Wednesday, 25 June 2008

me doing the cycling thing..

cycling!! RESULT!

Wednesday 25th June

Whee! This evening I decided to try the bike – I’ve been very nervous of cycling since the surgery [I am now 3 months in – surgery was 3rd March]. I thought I might be in agony just jumping on the seat – well, I wasn’t, and it was great! We cycled to the Double Locks which is about a mile and a half, then stayed a few hours and cycled home. I am so chuffed I managed it, as I thought I would have to stop and rest as I am so tired all the time – but I didn’t. Aj gave me a handy push up the big hill on the way and I made it apart from that. RESULT!!

I am shattered, but I am really pleased, as I have been exhausted again today, but the exercise has definitely helped – the problem is just getting into that mind set – 'you MUST do this' – chemo makes your mind say; ‘NO! just don’t do anything!’. Bah – I need to do this, and I have – cool!

the sun

Tuesday 24th June

The sun – ah yes, what would we do without it? Well, if you were a tomato in the UK, you’d most certainly not be a happy vegetable!! I personally would shoot myself, but that’s just me. I am an African at heart and I need to be WARM. HOT is even better. It seems to be impossible in the UK unless you have your butt hanging over a fire, and even then the front of you is always blue with cold...

But that’s not the point here [see? I am moaning AGAIN!! boring boring...] – the point is that when you are having chemo it seems to affect your skin.

What?? I have always been a person who tans very easily and I don’t burn – well, I don’t burn unless I am totally stupid. And usually I manage to avoid that. So, knowing that the chemo does some strange things, I have been timing myself if I am in the sun, ten minutes max – that is, I have been sitting in the shade, unless it’s a ten minute bit in the sun. But in Weymouth we were walking a lot, so I slapped on a load of that Factor 20 across my shoulders – oops. Bad plan – I burnt exactly where I put it!! Everywhere else was fine, so now I am extremely suspicious of suntan lotion...the rest of me had factor 2 and didn’t burn?? I think it might be because that’s where my hair has always been – long and hanging on my shoulders [imagine!! seems like another life now...long hair...what?]

So, what I would say is this – be VERY careful of the sun. No, I am not a doctor, but this is speaking from personal experience of chemo [no, I don’t care about the sun getting on me otherwise!!] Stay in the shade if you usually burn – if you don’t, time yourself and check you aren’t burning – I now have a piebald back! Yuck! Better to stay in the shade if you are even remotely concerned. Lucky for me, I am just peeling – tough skin! But if you have delicate skin, beware.. You could end up like a bacon butty!

Tuesday, 24 June 2008

a bit of excitement – thanks to FORCE

Tuesday 24th June

Surprise!! Today was good fun! Started work at 6.30 am – more about that in a minute...and took 2 hours in the afternoon to go to the ‘Look Good, Feel Better’ session. I REALLY did not want to go. I couldn’t bear the thought of having to meet lots of strangers and try to be normal. But, as the places are so limited, if I didn’t go, that would mean I was being selfish, as someone else could have had my place. So, at 1.45, I shot off in the car, paid the astronomical parking fee [£2.80 for 3 hours!! Greedy little beasts!] and tootled into Force to see what was what.

Go here: force
Force is fantastic! It’s like visiting your rellies – everyone is so friendly and relaxed and relaxing. It’s a real little haven from the chaos of cancer. Anyway, we all trundled in, most of us girls looking rather nervous [I think half of us had been thinking ‘I don’t want to go’]. We each got a little name tag and a coffee – sat round the table and from then on we were treated like we were really special. The Force ladies bring coffee and biscuits [you WILL eat choccie biccies – love ‘em!]; the cosmetics girls from Dingles brought a ‘Treat Bag’ for each person. That is totally cool – it’s filled with cosmetics and perfume, and you get to take them all home after being shown how to use them. I have worn make-up for years, and didn’t think I needed any lessons on how to use it, but I was in for a surprise. They show you how to cleanse, tone, apply light foundation and eye make up and even [this was the best for me!] how to draw in your eyebrows. I was the test monkey for the eyebrows, and it was amazing how a little can do a lot – I was struggling with that, as I kept putting too much eye pencil - now I know how to do it properly. Great!

