Ow! This is getting old fast – the bruising on my tummy is coming OUT with a vengeance.

Yesterday I removed the itchy dressings; that made me feel a bit ill. Ugh. The dressings caused some kind of allergic reaction which is normal for me. My skin doesn't like hospital sticky things, no matter where they put them.

The stitches are poking out of the wounds! The one in my navel is the worst one – looks as if it has one vertical cut, then two horizontal ones. Or maybe the horizontal ones are the stitches? Who knows - all I know is it hurts like a bugger! I've stopped taking painkillers, as it's not that bad, but a bruise is a bruise, and I feel like I was kicked by a buffalo. Plus I am a wimp. I keep wondering what it must look like inside? Ugh.

The middle one is where they stabbed in the air thing – it's rather unnerving to read that they can't see ANYTHING until they have actually put these great big metal things IN. Hence the risk of perforated organs. Hmm…what fun.

As you can no doubt see, my tummy looks worse now than it did when I came home. And actually it feels worse too. But no doubt this time next week it'll be back to normal. Hooray. Can't wait, as I can't do circuit training or anything else much for that matter. And I've already cleaned, dusted and washed just about everything. Such excitement…I say! And actually, I am really looking forward to having no pain – hard to imagine, after having the adhesions for two years.

Today's colourful belly

still thinking

today's been a bit better –it's odd, before the laparoscopy I didn't really think about the after effects other than the obvious ones; did I have a recurrence, didn't I have a recurrence, and the little Brain Rats were going: 'you do, you do!! snigger snigger'. So I was waking up every day and night for weeks and weeks, thinking I probably had a recurrence. But going through the days absolutely positive that I didn't have one. This is the difference between my conscious and my sub-conscious minds. The conscious mind seems to have a far better grasp on How To Stay Sane. Whereas the sub-conscious seems to have no bloody idea and just tries to drive you mad as a hatter.

So I hadn't considered how long I would take to get back to normal [that seems so be a repeating refrain with all cancery types – when am I going to Get Back to Normal??]. Hmm – seems those days are long gone and I now have a new normality. But never mind that – what I mean is, I didn't think about this as being surgery. So I didn't consider the 'getting better' bit much.

Yesterday I finally had a chat with Gail. She said I can take off the dressings as of now, if I want to. Tomorrow they are coming off, as they are starting to ITCH. And she said I need to take it easy for three weeks. THREE WEEKS??  One week is gone almost, so just two left. Not so bad. She pointed out that even though I seem to have 'just' three little holes in me, which will soon heal up, Renninson had a field day rummaging about in there, cutting and prodding things. So there will be bleeding and bruising. Inside. Ugh. So I refuse to carry the Hoover up the  stairs. :o)

Early last night was horrendous – the post surgery wind kicked in and I felt like I was merely two arms, two legs and a head hanging off a torso with a mind of it's own. Shoulder pain, neck pain and a very sore tummy. And feeling quite delirious. So I went to bed full of painkillers for MORE sleep!

Today I only took the painkillers in the morning and I've been ok so far – the bruising is coming out and  still have a bloated painful tummy, but it's a lot less painful that's for sure. Did some housework and pottered about. Another early night for me!

Oh, and I DO wish  could get used to / believe this fabulous news!! It's so surreal – it seems easy to accept bad news, so why can't I accept the good news the same way?  I think the biopsy report will do it. Black and white and all that. But I don't understand why it still hasn't sunk in. Think I'm a bit thick??

update part 02

So you'll remember me nattering on about the constant pain in my left side. Which we thought was a 'backed up' bowel. Well, as Renninson was going in there anyway, he said he'd have a look to see if he could sort that out. The main worry was that due to existing scar tissue, he wouldn't be able to see anything and we might have to resort to open surgery again. Noooo!

But luckily, he [report wording] "had a good view of the pelvis". Yay – I am so glad. Being filled up with air for no good reason would have been a tad peevish. It turned out to be an adhesion causing a 'loaded left colon, adherent across the anterior pelvis and to the right pelvic side wall'.

Here's a picture of the bowel being pushed against the wall of my pelvis by a revolting looking adhesion. Looks rather throttled – Renninson said it was causing what amounts to a kink in my bowel, plus it was stuck to the pelvic wall.

Here it is after the adhesion has been cut away. No wonder it hurt so much.

