Sunday, 31 October 2010

2010 28tht October - Here Are Your Real Presents

                                                                                                                                                             So my birthday was 12 hours of solid fun, laughs, love and general good stuff in great company. Additional bonuses were cash, flowers and pretty cards.  I was lucky enough to get some lovely presents which were
all very well chosen by people who actually know me AND little sis produced 12 gorgeous vegan wheat free cupcakes.  I believe (having made sugar free, wheat free vegan cakes myself which is chuffing tricky) they taste much better than normal cakes, they're just not as sickly.  Obviously today was an eat what I like day but I didn't actually stray that far from it.

The postman delivered the expected cards including a very wearable solid silver bracelet from Aunty Susan (I still have one she bought me about 30 years ago).

Hayley delivered her father in law with a hedge trimmer and filled flasks with tea to keep him going and washed up yet again, having cleaned my floor the day before and cleaned some windows, while I opened my post.  And a "I love it, that's so me!" necklace made by a French artisan whose work she drools over when she's in Fougeres.

Hayley managed to park almost in a bus stop but legally and very close to town and we went for lunch in Prezzos (the nicest place to eat in Boston aesthetically).  It was a lovely sunny day and we opted for a window table and were both instantly reminded of our lunch out in Rennes sat in the sun back in June.  We ordered Prosecco, olives and dithered over the main courses.  As I was eating whatever I fancied, but with no appetite I considered chicken for the protein but went for crab cakes in marsala sauce.  Hayley had chicken and mushrooms with spinach but there's no way I'd have eaten all that!  The potatoes I had with my crab cakes were untouched (I was quite impressed I managed four small crab cakes!).  The wine started to make me feel ill (forgot about the opioid patch I had glued to my arm doh) and have no idea how much I drank but left a full glass - Hayley's was empty (odd that).

Onto the shops!  I don't really remember us ever going clothes shopping before ever, hanging around in town yes, actual spending money on anything but beer or cider, no.  I tried approximately 8 dresses on in Dorothy Perkins - including a perfectly fitting size 8 - which we all know is really a size 10 in that shop, but still, I wanted it!  Despite initial doubts I followed advice and went for the navy one with a jewel encrusted neckline (more bling) found some bracelets to go with it and also a large pendant watch just because I keep looking at it every time I go in the shop, it was my birthday and H said "buy it!".  So that took care of the cash from my parents - none of my own money spent so far! (I don't have any money except back pay from DLA which is making up the difference between £79.15 weekly sick pay and usual salary so this is VERY good).

H picked out a long, but not full length horizontal striped clingy dress for me to try on.  Now following the two ops to my abdomen I have odd shaped lumps and following 4 pregnancies with 5 babies they're made from a spare tyre that will never go.  But, I'm resembling the stick like figure I was when I was 17, I was with my oldest friend and actually, despite having to stop and rest like an old woman, I felt 17.  I also don't have any underwear that fits any more, well a couple of necessary items from BC (before cancer) days that managed to hide at the back of a drawer and luckily lycra makes a lot of it passable.  There was a display of Monsoon lingerie outside the changing rooms..........well, if you're trying on the world's clingiest dress, you need some decent structural support don't you?  THAT receipt was worthy of a 40th birthday and came out of money my mum gave me to go to Dublin with.  So again not needing to touch the DLA back pay.  Doing well!

A couple more shops and I managed to spend (having checked) just about all the money I've been given to spend on me - which in 40 years I have NEVER done before with money for my birthday.  I've paid off debts, paid a bill, bought some nice food instead of scrimping for me and the kids or put it towards Christmas presents.  Instead of feeling selfish, I felt justified.  I mean, I may never be this well on my birthday ever again - it's all about now.

