A good Guide.

I’m here again, even tho I said I would take a break, but I keep finding things to tell you about.

No. 10 done and dusted.  Although my treatment plan is to have 16 treatments, the drug I’m getting at the moment is called Taxol, and I am only getting 12 doses of that, then I will move on to a mixture that they call here A/C, I don’t know the clinical name for those drugs yet, but I’ll fill you in on that when I’m finished the Taxol and know more about it.  It will be administered bi-weekly and will finish sometime in March.  (There will be celebrations!)  All this will be featured in my upcoming novel, 'A reluctant users guide to the Chemo Cocktail entity'!

I think I explained in a previous post about some of the side effects of Taxol, one of them being tingling or pins and needles in your hands and feet, the clinical name for which is peripheral neuropathy.  I'm getting good at these names, that what happens when you ask questions.  I don’t suffer from the feet bit of this, but I have had trouble with tingling in my fingers and lately it has become worse and the tips of my fingers now feel numb.  This is all normal for anybody on Taxol and they assure me that the feeling will come back.  When something like this is raised in my initial assessment by the nurse of the day, I’m always checked over again by a Doctor before the treatment and if they think it will be a problem for me in the future, then they won't treat me.  They treated me today, so nothing to worry about for now.  

For someone who is normally an avid reader, I haven’t been reading at all since my treatment started. I did receive quite a few books as presents when I was diagnosed and made some initial attempts to get started but so far I can’t seem to focus on anything in any of the books and have left them aside for now.  Instead, I am trying to knit a bit and was in the process of sewing something I knit together on Saturday when I noticed that my fingers just wouldn’t work as I wanted them to.  I realized too that they were actually hurting me.  For the first time I was starting to get really pi**ed of about this peripheral and chemotherapy thing, when in walked Tall Kevin with this bag.

My peripheral vision jumped into action, nothing wrong with that!

One of Tall Kevin’s colleagues in work, Arlene, is also a leader with the Buion Naomh Pol Rangers, Eastern Region Girl Guides in her spare time and she sent this package home with Kevin for me.  Once again I’m completely overwhelmed by the kindness and generosity of people, especially by a bunch of young girls that don’t even know me.

Never having been one myself, I know very little about the Girl Guides and what they do.  My one and only experience of what they do was last year when my niece, who is a Girl Guide, was going for one of her merit badges and needed some help from a family member with attaining it.  My brother (yes, Fergus again!) called me and asked me would I be free to help as he and Michele were both busy on the night that assistance was required.  Of course I didn’t hesitate to say yes as I'm always happy to help, nor, at the time, did I question why neither of them were available on a school night to go with their daughter.

As it turns out, Rachel was going for her ‘Helping the Aged’ merit badge!  Suddenly, the fact that Fergus and Michele were not available all made sense.  I really must remember in future not to agree to any requests for help without first getting all the information on the task involved!  Anyway, turns out the joke was on them, as I was (despite being the youngest ‘aged’ person there) royally treated by not only my niece, but by every other young merit badge contender who had all made cake and were eager to make sure that everyone tried every type of cake, biscuit, bun, flan or tart that was on offer.  Some of the cakes were so brightly colored I needed my dark glasses to shield my not so bright any more eyes!  Needless to say, merit badges were awarded left right and center, and I didn’t bring home any cake for Fergus or Michele.  

The Guides from the Buion Naomh Pol Rangers certainly deserve a merit award, or several.  The bag was full of everything a chemotherapy patient could ever need.  I suspected they had done this before, and after consulting with Tall Kevin, I was told that they do do this for other cancer patients, but this one was specially put together for me.

Just look at what’s in the bag:

Tissues for my nose problem.
A super sparkly toilet bag for the 'far too many pill bottles I now have to carry with me everywhere' problem.
Sweets for the dry mouth problem.
Lip balm for the dry lip problem.
Hand cream for the dry hand problem.
Soft mittens and cosy socks for the cold hands/feet problem.
A cushion for the ‘my neck is always at the wrong angle when I’m lying on the couch’ problem.
A water bottle and a coffee cup for my drinking problem!Love hearts, cos they fix any problem!


