Ramblings of a Bad Fairy

Playing on Rainbows

2010-10-09T18:14:17Z

From Mr Bad Fairy

The last post was taken from The Bad Fairy's notes whilst staying at the Sue Ryder Hospice. She insisted on flying home for the day on Thursday so we took Miss and Master Bad Fairy out of school for the afternoon and had a lovely time on a remarkably sunny day.

Sadly The Bad Fairy passed away peacefully in her sleep at 5.15pm the following day (Friday 8th October 2010), she always had great timing! I kissed her fairwell as she slept to start her on her next adventure.

The Bad Fairy has been an inspiration to all who knew her. She was always modest, selfless, ready to smile and on the side of the nurses! She will leave a big hole in our lives but her spirit lives on in Master and Miss BF.

The fairy dust will be sprinkled in an area of the garden dedicated to wildlife and directly below where the rainbows always rise.

I shall keep an eye on this blog and show it to old friends and new. If anyone reading this needs any help or a sprinkle of magic dust then the BF family will be here.

I told a fib - back to medical stuff

2010-10-09T18:13:00Z

Apologies all round but this is much more cheerful than normal.
I'm in a local Sue Ryder Hospice. Considering my severe dislike of hospitals this is out of this world.
I have a room to myself, staff who are so cheerful, considerate and just downright lovely!! The chef is brilliant and tempted me to eat again, all fresh and home cooked. I think I'd be perfectly happy to end my days here!

On the treatment side, I can eat, I haven't slept so well for ages, much less pain, (less grumpy!!!) and and and.... haven't been sick for 5 days (Yippee!!).
My legs haven't changed but then my sodium isn't improving quickly! But - at least it's going in the right direction. My super duper friend Dr M came to visit today and we did a bit of an adventure on wheels around the beautiful grounds. She assures me she's a trained wheelchair driver!!

Sunday

And now I'm waiting for visitors - hurrah! 2 wonderful friends from where we used to live and one of their delightful daughters. They arrived with an armful of cards from friends and themselves, along with presents. I have to admit to not being able to read the cards until later as one glance and I was quite choked! Mr Bad Fairy was able to get here too and meet them for the first time which was lovely. Despite living so close originally we never managed it previously, they're now about an hour's drive away from where we live. Anyway it was wonderful and I can't thank them enough for making the effort.

A brave Bad Fairy......

2010-09-08T14:20:34Z

…..this time I didn’t run away!

I did it! I went to the hospital, stayed in and had the stomach drain done. It has helped and I do feel a bit more comfortable…..but not sure I’d do it again unless entirely necessary. As revenge my body retaliated and I now have water balloons for legs! Oh and, after coming home on Friday, I came down with a lovely tummy bug. Another reason to avoid hospitals where possible.

It’s now Wednesday and despite feeling absolutely shattered I do feel like I’m living on the same planet as other people again which can’t be a bad thing.

After my tummy settled down I also started yet another new chemotherapy. This time we’re trying Capacitabine. This one is a two weeks on tablets and one week off. Dr Socks has started me on a 50% dose in the hope he doesn’t have to suffer my wrath for overdosing me! I’ve no idea how it’s working yet, I don’t actually feel any different. Time will tell I suppose.

In between all of this it’s been “back to school” time too. The Junior Bad Fairies both enjoy school so it’s not too much of a difficult time. Other than the usual spending money like water on uniforms and shoes. Master Bad Fairy came home yesterday, chuffed as a little monkey. He’s been voted onto the School Council by his classmates and couldn’t stop grinning.

Well that’s it for this update, it’s getting a bit tedious all of this medical stuff don’t you think? I shall make a concerted effort to inject a few “off topic” posts over the coming weeks to brighten things up again!

Ashamed to say.......

2010-08-22T21:45:25Z

….I ran away!

I’ve developed a real dislike for hospitals. I can do the out-patient stuff no problem, lots of people to chat to and generally people who are either only a little bit poorly or dealing with their poorliness quite well. It’s the in-patient stuff that makes the hairs (the sparse few) on the back of my neck stand on end.

Until this cancer malarky I hadn’t had much experiences of hospitals except that Master Bad Fairy was born in hospital. Such a delightful experience that proved to be that Miss Bad Fairy was born at home!

