Undercover.

I’m back! And it’s not Tuesday.

Apologies for my short absence but I was actually undercover.  Either under the cover of my duvet, or under the cover of a blanket on my couch.

It’s been nine days since I had my last chemo session (sounds like I’m at an AA meeting!) and I haven’t been outside the house since.  Imagine!  I had round one, of four, of a new cocktail of poison called A/C, the abbreviated name for Adriamycin and Cyclophosphamide.  Who makes up these names, and do they make them so difficult to spell on purpose?  I have chemo brain (according to my nurse it's well documented so I'll be using it as an excuse for everything now!), so it’s a challenge to spell my own name, never mind one of those far too long drug names.  One lot was bright orange color and one was the usual clear color, I don’t know which was which, but I do know, that unlike the Taxol, I felt the after effects as soon as I got home.  They knocked me for six. I did ask those in the know what do these drugs do to the tumor/cancer that the Taxol didn’t and the only answer I got was that they do the same thing but they work in a different way.  So I’m none the wiser. I can only equate it to what I know, an engine perhaps, you can have a diesel one or a petrol one, they both do the same thing, but work in different ways.

I had been warned that I’ll be very unwell after receiving these drugs but it still took me by surprise, and along with the surprise, I also have a whole new regime of anti sicknesses drugs and steroids to take.  Plus, on top of all that, I have to inject myself with an immune boosting drug 24 hours after receiving the chemo. Yikes!!  No rest for the wicked! I must have been very wicked....

So, this injection, the day after the chemo the hospital sent a nurse out to show me how to administer it. Apparently it’s easy to do and I should be able to manage it myself.  (NM told me she only ever had one patient who couldn’t manage to do it and she had no intention of having that number go to two!)  Yikes.  No pressure. The nurse was great, she had a ‘dummy’ needle kit which we practiced with and I was able to manage with no trouble.  I had to practice with the sharpsafe box also and I was able to manage that too.  But, of course, when it came to actually sticking the real shiny pointed very long menacing looking needle into myself, I just couldn’t do it. Epic failure.  Don’t tell NM, my name will be mud!!  Just as well I’m not really one of those investigative reporters that has to do all this sort of stuff, I’d definitely be sacked.  Anyway, the nurse did it for me and she has to come back next week and go through the whole process again.  Fingers crossed I’ll be braver the next time. I’ll have to be, 'cos she won’t come back a third time.

It’s not all bad news though, I’ve finished work for the foreseeable future, so I’m a full time patient now and I have an army of carers lined up to look after me over the next few weeks.  Just so they know in advance, I got one of NM’s score cards and I’ll be marking them on their performance, for example, who makes the best coffee, who makes the best soup, who makes the best dinner, who makes the best cake, who picks the best stuff to watch on TV and of course who entertains me with the best gossip.

My big sister, Deirdre, headed up the first delegation of carers aided and abetted by a visiting from London brother, Ciaran.  A big thank you to them.  Between them they were able to cater to my every demand, which were many and insistent. Score cards have been updated and the next lot of carers be warned, the bar is set very high for your shift.  Although Deirdre said she wasn’t coming back again unless I stayed where I was supposed to, as in, on the couch! 

Rusty would like to thank Patrick, my nephew also visiting from London, for taking him round the park every hour.

In other good news I managed not to have to use the vomit (too much information, sorry!) basin that was my best friend for the first few days.  It was a very good friend and followed me from the couch to my bed and waited patiently by my side, even though I ignored it and then casually tossed it aside when I knew I didn’t need it anymore.

And speaking of being cared for, I am the recipient of yet another lovely care package.  This one came all the way from the Black Forest in Germany (thanks Gabrielle!), I only hope I’m not too sick to eat all the goodies inside.  I wont be cold either with the also enclosed Dr Who Tom Baker style scarf! I think you have a challenger for the knitter of the year title Deirdre.

There’s no denying it was a tough few days, so tough that I hadn’t the strength to write, but I got through them, I’m here to tell the tale and I’m still in good form.  Hopefully my immune system will have recovered enough to go thought the whole process again next week! I know that sounds mad, wishing to be well enough to be poisoned all over again, but it’s one step closer to the finish line, so fingers, legs, eye, wires crossed for good blood results on Tuesday.

It’s hard to believe that I’ve been so undercover that I haven’t been outside for over a week, I’m really looking forward to going outside again, even if it is only for a trip to the hospital, but until Tuesday, I'm staying undercover(s).

Rogue reporter.

Good evening.

This is the editor of the Toxic Times.  Our normal Toxic Tuesday reporter hasn’t arrived at work today, so there will be no piece by her in todays publication.