Honestly, all those women volunteer for this, and they are fabulous. So, so cool! Thank you very much!! The only thing I would say that could make the afternoon any better would be that everyone goes off to a cafe and has coffee together after – as the 2 hours draw to a close, everyone is starting to relax and chat with one another, then it’s time to go. I think it would be very useful to have more time together as a group, to do a bit of ‘networking’ and make new friends. But apart from that it was brilliant.

So, the reason I was working at 6.30 in the morning. NO SLEEP!! Grr – the 3rd week is the best as far as being past all the stupid side effects, but it’s the worst for sleeping. I am getting worse and worse with regard to insomnia. I had a total of 3 hours sleep last night, and even that was rubbish sleep. I was dreaming that I was with friends and one of them pulled my wig off! oooooo dear! Subliminal chaos...

Plus the fatigue is getting worse every time – I am very concerned about it for the next two – I have work to do, and sometimes it’s hard. But at least I am lucky that I have a little leeway – if I need to I can work at midnight or dawn.

Today I had yet another interesting side effect – a big fat swollen foot! Oh Joy! My toes looked rather like sausages, and my ankle was definitely not the Victorian ideal. Rang the Resident Mazza Nurse who has herself just undergone a hysterectomy – but she seems to have had a ‘hysterical-ectomy’, as she is like a bouncy bouncy thing right now! I am so chuffed for her that I can’t explain - she had a dreadful time for ages, but now she’s like a mad cat again - fantastic. She said if I keep it elevated it should be fine, and if it’s not down tomorrow, to ring the ward. So, did the elevation thing and I now have an ankle again, but will be seeing this in the morning. Seems ok right now. But Oh Dear – tired?! I feel like every single part of me is made of lead.

Oops – forgot – SUNBATHING!! Next bit of the blog! Oh I bet you are just holding your breath right?? heh heh....

KBO - and enduring!

Thursday 17th June

Bugger. I am becoming a real bore. I am starting to think that Andrew should just pack a bag and run away for the duration. This has got to be the hardest thing we have ever endured. It’s hideous. We really though that when he got divorced, that was the most awful thing we had to endure – not seeing his kids when he wanted, his ex-wife behaving like a vengeful maniac – life seemed SO complicated. But now all that seems to have been so much easier to deal with than this. No-one was ill, no-one was dying or thinking about it! Incredible isn’t it, how your priorities and values change? The girls are obviously always going to be the be most important thing in our lives, but the whole prioritising thing goes out the window with cancer.

And it’s very hard. Very hard. Not just for me, but for Andrew. In fact [I think I mentioned this earlier, but I can’t be bothered to trawl through the blog to check...] I actually think that it is harder for him. I appear to have a personality change due to the chemo – this evening we decided that a walk to the quay would be good.

As usual, Exeter weather was totally crap, sunny, but of course a cold, howling gale. Aj drove us to the field that’s about half way to the quay and then we walked the rest of the way – about a kilometre. I had horrible pains in my legs and feet, so of course, instead of saying that, I complained all the way about the weather, the cold, the wind - anything at all apart from what was really bothering me. Grr – I was just being a pain in the butt, as I was afraid of the wind [the wig!!] and my head was freezing [yep – wig again – where’s my hair!??] and my legs had shooting pains up them.

Eventually we arrived at the quay, after a little rest stop here and there. And that was when I realised what I’d been doing – it’s like you know you’re being a twit, but you can’t help it. Had a glass of wine, an argument, and then sorted it - this is one of the million reasons I married Andrew - he is always so fair - this is the most unfair thing that could happen to him and yet still he deals with it well [and actually he doesn’t HAVE to - that’s the thing]. He struggles, but he manages. I am so lucky - some men would have already gone ballistic with me. I would have gone ballistic with me!! In fact I DO go ballistic with me.

The problem is this – I HATE being 'sick'. I HATE having anything wrong with me. And I really DETEST being such a whining, complaining wimp. But I can’t seem to help it. And that’s where the problem lies - I hate what I’m doing, so I do it more? What?? Note to self: must get a GRIP!

Listening to a good sounds this evening- 'Sometimes Sorry Is Not Good Enough'...oh, how true.

And saying that, my marriage is more important than stupid cancer. It’s more important than anything I can think of. If I allow this to colour my mind all the time, what am I? I totally need to get my priorities sorted again. Don’t worry Andrew, after the chemo I will be back to normal...oh yes, babe I KNOW I’m not your average normal person, but it’ll be 'our' normality - a mad sort of normality that we love...