There is a book I keep meaning to get hold of - must check Amazon - called Burnt Toast I think, about mothers who always put everyone else first, eat the leftovers but never a full meal, if toast is burnt they eat it rather than let anyone else.  Part of my long four years of trying to figure out what caused my particular cancer has included the theory that I hold stuff in, I try to please people.  I bottle things up then snap and pop at ridiculously irrelevant moments.  People remember the explosions and have no idea about the attempts to please or what's been bottled up.  Actually my biggest issue is I constantly feel like I'm failing at pleasing and dwell on that makes me feel worse and probably turned me into a self fulfilling prophecy.  Always my own worst critic.  If I'm in a foul mood, you can bet your life it's because I made a mistake at work that nobody else remembered 5 minutes afterwards.  Me, I'd stew on it for the whole day, if not longer and people would wonder what the hell was wrong with me.  What a stupid waste of negative emotion?  Does that sound like you?  If so I suggest you take as much money as you can afford and go out with your oldest/best friend and blow it on some gorgeous underwear and feel good about it.  No man is ever going to see me in it.  It's ridiculously expensive compared to basic stuff I could have bought more of but I DO NOT CARE.

40 years to work that one out and I really could have done with that genius stroke of insight 20 years ago before the little bastard started growing.

Just to liven this up a bit I took a photo with the labels still on:

Hayley did actually buy some clothes too - which I'm so pleased about because birthday or not, it's nicer if you're both having some retail therapy.  We both got some furry boot toppers that just make ordinary worker boots/boring last year's boots that bit more exciting for winter.  I bought a new purse to go with the so "me" new giant satchel/military bag my cousin Jane bought me which is SO me and I only sent her a card (knowing I couldn't pay my mortgage presents have sadly been deemed a luxury, but I have a plan to make up for it in a very small way soon enough). I accidentally bought a bracelet and necklace for Hayley too, because we were having too much fun and the French economy isn't doing any better than it is here for the self employed and she'd paid for flights, then had to pay for a ferry and fuel to get here in the end.  And because I love her and I wanted to.

I was knackered by the time she dropped me off - I had a couple of hours to get ready and really wanted a sleep but that would have made me feel worse.  Waiting in the utility were a huge bouquet, an I Love You helium balloon and an orchid stem in a vase from one of my BBs and my older sister - who finally read my email on Facebook answering her question of "How are you".

Becky arrived with the cakes (see above) which was such a totally unexpected surprise, I mean I know she is used to what I do and don't eat, but quite when she found the time to even look for someone to make them I'm not sure, between kids and their golf/football, full time job, part time hospital transport and a new husband.  She also arrived with substantial presents, some of which, more pretty but not like anything I already have, Accessorize jewellery - one of our favourites.  My hair is also courtesy of little sis - because she knew how important it was to look like me on my birthday for one last time.  Money doesn't solve a lot when you've got an incurable disease, but applied by the right people with the right intentions it can make a difference many times it's actual value.

We met Maurice and my two (still can't believe how amazing they're being now, last time was very hard for them both) children outside and found Lisa and Jamie inside.  Eventually we got served with a pitcher of beer and a couple of spritzers (one of which was mine - wow, two glasses of wine in one day).  Mike and Alex were running a bit late having to drive all the way from Sheffield.  You may remember St Michael from before - when he lived in Lincoln, still an hour away from me, he used to come over on chemo weeks and cook for me and the kids because I was having such a hard time touching anything from the fridge or holding a knife, walking, standing etc).  People are constantly disappointed that despite meeting through a dating site that we have only ever been incredibly good friends.  They don't get it.  Neither do we!  But there it is.

The compere obviously picked on our table, since we were right at the front.  He found out it was my birthday and said I looked radiant or something and said he'd come and see me later....later called me a snitch when poor Mike and Alex arrived 5 mins after he'd started because I said they weren't from here (by way of excusing their lateness of course).  I thought I'd keep my mouth shut about Hayley coming all the way from France.  Unfortunately he asked what I do for a living (really it was like it was my actual party) and I just went blank....and laughing said "I'm permanently sick" which sadly he pressed asking if it was serious and surely I'd get better and the whole table was laughing at his misfortune of pushing such a question with ME out of everyone else who was heckling.  (Hayley spoke to him afterwards and assured him I didn't mind at all - I suppose given I was laughing so much he wasn't sure what to think).