And these!

Anti-Stress Coloring books.  They will fix my 'I don't know what to do with myself whilst lounging on the couch problem'!  What a thoughtful thing to give to me.  I will really enjoy coloring myself calm.  And if my Girl Guide niece really wants to put her ‘Help the Aged’ merit badge to good use she can visit me and give me advice re color combinations etc. as she is really good at this sort of stuff, and I could use the help.

I just hope the numbness in my fingers doesn’t stop me holding the pens, or making mistakes and going outside the lines.  

I now also have a 'where am I going to put all this stuff' problem! Ha!

Lastly, I want to extend a HUGE HUGE thank you to each and every one of the Buion Naomh Pol Rangers, Easter Region Girl Guides who helped put this pack together.  You don't know me at all but you got everything in it so right.  I’m absolutely delighted with the pack and you made a cranky (not so) old, dry handed, numb fingered, stuffy nosed, always thirsty chemo patient very very happy.  If I can be of help to any of you in achieving any of your merit badges in the future, count me in, I’d be more than happy to help, and of course, I do have previous experience, especially if any of the merits involve eating cake!

Is there a merit badge for sitting on the couch, eating sweets?  I'm good at that too...

Is there a de-merit badge for brothers?

**Disclaimer: Rachel's merit badge may not have been called the ‘Help the Aged’ badge,  I think it's title was actually 'Hostess', but that's just a technicality.  

Simply the best.

Hello!

I know I said I wouldn’t be here for a couple of weeks, but I wanted to show you something.

No 9 is under my belt (or in my veins really!) and all went well.  I’m back at home, on the couch.

I’ve been doing so much grumbling about not being able to do much and ending up on the couch when I try to do anything that everybody is fed up with me.  I know you’re all shouting at the screen saying what do I expect, I shouldn’t be doing anything anyway...

Well my lovely sister-in-law Michele, got so fed up listening to me moaning that she made me this!

A couch survival hamper!

I’ll have to do the 12 days of Christmas to list everything that’s in it, but apart from the extremely chocolate biscuits comfy socks and Ferraro Rocher, there’s an RTÉ Guide!

Ah the old RTÉ Guide Christmas Bumper edition, I haven’t seen one of those in years.  So now I can read through it and tick all the programs and movies I want to watch, and then forget to watch them.  Or I’ll be watching one and somebody will come in and I’ll have to turn it off, or there’ll be football on another channel which always overrules anything that I want to watch.  But that’s fine, I can always go to the next day in the guide and plan my viewing for that day, while eating the Werthers Originals, drinking coffee, wearing my comfy socks and blowing my nose with the balm filled tissues.  Bliss!

I’ll never complain about being stuck on the sofa again, and I think I'll survive.  Such a simple thing, that gives me so much enjoyment.  Every home should have one!

And every home should have a Michele too, she’s simply the best!

On the eight day of Christmas.

On the eight day of Christmas.  Wait, is the eight day of Christmas before or after Christmas?  Either way if it's not the eight day, I'm still using it!

Well, that’s no. 8 done.  Halfway there, well in number of chemo treatments anyway.  After the 16 chemo treatments, I still have to have surgery and then Radio therapy, I’ve no idea yet when either of these will take place, or what they involve, but I’ll worry about them when they happen.  For now I’m just happy to start the countdown to no more chemotherapy.

