just about anything. Bah. Oh, and humbug. Why not?

But of course I am being sucked in this year – I shall be there tomorrow, jumping about in the exercise class at Tedburn, and down to the slimming class on Tuesday if I am not hauled away with a cardiac arrest from Julies class. The difference being, I am not doing it because I ate to much stuffing over Crimbo – I am doing it to try to regain my self esteem. Which hit an all time low last year [so strange that it’s already ‘last year’!]. But it’s slowly and steadily creeping up again. Five months out of chemo, so better get sorted I think!

I am starting to realise that yes, actually I should be pleased with myself. We had a right SOB of a year, but we’re still here, and still together and on the up. And I am getting a little more normality every day. I have gained a fabulous network of AC girlfriends in addition to my family and friends. I have managed to cope most of the time, and remain positive. A hard one, but I’ve done it. Amazing, as if anyone had asked me before I got cancer, how I would cope, I would have said I would NOT have. Well, well, we learn something about ourselves every day – it’s great to learn I am stronger than I thought.

Tomorrow I am off for my blood tests in preparation for my 2nd 3 monthly check up next week – my state of mind is odd, as I am not nervous, but I am agitated. I can’t seem to concentrate well, and everything seems a bit irritating. I don’t feel like talking to anyone, yet I feel like babbling away like a maniac sometimes. Claire’s right – we need to find a way of coping with the run up to the check up, that doesn’t involve violence upon our fellow men ;o)

I have lots to ask Dr Hong – why do I have those pains in my tummy, why are my joints so agonising in the morning, why are my eyebrows falling out again – oh, and what about the ligatures [cheers Stace heh heh]. And a few other things of course. Will the questions ever end? Can I know enough or do I know too much? Some of the AC girls don’t know much – I am not sure if I could cope with that. Anyway, eight days to go. Which I shall try to fill up with work and my new good intentions...

good news from the AC camp!

Thursday 9th October


Well, the holiday was absolutely fabulous. I don’t think I’ve ever had a better one. Andrew found the most amazing apartment right at the side of the River Douro in Ribeira [Portugal]. We had a huge veranda, and could sit and watch the boats and people going by, the sun setting and rising – the weather was perfect, 28° and sunny every single day. I amazed myself by being able to stomp merrily up the hill to the town centre [very steep!!] and managed the 6 flights of stairs to the apartment reasonably well too [rather a lot of puffing on the 4th flight – not to mention legs that felt like burning lead!]. Thanks to Julie I think – my circuit training is paying off! Andrew was funny, as he was pretending that he was also shattered at that flight – I know very well that he lifts tiles every day and could probably run up them singing an aria at the same time. But he made me feel better anyway. As Nat says [and it always makes me chuckle]; My Favourite Husband!

While we were there I really did manage NOT to think about cancer, apart from one evening when I just went into one, very upset about the fact that Andrew is stuck with a wife with all these tedious problems – but hey, as girls, we are allowed to do that anyway right? And as always, Aj was a brick, so that was ok. I think it wouldn’t be normal if we didn’t flip out occasionally.

We had a little get together at the apartment, and it was so good to be ‘normal’ and go a bit mad. With people who accept what’s happening and can mention it in ordinary conversation without getting all maudlin about it, plus those lunatics love my hair...hmm, therapy may be in order methinks! One more person rubbing my head and I would’ve been bald again!

Lots and lots of laughter as usual – it’s the fault of my friends in Portugal that I have so many laugh lines. Well, I’ll call them that anyway...I think I’ll make them club together for a face lift for me as punishment...lots of Planalto [thank you Marina!], gorgeous freshly cooked Rissois [who else but Pat the Little Chef?], a fab Tortilha [aaargh! so bad you weren’t there Bella] and the great company of a new friend plus my usual bunch of crazy people. Only one missing, but that was the fault of Cersaie. Boo.