Wednesday, 18 June 2008

the beastly cold...

Wednesday 17th June

Today I am SO RELIEVED [that’s a massive understatement if ever there was one] – my cold appears to be getting better pretty quickly. No ambulance trip or visit to the ward this time thank goodness. My mind absolutely boggles when something like this happens, as there are so many warnings about ‘getting’ things and temperatures and fevers – it makes one a tad paranoid to say the least. Any new and interesting thing that happens is either cause for a major mental crisis or a celebration. Colds are not in the celebrating department. Still taking Paracetamol every few hours, and some other horrible concoction that is supposed to clear my head but tastes so foul I think it could give me throat injuries. Oh. That’d be nice though - a clear head.

It doesn’t help that it’s awful weather as usual in Exeter; it’s overcast and my feet are cold. We get all the cloud off the Moor, which then sits on top of our house like a great big sponge. Full of water, but not doing anything useful. Plus this evening we have some sort of wind that wants to be a gale...I am convinced we have more rain here than anywhere else in Devon. Maybe in the world....If it doesn’t get a bit warmer and sunnier soon I shall be able to have a rice paddy in my back garden. At least I will be able to wear an interesting hat whilst plying my sickle and beating my water buffalo...

Good news [for me anyway!!]. At last it seems as if the Sensible Eating Plan might be working! Or our scales are broken? After 3 weeks [admittedly not a perfect 3 weeks] of Sensible Eating [crisps, crisps!! gimme crisps], I have lost ONE pound! That’s about 1/2 a kilo in the civilised part of the world where we have the metric system. I’ve decided it would be nice to have a set of scales that informs you even if you have lost even a gram. In a very loud voice. I wonder if I invent this if there would be a market for it? Women everywhere queuing at 5.00 in the morning to buy the Shouting Scales...This morning I was almost beside myself I was so pleased – hmm, small things eh??

The joint pains have been quite weird this time [such variety – oh, be still my beating heart] mostly in my feet of all places. And the scar – that’s too strange! How can that still be hurting? Feels like someone took a stick to the bottom of my feet and a knitting needle to my scar. I am sort of between a hobble and a hop, plus grabbing my tummy every now and then – nice picture right?

But it’s not too bad, and I am actually starting to think about getting to the end of the chemo now. I’ve been too scared to think about it before – sort of like it might put the kibosh on it if I think everything will go to plan. I am so worried about a delay.

I am now getting bad pains in my stomach, and random attacks of nausea every now and then, which is also new, as usually they stop after about day 4 post chemo. And of course the fatigue is getting pretty monstrous now – roll on August when I am ‘post chemo’ totally. I am absolutely cheesed off with the sudden attacks of tiredness – one minute I’m fine, two seconds later I can barely move. I wouldn’t mind so much if sleeping made it go away. But it doesn’t at all. My Emmers told me an interesting story about this, [she has been through this twice!? eek]. To quote; "I remember when I was having my first course of chemo the nurses told me they had had someone from America come over with a simulator that could give them the body sensation of how weak and exhausted chemo makes you feel - they had to strap weights onto their arms and legs and then be this woman who was having chemo. She had to come downstairs and make herself a drink, then answer the front door to the milkman, and then go and get a cheque from the kitchen table and give it to him. That was it, and they said that by the time they'd done that and had then the weights removed from their arms and legs they could barely move. I was like, yep that's why I sometimes can't get myself into the shower before 4pm, if at all!! Anyway, that level of exhaustion does wear off quite quickly once the chemo has finished, although obviously you won't be going on any 25 mile hikes a few weeks later or anything!"

Interesting. And encouraging to think that at last it will go away! And I know what she means about even having a shower – it’s a sort of bungy jumping thought, as in: Can I do this? Should I do this? Just a shower...a bath is even more of a challenge, as one has to get up the energy to get OUT. Hmm – a few times I have turned into a prune, being too exhausted to get out and get dry. Then you have to get on and so forth...bwaaa! Things that usually you don’t even think about.

Anyway, the cold is being beaten, so I must still have some immune system to speak of! By the way, I know this is all becoming rather a bore, going on and on the way it is – no one knows that better than me. And still all my friends are so supportive, as if it happened just yesterday – again, thanks all of you – you are keeping me going!

Tuesday, 17 June 2008

amusing QUOTE of the day

My VEINS are filled, once a week with a Neapolitan carpet cleaner distilled from the Adriatic and I am as BALD as an egg.