The first act - someone remind me of his name please? - also had a good look at me after establishing "where's the birthday girl", squinted and said "yeah you do look 40".  We liked him, I clocked the wedding ring - yes I really do forget my situation sometimes but never forget I've been single FOREVER.

The compere also accepted  a cake just before the interval.

Wayne Deakin

Second Act - Wayne Deakin an Australian, I think we liked him more - I'm never sure at these comedy gigs if the line up is in order of funniness, or if you just get into laughing and laugh more as the night wears on.  It's never booze with me since I'm rarely able to drink being on treatment of some sort most years.  Anyway I bought a signed DVD from him and had a photo and gave him a cake.

Third Act - Raymond & Mr Timpkins - genius alternative to stand up comedy using song lyrics and props.  They are on You Tube.

My children are both mature enough to know a lot more than they would admit to in front of me and I may have allowed them to listen to language and sip the odd drink they're not strictly old enough for.....but so what.  I'm 40 now not in 2 years time.

Every time I turned round everyone was laughing, out loud.  Proper LOLs all round.  I could pick out some laughs without having to look.  I had been most worried my daughter would get picked on, she sat at the back of her table, hiding with her hair falls (extensions in bright colours she makes herself, having sported a black and blue mohican at her age, I have no issues with her appearance at all, but the general public do) so I didn't get much chance to talk to her, sat next to her brother.  But she was laughing too.

Between them they bought me a Weird Fish bag and I suspect Karys and her boyfriend's nan made the card - which is also lovely made in black and dark red and sparkly jewels on it.  The thing about the bag is, separately with each of them, when I've been trying to find clothes to replace my oversized ones with my MacMillan grant, I looked at and stroked the bag.
I couldn't justify spending money meant for heating and clothes on a bag I don't need.  My current day bag - when dressed up is one Becky bought me for Christmas last year loaded with bathroom products, but I wanted a slouchy casual bag to go with jeans.  I do have a bit of a thing for bags - but the most I've ever spent is £40 so it's not a problem!  So again I lucked out with a lovely present that I really wanted.  Just having them there, enjoying themselves was more than enough, but knowing they cared enough to go without and spend their money on something I really wanted made me very proud. (I really like seahorses by the way).

It was late, a "school" night, although half term for the kids, so we didn't get chance to talk really, but I just wanted to laugh, have fun and be with people I cared about.  I couldn't ever get everyone in the same room, it's just not possible, but I needed to have some happy memories and also maybe that's how people can remember me when my hair is gone and I'm actually feeling ill (next Wednesday actually, but let's forget about Irene for now).  I bumped into a couple who were our very good friends when I was married, we lived in their house as much as our own but when we divorced and they moved we drifted apart.  It was good to see them, they said Karys really hasn't changed, she still has that innocent wide eyed look no matter how aggressively she dresses. Sarah, who also fell foul of dirty tricks by a mutual acquaintance like I did, and was my neighbour for a while was also there, shocked as I still am by my giant son's growth spurt since she saw him last.

When I got in, I was so happy and excited I couldn't sleep, I kept going over the pictures in my head, the photos I stupidly forgot to take.  Then I realised I'd not eaten since lunch so got up and finished off the family sized bag of salsa pretzels I'd scoffed most of the other day.  Too excited to sleep AFTER the event?  Is that usual?  Around 2am I think I fell asleep smiling.

Thursday, 28 October 2010

2010 28th October - Happy Birthday (your present is not having chemo today)

I'm doing OK today.  In fact I was doing OK from bang on 10am yesterday when my BFF arrived from France.  When I was there in June, she knew.  She knew I knew.  I knew what she knew.  We didn't talk about it.  I simply said "If I can just sort this pain out, I'll be OK".  It's not sorted of course, after realising I had my patch on for a mostly sofa confined week the pain was back last night despite new patch because - wait for it - I walked round Asda.  Seriously, oh and sat in the hospital for an hour or so (line flush).