Anyway, waffling away as usual – the main thing being this: I am in REMISSION!! We arrived back on the Sunday, Monday I went for my blood tests [got into trouble for that – seems they only process them every Tuesday, so mine were rushed in and I should go a week before next time. Ok – salute, salute!] and Tuesday I went for the first of the 3 monthly check ups for the year.

WHAT a nightmare Tuesday morning! Thank God for Pat being so patient or probably my head would have exploded. She gave me some work that is just repetition and called me to be sure I was still sane – and I was still struggling to do it. I was not so much ‘stressed’ as completely deranged. I had a hot flash every hour, my heart kept trying to jump out of my ribs...you know what I mean. It was more ‘anticipation’ than fear – but once I arrived at the hospital, I was so calm. My brain goes: “ah, good, we are back where if we try to drop dead someone will save us, so we can chill!” So I was quite calm when the nurse said to me that I would be seeing the registrar. And I was also quite calm when I told her that actually I WOULDN’T be seeing the registrar, I would be seeing Dr Hong, thank you very much. Registrar?? I don’t think so babe. A small tussle, but we succeeded in the end, and I did see Dr Hong. She did an external and an internal exam [eww – yuck] and pronounced everything to be fine. And my CA 125 is now back down to 7!! Hooray! No more B&H for me thanks...anyone reading this, if you go anywhere, send L&M blues [lights] to me! I will reimburse heh heh. My CA 125 went up when I changed ciggies [yes, yes, I KNOW I should give up, but you try it in the middle of this little lark!]

So...hmm, where was I? Oh Yes!! We got the good news and decided to celebrate...er, difficult! We were so exhausted from the relief that really we just had a quiet drink and collapsed. Celebrate another day. Celebrate every day! Why not eh?? We all should...for no reason at all...

gibbering away

Tuesday 23rd September

With 14 days to go until the first 3 monthly check up, my mind is still gibbering away and affecting the Rest Of Me [and probably those around me, long suffering souls that they are]. The Rest Of Me is unfortunately unable to escape it’s evil blathering. I think it would be rather nice to be able to remove one’s head every so often, check it in like a hat, take a break and collect it later. Thanks, yes, Head No 14, the one with the Grade 1 haircut, just pass it over and I’ll dust it off and reattach.

Just to have a break to think about nice things, not THINK or TALK about cancer, and try to remember that other people have things going on too - I find this very hard at the moment. I have become rather a thoughtless person lately I am sure. Even when I try to be thoughtful, half way through I forget what it was I was trying to be thoughtful ABOUT...can’t win eh?

But today has been good - I have been waiting for A to get her results, she had a CT scan last week, and has been chewing her nails ever since, and today was the Big Day. This is where the communications between all we girls who are battling OC becomes a blessing I think. I was so worried about her, and trying to cheer her up while she waited that I forgot about me - great! Finally got her results, and she is clear! What a relief, and I can’t imagine why it should be so, but the fact that she is clear makes me feel more confident that I will be too.

It’s not normal to be thinking about your Life this much. But gone are the days of blithely expecting to live to a hundred, making long term plans has been put on hold for a while, apart from short term things like next weeks little holiday [for which I am eternally grateful I might add! a holiday, at LAST]. One half of my brain is merrily carrying on with life as if nothing horrible has happened, or will happen. The other half is saying 'don’t be stupid, expect the worst at least you’re prepared'. In the middle there’s me, going: "Will You All Kindly Shut Up!?".

The day we go on holiday I am leaving my brain here. It can cogitate away to itself and leave me out of it for a week! I shall be in bimbo mode and Aj can do all the thinking.

In the meantime my hair is growing with a vengeance - good old hair, mine's always been like a mad plant and cost me a fortune in hairdressers bills. Now I can’t wait until I can take the Aforementioned Head to the hairdressers. Just to decide what to do with it? Someone did suggest I dye it green and print ‘Dunlop’ across the back - I am a bit tempted I must say! Tennis Ball Jones, here we come. I have stopped wearing the wig, and just wear a cap or scarf, as I am sure my hair doesn’t want to be flattened all day long. I am hoping it’ll be like a weed and grow quickly toward the light!