Last Thursday I was admitted for a planned procedure. I need a drain in my abdomen…the build up of fluid makes it look like I’m expecting triplets at least. Anyway, the plan was to go in on Thursday, have an ultrasound, fit the drain and then home on Friday. Can’t say I was looking forward to it but it needs to be done so with gritted teeth off we set. Unbelievably I was admitted and allocated the same bed as the one I had during my “visit” in June when I was neutropenic and had the hugely manky mouth. That set the first hairs bristling.

The ultrasound went ahead with much muttering from the radiographer. The idea of the ultrasound is that the radiographer picks the safest place for a doctor to stick a needle in without hitting anything vital….she marks the spot with a big X. Sadly there was no safe spot. The procedure will need to be done whilst the doctor can see the scan. The solution, stay in an extra few nights until this can be organised or go home and come back at a later date, probably in more discomfort and definitely with the equivalent of quads not triplets. Hairs bristling like no-ones business I legged it home!

Now I know most people will think that’s not the most sensible option, especially if you know me and know that I don’t get easily spooked so let me explain.

It all stems from my “visit” in June. I know I was ill and needed to be there and I’m grateful to all the staff for sorting me out and getting me back on my feet. My newly found dislike of hospital is nothing to do with the staff or the care they give, it’s simply down to the other patients. That sounds really callous doesn’t it? They can’t help being there either. But let me tell you, it was awful.

It’s a six bed, single sex oncology ward. One woman did nothing but whinge in one of those pathetic helpless little girlie voices, “I’m neutropenic, who made this sandwich, I have to be careful you know”, and in the next breath whinging that her takeaway Indian meal she’d had brought in was leaking sauce all over the floor. (It went on!). Another lady lay in her bed, I suspect close to the end of her life. Whether she was aware of much going on around her I don’t know but I’m sure her family were. A third lady spent her time talking, quite loudly, on her phone telling the world how the staff were with-holding morphine from her and then making racist comments about one of the nurses. There was also mention of sweet jars filled with pills being knocked over by cats and GPs confiscating the lot! The fourth lady sadly had the start of dementia to deal with along with her other ailments. She slept for much of the day but came to life at visiting time and continued through the night. She had conversations with people who weren’t there, getting cross because they weren’t doing what she asked. One night I found her next to my bed (she was in the furthest bed from me!). Apparently I had a hidden stash of chocolate and alcohol and she wanted some. I tried to carefully disentagle her zimmer frame and feet from my drip lines and guide her back to bed but had to use the “call” button to get the night nurse to come and help out. The next night she needed a wee and shuffled to the middle of the ward and did what she had to do. Again I had to get up and go and find the night nurse, fearing that she’d slip and really hurt herself.

The fifth lady was in the bed next to me. She was elderly and obviously very poorly. She still had a smile on her face and tried so hard to not inconvenience the nurses. I had no option but to lie in my bed and listen to the medical team trying to clear her lungs to help ease her discomfort and perform various other procedures to help her last hours or days be more comfortable. No option but to overhear the conversations her family had around her bedside, remembering that they had to speak loud enough to be heard above the shouting into telephones on the other side of the room. Lady number five died.

So now you know, that’s why I ran away. Cowardly? Maybe. Preserving my sanity? Definitely.

Busy days and....

2010-08-13T22:06:58Z

....lumps ‘n’ bumps!

I’m cream crackered! Pleasantly cream crackered it has to be said.

Yesterday was a busy day. We took the children to watch the Severn Bore. It wasn’t the most spectacular one I’ve seen, it was a three star version (the best being a five star). For their first one they were suitably impressed with the power of nature! The wave was big enough for the surfers brave enough to dodge the water propelled tree trunks to surf for a while, although I don’t suppose anyone broke any records. The bore is one of those natural events which is quite breath-taking to witness, the natural power of the tide in a quickly narrowing river can only reinforce any respect you have of water. Personally I wouldn’t set foot in the river, one it’s cold, two it’s very powerful and three it’s wet!!

Then it was off for chemo. All went smoothly and it was back home ready for the Juniors bed time.