A whole week to recover from just the first dose of Evil Irene?  Obviously my dose needs reviewing since I've only managed one week since May/June where I've not lost weight.  At some point the change will be enough to warrant a "formula" dose change.  I've spoken to the Sister on the chemo suite and we know the bolus drug I had on day 3 helped a lot (as did being taken off the 5FU) so perhaps will start on that and the Domperidone instead of Ondansetron (Bum Bandits and old followers will recognise these as Dom Perignon and Dance-a-thon).  I also left a message for community nurse to get me some more Fresubin shake style drinks (blackcurrant and lemon & lime) which, despite my dietary preferences seem to be the ones I can drink when nauseous.  I've tried a few over the last four years I can assure you!  I've even bought some tinned oily fish - since I did 2.5 months of serious de-tox prior to chemo I think adding 3 (the chemo days) days of fish a week.  My body desperately needs the protein and whilst I much prefer the taste, nutrition etc of other sources like green leaves and chick peas or quinoa etc a can of fish I can open, eat, collapse on sofa - much more likely to happen.  Even the thought of my own cooking in the freezer made me feel ill last week (and that is a BAD sign in itself).  I just need very very plain foods.  I'm thinking mashed potatoes with flakes of a small tin of tuna and salad cream (spuds & salad cream - only food that worked when I was hurling 4 times a day when pregnant with twins).

So, I kind of have next week's plan of how to deal with Irene.  Thing is, I don't think it's Irene making me sick, I think it's 5FPoo.  But we'll blame Irene.  Feel better about it already.  I also have a freezer draw half full of fresh fruit ice cubes to suck on.  Anything for fluids.

Bec's order of service is still on my mantel piece.  Whilst staying alive and competent as long as possible is for my children - they are my only real reason for never giving up, no matter how bad things got - I see their faces, or remember their faces and more than once they've saved me from throwing it all in over the last 18 years.  But Bec, who never stood a chance at even thinking of starting a family, who had less than 30 years of "normal" life, a wonderful husband, who gave up her free time to be a Samaritan and prison visitor (yes she really was THAT amazing), she's not here any more.  It's not fair.  It's not fair that I'm here and she's not.  So as I promised Ol (Mr Bec) at her memorial service that I would do whatever I can to stay alive, we'd promised to do this together when we got our lung and liver mets news at the same time.  When I couldn't drink water last week, I kept looking at her photo and taking another sip.  When I felt like ripping the tubes out of my arm I remembered how much more pain she was in.  When I realised a whole month had passed since we said goodbye I sent a message to Ol, because she can't.  She's my guru.  I don't know that she ever wanted that job, but she's got it.

I need to buy some nice photo frames today.  Mine seem to have got broken slowly over the years and now I just have none.  The photos of my babies are frameless and in drawers and that's awful.  I look at them on the PC and I do have a digital frame, but there's something about a framed picture that's just better.  I'll probably never get round to finishing decorating the living room (or any other room for that matter) but photos will help.

So today I had gluten free fruit bread toast (vegan marge) and tea (soy milk).  My hair is super red again and Hayley is coming, oh crap, in 30 minutes and I'm sat in my dressing gown.  We're off to lunch to eat ANYTHING.  Oh and last night I ate a huge (5 portions) amount of salsa pretzels - in a desperate bid to gain some weight back.  Maybe if I get on top of it I can reduce the amount of "dietary crap" I need to eat just to stay alive - because I KNOW that eating properly is my best ally in the long term, if only I can get over the sickness and anorexia.  (That's anorexia in a medical sense, a side effect of whatever the cancer is spewing out and the drugs I'm on etc etc).

Aunty Susan just rang, I'm ready (almost), H is late thankfully.  Three small kids she's hauled over the channel on her own just to make my birthday.  She's leaving them for hours at a time for me.

