Mambo No. 5

Well I’m not exactly doing a Mambo, but I am doing treatment no. 5.

I’m getting extra special treatment today for some reason.  I’m in the lap of luxury here on a bed.  Normally I have a big chair, like a dentists chair, but without the goggles and the white light shining into your face and the horrible rinse stuff and the noise of the drill, and of course without the dentist!  The chairs here are adjustable several ways and very comfortable, but not as comfortable as this bed.  I usually spend ages maneuvering the chair to suit my small legs, as the person in it before me always seems to have been six foot or over, but today I can just stretch out and relax, without any adjustments.  I have a cosy blanket, supplied by a thoughtful friend, (thanks Joan!) and a heat pack, supplied by a very caring nurse, for my freezing hands.  I’m looking out the window at a miserable day and thinking how lucky I am to be inside, even if I am in this place of torture where I never want to be.  Groundhog Day is almost a pleasure today.

All going well here again today.  Good blood results, good temperature, good vital signs and I even managed to escape a visit to the chairs and the grumpy man in the suit.  Result!  My fitness levels are good, for my condition, and I’m even keeping up with my Pilates classes.  Now before you go throwing accolades and bouquets at me, I have being doing Pilates for a while now and even tho I had progressed up the levels a bit, I am back in the beginners class now and I only do half as much as the other beginners.  (Only throw half the accolades).  I’m always glad when the instructor tells us to lie on the mat, a good excuse for a sleep.  I’m not so glad when she makes us do exercises that involve bending over, as I’m always fearful of loosing my hat, that wouldn’t do, I wouldn’t want to frighten the rest of the class.   

Sometimes too, I feel like a bit of a fraud when people offer to do things for me, because I do feel well.  I feel especially fraudulent when one very good friend helps me with chores round the house (I won’t mention any names, but you know who you are Phil!) which is really great.  Although saying that I don’t recall ever feeling like a fraud when people offer to make me dinner!  Ha!  So there you go, if it wasn’t for this annoying cancer I’d be in great shape!  Well for now anyway, I know at some stage I will get more tired, and then I will definitely appreciate all the help I can get.

I sent quite a few people down memory lane last week with my story of the grotesque head.  It’s amazing how many people were dragged to see that on a day out from school.  One school friend also reminded me that we were dragged into the Convent from time to time to ‘pay our respects ‘ to some poor Nun that had passed away.  No wonder I don’t remember anything from school, the trauma of visiting dead people has erased all I learnt from my working memory.  Well, that’s my excuse and I’m sticking to it. 

Since I’ve started posting the ‘live coverage’ of my visits to NM on Facebook, quite a few people who I’d lost touch with have been back in touch, through several different mediums.  And, this week I even received a letter.  Yes, an actual letter, in an envelope, that was delivered through the letterbox, by the postman, much to Rustys annoyance.  It didn’t just appear in my email inbox, or through Messenger on Facebook, or by WhatsApp, or by smoke signals, or by somebody shouting down the stairs at me (which, by the way are all great ways of getting in touch), but somebody actually sat down and wrote to me.  How nice was that?  That’s the bar set very high for the rest of you lot!  

Of course, receiving a letter like that, means that one has to reply, which I will do, with pleasure.  I wouldn’t think twice about sitting down at the computer and typing an e-mail, but I will have to sit down and think about writing a letter, in my best handwriting, without having the use of the delete button when I make a mistake or being able to add in when I’ve forgotten something.  Jeez, that really is a high bar to get over, I’ll have to think about what I’m going to write before I actually write it.  Of course, hand writing something on paper also means there will be no spellcheck... yikes!  Please refer to my traumatic school days as an explanation of my terrible spelling.

My weeks now are becoming a pattern.  Starting with Toxic Tuesday, running into well enough Wednesday, then comes tiredness Thursday followed by falling over with exhaustion Friday.  Wait and see weekends turn into marvelous Mondays when I actually feel like a human again.  Only to be followed by Toxic Tuesday and so on and so on.  But in the grand scheme of things I am getting through this process, so far, I won’t say with ease, but with very little in-ease.  I’m trying to keep everything else as normal as I can and I work every day, except for Tuesday.  Although my productivity levels are nothing like they used to be, and I’ve had to install a pillow on my desk for when I actually fall asleep over the keyboard.  Lucky nobody sees me, and the bleep when a message comes in from a colleague usually wakes me up.

I feel good enough today to do a Mambo, if only I knew how.  I could look it up I suppose, but first when I get home,  I think I’ll have a few minutes on the couch...

A hat trick!

Well another good day at the office.  All went well, bloods were excellent, and treatment number 4 has been successfully administered. That means I’m one quarter way through my treatment.  I thought I might have gotten away with having to run the gauntlet of chairs this week, but no, I had to have my 10 second interview with the Professor to see how I am doing on my new low dose.  My mission next week is to get it down to 9 seconds.

