I have aphasia

I have just put in all the things I put onto JustGiving for the last week. Obviously I am asking for a bit of ‘charrity’  heh heh

Two many things all at once, so hopefully you can see what I am on about! Tell people what actually happened to me … almost...

I have aphasia. Interesting. A few shrieks after having ovarian cancer - but amazingly that was easier to deal with. This has taken me nearly 4 years just to deal with the fact that I can’t read, can’t remember things - sometimes I can’t focus at all…but I can’t read YET [if I poke my eyes almost into a book it helps a bit] etc.

So it has taken a long time to get here – but I AM here. And I now want something please - I want to raise some funds for all the people from all walks of life who have developed aphasia. I am amazed about how many people there are that have aphasia. About 367,000 people in the UK. A LOT!

Aphasia is a communication 'disability' caused by damage to the language centres of the brain. It can affect understanding of language, speech, reading and writing. I had experienced a massive ‘subarachnoid brain haemorrhage’. Then a stroke 4 days later. That’s where I said ‘interesting’.

To be fair, it isn’t very interesting – but it stops me having a ‘normal’ conversation, sometimes a lot, sometimes a little. Some days I can’t read at all – other days I read a few pages. Yelling with delight! Some people have a harder time than I do – and we REALLY want to help one another. Mainly to have a bit of a chuckle!

Aphasia does not affect one's intelligence – it just stops you from communicating ‘normally’.

To me, this little challenge [my first one - so far!] is raising funds to help in the fight against not being able to speak - or have someone to sit near you just to make you feel better. This challenge is an opportunity for me to raise awareness and significant funds to help the fight against being alone or being afraid.

Aphasia can affect anyone at all ... so your money will be well spent.

Thanks for taking the time to visit my JustGiving page and to read all this.
Onward and upward!

grumpy and sleepy

I have been wondering these past few weeks if I am depressed. But I don't really know what depression is or how it feels. I am usually a pro-active, energetic and cheerful person – recently I am exhausted. And quite cross. And bored with things. And uninterested. This worries me.

This afternoon was a perfect example. I was working this morning. Lots to do. And I was enjoying it, as it's a lovely client who is open to suggestion. I was grafting away, when suddenly I just needed to rest. To sleep. This is not normal for me – usually I manage with a few hours sleep a night.

But this was overwhelming. I had to go to bed. I hate this! It reminds me of just before I was diagnosed. Even though I know it's not the same. It felt like my body weighed 100 ton. And my mind was a blank. I went to bed and slept for 4 hours! Not normal. I am worried.

The last few weeks I have been feeling strange – upset. The smallest thing makes me feel like crying - or I am just bumbling along, then I just start crying for no reason. This sucks. I need to get away from this and I don't know how. I don't know what to do. Or who to talk to. I hide it as much as possible.

I am in remission. I should be able to enjoy it – usually I do and I am ever so grateful. But the last few weeks, I feel as if 'Something Is Looming'…I feel like I am living on the edge. I am afraid of the Kenya cycle all of a sudden – the other girls seem so much fitter than I. How will I cope? Will I be able to do it? I don't HAVE 5 hours in every day to cycle for training. Or even two. Will I manage? Will the team help me?

Why am I so scared of life all of a sudden?

I want to ride my bicycle…

So, I have a brand new bicycle specially for training! My lovely pink Free Spirit bike is not quite up to the task, so I am trying to sell it. This is it:

I reckon £40 or £50 ono would be reasonable, as it’s in good nick, plus it has handle bar shift Shimano gears. And a great bell! ;) PM me if you know anyone interested in buying it. I need the money toward the new one.

Anyway, back to the cool new bike – it’s a Land Rover Maharari. I have always wanted a Landy – now I have one heh heh. To go with my Land Rover key ring, given to me years ago by some wit. Check it out:

Mean machine and even meaner saddle. Which I had to be measured for. Hmm -  it was a rather weird experience to say the least!!! Apparently I have an extremely narrow pelvis and it’s a “good job I never had kids” ? So glad the cycle shop experts are so knowledgeable…and disturbing! ;) So I now have a very narrow saddle. To match my pelvis. Which looks like a torture device. And likely IS. Hmm. This fundraising malarkey is getting a tad expensive. Boot sales for finding the cash - here I come.