The rest of the report went so: "Normal peritoneum across rest of abdomen" [this is a GOOD thing!]. And this is the interesting bit: "Small bowel loop adherent to RIGHT pelvic side wall at the site of the Abnormality on the Scan. No peritoneal abnormality below adhesions." So the Abnormality was also caused by an adhesion! Ha!! And double ha!

This is that bit. The Suspicious Object.

So he divided all the adhesions, mobilised the bowel and freed the small loop from the right wall of my pelvis. Then he took a peritoneal biopsy from the site of the Abnormality. Which we shall hear about in a few weeks when I have my oncologists appointment.

Apparently I have dissolvable stitches and GLUE holding me together at the moment. Hmm. No-one actually told me when I can take the dressings off.

Interestingly, as I was leaving I was told by the ward nurse that I could have a shower as the dressings are waterproof. They don't look very waterproof to me, and as that same nurse told me I would bleed heavily for two weeks due to the blue dye they inserted into my uterus…well, I don't actually have much faith in her at all. I don't HAVE a uterus!

And good job I knew about the blue dye BEFORE I went in [thanks www] or I would have had a heart attack when I went to the toilet after the surgery. So today I managed a bath without getting my dressings wet, as I was covered in iodine and blood. Yuck! Too delirious to risk it last night, and it took ages as I was worried about falling unconscious in the water - but I feel much better now.

This same nurse was a right grump, and as I had been there longer than her, was more tired than her, had just had surgery and wanted some sensible answers, she's quite lucky I didn't batter her with a bedpan.

But at the end of the day, what a brilliant result. Once the biopsy confirms that it isn't cancer at all, then we will seriously celebrate.

I don't think I've ever been so stressed as the last few weeks. So glad THAT'S over. Now just to heal up and oh, Friday I have a mammogram! Hahaha – never ends…

update

hmm – I haven't felt like blogging for a bit. And even if I had, the Christmas season has been a busy one, keeping me away from the pc – good. Actually I hate/love my pc – it keeps me in touch with everyone, but it also keeps a lot of tedious people in touch with me. Well, not for much longer – being unemployed means I can delete a lot of idiots!!

I have been and I still am, totally exhausted. Not a good thing. In fact, a scary thing, as when I asked Dr Hong [the Onc] about recurrence a long time ago [last year? is that a long time? yes. for me], she said it would likely be the same symptoms I had initially…tiredness, swollen tummy. And I am TIRED. So tired I can almost scream.So tired I can almost cry. [And I have cried – I hate crying. It sucks.] But it doesn't mean sleepy. It means burning eyes, an exhausted body, leaden limbs…the left side of my face where it is affected by the synkinesis from the Bells palsy feels dreadful – I sometimes struggle to speak clearly. And I hate that too. But you know what? I used to think that was the worst of my problems. I used to dream that I would get my face 'fixed' and that afterward, everything would be ok. Oh, if I had only known what was to come…but the mind is as active as ever [hence the blog post!]

So, I am pissed off. I don't need this. I have already fought this battle. I am not …I don't know. I am not what? Prepared to fight it again?? Of course I have to. But I don't want to. Renninson called me and we had a meeting the next day, where he explained that he had found 'something' on the scan.

It's a 50/50 chance between cancer [recurrence] and scar tissue. I am all for scar tissue [doh]. He said the 'thickening' is where he had to 'tear the tumour' away from stuff it had grown onto. Ugh. Tear??

I went to Stoke this weekend. To see my 85 year old father-in-law. I went to my Mum and Dad's last week to see them. Both visits were so nice. I am very lucky. I have family who want to help me. But it's hard to allow. I can't help feeling that I am spreading a bloody plague of misery here. I don't want to do that. The thought makes me furious. Typing it makes me furious. I am pretty furious altogether this evening. So. Bear with me. Or stop reading now. I am in bitching mode. You have been warned.

Christmas was fun – amazingly enough. We got back from a 5 hour drive [which should have taken 3 hours - uff] to Stoke, and the 'Letter' was there. My MRI appointment for next Wednesday. The 6th January. God, it made me feel sick, but at the same time, it was the best letter to get.

Right now I have my granddaughter to stay – poor little thing has an middle ear infection – well, it's keeping me occupied with her instead of me, so maybe it's a gift [but it doesn't feel like one when you have a 5 year old crying from ear ache at 3.00 in the morning!]. When I am at the pc, she is here with her arms around my neck. When we do things, she is always around me. It's amazing – I have this beautiful child in my life, merely by luck.