However, I still get around and am mean to cats.

~John Cheever, letter to Philip Roth, 10 May 1982

Monday, 16 June 2008

the Fathers day BBQ [ja julle, dit is n braai!]

Jones...doing the bbq against all the odds. Plus my new hat from my crazy Ozzie rellies – cheers! It’s waterproof!


loved it!! thanks my darling husband...

drugs and lurgies...

Monday 16th June

Hmm – this morning I was crabbing about like a half squashed spider, as the joint pains arrived back from their holiday in Benidorm [or wherever ‘types’ like that go when they’re not here with me!], and were in full swing. Fell out of bed and tottered downstairs to a tasty brekkie of a banana and Paracetamol on the side. Yuck. Such Cordon Bleu in this house! Soon we will be thinking of opening a restaurant in order to share our gastronomic expertise...But at least the horrible chemo mouth has gone, and I don’t feel sick any more either. I’ve decided that I prefer the chemo mouth to the joint thing. How unfortunate I don’t have any choice, and I am blessed with both...

I was so desperate for a good nights sleep on Thursday night that I finally caved in to the Temazepam – but unfortunately I still woke up every 1 to 3 hours as usual. So, that doesn’t work at all, apart from making me go to sleep faster. But as I was shattered anyway, that’s also debatable. And there I was worrying I would have such a ‘Great Nights Sleep’ I would become addicted to the stuff. Not likely – it’s useless [for me anyway].

Onward and upward – just have to carry on having a siesta in the afternoon. As usual, Saturday [the first one after the chemo] was a nightmare and I could barely keep my eyes open by lunchtime – I don’t know why but I can’t bear going to sleep in the morning – it just seems so debauched! But by 3.00 I was almost falling off my chair, so I had to concede – slept for the next 4 hours until Aj arrived home. And woke up in a very bad mood – I am convinced these steroids cause depression – as soon as I stop taking them [the first 2 days you have them for the nausea], it takes another 2 days before I feel even remotely cheerful again. Then all of a sudden it’s like my mind clears. Well, as far as it gets clear at the moment – roll on the day when the chemo is OUT of my blood stream and my brain decides to Get With the Program again.

I forgot to mention that the weekend away in Weymouth was fantastic! So great to be away from the house, work and the rubbish Exeter weather. We had scorching sun, fabulous fish and chips [they make the BEST ones there – and it’s even a proper English chippy!] and managed to do hardly anything at all apart from walk around looking at stuff, drinking wine and chilling out. So we arrived home nice and brown and probably fatter.

Also forgot [yes, yes, it’s the chemo brain – if my head wasn’t joined on by default I’d forget that too] that I didn’t get the CA-125 results this time, as apparently it was ‘too soon’ to do them. Riiight. I wonder if any of the people in the lab have had this and realise what they do to your head when they say stuff like that? What do they mean? If they don’t do it next time, I shall go and ask them personally. Disappointing, but I suppose it’s not THAT dire, as I will get them next time again. But it’s the one thing that gives you a 'reading' if you will, of how things are going during chemo as it helps to determine the activity of the cancer, and the status of chemotherapy on the cancer. I didn’t like it that they perhaps felt it wasn’t important enough, or it was too expensive, or whatever...I don’t see how it can be 'too soon' to test anything. So I am not amused with the lab people, and I wish bad weather upon all their bbq’s.

Apart from that I am much more tired this time. It’s like being hit ten times a day with a sack of cement. This consequence doesn’t appear to inform my body that I should sleep – there is obviously a communications problem here. I want to sleep. For about 24 hours would be nice. Maybe 24 days. My body is too stupid to pay attention, and will not sleep for more than 3 hours tops at a time. Grr. It would be useful to be able to get out of my body and have a swift word with it.

Sunday was fathers day, so Mum and Dad [newly arrived from Saudi with ciggies for me - fantastic!] came down for a swift visit and we made a bbq – as usual, it rained. But, again as usual, Aj prevailed and cooked the meat no matter what – had a lovely lunch, then regrettably AGAIN I went into bear mode and decided it was hibernation time – went to bed as soon as M & D left, only to be woken up by a barrage of kilted bag pipers stomping up our road. Good, now we are stuck in the house and it’s raining and I am getting really tired of this. Andrew had a brainstorm, and decided we should go for a ride in the car. Cool! Off we went and ended up at Coombe Cellars Inn, which is a rather pretentious pub on the estuary. One cannot buy peanuts there, only ‘Pistachios’ they don’t do a Ploughman’s either!