AND…I had to buy shoes [breaking the bank, this darned fundraising is]. The shoes because my feet really hurt during spinning, and apparently this is because the soles of trainers are too ‘bendy’. The cycle shoes have a totally solid sole – very funny to walk in, but great on the bike. I tested them at spinning and they are great. So I now clomp about in them like Frankenstein…

Looking good – lots of BLACK things. Next acquisition is shorts – I ordered some from Chain Reaction Cycles. Pffft – useless. They said they are out of stock [their site shows them IN stock] and then they had the gall to tell me that the shorts are discontinued! LiveStrong cycle shorts do NOT get ‘discontinued’. NOT impressed. But they did refund my money in 3 days, so I am not complaining. Just peeved, because if the web site says ‘in stock’, they should be forced to supply the item. Grr. Back to Plan B which is ordering them from LiveStrong. Handily, Julie gave me money for  my birthday especially for buying cycle shorts, so I am not out of pocket there at least. And last, but not least, I need some Oakleys.

Reason being: they don’t fall off, no matter what; they have 100% UV protection [prevents sun damage to your eyes] and they are just cool.

Apart from all that, I am working from the crack of dawn until this time of night [must go to bed soon!] – not in touch with anyone [bad] and I am so tired of being TIRED that I have no words for it. I am utterly exhausted. So is the FH. WE desperately need a break. Roll on the week in Spain. I shall be prone the entire week. No joke. TIRED!!! And being this tired always makes me nervous….

One fab thing – my neighbour and friend, Claire, is going to train with me! Yay her – I am desperately in need of some support, as I am not particularly inspired right now, and none of the other W v C girls live near me. Yay for Claire :)

friday 13th

The last few weeks have been nonstop pressure. Work, fund raising, work - the same as everyone else I think. Except normal people don't run around fundraising like crazy types [usually] in between jobs.

I seem to be like a spinning top right now. I am completely lacking in coherence. So many different jobs mean having a lot of different 'heads' on [and that's the problem -  leads to chaos heh heh]…chalet bashing [job 1] is simply racing from one chalet to the next at top speed. Strip the beds [3 per chalet; one double, two singles] boom boom; clean 2 bathrooms [WHO invented the toilet?? kill 'em], 2 beds, lounge, kitchen diner, bam…pack up the laundry and haul it out to the golf cart [groan!], collect clean laundry, make up the beds…race to the next chalet. And so on and so forth x 4, 5 or 6 chalets per shift. The laundry bags weigh a ton, especially if all the towels are wet [aaargh!]. The Horrible Henry Hoover is like a Thing of Satan - I SERIOULSY hate that Hoover…grr. It can't turn corners and it's always smashing my feet to smithereens…beastly thing!! Just look at it!! WHO would invent a cleaning machine A: with wheels that can't turn over it's own cable [it falls on it's facetious face], and B: with a smiley face?? Only a man…smiley face…fft…it should have Evil Eyebrows. Anyway…

Then [job 2] there's the feelgoodecobeds number. That's mainly graphic design, but also happily includes a bit of actual furniture making - well, not making, but finishing. I was having a cool time last week waxing and polishing bedsteads. Not that it's not exhausting - it is, but in a good way. This week I have postcards to get printed and then I need to run them out to shops in the hope that someone will buy a bed or two. I get 15% of any bed sales I generate - woop! Bring it ON! I have noticed peeps going to feelgoodecobeds from my blog even! yay!!

Then there's gardening…[job 3, 4 and 5]. Julie and I do a couple of BIG [and I mean BIG] gardens together. We also have a little gardening job or two that we do independently. This morning both of us were in tears. TOO MANY THINGS! We are both run ragged. No time for the 'normal' stuff - housework, ironing; sunbathing?? We are both racing from pillar to post, just trying to pay bills. Once you've had cancer, you really NEED to try and chill your life out - stress is very bad for us. Ffft - so much for theory eh?

