breathless

I am always rushing these days. And this week has been no exception. It seems I don't have enough moments in the day. Or enough days in the week. I am breathless.

It's been a good week, and a very bad week. A very LONG week. Count the good first - my check up was fine, CA 125 up to 9 again but still well within the norms. A milestone for me, as it's 2 years [amazing! doesn't feel like it!] since my last chemo in August 2008 and I am now going for my next check up in SIX months time. Chemo never seems far away - hopefully it soon will feel that way. But I still remember this day so vividly - I can still feel how my scalp felt then…

Yay? 6 months cancer free! hmm - I think so. But it doesn't matter, as I can call and go there whenever I like if I feel unsettled. So. A GREAT result. Relief. And Rachel has been declared totally cancer free!! Amazing!

BAD because ALL bloody week my friends have been having lots of problems. Of my dear friends, one is constantly back and forth for scans, blood tests, this that and the other - and no-one seems to know what's wrong; another one's CA 125 has shot up rather alarmingly; to be resolved soon we hope. Another has been diagnosed with breast cancer and is now in chemo. My friends [she feels like my sister] mother has been diagnosed with the same. She is in for surgery this week. WHAT is going on?? It's almost like a message, pounding it home how grateful I should be.

And I am - but I so wish I could share the good luck. Because worse was yet to come.

yay – result!

Check up day – what fun [not]. Off to Exeter. Parked near the solicitors…you can only have up to an hour there, so that was perfect.

Wandered into the shops and had a mental aberration in Warehouse. Bought stuff [as you do IF you aren't looking for anything, which I wasn't – well, the shoes apart]. Looked for the shoes.

Well, the shoes were a BIG failure. After racing about Exeter town centre looking for the Kirk Geiger shop [and not finding it], I resorted to the iPhone and looked it up on the www. Oh yes…it was in BRISTOL that I went into that shop…stupid chemo brain. So, no shoes. YET!!

Then Aj rang and said he was home, so I went to pick him up to go with me to the RD&E. Thank goodness I did. The parking was a complete and utter nightmare. Aj dropped me at Force and went to try and park. I dropped the collection box in and got a new one. Everyone seemed very excited by the weight of the box. I also got some Christmas cards. Then went to find the DH. He passed me in the car, waving his arms and legs in hopelessness of ever finding a space. I merrily left him to it and went for a cup of coffee in the waiting room.  WAITING being the operative word! An hour late! Oh well.

Of course, as soon as I got really stressed and raced outside for a cigarette, I was called. Raced back in and assumed the position.

Right – First thing, the CA 125 is 8. Yay. Up 2 from last time but not actually 'up'. Relief there. Although I do understand this is not definitive, it's still a nice little control mechanism for panic.

Next; regarding the pain I have been having. Initially I had a dull pain under my left ribcage, almost straight after the surgery.  That has remained constant. And I don't worry about that. Maybe it's a scalpel or a hat that someone forgot. But for the last few months [since my last check up] I've had a new, more painful pain that runs down my left side just inside the hip bone. The last few weeks it's been going down my leg too. NOT conducive to cheery thoughts. Renninson said it is the large intestine, or bowel, and apparently it's backing up? He can feel it, and shouldn't be able to.

Charming. A 'backed up' bowel? Eww. It seems I need to drink MORE water, and eat MORE fibre. Probably linseed oil. Which I always thought was for cricket bats [all important task of applying Linseed Oil to your bat...don’t forget the toe!]. Renninson thinks not. It's for bowels and I should have it at breakfast. Sounds suitably repulsive, but I shall try it.

And he's sending me for a CT scan. Result. So now I can chill out [between scoffing fibre and guzzling water and linseed oil] until the scan results. Hoorah.

what WAS I thinking?

Today was a bit odd. The plan was to go shopping for shoes. I need shoes. I have a fetish for Kirk Geiger right now. Although any shoe will do! Retail therapy. These are pretty kick ass.