(P.S. to Carole, Tony and Carole's mum - thanks for keeping an eye on me, I was just too weak to even use a computer for a couple of days, other than my phone.  Tony I did read your awful news and I am so sorry.  Liver alone - much better situation and highly treatable even if it's inoperable a first that is subject to change, I've seen it myself in many friends.  Best of luck).

Wednesday, 20 October 2010

Comedy timing

No sooner did I hit the publish button than I had to run outside the front door - don't think there's any soup left to be digested :(

2010 - 19th October - Chemo Round 3 - Cycle 1

So here I am ready for chemo again (ready, but never really prepared).  I took my green drink, a travel mug of green tea and a green apple in a bag, together with clipboard, thread and beads.

Everyone loves my new hair.  Yeah.  So do I, oh well.

A few of the staff took an interest in me knotting bracelets, the tiny red cross lady (tabbard printed with "Volunteer Extraordinaire") has ordered 2 for her grand-daughters and the receptionist will be after one for her son's girlfriend once she's found out her favourite colour.  Ray asked if the clipboard is the only "machinery" I use - that, my hands and my brain.  After three years he still uses me as an example to patients who cannot get their neutraphil counts up enough to have chemo (after five deferrals the biggest boost I ever got, despite injecting myself with GCSF, was by going to Beating Bowel Cancer's comedy night at the Comedy Store).

Three years, and I am the one with the worst bloods - or just the one who managed to prove that laughter, in fact, can be the best medicine?

I was there about 3.5 hours, some fluids, 30 mins of Irinotecan, a tablet to prevent sickness, an injection to prevent stomach cramps and a 2 hour infusion of Folinic Acid, then connection to the 5FU pump.

Still rather painful going to the loo, as expected.

Didn't feel too bad leaving the hospital, mildly "ill" in that 5FU way.  The queasiness crept in slowly so I managed a small bowl of soup and half a banana with yoghurt.  Went to bed feeling sick with some extra pain in my left pelvis and feeling miserable.

Wednesday 20th October

Woke up, felt sick.  Went to the loo, felt pain.  After an hour I managed almost a whole slice of wheat free bread and marmite.  At lunch time I took another hour over an apple and 3/4 of a small bowl of soup again in the afternoon.  Drinking water makes me feel ill, moving to fetch it makes me feel ill.  But, as before, although I feel sick it never gets further than that.  Sis picked up my script of patches and the new lollies (lozenges on sticks = lollies) for breakthrough pain.  Tried one.  Felt weird and spacey for a few minutes but it did knock the edge of the pain.  They weren't as sickly as I expected they'd be at all.  It's a horrible situation - I don't have an appetite but I've been forcing myself to eat.  I feel sick - so I really don't want to eat, which makes me feel more sick.  I really hoped it wouldn't kick in so soon.

2010 - 18th October - Plumbing

Monday morning - hospital for 8am.

Straight to trolley 4 (yes trolley, not bed, they don't have beds in day surgeries or endoscopy wards) and admission process, BP, temp, calf size, noting PICC line and existing pain relief, allergy to morphine etc.

Surgeon came to see me - still struggle to understand what he's saying due to his appalling accent.  After some negotiating - ie me explaining YET again that I cannot keep having an invasive, high risk of infection, general anaesthetic procedure every 6 months for the rest of my life.  I will be on chemo for a minimum of 6 months - given my poor neutraphil experiences previously.  My condition will not improve over the years, it will decline (if the rest of my medical team are correct that is - and for the purposes of arguing for what I want, I take their line of thinking).  So instead of follow up in urine flow clinic in 3 months, after which time I'll already be experiencing difficulty weeing due to regrowth of scarring, he said 4 - 6 weeks.  AND agreed I can be taught to use a catheter to keep it open once or twice a week, thereby reducing the requirement for dangerous, costly anaesthetics and antibiotics which strip my digestive system of the healthy bacteria I'm desperately trying to preserve.