We dried off some seats outside, and sat purveying the view. Very nice. The sun came out and it was a real treat. But I am now paying for it, it seems. In the background I noticed a woman sneezing like a sneezing thing, and I thought ‘never mind, we are outside, no worries’. The sound a sneeze makes in polite society is "a-tissue" - a nice allusion to its respective remedy. And I am now right on in there with those tissues, as I woke up this morning with a cold. Shriek!

Normally I wouldn’t bother about a cold at all – unlike the majority of English people, I do not view having a cold as an excuse to have 4 days off work. It’s a cold – normally you get over it in about 4 days. But right now, with my WBC & Nuetros below the norms already, I am pretty stressed about it. Nothing I can do except take Paracetamol [and stuff my poor nose with camphor so I can actually breathe...] and hope for the best. Since I started the chemo I’ve had pretty bad sinus problems, and this morning I was hoping that was what it was, but as I am now in Snot City, plus running eyes [this is no fun with about 5 eyelashes per eye I might add] and a fat head, I am correct in assuming, yes, I Have A Cold! Whatever next?

As I have a weakened immune system as the result of the chemo, I now have to take care that I don’t develop a fever, i.e.; a temperature over 37º C. One apparently should consult the doctor if one gets a cold, as one is more likely to get a secondary infection. There are no medicines that will cure the common cold. Given time, the body's immune system will usually make antibodies to fight the infection, and the cold will be resolved without any intervention. Antibiotics are useless against a cold. It’s only if it actually becomes dangerous that they can do anything for me. So, I am now armed with Paracetamol, my trusty free NHS thermometer and some Beechams powders...oh, and the Vicks! Oh I am a sex machine I tell you – stinking of camphor, a nice swollen set of eyes and a red nose. Jennifer Lopez eat your heart out baby!

Obviously if it moves to my chest or any other aggravation ensues, I’ll be straight up to the Ward for some help. But in the meantime I am now on Red Alert with myself – what next eh? My head will fall off?? I will update this between sneezes!!

PS: I did read a very interesting article about fighting cancer with the common cold virus. If you are interested, see here: common cold [this link will take you to the web site]

Thursday, 12 June 2008

four down, two to go

Thursday 12th June

Another one bites the dust! Had the fourth chemo, it seems to have come around really quickly this time. Good show! The sooner I can get past all this the better. Although I can't really get my head round it as a milestone - it's sort of blah today. I am in “I don’t care cos I’m too tired to” mode. Also I am getting a tad concerned about my bloods as the WBC and the Nuetros have now gone below the norms - eek - don't fancy delay. Or a big lurgy! Kidneys seem to be doing ok though - must be all the wine!

Plus no sleep the first night!! Firstly I was all night with the hot flashes – had to strip the bed – horrible, and the worst it’s been since I had the surgery. Then, we had a pair of yobs smashing up everyone’s garbage who had foolishly left it in the road in bags for today’s collection - running up and down at 4 in the morning shrieking and yelling gleefully as they went about their trollish mayhem - if I'd had any energy I would've called the cops [or if I had a gun I wouldn't shot them! or myself! joke...], but as our bin is inside the gates in one of those horrendous plastic wheelies, I couldn't be bothered.

Had the heated blanket on my hand all the way through the infusion this time, as I had so much swelling and bruising in my hand last time and I was still a bit leery of having it in my right hand. And I think it did help, as my hand only swelled slightly, and it’s not so sore. Less bruising as well. Except for the very next day I whacked it against the wall – that reminded me to be a bit more careful that’s for sure – OW!! Lots of hopping about and cursing.

So far, so good – two days later and I have taken the final ‘serious’ anti-sickness tablets, so I am now having the little glass of red wine and the ‘emergency’ tablets to rely on. That definitely helps settle my stomach, even though with the dreaded ‘chemo mouth’ it doesn’t taste particularly pleasant. But it works, and it’s the first time in my life I’ve understood the term ‘for medicinal use’ when applied to alcohol! Whiskey though? Eww – think that’d make me sick for sure.