I haven’t been very well the last week and have been confined somewhat to the couch.  I’ve had what felt like a bad cold or a sinus infection, I’m not sure which, so there was nothing for it for me but to lie on the couch, blow my nose, and be waited on hand and foot. I didn’t set foot outside the house from Wednesday to Sunday, much to Rusty's disappointment.  But with Storm Deirdre ragging about the country, it was really the best place to be.  Surprisingly, even after feeling horrible for the last week, my bloods and counts were all ‘normal’, lying on the couch obviously works!  (I can hear you all saying, "I told you so").  I mentioned to my wonderful nurses of the day about my misbehaving nose and she has sent me home armed with (more!) drugs, a nasal spray and some cream.  I am constantly amazed at the fact that there is a drug, cream, ointment, spray, witches brew of eye-of-newt and leg-of-frog, voodoo doll complete with sticking pin, or rain dance to cure any ailment that I may have.  Hopefully this new set of stuff will cure my nose and I won't look like Rudolph anymore.  I used to have a small bag to hold my stash of cures, but now it is looking more like Santa’s big black bag.  Except I’m not as generous as Santa, I won't be sharing, even if you've been nice, I’ll be keeping the whole lot for myself.  And if this keeps up, not only will I have to make a list of the drugs and check it twice, I’ll have to get myself one of those daily pill boxes that old people use to keep track of what exactly I’m taking.  I also got to see the grumpy man in the suit today.  I didn’t have to leave my chair and sit in his, he came to see me in my chair this time. He's far more personable when he's in the ward.  Result!

Can I just politely ask whoever is doing the rain dance, can you stop now please?  We’re all drenched here, thanks.  And if I find out who's wielding that sticking pin!!!

So, It finally happened, someone else came to see me.  After a long wait, late night phone calls, several not very subtle hints, some thinly veiled threats, lots of swearing, some unashamed begging, and finally a strongly worded letter of complaint from my solicitor (dictated by me), Fergus finally arrived with cake!

Obviously, I couldn’t eat all of those myself, so I had to share them with him.  Hmm... a method in his madness I think.  For now his score has been upped to a big fat 0, as the cakes were rather delicious.  I’m already looking forward to the next lot.  He also said he is not talking to me any more ‘on the record’ as everything he says is being used in evidence against him!  I better not tell you then about the time I put on the beautiful shawl that my sister knit for me to keep me warm and he said I looked like Peig Sayers in it!   I look nothing like her, she has hair, and her shawl is black.  And I don't put mine round my head!  I have hats for that.  Here's pictures for comparison purposes. 

And speaking of hair, more good news.  Well not exactly good news but not bad news.  The little hair that I have left, is growing!  When I had my hair taken off (I hate saying I had my ‘head shaved’), as I explained, they left me with tiny stubble which they said would all fall out eventually.  But it hasn’t, some of it did, but it seems to have stopped falling out now and I have a ghostly halo of baby fine hair around my head.

Did any of you have a Crolly Doll when you were growing up?  I did, and if I remember correctly, she (Susan!) had a plastic head with tufts of hair stuck in it at spaced intervals all around her plastic crown.  I did try to find a picture of one of these dolls, to show you what I mean, but all I could find were dolls with hair.  I did find this photo, which is the nearest thing to what I look like at the moment.

My legs and arms actually look like that too, without the pincers, after I come out of Pilates.  Unfortunately my eyes are beginning to look shrunken like his/hers too.  Not much I can do about that, except try to get some more sleep.

In other good news, apart from knitting un-Peig like shawls for me, Deirdre has also being knitting hats.  Here’s a couple of the first lot. 

I love the pink one, but it’s a little too big, so will have to be adjusted.  The yellow one, which I also like, is a perfect fit and I'm wearing it as we speak.  Deirdre also sent me some scarves that can be tied around it.  I’m currently looking at YouTube videos to see what are the most stylish ways to tie scarves, I’ll have to practice a lot as mine look like I’ve tied a bandage around a sore head or the scarves unravel and keep falling off!  She says she is still knitting hats, so there are more to come.  A (nearly bald) girl can never have too many hats!

I do remember doing a blog some time ago about hats I founds around the house and was wondering at the time why anybody would need so many hats, but now I feel like I can’t have enough!  So thanks Deirdre, and keep them coming.  And thanks too to the others who have donated hats, scarves and lovely head bands that all help to keep my fuzzy hair head warm, and stylish looking!