Not that they stayed there for too long. Mr Bad Fairy had promised to wake them up to watch the meteor shower! So at midnight Master Bad Fairy sat ooohing and ahhing accompanied by constant “Wow did you see that?” and chatter chatter chatter. Miss Bad Fairy sat on my knee with three coats on her and a hot water bottle and couldn’t resist the offer of a second tucking into bed for the evening!

And now the lumps and bumps bit. Slight exaggeration, it’s only one lump or even bump. Right at the bottom of my breast bone. Dr Socks says it’s a “tumour deposit”, in other words this grotty disease has now shown it’s presence in my skin. Hrmph! It started as a little bump, possibly a bite or spot so I didn’t think much of it. It’s now about a centimetre in diameter and is looking very attractive….not. Luckily it hasn’t broken through the skin so it doesn’t need dressing or fussing over. Dr Socks thinks it could be a useful indicator as to whether this chemo is being effective but has said that if it becomes troublesome or painful he’ll zap it with radiotherapy. The only troublesome bit, if you can call it that, is that I’m now having to do an impression of a free spirited 70’s hippy chic or maybe it’s a radical feminist. Bras have had to be abandoned as the band rests on the lump and I’m not risking damaging or irritating the skin any more than necessary. But then, as I’m not in the habit of hoisting my t-shirt over me head in public places I don’t suppose it will have a huge impact on my lifestyle!!

The wanderer.....

2010-08-10T21:52:17Z

….returns!

Dr Socks is back! He didn’t go to Cromer in a caravan, neither did he sail between exotic tropical islands and sadly I don’t think he bought himself any commemorative holiday socks…but he’s back.

I was quite surprised at how pleased I was to see him. Not in a weak at the knees in awe of the great doctor way, I don’t do that sort of thing. Besides, when you’ve been told of the entertaining antics of the off-duty version it’d be hard to be in awe and keep a straight face!! These unexpected feelings were probably because I’d been feeling more unsettled than I realised what with the last few weeks of ups and downs, the stay in hospital, the manky mouth and delays in treatment etc. Strange really as I have every faith in his team. Dr Tink’ is brilliant and I trust her judgement, sometimes I suppose it’s just nice to hear things from the Big Cheese. (No dubious connections between socks and cheese please!!)

Anyway, now I feel happier, more confident and reassured. It’s also written in black and white on my notes that I’m not ready to be consigned to the bin yet! The plan of attack is to have another dose of Taxotere this week and hope that my improved liver function will “rinse” it out before it attacks my mouth too severely but not before it’s done its job. If all goes to plan then I can continue on a weekly dose. If it doesn’t then next out of the chemo cupboard will probably be Gemcitabine.

Home we headed and as a reward for being so patient I spent some time teaching the Junior Bad Fairies the fine arts of playing poker. Okay, not poker, I never was any good at poker … I have to have a written list of what beats what because I can never remember. As for having a ’poker face’, no chance! We played Rummy and Trumps, very exciting I know but when you’re eight and nine it makes no difference what you play as long as you have a chance of beating Mum. Sadly they did and no I didn’t sulk, but they did have to do some bedroom tidying!

Woe is me.....

2010-08-03T20:58:37Z

…..but don’t despair!

It was the weekly jaunt to see the consultant today to get the ok for chemo this week and woe is me ….the little toe-rag is on holiday! Fancy that, holidays in August tut tut, how dare he. Mr Bad Fairy muttered under his breath about Dr Socks probably being on a yacht sailing to and fro between exotic islands. I was thinking more caravan at Cromer maybe?

After a mere two hour wait and numerous cups of tea I was summoned in to see the covering doctor. A quick chat and a glance down my throat was all it needed for it to be confirmed that the thrush birds are still in residence. Not as many but still lingering. So no chemo for this week. My liver function is relatively stable despite having last week’s dose cancelled so it wasn’t too hard to agree with the doctor that the best thing was to wait another week, speak with Dr Socks next Tuesday and see where we go from there (the Bahamas would be nice but I don‘t think the NHS would pay for that as a therapy!). The decision was helped along by my comment about not wanting to be admitted to hospital again and the doctor’s return comment that chemo can kill!