And jeans – but I hate shopping for jeans. They are always too long. And I always have to try on about 50 pairs before I find anything that's remotely a good fit, and by that time I am in such a temper [plus HOT and bothered and looking like a maniac] that shop assistants run away and I can't pay. Anyway, I didn't do anything, as I went upstairs to get ready to go out, took one look at the bed and decided it would be altogether more sensible to just go to sleep for an hour. Fatigue – I don't get it so often now, but when I do…uff. Well, the hour became all afternoon, and having gone to sleep while the sun was shining in the window [nice!], I woke up to total darkness! It was only 5.15, but night time already.

But I obviously needed the rest, as I feel great now. It's been an age since I just allowed myself to have a rest – I seem to fight the idea of sleeping in the day for some reason. Maybe a kick back to being in chemo, when I HAD to stop and sleep in the day, whether I liked it or not. So tomorrow is now shopping day.

In the meantime, earlier on, I was deleting, replying and sorting a zillion emails in my inbox, outbox and blah box. And I came across one from Ovacome, full of useful information about statistics that I might want to know for Thursdays TV interview. So I clicked on the link – ah, stupid. VERY stupid. Today was NOT the day for looking at that [no matter how useful!]. Survival rates, how many women die from ovarian cancer, Ovarian cancer statistics table…blah blah. I have made a rule NOT to look at stats…so why did I do that? I did get rather upset.

But as usual, something happened to make me feel better [I find this happens a lot] – my step daughter Jen text me about bikinis. And holidays. And we texted back and forth, and I forgot all about the stats. She's working until 3.00 in the morning. She's worrying about buying a bikini for the holiday – she also had some encouraging words for me about tomorrow's check up. So I got involved in The Search for A Bikini. See? I have my priorities sorted :o) Bugger the stats, I have deleted that email, and the web site…

Jen.

a busy week

This week is going to be entertaining if nothing else. Monday I have a day off – yay. And double yay, as so does Aj! Amazing. A day off together? Woop woop!

Tuesday I have The [Dreaded] Check Up at 3.15. Yay and not so yay until afterwards when they've told me I am ok, and that there's still no recurrence of the blasted cancer. Which is what I am obviously hoping for [no brainer there eh?]. And it seems lots of other people are too, thank you very much all my crazy friends and family. If my results were taken only on my well wishers prayers and hopes, I'd never ever worry. A friend posted this quote this week, and I love it - "Good friends are like stars...you don't always see them, but you know they are always there..." Magic. And so true.

Thursday morning at 8.15 [8.15!! fogo!!!], I am doing the interview for SKY Real Lives, 'The Secret Guide to Women's Health' in a house in Notting Hill. Apparently Aj will be ensconced in the 'Green Room' – I hope it has food or he'll be most aggravating heh heh.

All rather organised, taxi from home to the train station Wednesday night after Aj gets home from work at 6.30  [yep, it's changed from Wednesday to Thursday – aaargh], direct train through to Paddington, another taxi waiting to take us to the hotel in Bayswater. We'll get there about 9.30. We have discovered a Brazilian rodizio restaurant right down the road from the hotel thanks to Google [love google!]. We will have dinner there and see if it's as nice as the ones in Portugal, which we LOVE. It is certainly far more expensive than Portugal, so it better be good! Or we'll complain ;o) I best remember to book that actually. Caipirinhas and picanha here we come!

After the TV interview [which is, by the way, with a very FAMOUS person – but I can't tell you who now! Wait with baited breath please…all will be revealed] and with an eminent Professor of Medical Oncology too [also to be revealed – sorry!]. And, my favourite TV person will be there, Lorraine, so I am not TOO nervous! Amazing – that I will meet someone who spends his entire life trying to find a cure for ovarian cancer. Probably [definitely!] I should hug this man and tell him how really grateful we all are – without people like him, men or women, I'd be dead. Thank goodness they are out there. Pretty tedious to die in the middle of things!

Lunch time on Thursday we take the train home from Paddington, and in the evening I am off out with a bunch of cancery types like myself. I am sure by that point Aj will be rather glad to get shot of me. We girls are having dinner at the Port Royal just for fun and to have an evening of nattering. Elly is doing us a special meal, and of course there's a quiz going on, so it should be rather lively. Looking forward to that, as by then, everything else will be done.