As my treatment day is normally Tuesday, for the next two weeks the Oncology ward will be closed on Tuesdays.  So I’m going to be ‘infused’ on Monday’s instead.  Mephitic Mondays!  Christmas Eve and New Years Eve have now been officially christened Mephitic.

So only one thing left to say today, a BIG thank you to everybody who has been following my blog, sending me messages of support and keeping up to date with my treatment and my ramblings.  However, as it will be a busy time for everybody over the next couple of weeks, I’m going to take a break from blogging while the holiday season is in full swing.  I will be back in January with further updates and and all going well I will be on session 11 when you see me here again.

All that’s left to say now, is for me to wish you all a very Merry Christmas and a Happy (and most importantly,  healthy!) New Year.

‘Coatgate’ update.

‘Coatgate’ update.

I can only apologise.  Because of all the questions today, I completely forgot to update you on the ‘Coatgate’ issue.

Negotiations were tough, we had to appoint Tall Kevin as chief mitigator.  We did try to engage the services of the best negotiator around at the moment, Teresa May, but as she is so busy she couldn’t spare the time.  And because we both knew exactly what we wanted she couldn’t really help anyway.

In the spirit of good relations and all things European we have both decided to leave things as they are and keep our respective coats, which will make life much easier for everybody in the long run.  There will be no more wondering what the outcome will be and having to go back for more discussions about who gets to wear it what day and at what time. 

We’re all friends again.

However.

In my wisdom and in the interest of keeping relations good and making sure there is no going back on the deal.  I have decided to put a BackStop agreement in place.

If she comes Back here in any other garment the same as one that I own, I will Stop her getting in!

Counting the results.

No. 7 done and dusted.  One more and I’ll be at the halfway mark and will be counting down in stead of up!

It’s all about the counting on the Oncology ward.  And the counts, blood, liver function, oxygen saturation, blood pressure, weight.  This fella comes to mind! 

And he's cheering me on for the half way mark in this picture.  I could do with him sometimes to keep up!

And the scores.  It’s all about the scores.  You get a score here for everything, and believe it or not, the optimum score is Zero, yes a big fat 0!  Normally I like a good quiz and usually I try to get the highest score possible, but no, not in here, this is not a good quiz.

Every week the assigned nurse goes through her ‘check list’ with me and scores me on my answers.  It’s the same set of questions every week, you would think by now I would know the correct answers to give to increase my score.  But I can’t lie.  I am however allowed to complain, but I have to be careful after last weeks complaining, as that could end up with a negative result for me.

So Siobhan, any nausea or vomiting this week?  No! Unless you count that time I was watching ‘I’m a Celebrity get me out of Here’ and that lovely girl had to eat spiders and sheep’s eyes!  That made me sick.  No, Siobhan, that doesn’t count. Great!  A big fat 0 for that answer.

Any mouth ulcers or sores?  Nope, none. - The 3 times a day disgusting mouth wash, that tastes and smells like the yellow Augmentin that I had to give Kevin when he was small, is working.  I apologise Kevin, you were right, it is disgusting.  So that’s a good result here too!  All good so far, another 0.

Dry mouth?  (Dammit!)  Well yes, I do suffer from this. - I also have another disgusting mouthwash to combat this, and despite my strenuous routine, dry mouth does cause me problems.  I know, I know, I can hear you all saying that it doesn’t seem to cause me any trouble when talking!  I read in the book they gave me at the start of this that eating pineapple can help with this dry mouth thing, so I eat pineapple.  It also said to suck boiled sweets.  A much better idea in my opinion, so I ate boiled sweets.  None of them were much use until Tall Kevin brought me a bag of Jolly Ranchers home from New York.  Eureka!  They worked so well, I ate the whole packet, for medicinal purposes obviously.  Unfortunately you can’t buy them here in Ireland.  So I sent out the Bat signal, which was intercepted by my brother Declan who lives in Boston, (quite a strong signal from my dodgy Eir Broadband WiFi), and will be coming home for Christmas with a stash of Jolly Ranchers hidden in his case.  No pressure here, but no Jolly Ranchers will result in a negative score, and you don't want that for your big sister do you?  Also, you don’t want to be Fergus either do you?  I will give Declan a hug when he gets here, a short one, then I’ll be off to riffle through his case to find the contraband.  Disappointing score here, the lack of Jolly Ranchers scored me a -1.  Bah Humbug to that.  Oh wait, maybe I should try Humbugs!