And by the way, people don't really seem to notice such short hair. Of course you get the odd one that'll give you an scary look - but eventually my hair will grow back and I'll look normal, and sadly they'll still be rude and thoughtless, so who cares?

The odd thing about the re-growth of all the other hair is that my skin is rough wherever it’s growing back. Not very pleasant, and I am hoping it’s a phase that’ll pass. Plus the teeny weeny hairs that grow on my face have grown in quite a lot more noticeably than they used to be - a bit worrying! Hello, a new complex to add to the others...my face is like a peach. But, there’s always lasers so I don’t care. I will wait and see what happens, as it seems that it’s quite common for quite a bit of hair that comes back to fall out again, change colour or do sundry other mad things.

Hmm - that’s something to look forward to isn’t it? I suppose variety is the Spice of Life, and that’s certainly been true this year - variety that is. Certainly can’t complain that it’s been boring. And having met such a great bunch of girls along the way has been a real blessing too. I now know I am not the only person in the world who can Talk for England heh heh.

And, today I had more flowers from P across the road - he sent them round this evening with his daughter. The others were only just finished, so now I have another lovely vase of Dahlias next to me on my desk. I tell you what, he certainly grows superb Dahlias! So sweet...and so cheering!

only [?] 19 days to go

Thursday 18th September

After our holiday, the next ‘event’ to deal with is the first of the years’ four 3 monthly check ups. It may be that it’s only [or not ‘only’...depending on the point of view] 19 days until the first one, but it is doing my head in a bit. One minute I don’t think about it at all, the next I can’t think about anything else. I wish I could stop thinking at all some days. It seems AGES to wait, yet seems to be approaching at speed. Whereas the holiday seems to be taking ages to arrive – how is this possible eh? Two time zones in one head? Although after this year, nothing seems impossible any more!

A friend put this really well: "the big picture vs. the day to day". One minute I am serene as a Zen master [in the day to day bit], the next I am wondering what my body is up to now and trying to prepare myself for the worst [the big picture bit], whilst also trying to be positive and concentrate on the fact that I will be 100% clear. And saying that, I feel better than I have felt for ages [over a year I’d reckon, not including this one] so I don’t know what I am worrying about. Which might be the problem actually...

Better to be prepared for the worst? The underlying worry being that the cancer had spread onto my bowel. Niggle, niggle in the back of my mind. Or is it better to hope for the best? The positive aspect being that I have now read all my medical notes, and they say without deviation that the 'debulking' surgery [eww! thanks for that Mr Renninson - makes one feel like a cow] was extremely successful. Bah! I will just do both - multi tasking is becoming a lot easier now that the chemo is finally starting to clear out of my system heh heh. Probably the best plan is to just colour my hair and forget about it!

I now have hair growing as you can see...I can’t explain how this has helped my self esteem. I am still trying to sort out the weight gain and the scar problem. The scar will never go away, but it can definitely be improved upon. Having no muscle tone in your middle is not very attractive at the best of times.

As you know, I have my Personal Trainer [Julie] come every week. Until last week I hadn’t bothered much with that except when she was here. But last Wednesday I suddenly realised that it was me that had to do something. No-one else can help me and the fitter I can get, the better my body will be able to cope with anything [the big picture again! have to think about the old bones now that I have the menopause]. Oops how unfortunate; I have to actually get off my lazy butt. Oh, and I really don’t feel like it I can assure you - I am NOT a great fan of exercise.

But having made the decision [yes, I know...again!] I am now behaving myself and do something active every day. If I don’t do anything I feel guilty. If my diabetic friend can take up kick boxing, then I am sure I can do this circuit training! And it definitely helps to have Julie come round, as I know I wouldn’t do anything at all if she wasn't due every week. Surprisingly, I am already at the point where I can do things I couldn’t do when we started. Building up my 'core strength' apparently...groan. And it’s a far cry from when I’d had the surgery and didn’t think I’d ever be able to do anything properly again.