One way or the other.

five days to go

 

Hmm – so busy ranting about the STOLEN 'A board' [that made me SO cross! thieving is so disgusting. yes, chop off the hand] that I forgot to update The Worry List.

Worry 03: Delete [thud…]

The drive home from Gatwick was ok, as far as driving for hours on end in billowing [yes, 'billowing' – not 'normal', no that'd be too easy – but it least it wasn't freezing fog] FOG, tipping rain and pitch darkness goes. Traffic wasn't as heavy as I'd expected and the trip was uneventful [love that word] apart from the usual halfwits who can't drive even in daylight. So I had an early night after a lovely chat with the FH. So good to be home and see his little face. Yay!

Worry 04: Delete [another resounding thud]

This morning, up nice and early, unpacked, slapped the laptop into sync mode with the pc and raced off to have my bloods taken. Yay -the phlebotomist is also my GP's secretary. No exploding pumps or problems at all. It seems the veins in my right arm [only one lot of chemo went in that arm, which may have helped the veins – less mustard gas is possibly a good thing] are now recovering. So my blood is now en route in it's little tube to the lab for scrutiny. I'd quite like to see that lab. When my blood is there. So I can get my results immediately.

Yes, I need therapy. Anyway, the rest of the list:

Worry 02: under construction…well. what can one say?

Worry 05 [and Worry 01]: bah. I keep thinking I am dying. Full of cancer. Every ache or pain I become distraught. In my head. Here. I try to deal with that. I am sure I am gaining ground, even though sometimes the people around me seem to forget where I am...just one year out of chemo. I am not sure if the shock has worn off even now – although I am VERY good at ''appearing'' normal. Perhaps TOO good. Maybe sometimes I should collapse on the floor. Screaming. Just so people can see what's really going on in my head. But then again, that wouldn't be very professional; now would it??

one week to go

Seven more days and I have my next check up. Uff. That'd be Worry No: 01.

I have plenty of other things to worry about, but that’s the thing that keeps pushing it's scary little face to the forefront of my mind. It makes everything else seem quite irritating and gnat like.

Worry 02: I am quite keen to get a new contract sorted out here in Portugal - the 2 months notice period has come and gone, so ideally, if the company wish to renew it for another year we will resolve that before I return to the UK. That's in, and under consideration. If they don't I will need 4 hours to say goodbye to everyone. If they do renew, that will be one less thing to stress about.

Worry 03: Drive home late tomorrow night. I am always concerned at my tiredness level - Gatwick is three and a half hours drive. During rush hour. In the dark [and probably the rain] Oh joy.

Worry 04: I get home, unpack, go to sleep, jump up Thursday morning for work, then race to the GP to have my bloods taken. I still hate needles even after all the stabbing and prodding that's gone on over the last 2 years. But I have wised up and no longer allow this appointment to be made with a nurse - I much prefer the phlebotomist thanks. Pumps exploding off the needle and black and blue arms have taught me a lesson. My veins still suck [well, they lay low that's for sure] and need an expert to find them without everyone ending up looking rather pale. Not to mention feeling rather cross.

For the last few weeks I have had a horrendous cold and cough  [thankfully the cough is no longer forcing me to bend in half and the cold is gone] but I haven't wanted to ask for any antibiotics in case they affect my blood tests. Yes, I know…stupid. But there you go. So once I've had the blood drawn, if I am still coughing my guts up, I shall shoot off to the GP and get something for it.

Worry 05 [see Worry 01]: The Check Up…tadaaahh…why am I not used to this by now eh? Although I definitely feel less demented so far, there are still 7 days to go. Lots of time yet for mass hysteria. And I don't think I'll ever get used to it; maybe it is expecting too much to even try. It's like 'getting used to' being hit by a car - I suppose you probably just don't. Though I wouldn't like to have to prove that…

And last but not least - I haven't done ANY Christmas shopping at all! Useless! After Tuesdays check up and Wednesday's TV thing, that is going to be the order of business methinks. Although next Thursday night we're off out for a girly dinner, so it may have to wait until I recover from that…perhaps I'll simply grab Aj and abscond over Christmas? Now there's a thought…

not much thinking going on

I have 'forgotten' far too many things recently. Well, not recently – but generally since being chemo-ed. Some things were quite very serious but hopefully will be resolved. This memory thing plus the 'I can't prioritise or FINISH things' thing sucks. 'Constantly baling out water – but I still feel like I am going to sink'; that's me. And it's hard to explain – there are no 'good' reasons that make one forget, neglect or avoid doing IMPORTANT things. It's getting better – the book 'Your Brain after Chemo', has helped. What a relief – I am not the only person like this. There are a LOT of us. Maybe we should start a club, as our normal friends probably shouldn't have to put up with this crap.