How’s your appetite?  It's good.  -  But I’m fed up eating pineapple.  Another 0 here, accompanied by a dramatic eye roll from the nurse.

Any problems with your hearing?  Pardon?  -  Ha!  Sorry, I couldn’t resist saying that, before issuing a resounding no to hearing trouble.  Hold on a second, maybe I should have my hearing checked out, as I could have sworn I heard Fergus say that he would call over with cake.  I haven’t heard him knocking on the door armed with a Mannings box in tow anytime recently, could this possibly be the result of impaired hearing?  A big sigh from the nurse, which I pretended I didn't hear, but also another big 0.

Pins and needles or tingling in your hands or feet?  I can feel another -1 coming here.  Yes! -  Unfortunately this is one of the side effects that I get, that I can do nothing about.  Except sit with a heat pack wrapped around my hands from time to time, which is nice, except for the bad score it gives me.

Shortness of breath?  (Ah, she's coping on to the questions to ask and she’s just being mean now).  Yes, but only when going up or down the stairs.  That still counts, she’s as bad as Judge Judy. -1

Are you still able to do stuff around the house?  (Has she been reading my blog?!)  Eh... yes! - I’m answering yes as I’m interpreting the question to mean simple things like putting my own cup in the dishwasher, picking my own towel up off the bathroom floor, fluffing my own cushions on the couch, of which lying on I’m becoming quite fond of, peeling my own fruit, unwrapping my own bars of chocolate, and writing a list of the shopping for Tall Kevin to do.  I didn’t tell her I have a friend helping me with other less important things.  I can see the skeptical look in her eye as she gives me a reluctant 0.

There are others questions, to do with bodily functions and sleeping habits etc. but I won’t bore you with the questions or embarrass you with the answers now, but the final question before she goes away to order my poison, is always:

And your mood, how is your mood and how are are you coping?   Well I know you have other patients today so I’ll keep this short. - Is that a smile I see?   My mood is good, very good, and gets better when these questions are over!  - I’m staying positive, despite the lack of Jolly Ranchers.  So far I'm coping reasonably well, and as I have so many holiday days left to take, I'll be finished work on 13th December until 2nd January, and I'm coping very well with that!  0 scored here, but with a warning of a -1 if I’m still as cheeky next week.  Me, as if!?

She also checked back through all the previous weeks before she left and awarded me a Gold Star for maintaining my weight.  While I'm very glad to hear that and be awarded a Gold star, I couldn’t possibly accept this award for myself, so I accepted it on behalf of everybody who has helped with this achievement thus far.  Therefore. I'm awarding big giant 0 to everybody who has made me dinner, brought me out to lunch, brought food for the freezer and supplied biscuits and chocolate.  Thank you all very much and congratulations on your achievement.  Obviously Fergus has some work to do here, but we won’t mention that. -1 for him.  

I'm just warning you all now also, that because I’ve been enjoying the company of my couch, Netflix and Sky Movies so much lately, domestic standard have slipped.  When you come to visit me from now on, you will have to wash your own cup and make your own coffee!  But don’t worry, I can update you on the plot of the latest movie, from the couch, while your in the kitchen.  

I’ll be scoring you on your results, while you’re counting the days till this is all over...

Complaining...

No 6 done and dusted, heading for halfway now.

