Thursday, 31 July 2008

what happens on the last one...cont.

Thursday 31st July

Up until today, the usual stuff, more exhausted than normal, but hey, who cares? Next week I will be on the up and up! Also more nauseous than usual, but I am now a Drinker of Tea. Both Ginger tea and Peppermint tea help, so that’s another thing down. Horrible horrible pain in my hands, which for a few days was very worrying, and made it very difficult to use the keyboard. At one point I was using a pen to press each key one by one...a bird’s eye view of that would have been very amusing. But it’s getting less too – and it’s the LAST time I have to feel as if I have had them run over by a combine harvester. Having a brilliant time apart from that, as I know I am almost at the end of this part of the proceedings.

Also, good friends arrived – one from South Africa whom I haven’t seen for about 19 years [shriek! That is SO bad], but it was as if we saw each other yesterday. Amazing, and such a lovely thing to happen right now. Had a great lunch together, and as always her ready laugh was a delight – I’d forgotten how cheery Ferra is. And of course my Clara friend from Portugal is here right now! We now have another two bottles of Planalto in the wine rack! Donated by the friends who couldn’t come - thanks thanks thanks! It could have been a packet of potato crisps, the thought is so kind. Between Mum and Dad and my friends in Portugal...well, I might open a wine bar? No. Then I’d have to share. Not likely!!

Constant rain isn't helping with the horrible joint pain, and I am now obsessed with going on a holiday - all my friends are off to France and other warm places for August, and I am stuck here until the end of September. Buy at least it’s something to look forward to. A week of NO computer, NO work, NO hassle...bliss. We were working it out and the only time I have had 'off' this year has been for the surgery and the chemo - a pretty pathetic way to run my existence I think. Note to self: get a life.

Keeping these short, as my hands are not impressed and my eyes feel like they are filled with sand - too tired to move... One more day of this DONE! yay!

Tuesday, 22 July 2008

what happens on the last one...

Tuesday 22nd July

Bad things:
Already have nausea and chemo mouth – usually this is the second day – eish!! That was quick

Exhausted already - usually I am pretty energetic and can work when I get back the first day. Not today.

Hot flashes already – yippee. Can’t wait to try to sleep tonight...not. I guarantee it’ll be an hourly wake up...we will see

Good things:
Every thing that happens now, will be the last time it happens!

good grief...

Tuesday 22nd July

What a day!! After yesterday, I should’ve known. Bad start to the week. Same as last time, the chemo was delayed - seems we have new people working in the pharmacy, and actually they don’t know what they are doing. I was there today from 9.00am to 6.00pm - I drove up in the morning expecting to be there until about 4.15pm and able to drive home. Expecting to be able to come home and do some work today - well, not a scenario. Andrew had to come up on the bike and load it into the car and drive me back. I would deffo have squashed someone...

I am not sure what happens in the pharmacy, and as I have said before, better for them to take longer and get it right. BUT, they don’t have to sit around for 9 hours, unable to do anything except behave like a drongo...not too impressed with them right now.

Had an appointment to see Dr Hong at 10.15 - ha!! No-one knew I was there so I actually saw her at 10.45. More delay. Freezing cold by this point, as the area where you wait is large and open – and COLD! Apparently today it was hot and sunny everywhere apart from here – quite good for us, as the windows don’t open more than 3 inches [Government rules. Wonder what happens if one of THEM had to be in this boiling box all day??]

Dr Hong said that now I need to ‘get on with my life’. Ok. No worries, I will try. The CA-125 was up this time, last time it was 7, this time it was 9 - made me feel sick, but she said that this is fine as 0 – 35 is the norm [she was quite insistent about this], so I am still low. And as it started at 1149, I am doing pretty well! So now to wait for the 3 month check. More details tomorrow.

I am going to try and do a day by day thing for this last one – apparently it’ll be the worst, so lets do it!

Monday, 21 July 2008

last but not least...

Monday 21st July

This morning was fun - went for the blood tests and I think the nurse was having a slightly bonkers day, as she accidentally knocked the pump off the needle - this was after struggling to find a vein in the first place, and it being pretty painful getting the needle in. So I now have a bruise the size of a Jaffa cake on my left arm, and can’t bend it properly. Then she had to get the rest of the blood out of the right arm - aaargh. So I came home and collapsed into tears in the kitchen, as I was suddenly totally exhausted and it seemed a bit much to be stabbed and drained, then have to do loads of work, as all I wanted to do was sleep! But, better to work, and I got it all done, so I have that sense of achievement. Also means I don’t have to worry about work tomorrow.

Tomorrow's the last chemo we hope! Bit scary, as I have gotten used to being 'looked after', and it seems frightening to think I have to wait three months before finding out if everything is ok [then another 3 months and so on and so forth...bwaaa] but also fantastic, because in four weeks time I will be able to start thinking about getting back to 'normal'. Hooray. At last; it seems to have taken an aeon to get to this point.

Three more weeks of revolting chemo side effects, then that’s it I hope – how odd. How nice!