Multi tasking now involves palpitations and lists. I am getting quite good at using Excel [there's a programme I detest!]. I need to be very organised or feel like I might scream.

Hardly surprising, with everything that's been going on. Aj has relocated his business. Relocating a tile shop involves masses of heavy lifting, so he has been at it from 7.30 in the morning until 8.00 at night for about 3 weeks. And dealing with all the legal side of it, banks, solicitors etc during the day [in between hauling pallet loads of tiles, stands and stuff] has been making him crazy. He has been mainly falling in the door every night, then almost straight to bed.

My evenings have been spent working on all the advertising, the website and signage. This weekend I was painting floors blue and carrying horrible hand boards about in an attempt at organisation of chaos. I hate painting floors. We are both exhausted. But today the new shop opened! Yay!

And the other good thing: I haven't had a second to think bad thoughts for weeks. Well, apart from the fact that this hideous cold I have had has now moved to my chest and I am worried about it becoming bronchitis. I am coughing myself awake at night. But drinking cough medicine and sitting upright seems to help.

On the the 14th we were supposed to have the swine flu shot – seems Aj has to have it too in order to avoid getting it and giving it to me. But we have been moved to the next batch, which no-one knows the arrival date of. Apparently they do the Swine Flu vaccination in batches of 500. They will send us an 'invitation'. Uh?

I got my GP to sign that form that gives cancer patients free prescriptions. Gotta reap some benefit from this horrific disease right? Still waiting for that to arrive.

In the meantime I am going to Portugal to work again. Need to leave at 5.30 in the morning. The day after I return I go for my bloods. On  the 17th November I have my next check up. On the 18th we are off to the SKY studio for yet another interview.  Then we are off to see Rodrigo Y Gabriela [something to look forward to – yay]. Then to Brighton to drink cocktails on my friends rather posh seafront veranda. Then the kids are down for the weekend…

Actually, now I come to think of it, no wonder I'm confused and forgetful. Roll on the Christmas break!

check up time again…

why are we so nervous nearing the check up? we/I should be jumping for joy. It's just a confirmation that we are well. Right? No. It's a test to see if the cancer has come back.

The last few weeks I have been worrying a lot. When I initially asked Dr Hong HOW I would know if I had a recurrence, she said that I would probably have the same symptoms as I had in the first place. And that it would probably recur on my stomach IF it were to recur. Oh joy. They were hardly 'in your face' symptoms were they? A swollen tummy, a lump in my groin, extreme tiredness. Well, I have the extreme tiredness again, that's for sure. And it worries me. Plus, apart from being exhausted, I have a lot of strange pains in my stomach – these are apparently 'normal'. After massive surgery like I had, you get pains. Adhesions etc.

Whilst in Portugal I rang the oncologists secretary in tears – she said better to wait until your appointment. So, I will.

But normal?? What is that?? Tomorrow I have to phone and book myself in for my bloods. I should have done it today. But as usual, I leave the important things to last.

To my detriment.

spreading the word…

this is cool! I have been rather honoured with being the Guest Post this week on Dennis's blog, 'Being Cancer'. 

As a matter of interest, his August Book Club Selection; "The Light Within", concerns a woman with ovarian cancer and her female physician. 

He has also added a number of bloggers to the ovarian section [scroll down to it]. I found lots of my friends there :o)

Dennis' blog is quite a mine of information – not just for women with ovarian cancer; as far as I can tell, there's something about just about every type of cancer on there. He has a blog roll, 'Cancer Blog Links', which contains hundreds of blog links grouped by disease type. So you can hook up with other people that are going through the same thing as you are, perhaps getting advice and support from survivors or caregivers.