En route to theatre, we passed Mr A, the man who gave me the last three years of my life.  I said hello, not sure why, I just do that when I see someone I know!  He actually came to find me and held my hand in both his to see why I was in.  I can't believe that man.  The theatre admission nurse also recognised me and that my hair has changed - Clare admitted me in March for this procedure also.  She said to keep the colours, they really suit me - why is it so hard to tell people it won't be here for long, why is the thought of losing our hair such a tear jerker?  Is it because it's such an obvious submission to the drugs, an outward sign to the rest of the world that "yep, I'm sick, real sick"?

Anaesthetist was brilliant - if my kids needed an general, I'd want him to do it.  He did give me a mahoosive bruise in my right hand - choosing not to use the PICC line avoiding such bruising and pain, but to be fair most medics haven't got a clue what to do with them.  He asked what I'd do if he gave me £50K - pay off my mortgage.  £500K?  Spend the rest of my life travelling and doing everything I can't do now.  I mean I'd pay for someone to prepare me the best green drinks and vegan food and not worry that I can't face it and need to try something else because I can't afford to throw food away.  It was touch and go with the canula and the distraction was due to the beating he had to give the veins - after a sharp intake of breath he declared it "rescued".  In the ante room one of the students attempted to put a BP cuff on my PICC line - having just been told about it.  I looked at him and shook my head saying "You don't really want to be doing that on a PICC line do you?".  He looked sufficiently embarrassed and confused and was told - right arm then, observations please!

For the first time I didn't need the bear hugger and hair dryer and was out of recovery about an hour or so after I left the ward.  My drip finished and about half  a metre of the tube had my blood bleeding back into it.  Eventually they capped it off.  A nurse had to go downstairs to the cafe to get me suitable vegan food in the form of jacket and beans.  Apparently I had to eat, drink and wee before they'd let me leave so I ate about half of it.

When the butcher posing as a plumber did this to me in March, I had a huge vaginal swab soaked with blood, passed small clots of blood when passing water and had a catheter left in.  This time, not even a pad.  Nothing.  There was a small amount of pink and obviously pain, but that should be gone in a week.

Two lots of antibiotics in hand and sis took me home feeling kinda wobbly (lying that yes of course I have someone to be with me for 24 hours).  I managed to cook, despite pain and wobbliness figuring I'd better do it before giving into the desire to sleep.

Bit of a dull day really!

Friday, 15 October 2010

Bits of string and a few knots

2010 14th October - Happy Is As Happy Does

It's 3:21 on Saturday morning. I'm having my hair done at 10:00 finally. I should be asleep. Naughty Lisa! But, having been using my Happy App and generally having a decent day I'm going with the flow. Happy App recommends thanking people, working on relationships, planning a "best possible future" and a gratitude journal amongst other things. Today I got up, savoured my tea (soya milk, no sugar) whilst marvelling at Billy Bob teeth which were ACTUAL real teeth of a guest on Jeremy Kyle. Three Boohoo dresses arrived which I tried on - keeping all 3! Having settled on today's hospital outfit I slapped on essential make up (stay don't stray, eyeliner, mascara, lipstick) and sped to pathology. I sat alone in the deserted waiting room for perhaps 90 seconds - didn't even feel today's needle! Realised I'd forgotten to call Izzy in research so rearranged for her to take more blood on Tuesday before chemo. I was back home for more tea in an hour. Sometimes it takes an hour just to get to hospital. Beckie popped in for tea in her lunch break and I gave her the bracelet I made for her. I started making them again for something to pass time productively (ie more productive than ironing things which just go off and get their silly selves creased again). Photos to follow! Managed a brief google chat with H, and later, with the Rock who H managed to persuade me, is obviously far from perfect (as I erroneously concluded some months ago), but based on previous behaviour and general good grades, probably shouldn't be suspended from my life. I made another 2 bracelets and for this weeks item of 'not on the list' treats, drank a pint of organic beer.