Just to say thanks again to everyone for all the messages again today [and the book!] - and I am now off to have my last glass of Planalto for a week or two, as I know that after tomorrow the only wine I drink is strictly medicinal for a while - not wasting Planalto on that! As it tastes terrible no matter what, cheap red plonk does the job!

the Wombat...

the Day of the Wombat...!

Wednesday 13th July

so, today a million messages from friends for some reason [thanks everyone!!] - and the most hilarious thing – I got a Wombat in the post!! A big box arrived, and inside was a great big fluffy Wombat – and how cool is that?? Plus some photos for friends are totally mad - great or what?? I think it’s the sun in Australia - makes the brain a big confusion...they are all crazy...

The other mad person is my Mum, plus obviously my Dad [so that makes two more mad people - what am I like?? mad friends AND mad parents??], who conspired to send me more Planalto which will arrive next week! Well I never - cheers ! Now we will drink the rest of the existing bottles, in order not to be over stocked here...frightful thought!

I am mainly totally shattered at the moment - working at strange hours, and wondering how long it’ll take after the last cycle to get back to normal again. No, I will not be back to normal 3 weeks after the last chemo, this is a given, but I can hope right?

Well, this is really to say thanks to everyone [the madder the better] for all the good wishes for Tuesday - cheers amigos - I know that all these good thoughts and prayers do help! And of course I will have Clarinha here for almost a week afterwards - so good to look forward to seeing my friend, even though I don’t look forward to her actually seeing me...

Saturday, 12 July 2008

the right stuff!

Planalto means "plateau" in Portuguese. In English, a plateau is an upland or an area of stability. Some raised ground. Hopefully this is where I will be after the last chemo - finished with the uphill climb, on top of it all and remaining there for good. With a nice glass of this, obviously! Ta Ma and Pa!

Strange factoids, chuckalicious moments and MORE pressies!

Saturday 12th July

How weird - I just discovered that the Paclitaxel [the chemo that makes your hair fall out] is made from Yew bark. Well, there’s a tree that I never want in my garden thanks! The first chemotherapy drugs to be used on patients were based on a poisonous gas called nitrogen mustard. Nice.

Who discovers these things? Do they wake up one morning and think: "Aha! Perhaps I will just boil yonder tree, make someone breathe the result and see what happens..." – oops, I say! All your hair fell out??...sorry chaps!

Not that I am complaining mind you.

By the way peeps, just because someone is having chemotherapy doesn't mean they don't still want to at least ATTEMPT to lead a normal life - even if you can’t manage something, you still want to at least have the opportunity to TRY. Don't automatically assume someone is feeling too ill or tired to do something - ask them.

Today it appears my sense of humour is back, I think it might be to do with imagining my big Toughie Tooth brother wearing green elf boots and prancing about in the flower beds...An Elvish tattoo?? Whaahahaha. Yes, you just had to be there I’m afraid. Yesterday afternoon I had such a laughing attack I almost fell off my chair, and couldn’t work for half an hour - chuckalicious for sure. I reckon there's nothing AT ALL better than a good laugh. What made it even funnier was the fact that with hardly any eyelashes it's hard to see with all the laughing making them water...

This weeks excitement was yet another parcel arriving [I think the postman is getting much stronger this year from all the carrying – health benefits courtesy of my family & friends heh heh] - a cool lens filter affair for our camera, which I have been meaning to buy for ages, but my other brother [the sans elf boots one] decided to take matters into his own hands and sent me the whole system. Took me an hour to work out how to attach it to the camera! Fantastic - fun things to test out this weekend.

Maybe because it's the weekend and I can sleep as much as I like, maybe because I am back on the upward curve in the cycle [just in time to be bashed back down again – uff! stop thinking like that! see? two people in here...], maybe because I am actually looking a little more positively at the end of the chemo - today just seems a better day. I am having to FORCE myself to be positive now, but too bad - time to get a grip and start planning stuff I think. Although I say that now - 2 weeks time I’ll be wondering if I was insane whilst typing this, as I'll be back in zombie mode for a while. But at least it'll be the LAST while. I hope.

I think I am concerning myself too much with other people's expectations as well - it scares me that everyone will think I am 100% back to normal once the chemo's over, and that they may be disappointed. Then again, they may not. God, life is so full of confusions right now. Where are those days when the biggest worry was a spot on the chin or cellulite on the butt?!

Anyway, next week should be a bit better, then Tuesday 22nd July - the last 8 hour nuking session!! Ooo – dread? Excitement? Hmm. Needs reflection that's for sure. Then again - whatever I think doesn't matter, as it's finite as most things are, so I will just have to readjust to the next stage of this hideous trip. Plus I am seeing Dr Hong then - so all my panic-stricken questions will be answered, hopefully having a calming effect on the old brain...

Oh, and this weekend we can have Planalto!! Whoo hoo – cheers all!

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

Saturday 12th July

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

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

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

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

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

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

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

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

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

Wednesday, 2 July 2008

the Pink Frock from the Weekend Shop

dress from 'Chikara' rave and clubwear, made by Amari in Cornwall. Lovely and comfy!

the Clara bouquet - wow!