I am hoping for more of that kind of luck!

yay my scan appointment is here!

** image is copyright of Disney

And in the meantime, my CT scan appointment has arrived already. That's what's so amazing about the Exeter RD&E – they don't mess about when you have had cancer. They don't make you wait very long for anything, and that is so great, as waiting around for things tends to cause nightmares – even 'day mares' [is there such a thing?] – thinking horrible things that aren't real while you are awake. I think there is such a thing, as I have them. Hoovering the carpet, I am wondering if the cancer has come back on my bowel. Bah.

So the scan is in December – they sent me a little bottle of stuff I have to take, it resembles the 'drink me'  bottle Alice had. An innocuous brown bottle of diminutive stature. But I have been assured by The Girls that it tastes vile. Drinking iodine. Eww. I usually spray it on cuts! Hey ho, I don't care – it apparently makes the intestines and bowel more visible to the scanner. Can't be bad.  Roll on the scan! I still have the pain in my side, so it will be good to see that it's a 'nothing'. I am going to ask to see the actual scan too – that'll be entertaining – seeing your insides in slices? Gotta be good!

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.

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.

travels in reverse – what a palaver!

so. Coming home again. So chuckalicious. NOT!!

aaargh! I can truly say that I DETEST travelling...whatever happened to the days when one looked forward to flying somewhere because the actual FLIGHT was enjoyable? You could walk around. See the cockpit. Meet the pilot. The air hostesses enjoyed their work. I remember those flights with my parents. No more. Flying sucks now, and that's that.

So, to the trip home. As per usual, we were delayed out of Porto [apparently there are some air restrictions over France that hold up Swissair? riiight…]. Whatever – we left 55 minutes late. Which adds about an hour and a half to my already long drive home, simply by virtue of the fact that EVERYTHING becomes 55+ minutes later. The plane. The Luggage [how I WISH my luggage actually did bite/eat people!], the transfer etc etc. Pah.

I really wanted to hit someone. I had a massive panic attack, as my 'pain in the side', which is usually pretty dull, had decided to become pretty hilarious. As in 'whoo hoo, here I am and spreading!' My gut felt like someone had kicked and perhaps stabbed me. This was not nice. Nor funny. Nor conducive to patience in the face of delay. I just desperately wanted to get home in case my stomach was going to try to kill me. Rather it did that in Exeter thanks [well, not at all actually, but if it MUST!]. At least I'd be near my hospital! I had horrible visions of recurrence. I cried my eyes out at it's worst on Thursday night. Just needed to be home.

Eventually I arrived at Heathrow. Hoorah. The Land of Miserable Bastards. I don't know what it is about the staff in UK airports, but they all need a joint or a good kick up the arse. They are SO rude and SO miserable – it's almost possible to pity them. But I didn't. I wanted to run over them all with a large tractor. Twice.

I waited for The Luggage. Eventually It arrived. Raced to the Avis bus stop with It – astoundingly efficient! We were at the Avis office within minutes! Got my car [a fancy Peugeot – better for not falling off the side of the road every time there's a breeze…] It took me all of 5 minutes to work out how everything worked [you know, lights, indicators blah] and I was off. But it was already 8.15. I was looking at 11.45 arrival home. Not TOO bad. Ha!! If I'd only known. Oh, and they did offer me GSM? er…a talking car? no thanks…

Oh ho ho ho. Say that in an axe murderer Santa voice!! I had made reasonably good time – considering that the M3 is a great big 50mph zone due to some digging. Digging for what we shall never know. Gold?? Bollards? I swear that in the UK bollards have replaced cats eyes…we can't SEE where we are going. Unless there a a gazillion bollards…

Nonetheless. Delay. Bloody cameras that take a pic of you every 2 miles for an average speed check. So, no normal travel speed of about 80 mph. for a LONG time. THEN – the best! I got to the 'almost at Exeter' turn off, and what should I see? A big fat 'ROAD CLOSED' sign. Lots of idiotic men dressed in shiny reflective pants doing bugger all, apart from blocking me. And smoking.  Oh thank you very much. I followed the one and only 'redirected traffic' sign.  Onto the A30. This road is only used by farmers and wild animals! Buffalo. Elephants. Wild boar.