I saw Dr Hong [my oncologist] this time too, and she is very encouraging, without actually confirming anything, as is a doctors want. I swear if you ask them if the sky is blue on a sunny day, they will prevaricate and say ‘probably but it might turn green in half an hour’... In her opinion I am doing very well, as mentioned before, the surgery was very clean [I should think so, seeing as they removed half my innards!] and as the CA-125 dropped so rapidly from 1149 to 161 directly after that.

Basically I asked her if it was going to kill me how would we know - she did seem rather startled heh heh. She said it’s very difficult, as IF it comes back, it’s so small, that it takes awhile to see it. Little buggers. But what happens is you have a physical check up every three months, internal and external, to check for ‘bumps’ etc. for a year. I gather that at some point they will do a scan, and of course the CA-125 test, in case it starts rising again. Bad sign, and one I refuse to entertain. After the first year, the checks are every 6 months, then at 5 years you are in ‘remission’. Again, no-one will say ‘cured’ in case you get all excited. Can't have that eh? Too much good cheer? No no no...well, I shall be throwing a party on the 5 year mark that's for sure.

She agreed that the behaviour of the insurance company, Saga, was a disgrace, and suggested I write to them and perhaps point out that it would be better to have trained staff deal with people like me, as an insensitive person can [and does] cause a chaos with your emotions. So at some point I shall do that. It’s not WHAT they say, but HOW it’s said. Also she’s quite happy to write me whatever letter I need about being fit for travel, as soon as the chemo is finished. Phew.

The other thing I asked was about the continuing pain in my abdomen and she said that's normal after this style of surgery - seems Renninson rummaged around and basically ran his hands over every single organ he could reach [which is almost everything except my brain], and her delightful expression was that now all my organs, instead of sort of ‘flopping about comfortably in there’, are more like a 'congealed spaghetti'!!! Nice image!! So they're all 'stiff' and that's why I still have pain there. May get sorted, may not. I will have to see if there’s anything I can do about that. Maybe a bit more exercise would be good. Not that I feel like even moving at all.

Discovered about the weight problem! It’s the steroids AND the chemo – my face has gone all round and cherubic, and that’s a sure sign, plus no exercise [again – must get to it] and diet, like most chemo patients I just fancy stodge all the time, I think that mentally I feel it’ll ‘sop up’ the chemo – now I am back on the healthy diet, after pigging out on fish & chips on the weekend [fab!! best I ever had – usually I hate them, soggy things]. See here for info about this: weight gain[this link will take you to the web site]

Dr Hong said that as the Oil of Evening Primrose appears to be doing nothing all about the hot flashes, she will see after the chemo what we can do. I agreed with her, don’t want to do anything now, as I am inundated with enough drugs already.

So now just to see what the next two weeks bring – eating healthily and drinking gallons of water – oh, and the best bit is Mumsy was reading the blog, discovered about the Planalto wine being my favourite, and the upshot is there’s a case of it on the way! Fabulous – very hard to get it outside Portugal, and twice the price too! So that’s something to look forward to – I might even share it with Andrew...then again...might not!

Friday, 6 June 2008

another Friday | another blood test

Friday 6th June

It’s our EIGHTH wedding anniversary today!

Hard to believe it, time goes so quickly when you’re enjoying yourself! Plus it’s almost the weekend, so I zoomed out and invested in a nice Chablis for Andrew [he loves it] to devour when he gets home this evening. And a nice Pinot Grigio for little me [I'm not fussy and as I can't have Planalto, it'll have to do]. Not quite bbq weather here so I better think about cooking – NOT my forté at all, but I am sure I can come up with something edible. Anniversary Omelette has rather a good ring to it!

Off to Weymouth, King George III’s watering-place, tomorrow for the weekend – great, I can’t wait to go somewhere different and it’s quite quaint and pretty busy, so it should be entertaining. I looked at the weather channel three times today and each time it’s completely different! I wonder if they’re having a drunken Button Pressing Party down at the Met Office? Much more reliable to look out of the window...
Lots of good news today, as my darling sister-in-law came out of hospital yesterday – and my friend Karin too – what’s this all about anyway? Is this 'The Year of Surgery' for everyone I know? It’s ridiculous – next year I think we should all get together in the Bahamas and celebrate some normality. Such a bunch of attention seekers...but it’s made my day that they’re both out and now on the road to recovery.