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

Wednesday 2nd July

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

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

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

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

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

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

Tuesday, 1 July 2008

the Shoes

the Hilarious Bling Shoes from Jacket!

second last one and interesting things about ones Notes

Tuesday 1st July

Today was the 5th of 6 chemo cycles. Arrived at 8.00am, and left at 3.30pm – this was due to some complication down in the lab, and they didn’t send the chemo up for hours, so we were all delayed. Poor nurses – so apologetic. But better late and right, than rushed and wrong.

Saw the doctor about the swelling hands/feet, weight gain, the insomnia [non working Temazepam] and the eye problem. He said not to worry about either the weight gain, as it’s the steroids, the swelling hands and feet as it’s water retention and normal for chemo and the heat is exacerbating it, take two of the Temazepam and that will probably do the trick to get one nights sleep [ee – imagine!] and he gave me some eye drops for my eyes. Right, so off we go.

Today I had to remove all my rings, but I have managed to get my wedding ring back on this evening. Probably because it’s cooler – that is, it’s POURING down again! Bah – but at least it was a good sunny day at Wimbledon for Mum and Aj.

A very interesting thing happened today. My notes were left open on my table, and as I am insatiably curious, I decided as they ARE actually my notes, I would have a read. Wow – fascinating. But half way through the nurse confiscated them, as apparently you are not allowed to read your OWN notes!! You have to ask permission and a doctor has to be present – I think that’s in case you go bonkers reading all the horrible stuff that’s in there. But by now you will know what I’m like – I want my notes – all of them! So I am going to ask Dr Hong for a copy.

I would be quite put out to have to have a doctor present while I read them, as A: it’s a total waste of the doctors time, and B: I have wanted ALL the information available all the way through, and I still do. It’s not like I am going to find out anything ne, just the proper details, which I don’t think will drive me to derangement. Nothing in my notes can change the result of everything that’s happened. As said the Camel: 'Humph!' . And I say, gimme my notes. They give a far clearer understanding of exactly what has happened – one of the interesting little factoids being that my CA-125 was already at around [from memory] 556 in January. Interesting...

Oh, bloods were really good this week! Amazing, I am sure it’s my lucky ‘Hideous Shoes’ that I wore. Ta Jacket!





[before the initial surgery]



[before the first session of chemo]



[before the 2nd session of chemo]



[before the 3rd session of chemo]



[they didn’t do the test]



[before this 5th session of chemo]

Anyway, arrived home in a taxi - £10.00! But better than trying to catch 2 buses and waiting around in town for hours. I am always a bit manic directly after the chemo, so I have been frenziedly getting up to speed on things, but I am now rapidly sinking into Sleepy Head Mode. Felt a tad nauseous after I took today’s steroid, so I now having a wee glass of some scrummy red wine whilst it still tastes good, and shall be trundling off to bed directly.

So, not a bad day, just to get through the next 3 weeks, then I am at the last one. And of course I have Mum and Dad’s Planalto to enjoy once the chemo mouth has gone back to wherever it comes from...whoo hoo!

cycling again and being bitten back

Sunday 29th June

Sunday evening I managed to cycle to the Quay and back! Excellent, as it’s about 2 miles there and 2 miles back. Way to go. AND this was after attacking the Clematis that has been trying to take over our garden – I was racing around on the roofs of the garages behind our house, hacking it back like a mad woman this morning – Andrew madly packing the off-cuts into a pallet cover for removal to the tip. So, an energetic morning all round. Great, as I at first thought I wouldn’t be able to do anything, because I could hear my heart – this is not normal. Early this morning my heart was racing and I felt quite sick – went to lie down for half an hour and it went away, but it was a bit distressing. It’s easy to ‘think’ that you’re not on chemo – and easy to pretend you’re normal. But it bites you back and reminds you very quickly.

This last week has been a bit of a pain in the proverbial, as I usually expect to be pretty normal in the 3rd week. NOT this time. I have been totally exhausted, and my legs/feet have been swelling up – something like water retention I think. My hands have been swelling as well, and I have now gained a stone in weight [yep – given up on the healthy eating, as I just can’t be bothered. Fight steroids? er – no. Enough battling going on ta]. Everyone assumes that when you have cancer you get really thin and ill looking – not so, it’s more likely that you will gain weight. Something to do with the steroids, plus the fact that all you feel like eating is stodge. Cancer is expensive! You have to buy new clothes as well as hair! At least my shoes still fit...

I am having blurred vision, and need to wear my sunglasses all the time – when I am working I am struggling but at least with the computer you can blow everything up to the size you need. The reason is that I have barely any eyelashes, nor eyebrows. This causes all sorts of complications, the smallest being that when you wash your face in the bath, you have to dry it immediately, the shower water just runs directly into your eyes – a bath you can keep a towel to hand - a shower it’s not so easy. Grr. Oh well, they apparently grow back first – good show!

And what else? Hmm – oh yes, the more I do things the better I feel – but I struggle to get myself into ‘doing things mode’ – it would be so nice to just sleep for hours, maybe days. But not a good idea, as one needs to get ones butt into gear - I always feel better once I’ve done something physical, but it is SO hard to get moving...

But only 6 more weeks...