I read something earlier that is true for me a lot lately - I only tend to blog bad stuff or difficult stuff. It's time to start recording the good stuff, really dig down and find the funny stuff and keep up the gratitude. I can't save the world, I couldn't have saved the cheerleader either - I'm no Hero. I can save my world though, I can save me. We're all dying, I won't and have no desire to live forever. I can aim high though and make sure everything is just another baby step to my long term goals. Secret they may be, difficult too. But not impossible - that's just an excuse word for someone who doesn't want to try.

I shall return on the laptop and see how many typos I can make on a phone blog entry :p but for now - good morning!

Friday, 8 October 2010

2010 - 8th October - Chemo Start Date

Chemo nurse rang - Dr Tom says to start 26th October - 2 days before my birthday.  I cried.

She rang back with 18th - he'd waited as I was going to see if I could get Avastin - but to get approval I have to apply to the PCT, possibly appeal if I fail, then apply to the govt fund.  I don't have time for all that crap.  Given Dr Tom himself is spouting the "it only gives you an extra 6-8 weeks life" what's the point?  If that's what he really thinks.  I mean does he think my life expectancy is SO short already that I'll want another 2 months at this stage.  Surely there's no point in me having chemo now if I'm not going be around for another year or two?  I'll be having more chemo, I can apply for Avastin for the next lot.  He didn't even say he'd prescribe it - I don't know how to apply for it in the first place - I will obviously look into it but I think my diet is doing more good right now.  I don't need the stress of applying for more drugs it's too bloody difficult to get the NICE approved ones.

2010 - 7th October - Panini Hospital Stickerbook - almost complete.

So, been in a "bit of a mood" lately.  After feeling positive about my decision to go ahead with chemo - told Dr Tom on Friday and then we all realised I can't start till I've seen the urologist regarding the radiation scarring stopping my waterworks.  Awesome.

The weekend was painful.  Physically only, thankfully.  Saturday I went to Beckie's as mum was there with some olives and oil fresh from her latest trip to Italy.  I was already uncomfortable - perhaps from sitting in the waiting area for an hour on Friday?  I'd gone back to a full patch having tried a 3/4 patch which made me less likely to vomit and feel like a zombie, but didn't quite cut it on the pain killing front.  I braved Boston market for some veg and essentials plus a skin test at the Boston branch of where I'd booked a hair colour at the training academy in Spalding.  The pain didn't improve any so I didn't do much in the afternoon, had a long sleep (3 hours) in the afternoon.

Sunday I was up and ready for 10 when Beckie picked me up for a much needed shopping trip to Peterborough.  Although I've cleared out a LOT of my wardrobe (over half) I keep putting things on and realising, no they are also too big, I need clothes that fit, for my own self confidence.  Who wants to look like a cancer patient? My scales have no batteries but I think my weight has stabilised at 10st 5lb (last week's weight).  I wasn't comfortable when I got up, nor sitting in the car on the way there and by the third shop I felt I had to buy something in case I just couldn't manage another (which would have pissed me right off, travelling all that way to have a girly shopping trip).  Thankfully I found a few things but had to sit on the floor outside H&M while Becky paid for her stuff.  Time for a coffee break.  Becky queued for drinks (had to return mine since the soya milk was warm and obviously off since it curdled) I ended up with a black Earl Grey.  I put my head down and had a quiet tear or hundred and looked up to catch an old man looking at me.  He gave me a sympathetic half smile - I felt like he knew.

I felt so utterly miserable about suddenly not having relief from the pain - having seen the MacMillan nurse a couple of days before and told her I was fine. How am I supposed to cope in Dublin with a bunch of other people who have "normal" levels of energy, fitness and no pain?  The whole question of what I'm going to eat, what to do about juicing etc is bad enough - but I'll need to be sleeping for a couple of hours every afternoon, unable to walk far.  The thought of having an increased dose of the Fentanyl - more nausea/vomiting and more zombiness on top of being unable to really leave the house to do anything.  Is that living?  Not to me it isn't.  Things have changed so quickly in the last two weeks.  I can't help but feel it's the cancer taking over physically and at the same time chipping away at any mental control I have.