This is just a quick thanks Dennis. Your site is excellent, your own story is so encouraging  – and anywhere I can raise awareness of ovarian cancer, I am only too happy to be there! I rather wish I hadn't cursed in the middle of the post though…;o)

what a day

Arrived with Julie at the Oncology department, and the first thing was, they didn't have our details anywhere. Hello heart failure…but they soon found everything and off we went to the waiting room. Waiting…waiting..and MORE waiting! Bugger. They were 1 hour behind. Sitting there feeling sick. Eventually Julie went in, and came out with a good result - she will be scanned soon, and as it's near her 5 year mark, that seems sensible.

Off she went to the pub to wait for me. I was an age…but everything went well, and as I came out, Aj arrived to pick me up, and off we went to the pub to meet J and celebrate our brilliant results, PLUS Julie's birthday!

Brilliant - my CA 125 is back down to 6. Last time it was 9 - mine seems to nip up and down between 9 and 6 so I am very happy. Dr Hong was happy, Aj was happy and life is good! The norms are 0 – 35 (μg/mL).

Today I discovered something that I was 'sort of' aware of, but didn't really take much notice of as it doesn't apply to me. But since hearing my friend MA's story, I took more interest. MA's CA 125 jumps about all over the place – but this may be the reason for her not to worry too much.

The CA 125 is a marker. [well, it's also a Chinese aeroplane, but there you go…]. It can be the harbinger of a recurrence of ovarian cancer if it suddenly shifts by more than 20 points. But for example, my tumour was leaking CA 125 into my system before surgery. Many tumours don't. If the tumour isn't leaking into the system initially, the CA 125 isn't very reliable as a marker afterwards.

So before my surgery, my CA 125 was 1149. After surgery and before the first session of chemo it was 161 [25/03/08]. It went down to 30 before the 2nd session of chemo [24/04/08] – it was 7 before the 5th session of chemo. Now it is 6. Last check up, it was 9. Therefore, my CA 125 levels are a pretty reliable guide to what is going on with the cancer in my body. Right now it seems there isn't any. YAY!!

Dr Hong was quite concerned with the constant pain in my side. But she doesn't want to scan me yet, as I was pretty much blasted with radiation last year [sound scan, cat scan blah blah]. She seems to think that as my CA 125 is steady [i.e.: it is following the same constant pattern it has since the outset], and I have no other symptoms, that we can wait until November [next check up] and see where we are. Even if it was a recurrence [which it bloody isn't!], 4 months would make no difference to the treatment/outcome.

So. I am now cancer free for another 4 months! Phew…we are totally exhausted, and both off for an early night - good news is great, but waiting for it? Aaargh…

the day before 'The Check Up' – screaming. quietly…

what I have wanted to know for a while is this: WHY do we get so distressed about having this check up?  And I think I may have discovered the answer.

Weeks before, I am thinking about what 'could' happen, what 'might' happen – the worst scenarios and the best. Plan A and Plan B. [gotta have those – control, control…]. And I know I am not alone in this. At first I thought I was, but now I know better.

EVERYONE who has had cancer [any kind – oh, and how fun that there are so many varieties of this fucking disease!!] that I know, freaks out in the weeks preceding The Check Up. It's odd, as as soon as I walk into the Oncology department I am totally Zen. I have a comfort zone there, as they are the people who saved my life, so if they did it once, in a worst case scenario, they can do it again. So, once I am there I am calm and totally 'in the zone'. Am I naive? Am I stupid? Or am I realistic?

But Aj put it completely into perspective for me when he said that actually, this is a 'life or death' appointment. And he's right.

It is life or death.

And that's scary. I never really managed to think it through until he said that, but I think that's actually what makes us all into quivering wrecks. And please, anyone, correct me if I'm wrong here. But for me, the [almost] subliminal thought that 'this time' could be the time that they tell you it's come back. That bastard cancer. That sneaking, murdering, hideous little cell that could kill me if I let it. It could be the day that I discover I am going to die of this disease. Soon. And in pain. Probably in agony. It could be the day that I discover I have to have more chemo. Or some new treatment. Or more surgery. Or that they can't do anything more for me because I am terminal. Or anything.