The blood tests went well this morning. We used the other arm, seeing as how the veins in my left arm are a bit uncooperative, and I still have a bruise from last time. I think I am going to have to have the cannula in my right hand at the next chemo, even though I’m not keen on the idea. But the back of my left hand still feels bruised and uncomfortable. Maybe it’ll be ok if I use the right just the once, in order to give the left hand a break. Seeing the oncologist, Dr Hong again this time, so I can ask her a few questions about travelling, as I understand I have to get a letter from her for the insurance company [when we eventually find one that is equitable], to prove that I am 'fit to travel'. As if any person in their right mind would travel if they weren’t? Ho hum – mustn’t get started on insurance again.

So, off for the weekend! Over and out

Thursday, 5 June 2008

back to 'normal' just in time

Thursday 5th June

First, something nice I want to share seeing as I’ve been so grouchy lately. A brilliant way to improve your day is to see and hear this site - it's so emotive and moving, it's almost mesmerising. The video is below. Gives you a great feeling of peace, at the same time it can make you almost tearful; the prose is excellent. The photos fantastic. A wonderful imaginary world where everything gets on and all is cool.

see here: ashes and snow [this link will take you to the web site]

I would love to play that music and prose at the chemo place - I am sure everyone would feel a lot better. And if they didn’t feel better, they’d at least feel calmer without a shadow of a doubt. I might have to somehow convince Andrew to buy me the book - after all, it is our wedding anniversary tomorrow....hmmm. I suppose I could buy it for him? Sneaky thought...

I am finally back to ‘normal’ just in time for Tuesdays chemo. Yesterday I felt so energetic I amazed myself, but it’s quite worrying that this time I’ve only felt better in the last half of the very last week. After this one next week, there are two more. I am worried about the cumulative effects here. But at least then my hair can start growing again. This week my head has become pretty painful again, which last time signified that it was all falling out, so perhaps the remnants will disappear after this next chemo - and there I was thinking I might have a head start [ho ho].

If I say 'at least there’ll only be two more', it’s sort of idiotic in a way, as I know full well that it doesn’t just end there. Things don’t magically get back to normal straight away. Although I think that’s what a lot of people assume; "Ah, good, once the last one’s done, that’s it eh?". Er - WRONG. You win a rubber chicken...

But I’ll deal with that when it arrives; compartmentalising again. The nearer I get to the end of the chemo, the more I think about the fact that the cancer could come back [you’d expect the opposite wouldn’t you?] – my emotions are a seesaw, which isn’t good for interpersonal relationships – my poor friends – if they don’t ask me about it I think they’re not taking it seriously. If they do ask me, I tell them 'I’m fine' which is rubbish – so they can’t win either way. Remarks that are meant to be helpful and encouraging can set me off something horrible – and it’s not their fault at all. Good job my friends are understanding. Don’t worry chaps – eventually this’ll all blow over and I will probably look back and cringe...but at the moment there’s nothing I can do.

And to conquer this 'bad mood' that arrived on the weekend, I have initiated yet another 'control' mechanism. Can’t think why I forgot how much this helps me. Having gained 9 pounds [that’s 4 kilograms in the more civilised parts of the world] I am now on a healthy eating drive! No more crisps, chocolate and other stuff. Comfort food - love it – and it loves me too, as it never 'leaves the building' but remains on my derriere.

Having read that the menopause can cause weight gain, I decided to get a grip on this before it’s too late – the longer I ignore it and whine about it [I am constantly whinging about how ugly I feel – I am the Queen of Whinging People at the moment], the harder it’ll be to lose it. I have never understood how it is that virtually overnight one can gain weight, whereas it takes forever to lose it again? I swear I just have to LOOK at a pizza and my butt gets bigger. And being bald, scarred, tired, feeling ill, PLUS feeling like a Fat Bastard [oops forgot the hot flashes, my my] – well, at least the weight gain I CAN and will deal with.

So our fridge is looking a tad tedious at the moment. Full of horrible green and nutritious things. But I feel purposeful again, which is handy. Plus it’s EVER so healthy...

ashes and snow - feather to fire

a wonderfully peaceful series of images - hope you enjoy it...I do!

emotional uproar

Tuesday 03rd June

I did wonder the other day if one ought to concentrate on just one subject on ones blog. For example – I am blathering on about ovarian cancer, so should my blog be ONLY about that? Well, I am not sure if we need to be purists in the blog world – so I just put whatever affects me 'because' of the cancer as well. Seems logical, if tedious. And anyway, you needn't read this unless you wish to, so who am I to bother about it?