Monday I arrived at the salon - only to be kept waiting 20 minutes before being asked to sit down.  The student and teacher seemed to think I was asking for the moon on a stick.  I had roots which needed colouring and I wanted some slices or streaks of red/reddish blonde colours putting in.  This is something I've had many times, varying colours on a base colour of dark chocolate brown.  Gary has never had an issue with this, I have always been happy with the results.  Not so in the training room.  They got my colour notes.  It seems the problem was - they don't use the same products.  What?  Why was I allowed to book in for the services if they were unable to provide them.  Still in pain, I asked exactly what they were able to do that day?  They "should have had some hair samples first".  Well someone "should have told me" at the time I booked in?  A root touch up was all they could offer.  I can do that for £5 at home thanks.  So I got up and left, nobody followed.  In tears by the time I got to reception I thought I'd let them know how unhappy I was. I turn 40 in a few weeks - I'm very likely to lose all my hair shortly afterwards and while I still have long hair I want to look nice for my birthday, have a bit of pampering.  It may be a minor thing to anyone else, and ridiculous to anyone who can't afford to eat, buy clothes etc, but I'm talking about ME in MY situation - i.e. never going to have long hair again unless somehow the tumours stop growing for 2-3 years after it's all fallen out.  The rest of my life will be chemo - scan, wait, chemo -scan, wait.  My hair is not going to grow much in the waiting months.  I drove home in tears, wishing I didn't feel so helpless and hopeless or I could have spent time with my daughter - but couldn't see her in that state.  The owner's daughter offered to fit me in for colour in the main salon in a couple of hours - but I'd be in too much pain by then.  There was nothing she could practically do to resolve the situation, not her specific fault.  But I told her I didn't think I could face going back for my cut the next week.

I finally managed to stop crying at home long enough to meditate - which calmed me down and got things into perspective.  I decided to ring the next day and see if my stylist could also fit a colour in with my cut and sod the cost.  It's my last hair do (possibly) and since my hair thinned so much last time, I'd at least have to have it cut quite short again which I don't like.  Luckily he had space.

Wednesday - PICC inserted.  Up to the ward to wait for The Lone Ranger - this time (third) he opted for my left arm.  An hour in x-ray to see if it was in place properly, then to the chemo suite to have the wire removed and a temporary dressing.  Minor aching this time - no inflammation, some bleeding as the day wore on but a much better experience than the second PICC (veins already affected by first lot of chemo I suspect).

Thursday - Urology appointment with the new Mr Mad (that really is part of his name...).  Mr Mad doesn't speak with a very good English accent at all.  It was so difficult to understand what he was saying - I told him so he assumed he'd got the wrong patient.  No love, it's your accent I can't understand not the content of what you're saying!  After a frustrating conversation of impressing upon him that I was NOT leaving the hospital until I had a definite date for another dilatation and a promise of follow up to stop it recurring I was given 18th October.  Not happy with that, but no choice.  That means the next available chemo start date is when I'm supposed to be in Dublin, the week of my birthday, when my best friend is over from France?  Thanks very f@cking much.

So I went to admissions for an hour or so, more blood, BP low again (100/64) and MRSA swabs.  Back in the chemo suite I discussed with the sister that surely I could start next week?  The week before the procedure - how will my immunity be affected in just a week?  Or the day after it, on the Tuesday?  Just NOW, start it NOW in the vain hope that it will get rid of the pain and shrink the other tumours that aren't even bothering me yet, but are in fact slowly killing me.  She agreed the sooner the better, but getting hold of Dr Tom is another matter.  I'm back in on Wednesday for my line to be flushed.  I will probably find out then that in fact it will start on 25th October.

Happy birthday.

The Rock isn't being my rock any more, right now I find it difficult to speak to him at all.  He was horribly unsympathetic and downright horrible when I tried to get some kind of reassurance that things will be OK and I'll get through this.  She's welcome to him.  It will take a very long time for me to think of him, or talk to him the way I did again, if ever.