I don’t know how effective the limited amount of this chemo I’ve had has been on the cloudy tumours but it’s done the deed with my hair and nails. Each eye has about a dozen lashes left (yes I did try, unsuccessfully, to count them without poking myself in the eye). I do wonder why it is that even the bottom lashes when they fall manage to defy gravity and fall up into my eye. Why is that? My eyebrows are also doing their own thing. I could start yet another new trend here. For some weird reason I’ve lost a horizontal stripe right through the middle of one eyebrow. I now look like I have “go faster” stripes above my right eye! As for nails, let’s just not go there …. Mr Bad Fairy has been told he is the official scratcher and will have to scratch any itchy bits for me!!

Who needs sleep?....

2010-07-23T21:11:20Z

…..Me, I do and lots of it!

I know, you know and lots of other people know that it’s not advisable to take steroids after about 6pm. My chemo appointment yesterday was running a bit late and it was about 5.45pm when my pre-chemo steroids were sent firing through my veins.

Oh what a night! It was quite obvious that it wasn’t going to be an early one, steroids make me a bit hyper. I leave the chemo suite ready to dance around the car park … the reason why Mr Bad Fairy won’t let me drive myself home! Quite sensible really, goodness knows where I’d end up.

The hours ticked by, chattering about complete nonsense to Mr BF until he couldn’t take it anymore and had to go to bed. A few more hours on the computer …..chatting. The hours ticked past and my little brain was whizzing around, no sign of letting up.

4am arrived and I decided I really should try to sleep. Off I went to bed, little brain still whizzing. Do I want a cup of tea? Why does Tabitha the cat purr so loudly? Can I feel the chemo doing some Kung Fu fighting with those cloudy tumours? Why is it getting light outside so early? Wish Bertie hadn’t scoffed my cake, I could just nibble a bit now. I wonder if the person who loses a shoe in the middle of the road realises they’ve lost a shoe? Surely that’s something you’d notice? Flap the quilt about a bit, rearranged so it’s just right. Punch the pillows into submission, flip them over to get the benefit of the cooler side.

Right, time for the tried and tested relaxation techniques. Flex and relax each muscle individually starting at the toes, this usually works by the time I get to my knees. Picture a tranquil scene complete with winding paths and a waterfall cascading into a crystal clear pool. Repeating the word ‘relax’ or ‘sleep’ or strangely enough ‘black’ over and over and over. And all of the time the clock keeps ticking.

Failed miserably. The clock ticked and reached 5.30am. Definitely need that cup of tea now. The twittering, tweeting and occasional screech of the dawn chorus outside the bedroom window had reached a volume that was becoming irritating! I swear I could hear the rabbits bouncing across the lawn looking for that particular lush bit of grass that would make the perfect breakfast feast.

Ah well …..who needs sleep? Me, I do! Maybe I should have used up that energy dancing across the car park?

Night night, sweet dreams and mind the bed bugs don’t bite!

As if to prove a point....

2010-07-22T22:01:05Z

…. Bertie scoffed my cake last night.

It was a delicious cake, or at least the bits I’d eaten were. A spiced Dorset apple cake (or a Dorset spiced apple cake maybe?) made by my lovely, slightly loopy, terribly gorgeous (please note any single, handsome gentlemen that may be reading), friend Pippa.

Bertie is confined to the dog naughty corner for the next week and I’ve ordered some padlocks for the kitchen cupboards!

Animals do the.....

2010-07-19T13:20:46Z

…….naughtiest things!

Who said pets are good for you? Therapeutic? Reduce stress levels? Excuse me whilst I splutter into my cup of tea.

The Bad Fairy household is a bit of a zoo. Not a proper zoo, we don’t have a giraffe, a hippopotamus nor an elephant. (Although the jury is out on the elephant after a rather large hole appeared in the bottom field…..suspicions have been voiced that a rogue elephant may be trying to break in!)

We did have some orphaned lambs that grew up to be big sheep. They were re-homed after I had to retrieve one from next door, he was mooching around the living room watching the television. Presumably he was a bit put out at having to miss the Jeremy Kyle Show because after this incident the only way I could walk through the field without being butted was if I held him in a head lock!