And then there's [job 4] which is a little number doing html emails for Fingle Glen hotel  - at a severely cut back rate [but there's a reason for that - next post!]. Nice work, as it's using my brains. And my experience. And I enjoy it. That's always a plus. Here's one. They loved it - yippee. Self esteem slightly elevated.

And today, the umpteenth refusal letter from another job app. Oh well. At least they had the decency to reply eh?

My hands are killing me from stripping beds….but at least I CAN strip them…for now.

Christmas done and dusted!

We have an odd tradition in our house. We have Christmas early every year. This is because the girls have chaotic lives and we usually escape to the Gambia. But not this year, sadly. Jen works for the police, so she works Christmas day. Vick has The Granddaughter, who needs to see her dad etc on Christmas day. So we have our own Day, early. It's rather nice, everyone arrives in a big jumble, and the house is instantly a complete chaos of bags, people, toys and noise. I love it. Six year olds seem to Take Over The Universe. Jen simply takes over the fireplace like a little cat. She will not be budged other than to race about the kitchen with Vicky doing dishes or making cups of tea for the masses.

First we have some Granddaughter presents. Granddaughter wakes us all up rather politely. We scramble for breakfast toast and coffee [the coffee is for me]. Everyone goes out in the cold for a walk and I beat the dinner into subservience and lay the table while they're gone. We have mini sparklers!

Then we have the Traditional Dinner; well, OUR traditional dinner. I think if I changed it now everyone would be horrified. An Hors d'œuvre of some description. This year we had won ton, last year, soup. The usual Roast duck stuffed with ginger and things, and roast pork [turkey is a bit naff], Delia style roast spuds, all the vegetables etc etc. I could do with another oven to be honest. Our little kitchen is literally bursting at the seams [and my hair standing on end!] by the time I am finished cooking the meal. Then dessert . Uff.

Then we have more presents [which now include the grown ups] and everyone collapses. This year was a little simpler than usual. I like to go over the top with presents – there's nothing nicer than choosing a gift and then wrapping it up extravagantly, just to see the expression on the face of the person who opens it. But we pared it right down to one gift each this year [apart from Granddaughter]. It didn't seem to make much difference – everyone seemed delighted and we had a lovely day. Well, the toilet broke and attacked Vick, but that's another story! Then everyone trooped off to their normal lives and we collapsed.

I had an exhaustion attack afterwards though – I was trying to remember if it happened last year, but I found I couldn't remember last year. That sucks. But they are few and far between now, so I can't complain. Well, just a little!

Here's Granddaughter with her Gruffalo plate…

Sunday Sunday…a Wellie day

the weather here is completely repulsive! I say this because this morning it was sunny and dry – perfect gardening weather, even though it's cold. But this evening we appear to have a Force 10 gale!! [+ rain!!] Whilst it was sunny I dug up a great big Phlox for my neighbour, George. I have three massive ones that I had from my Mum, as she doesn't like them, so we dug them all up out of her garden and relocated them in ours. I love them! They flower for ages, and if you deadhead them they flower again.

But George the Neighbour was concerned that I only had pink ones. He took it upon himself to split one of his red ones and bring me half. Then he bought me a purple one at the Sunday market. So the least I could do was dig up one of the pink ones and give it to him. And this morning was perfect for digging. After much sweeping of leaves mind you. In Wellingtons. The Wisteria is a plague in the Autumn – leaves everywhere, and not in a very organised fashion either – it takes weeks to drop all of them. The driveway was a nightmare, getting out of the car and wading through a metre deep of the beastly things. So lots of sweeping was in order. And I don't like sweeping – it does my stomach in. But probably it's good for me, so I do it anyway. Plus there's the danger of drowning in leaves if I don't!