Nothing special about today, just another treatment Tuesday, well apart from the fact that it’s Tall Kevin’s birthday! Imagine, 28 years ago I was in hospital on this very day for a very different, much happier, reason.  28 years ago, and it was actually a Tuesday, that was before Tuesdays were Toxic, the years go by so quickly.  Happy Birthday Kevin!! 

Poor Kevin had to get up early, miss his breakfast, scrape ice from the car windows, battle the horrible early morning traffic, be late for work, all just to get me here on time.  Which he did.  All done in the style of the guy from the Black Magic Ad, with no complaining.  And, after all that, I forgot to give him his present before we went out. Not much of a birthday for him!  Lets just hope that next year normal services will be resumed and I’ll be able to make again that chocolate fudge cake he likes so much for his birthday. This year we will have to improvise! I’m still working on that...

And speaking of working they made me work here today too. I had to visit every department in the building.  The nurses decided that I hadn’t seen enough of the place or used every hi-tech machine that they have here, so they sent me for an ECG and a chest X-Ray, which were of course at opposite ends of the building.  Oh well I suppose it got my walk in for the day while I was at it.

Luckily, they found a heart, and more goods news, it’s working fine!  So,I got my treatment as usual, and it all went well.

I’ve been thinking about that word ‘treatment’.  Every time the nurses say they are ordering my ‘treatment’ I get a little glimmer of hope. I hope they are going to give me a list of Spa treatments that I can choose from. But no such luck. 

I would say, I shouldn’t complain, but when I come in here they tell me that I should complain!  Complaining is good, they want to hear all my complaints.  Well since they asked, I proceeded to complain to them about the trouble I had last week, trying to choose a coat for the winter, and how I dragged my long suffering friend around every shop in the shopping center until I found the exact one I wanted.  I complained too how every coat I tried on didn’t fit me right, was the wrong color, was badly made, was the wrong shape, was too long/short, had too many/few buttons, wasn’t quite the right style, didn’t quite suite me, or, worst of all, didn’t match my wig!  One of the nurses tried to interrupt me so I had to explain to her that it’s very important that your coat matches your wig, as you will be wearing them both together!  I didn’t make it easy for my friend either, as the list of specifications for the coat I had in mind, were the complete opposite of the one I eventually bought.  She did a great job of not looking bored, or complaining or wanting to kill me when yet again I discarded another coat that was exactly the kind I was looking for.  She did have to go home afterwards and lie down with some Dolphin singing or Whale crying or Ocean sounding soothing music in the background, and she hasn’t been seen since!  Again the nurse tried to interrupt me, but I explained that she shouldn't worry, my friend was fine, that she always feels better after the whale music and a bottle of wine.  Anyway, I was delighted with myself and my ‘completely different to anything I usually buy’ purchase and went home and hung it it the wardrobe, dreaming of the day I could give it it’s first outing.  Then, later that evening, (insert some scary music and a look of shock horror), a certain, much younger girl, appeared in my house, and yes you’ve guessed it, she was wearing the exact same coat!  What are the chances?!  (Well I did buy it in Pennys, so the chances are high!).  Poor Kevin, he’s having a very bad week, he didn’t know how to cope with his gf and his mother parading around the kitchen in the same coat!  The nurse succeeded in interrupting me at this point but not before I told her that the only way you could tell the two of us apart was the fact that she, the much younger gf, has hair!

OK, the nurses didn’t believe me about the hair either.  They finally managed to have their say and explained to me in polite one syllable words, that that wasn’t really the complaints they were talking about, and in future I should stick to medical complaints.  Jeez, they’re never happy!  It’s a shame too, as I’ve loads more shopping complaint stories, I was only warming up, and they really would have loved the one about the boots...

On the way out I met NM, she said it was goo to see that I was still smiling.  I didn’t tell her that that was an involuntary grimace of fear at seeing her!

So, after an exhausting day sitting around being poisoned, Birthday Brownies were the best I could muster.

Surprisingly enough nobody complained!?

Oh and I need to do some Christmas shopping, so who’s free?