It's a screaming unknown. And we go into it screaming. Quietly. And hiding the screams with laughter or chatter or blasé remarks. Trying to be POSITIVE. BEING positive.

But the screams batter round your brain….echoing hell. A hell no-one can see.

How positive can we be?? I know I try so hard. It takes almost all my energy. Day in, day out, trying to just keep a cheerful face on…and I know my friends do too. But what if the surgeon / doctor / oncologist gives one that bad news? How strong do we have to be?  How strong CAN we be? Do we have to just carry on 'being positive' because friends and relatives expect it of us? Or is there a point we reach that we just say: "no, enough"…

I hope I never, ever have to find out.

Frenzied plans and feeling jumpy

22 July 2009

On Sunday I arrived in Portugal for a weeks work. This is a normal event and was planned well in advance. But I had no plans to return in August, as August is the month that the tile industry 'goes to sleep'. Usually most of the staff is on holiday, the kilns are shut down for maintenance and there is a skeleton staff running the factory. We tend to try to get ourselves organised which usually involves deleting and filing zillions of things that seem to get all over our computers and desks during the preceding months.

But this year, it seems I need to be here [Portugal] in August. But unfortunately I have already made plans and with only two weeks notice it is not possible to change all of them, and difficult to change some of them. The plans are all on the weekends apart from one weekend, which is the week of my 4 monthly check-up [SHRIEK!!] on the 11th.

The other weekends all involve people arriving and staying at the house. They have booked holiday or bought train tickets, bus tickets etc. and there is no way I can change those dates without letting a lot of people down. And I don't want to anyway. Miss the ''Annual Famous For Hangovers Cocktail Party''? I don’t think so!

So the only remaining thing I COULD change was my oncology appointment . That would free up the week of the 9th to the 15th so that I could come to Portugal [unfortunately the flights are Sunday to Sunday or you walk].

Uff - NOT something I particularly wanted to do, as I didn't want to make it any later, and so far I hadn't been thinking about it too much. It was, after all, 'weeks away'. But I had to at least try to free one week in August, and that was the only solution. So I rang the oncology department. They wanted to know why I needed to change it, so I explained. The woman I spoke to was so kind! She found an appointment 2 weeks AFTER my current one, and when I said I would get far too anxious waiting longer and may end up in prison for some violent crime, she seemed to think that was quite normal and acceptable, and hunted about further. Whilst all this was going on I was feeling sick and panicked. I didn't want to even think about that appointment right then, let alone phone up and change it. I was sort of hoping it would be impossible.

After some rummaging, viola! She came up with an appointment on the 28th July. Yay!! I think…Ok - but what about my bloods? I am supposed to have them done a week before, and I am in Portugal right now, so that's impossible. Nice Oncology Person said not to worry about that, just get myself down to the outpatients on Monday, they will do the bloods and process them for Tuesdays appointment. So, the plan is now to get home at 12.30 on Sunday night from Portugal. Jump up Monday morning and race to the Outpatients in order to get seen as soon as possible - I don't fancy sitting there for hours, as the girl are down Monday and I want to see them before they go home. Then Tuesday, The Dreaded Check-up!!

All rather rushed and making me jumpy. After I finished reorganising the appointment I was completely drained.

The good things about this are:
I have hardly any time to worry about the check-up
I am here with Julie, [she’s on holiday!] and her appointment is the same day, half an hour before mine, so we can worry together
Aj doesn’t have to put up with the Post Check-up Panics and Touchy Behaviour :o)
The sooner it’s done, the sooner I will know I am cancer free for another four months

The bad things are:
I AM STRESSED ABOUT THIS AS USUAL!!!

Better for everyone to stay out of my face this week that's for sure. I am head down and working in the day, and chilling out with Julie in the evening, and Aj checking up on me by phone. Roll on Tuesday evening when we shall all be at the pub celebrating!

In the meantime, I am in a bad mood. And nervous. And pleased that this time next week it'll be done for another 4 months.

I hope.