Chickens are much easier. Except Milly. Milly thinks she’s a dog. She can frequently be found, head tucked under her wing, having a nap under the kitchen table. After being evicted she sulks and stares longingly through the window waiting for the next chance to sneak in. She comes running (you’ve never seen a chicken sprint so fast!) when she hears the dog food being served up and follows the dogs around to make sure she isn’t missing out on anything.

I suppose that brings us nicely to dogs. There are three Bad Fairy dogs, all Labradors. Anden (needless to say there’s a story behind the name) and Penny are both nine. Very loyal, very gentle and generally very good. They have had their moments but have mellowed like a fine wine. And then there’s Bertie.

Bertie (named because I thought he had hints of Bertie Wooster about him) is naughty. If there was a naughty corner for dogs Bertie would live in it. He just can’t help himself. He lulls you into a false sense of security by being a model dog for a few days, gazing at you with those soppy big brown eyes, resting his head in your lap and then it all gets too much for him. Nothing is safe. Bertie can open the pedal bin and will cheerfully retrieve any goodies he can find there. He’s a super-swift worktop surfer and helps himself to anything that takes his fancy, loaves of bread, cake, table mats, a bottle of Ribena and yes that last one did make a bit of a mess! Worse than all of that he dared to steal my Jaffa Cakes, slobbered on them all then ate the cardboard box. Therapeutic? Yeah right!

Anyone want a dog?

Bill Oddie.....

2010-07-16T21:26:31Z

…..would be proud of me.

My mouth and throat are a sanctuary it seems for thrush. Ok, so maybe Mr Oddie wouldn’t be that impressed as it’s not the feathered variety of thrush but you can’t please all of the people all of the time! I actually thought I was doing quite well clearing them out of the nesting spot at the back of my throat but Dr Tinkerbell said otherwise and Tuesday’s chemo was postponed.

Did you notice that it was Dr Tink’ and not Dr Socks I saw? I fear Dr Socks is avoiding me. Probably because I told him he didn’t look guilty enough after putting me in hospital the other week. Or maybe because I suggested he might be trying to finish me off ……can’t think why he’d want to do that, a model patient such as myself!

Short one today, I have to go and create a white rabbit costume for tomorrow. Miss Bad Fairy is going to an Alice in Wonderland birthday party. Much easier if it was a ‘Wearing mum’s wellies’ party!!

"I've looked at clouds....

2010-07-08T13:51:57Z

….from both sides now”

Clouds …why clouds? On Tuesday I had my weekly consultant consultation and we discussed my latest ct scan images. Clouds, that’s what I have!! I can’t remember if I said in an earlier post but I’ve developed an allergy to the IV contrast they use to enhance the images of scans so now mine are a bit blurry to say the least. Rather than defined ‘blobs’ on my liver I now have clouds. On a steroid sleepless high last night I spent ages picturing my clouds. Are they white fluffy cotton wool ones, big black thunderous ones or somewhere in between? After much deliberation I settled on crisp grey clouds with fluffy edges, a hint of showers but the potential for the sun to break through.

The outcome of the consultation, other than discovering clouds, was that I had more chemo yesterday. Because my last ‘weekly’ dose put me in hospital for a week and then took a further three to four weeks to be cleared from my system by the unclouded bits of my liver, this weeks dose of Docetaxol/Taxotere was reduced by 50%. Hopefully this will do the good stuff it needs to do and allow me to continue with the weekly cycles. The best way of telling if it’s doing good seems to be how I’m feeling and how stable my liver function is …..scans will just show clouds, hopefully with the odd ray of sunshine peeking through.

You can’t have rainbows without a few clouds!!

A celebration, an anniversary....

2010-06-30T12:21:57Z

….or what?

A difficult one to decide. I think I’ll opt for the celebration simply because any excuse for a party seems good to me! So why a celebration? Believe it or not it’s a year ago since I was diagnosed with secondary breast cancer. A year which has flown past and seen a huge change in “normal” life for all in the Bad Fairy family. According to some a year which I was unlikely to see through ……as if I’m going to accept that, some people just don’t know me at all!! Like it or not here I am a whole year on and for those who are wondering I don’t intend to be painting any rainbows for a few more years yet! (And yes Mum, when I do eventually paint the rainbows I’ll remember to wear knickers!!)

Who knows what surprises the next year will hold?