Right now I am listening to the howling wind and pouring rain. We have the wood burner on the go, so the house is lovely and warm – sometimes cold  days can be wonderful. Once you are snuggled up on the sofa by the fire anyway!

Every time I do things in the garden now, I remember this time last year, looking out of my office window and wondering if I'd ever have the energy to dig things up again. The body is a wonderful thing – only one year ago now, I couldn't manage to open a jar top never mind lift and wield a garden fork. Now I am back to normal. Almost – I get exhausted more easily, but then again, I am a bit older right? Plus it takes ages to get over being blasted by chemo. And I have been battered half to death by cancer first, then chemo second.

So, I feel I am doing really well. I feel GOOD as James Brown said…Whoa! I feel nice, like sugar and spice!!

what WAS I thinking?

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

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

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

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

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

Jen.

Free House Cleaning for Women in Cancer Treatment

A clean home goes a long way towards transforming our spaces. For people experiencing cancer treatment, cleaning house can simply be too difficult, at a time when a healing environment is critically important. Thankfully there's a non-profit called Cleaning for a Reason...

Cleaning for a Reason is profiled in the current issue of the Angie's List magazine. Women who are currently in treatment for cancer are eligible for up to 4 free house cleaning sessions from a local cleaner. There are over 300 house cleaning businesses across the country that have enlisted to provide this service. For more information about how to qualify for this service, check out the Cleaning for a Reason website here.

And they are always looking to add more cleaning businesses to their ranks so if you hire a cleaning service, let them know about Cleaning for a Reason!

Image: Flickr member The Shopping Sherpa licensed under Creative Commons

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.

chemo effects linger on

Saturday 20th September

Ah chemo – 'the gift that keeps on giving'...since the last nuking session was over, I keep thinking I am fine. Because I do feel so much better. But then my poor battered body gets cross and reminds me that I am NOT fine, I AM still recovering.

Today was a classic example of this - first I was clipping the hedge this morning, full of beans, and I bumped my head on a branch - not the normal 'just bumped it' thing – the 'chemo style' bumped it thing - blood everywhere. So now, as well as looking rather butch due to my Grade 1 hair style, I have a nice scabby bit on my forehead! I ask you...spraying iodine on THAT was rather eye watering! ouch! Roll on the day when I am healing properly again. At least by this point I am not getting a big bruise there as well. People would think Aj is battering me! Scabs and scars everywhere at the moment.

So, Vicky, Grace and I went up to the town [today has been glorious! sunny and hot - perfect sandpit weather] and wandered around window shopping etc. We caught the bus up, had a sausage roll thingy sort of like a hotdog as we were starved, checked out the shoes and clothes which we couldn’t afford, met up with Jen and Martin, then had a fabulous pair of balloon butterfly wings made for Grace and afterward, wandered down the hill to the real McCoy vintage clothing shop – this used to be a doddle for me. But this time, by the time we reached the McCoy, I was shaking, having palpitations [is that the word for your heart beating really fast?] feeling faint, cold and generally panicking. Andrew was meeting us after work, and all I could think was "hurry up! I have a bad feeling about this!". Thankfully after a cup of coffee and a huge lump of coconut cake [and some of Grace’s carrot cake too], I started to get myself together. By now Aj had arrived [sigh of relief...] and I could relax knowing that if I did fall head first into a rail of clothing, he would rescue me. and also look after everyone else.

It is SO frustrating. The sudden attacks of total exhaustion, the other odd things that happen like unexpected and unexplained nausea, a stabbing pain in the groin, the horrid hot flashes, sudden tears and being upset about something that is actually quite nice...grr! Not that I am complaining about the chemo - that would be foolish as it probably and hopefully has saved my life by eradicating the tiniest bit of cancer that may have lingered after the radical surgery. BUT, when you are trying to get back to 'normal' it’s a right bugger to keep encountering these effects – the problem being that because I WISH they were gone, I THINK they are gone – but they’re not. Eventually they will be, I am just too impatient I think.

Just thought I’d let you know that 'being better after chemo' takes a much longer time than one might think.

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!