Today I am totally unimpressed. Usually I am sort of half heartedly disgusted with the way some people behave and can ignore it, but today I am totally appalled. Sense of humour failure...ranting and raging. Good way to burn calories!

Strike One: Friday; I rang up Saga travel insurance to tell them about the fiasco that is my life at present, as I need insurance to travel for work. The man I spoke to was a complete pig. Really. If he had been over a desk from me he would now be in intensive care – where IS Saga anyway?? I’d love to go there and bash him. Saga’s underwriters decided that I have 'exceeded their limit' [I have? This is the only thing I've ever had wrong with me - how rude of me to get cancer eh?] – so they have booted me off the policy and will send a refund. Bless them. To death. Hello Swearing humiliating! Must let Force know what happened, as Saga are on the list for cancer patients to call.

All they had to do was tell me they wouldn’t cover me for anything cancer related – no problem. Logical. But it appears that if you have have/had cancer, if the baggage handlers lose your luggage, it’s your fault. If you’re caught in a traffic jam and miss your plane, that’s also down to the cancer. Interesting.

Strike Two: Saturday; the other thing that did my head in was the lead up to the weekends 'Stoke Promotion' BBQ. I have been promising to do a BBQ for the Boys of ’72 - last year every time I tried to do it I had to travel to Portugal. You sort of want to do everything immediately once this kind of thing happens to you, and a BBQ would be something special that everyone could enjoy. Unfortunately, one of the group decided that this was an awful idea but instead of having the guts to say his piece [or tell me beforehand], he sent a half literate poison letter to everyone [except us] the day before, telling them they were 'fired' as friends, as he had wanted a 'macho' celebratory booze up. Hmm – allergic to women then? So of course I felt awful.

Obviously this was a topic of conversation at the BBQ – well planned, very spiteful. So something I made a huge effort for was a little bit spoilt by a person who is obviously 'ver'’ spoilt. Pretty upsetting. Other than that it was a lovely afternoon, as these people have been so supportive about the cancer, and they’re all very laid back about talking about it if they want to know something. Pretty relaxing in that respect – plus very nice to have the girls there too. But shattering that’s for sure! No more entertaining for the duration I’m afraid!

Strike Three: I noticed that my eyelashes and eyebrows are falling out. Oh what fun to resemble a boiled egg. And please...don’t say 'don’t worry they will grow back' – shave off your hair, your eyebrows and your eyelashes. Then add a few weeks of sleepless nights and the menopause etc blah de blah – it will be a right old eye opener. You would be amazed by the things that having no hair does to your confidence. [and your temper, as if you haven’t noticed...]. Not to mention no mascara? Eek! That’s the sunglasses ensconced on the face for the duration! Thank God for Prada.

So it was one small thing upon another and I finally lost it. Andrew arrived home to a jibbering wreck – it’s hard for me to put this here, as I am usually so positive – but all my positivity went out the window with these silly, silly things. Everything just jumps out of all proportion. I ended up going to bed, as I couldn’t find a way to vent my anger or stop being upset. I was beside myself – I told Andrew that I would quite happily eat all the pain killers have and all the sleeping tablets I have all at once, if only to get away from all this bullshit. Just to sleep for a long time - get some rest and wake up normal again in a few months. Seems stupid now, as these things aren’t important really, but small things become HUGE and bring things into focus that you’re trying REALLY hard not to think about. That’s the trouble with chemo - your emotions are dementedly up and down. I think I should be on tranquillisers, for everyone else’s safety.

But saying that, today I am feeling positive again - amazing how quickly my moods change – a shame for people who know me – must be hard to get their heads around this emotional anarchy that is cancer/surgery/chemo/menopause/chaos of everyday living...I know how hard it is, as I have to put up with myself every minute of every day...but every day is better than the day before as I am almost 4/6th of the way there – so why don’t I feel 'happy' right now?

I’ll tell you why. Because every day at the moment I am wondering if the cancer will come back – every day I am wondering if I will survive. Every day I am wondering if I will see my friends children grow up – will I have the time to do everything I want to do? Life is so short anyway, with this additional threat it seems like I need to grab at every small opportunity.

It would be a lot easier without all these additional niggles that’s for sure. Wonder why you can’t have chemo whilst in cryogenic suspension? That would be great – wake up and it’s all done and dusted...