Not me that’s for sure. Crystal balls and Bad Fairies don’t mix well …in fact anything breakable and Bad Fairies don’t really mix very well if I’m honest! I do know what’s planned for next week though. If my mouth has returned to normal then I will probably have another (smaller!) dose of Taxotere, preferably out of the bottle which says “No hospital admissions”. The reasoning behind this is that despite the last dose being so hideous it has stabilised my liver function. Difficult decision! If, for whatever reason, the Taxotere is a no go then next out of the box of tricks is likely to be Capecitabine. We’ll just have to wait and see how things go.

In the mean time there’s a party to organise …… sausage on a stick anyone?

A fortnight of....

2010-06-24T12:41:11Z

……fun and frolics!

OK, who forgot to pack the fun and frolics? I can do the odd funless day with no frolics but not two weeks worth thank you very much!

It all started (surprisingly enough) about two weeks ago. After a chat with Dr Socks we all agreed that the Red Devils needed to be sacked as they appear to have done what little good they are capable of. Next question, what to replace them with. The pin the tail on the donkey game came down with the tail pinned in Taxotere, again as a weekly chemo, possibly for ten weeks but we’d see how we go.

That same day (Dr Socks doesn’t hang around…..must’ve had “go faster" stripes on the socks that week!), I had my first dose of Taxotere. Seemed ok, no reactions, all good stuff.

Fast forward to that weekend and my mouth is revolting. Oral thrush, ulcers and tasting like the bottom of a monkey’s cage. Mr Bad Fairy says I can’t say that …I should say bird cage but I think monkey’s cage is far more descriptive!! Monday sees me sulking (in between sleeping) in hospital. Dehydrated, neutropenic and in need of five days of IV antibiotics. Big Hrmph! The worst part? Not the fact that I couldn’t eat or drink, no, the fact I couldn’t speak. A silent and huffy Bad Fairy is not a Bad Fairy you’d want to spend much time with!

Luckily for me, a few were brave enough to visit. Mr Bad Fairy did a brilliant job of managing to hold a conversation with me without me feeling like I wasn’t getting a word in, he knows how much that would have annoyed me! Fairy Godmother made a surprise visit too. She really shouldn’t have, not because it wasn’t lovely to see her but because she has so much stress and worry to deal with of her own at the moment. And the wayward purple Pippa called in on numerous occasions, raising a smile each and every time.

By Friday things were improving slowly. Still couldn’t eat but at least I could manage to sip drinks which saved being constantly pumped full of liquids! Also a squeak of a voice had returned. Dr Socks braved a visit. I think he’d been waiting until I could at least mutter again ….not entirely sure he could have coped with a barrage of hand signals and gestures!!

Saturday afternoon and I was finally released, with a bag full of pharmaceutical goodies. Now all I need is the last bits of my mouth to heal up and then I’m going to have the greasiest, squishiest, sloppiest take-away burger I can find!

Straight talking

2010-06-10T12:36:09Z

…..junior style.

Picture the scene, the Bad Fairy family trundling along in the car early on a Monday morning and the following conversation takes place.

Master BF, “Where’re we going? Oh, it’s the hospital. Why? It’s sooo boring!”

Me, “I have to have my weekly blood test so we won’t be here long.”

Master BF, “That’s no fun. It’s so sooooo boring.”

Miss BF, “ Don’t moan! It’s not fun for Mum either. She has to have blood tests so she can have her medicine. If she doesn’t have her medicine she’ll die because her liver won’t work and you don’t want that do you?”

Master BF (sheepishly!), “No.”

Miss BF (after a few moments pondering), “Mum, when you’re dead what will you be like?”

Me, “ ……..Smelly!”

Miss BF, “Hmmm, I don’t think you’ll be bad smelly, I think you’ll be good smelly like when you’ve had a shower.”

Not a tear shed, although I admit to a slight lump in the throat, and the conversation ended up discussing Egyptians and cats!!

I think that’s a good sign that the jumbled boxes are slowly being put in order again. Last week that same overheard conversation would have had me in pieces and certainly wouldn’t have received the same contribution from me.

Children, so accepting, so innocent and so utterly loveable and wonderful. All the more reason to do everything to prolong this adventure for as long as possible.