Over hills and dales. Through forests and tundra. Up and down hills. Not another soul to be seen. I had visions of werewolves, so didn't dare stop to call Aj in case I was attacked, bitten and turned! Miles and miles and miles of what [in the daytime] must be lovely scenery – but at midnight? er – NO!! Anyway, after avoiding many foxes, deer and deranged badgers [what is up with badgers? they don't understand roads or what? fools] I eventually arrived at the 'normal' route – no thanks to the roads department, who assume that one will just 'get there'.

Well, I got there. Eventually. Because I am a bloody genius. But a few signs would have been nice! So instead of arriving home at 10.00, I got in at 1.00. Aj had to meet me at the Avis drop off, as it was after hours, and I had to have a big fight with a diesel pump on the way. Uff.Got to bed at 2.00.

And the gas man is coming in the morning between 8.00 an 1.00. What's the bet he will be early??

pain in the everything...and no Marmite!?

Friday 30th May


OMG! Woke up at 5.15 on Wednesday morning and I felt so energetic I had to leap [well, I say leap – a sort of staggering bound would be closer to the mark] out of bed and rush downstairs [careful now Tottering Thomas...] and start work. It was such a relief to wake up with hardly ANY pain in my joints! Yippee! This is all thanks to the fact that Andrew had the brainwave of simply taking Paracetamol – good job someone in this house has some sense. Either that or it finally left by itself – I shall know next time, because if it happens again, as I shall be straight to the painkillers. Then we’ll know if they worked or not – they definitely did take the edge off.

So the only thing to deal with now is the fatigue and the nausea. Bah – still taking the anti-nausea pills occasionally, but it’s not too bad. The back of my left hand is still painful, but apparently this is normal for the site of the cannula. When you have chemo the nurse wears gloves and an apron to bring it over to you - very Star Wars. They are very careful to avoid any direct contact with the drugs because they’re harmful if they get ON your skin – so I suppose it’s logical to expect that the site where the drugs go INTO your skin is going to be a bit battered. I am always glaring at the cannula to see if anything is creeping out – I have these hideous images of the stuff munching it’s way through the back of my hand...gah

Isn’t it amazing, we can invent nuclear bombs and thousands of hideous ways to hurt and maim people, but we haven’t invented a way of getting particular types of chemo into the human body that doesn’t involve a stabbing session. I’ve always been quite awed by diabetics, who have to inject themselves every single day – although I suppose at least the needle isn’t stuck into them for 8 hours at a time. And it’s not a poisonous substance. Even so. Pretty gruesome.

Today, not feeling so lively; had some super postcards from friends on their holidays etc. which made me remember how desperate I am for a holiday that doesn’t involve anything to do with computers, rain [which we have constantly at the moment] or chemo. This year is very long and I can’t wait for a bit of space where I can really relax. Seems strange to go all this time without a break when it’s a time when I most need one. What’s that all about then? Life is very odd.

I think the common perception of chemo [and this is what I thought before I had it] seems to be that ‘ok, your hair falls out and you get tired and sick, but not to worry, as your hair grows back and you’ll be fine’ [which is true], but outside of that, unless you actually go through it, it’s impossible to comprehend how gruelling it actually is. I was startled yesterday to realise that I am having the next session in just ten days!

Every single day is another mental, physical and emotional battle to get through, and I am constantly worrying. As each session appears to have a different side effect, I am concerned about being able to manage the resultant effects of the next three. And when you first see the oncologist, nobody actually mentions how much pain you may be in, and how exhausting that is in itself. When someone tells you you will be tired, you just DO NOT get it. At all. But you soon learn! I think a whack with a cricket bat to the knee or elbow might be comparable to the pain. Try it...ow!

How do people manage who are in constant pain? Perhaps they do and perhaps they don’t, but one things certain, it is knackering! When you open your eyes in the morning, the first thing you do is a 'body check' to see which bits are going to be nattering at you today – or not, as the case may be. So, I am very happy today that everything checked out as 'in good working order' apart from my hand, but that’s a minor thing compared to the last week or so. What a relief.

Bad news today - in fact, a disaster - we are running out of Marmite!! OMG! How is this possible?? See what I mean about chemo brain? No Marmite? It’s like saying no water! Shriek!

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

Tuesday 8th April

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

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

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

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

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

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

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

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

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

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

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

Righto! Back to the wine and water!