No need to panic, we did get a garbled message from her, something to do with a rogue nurse, a double dose, a couch and a basin at the ready.  As she is on an undercover assignment we’re not fully up to speed on all the details and not quite sure what she means, so we can’t comment, but she did assure us she was OK and would be back at her desk next week.

We’d like to thank you on her behalf for your continued readership.

The Editor

A not so bad day.

Well reality has finally hit home. I’m definitely feeling the effects of the build up of the chemotherapy in my body now. 

As you may know, I can’t drive myself to or from the hospital, so that’s Tall Kevin’s job.  When he’s unable to, for some reason or another, I have a group of reserve drivers on standby.  Dad is on this list, and was the designated bring me home driver for today.

The last time Dad collected me I didn’t have any treatment because my bloods were too low.  Well, he’s officially off the list for collecting me now as, yes you've guessed it, I didn’t get any treatment today either!

I got a very bad score today in my assessment.  The questions I usually answer yes to, I answered no to, the questions I usually answer no to, I answered yes to and the questions I usually answer sometimes to I answered all the time to.  But I suppose I shouldn’t complain as I’ve gotten far without too much trouble.  My fingers not working properly, not my bloods, were the catalyst today.  The little bit I could do around the house is getting harder and harder to do and I keep dropping things, so I had to admit this to the nurse today.  I’ve already dropped the lid of my butter dish and broke off the little bird that sits on the top which is actually the handle.  Luckily Dad is handy with super glue (I’ll keep him on the list for those sort of jobs) and had it back together in no time.  But the most annoying thing about having butterfingers (ha!) is that I can’t take the wrappers off the sweets I’ve become addicted to.  Once the nurses heard this, that was it, I was marched straight in to see the grumpy man in the suit, and after answering all the same questions that I answered for the nurse, he declared that I’d had enough!  Enough Taxol that is, not sweets.  Phew!

But I suppose that would have been the worst thing that could happen, not eating sweets that is, as I don’t want my teeth to fall out from all the sugar in the sweets and as I’ve already lost my hair, if I also lose my teeth I may as well change my name to Healy-Rae and move to the Kingdom!  

I’ve no idea how quickly the feeling will come back into my fingers, so the next person that comes in and asks if there is anything they can do for me I’m going to get them to take all the wrappers off the sweets.  Priorities!  And of course it’s always better to be prepared for emergencies.

So the upside to this is that now I will be getting the A/C combination drug two weeks earlier (which doesn't cause peripheral neuropathy), and all going well, this means I’ll be finished with NM earlier than expected.  Result!  By coincidence I bumped into her while I was waiting for the lift.  She was very concerned that she got it so wrong with my skin, which has erupted fiercely over the last couple of weeks with psoriasis, and she’s gone off to see how/if she can fix that for me.  So I suppose she’s not the worst after all.

I’m also going to have to think about reducing my working hours.  The nurse in the dressing clinic, where I go to have my port connected and my bloods taken, was amazed that I’m still working and gave me a dressing (sorry!) down and a stern talking to about ‘looking after number one’.  I was too tired to argue with her and I suppose she does have a point.  So having the A/C a couple of weeks early is also good from this point of view as I had told my work colleagues that I probably wouldn’t be able to work whilst getting this much stronger combination.  I’m struggling with fatigue too, and it’s going to get worse over the next few weeks, so cutting down my hours or stopping work altogether will happen sooner than I expected also.  Apparently everything else is going to get worse too, nausea, mouth ulcers, pain, so it may seem crazy to be happy that the A/C is starting earlier than expected, but I am just happy that it’s going to be over earlier than expected.

An other side effect of the A/C that doesn’t happen with Taxol is the small chance that it can effect your heart.  So I was trotted off today to have an ultrasound on my heart.  I found this fascinating.  I would have stayed there all day asking questions and watching the pictures of my heart working away.  The radiographer doing the scan was great and explained everything as we went along.  It reminded me of the lesson we had in school when we had to buy a pigs heart from a local butcher and bring it in and dissect it.  My one overriding image memory of that day is the Nun (I can't remember her name but no doubt Irene Kenny will!!) with her hands dug into the arteries of the pigs heart and rummaging around to her hearts (ha!) content.  Yikes!  My imagery for today is way better, and much more hi-tech and everybody's hands were where everybody could see them!  They will never give you results while doing the scan, but she did indicate that everything ls looking good and my heart is in good shape.  Lets hope it stays like that!

So all in all, what could have been another disappointing day, turned into a not so bad one.  

And, as an added bonus, it's Cian's birthday today, and he is here, so we had cake.  A perfect ending!

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!