Thanks to you all for reading this blog, I have had some very nice feedback on my ramblings.  One person reading, that I don’t know very well, said they were enjoying coming on my ‘journey’ with me every week.  I feel l should be on the X-Factor after hearing that and should have a good ‘back story’ in case I need it (talent is not compulsory!).  It made me think tho.  I don’t consider this a journey.  To me a journey is something that you discuss, plan, book and then eventually go on to enjoy.  And while there has been plenty of discussion about this, I certainly didn’t plan it, and I can’t exactly say I’m enjoying it.

My school colleagues will remember those terrible school tours we used to go on when were were small.  All squeezed on to a bus, with our packed lunches, the Nuns doing a head count every five minutes in case one of us had escaped, and keeping a close eye on us in case we enjoyed ourselves too much, and the bus driver singing ‘40 Shades of Green’, while keeping the bus at a steady 30 miles an hour, a bit like Keanu Reeves in Speed, without the bomb on board of course.  Although there may have been an explosion (by a Nun or a teacher) every now and then if somebody stood up when they shouldn’t have or said are we there yet?!

On one of these auspicious occasions, we went to visit Oliver Plunketts head.  Yes you read that right, there is a head, in a glass case, in a church in Drogheda, of a man called Oliver Plunkett.  Actually he was a Bishop, and was hung drawn and quartered by the English, for being a catholic, in 1681.  As they did.  For some bizarre reason his head traveled afterwards firstly to Rome, then to Armagh, and finally landed in Drogheda, where we as young and impressionable school girls were brought, by the Nuns, to see it on a school tour.  Sometimes my head goes places too, generally more exotic destinations than Drogheda, but usually my body goes along with it. 

On mature recollection this may have been the best tour that I was brought on, but that’s probably because I can’t remember any of the other places we were brought to.  Maybe I have erased them from my memory as the trauma of remembering them is just too much. 

I have heard recently of a trip to Edinburgh that I somehow missed, which sounds fascinating, something about a Scottish mouse, which turned out to be a rat, brought home in somebody's school bag.  Excitable teenagers caught between mounted police and rival soccer fans, sorted out by the Nuns!  This sounds like great material for a separate blog, but that's for another day when I find out all the gory the details. 

But even as I scoff at the memory of the head in the glass case, I still think I would rather be going there than coming here every week. Coming here is like Groundhog Day, of a school tour to the Holy Stone of Clonrichert!



So if it was all about the hair last week, then this week it’s all about the hats!

While I have several: 



I just can’t seem to get one to fit me right. I like this one, it’s kinda sparkly and quite versatile. I can have it three ways.   A hat trick!

1920's lady with Pearls!

as 'Winnie' (Mrs Browns friend)

Turn it inside out as a swimming cap!

(Sorry abut the terrible pictures, I can only blame my phone, or the subject material I have to work with)

But usually. mo matter what way it starts out, the hat ends up like this:

I didn’t realize I have such a skinny head, as it was always generously covered with hair up to now.  All the hats I have are slightly too big and end up slipping down over my face over time.  So I have set my sister a task.  She knit this hat, which is a perfect fit.

But unfortunately it's made from real wool and it's too heavy and I can’t sit about in it all day as I get too warm. So, her mission this week, is to find bamboo wool, a very soft light wool, to knit me a lighter version (or versions!) of this hat.  No pressure Deirdre!

I still can’t get used to my new look.  I’m like Sigourney Weaver in Alien.  Except I’m more Alien then Sigourney!  I get a fright every time I look in a mirror.  I’m thinking of turning all the mirrors in the house around, so that I don’t see myself if I walk by one.  Luckily I work from home and don’t have to think about what hat will go with what clothes I’m wearing every morning, and if I’m in the house on my own I don’t bother with the hat, I go bare headed.  Such a rebel!  I have to make sure I have a hat handy tho, as I don’t want to answer the front door and scare whoever’s at it! 

I’m sure I will get used to this look eventually and come to accept it even, but I’ll never like it.  Never!!

I’m sure Oliver Plunkett would LOVE to have my problems...

Good and bad (but no fake!) news.

Well Toxic Tuesday was a good day.  My blood counts were so high they were as good as the counts I had before I started my treatment.  That great result I’m putting down to the exceptional treatment I received at the hands of Team Redmond (Marian and Tony), over the weekend in Rosslare.  In some ways Marian was a bit like NM, as there were a lot of rules.  Like, I had to stay on the couch reading and relaxing until I was given permission to move, I had to eat dinner when it was put in front of me without having helped to prepare it, I had to avoid the washing up at all costs, I had to watch whatever I wanted on the TV, and off course, the worst rule, a walk on the beach, which was mandatory.

And here I am on that beach, somewhere under the rainbow.

It’s hard to believe that about 5 minutes after that picture was taken, the heavens opened and we were soaked through.  We had to dash back to the car with two delighted wet dogs running alongside us. You often hear people saying here in Ireland, “sure a little bit of rain will do you no harm”.  Well that certainly was the case, as I came home from the weekend as right as rain!

So, back to reality, before I had my treatment on Tuesday I had to see the Oncologist.  When the time comes, the nurses issue instructions to ‘wait in chairs’ to see him.  For some reason I find this very funny, and there’s a complicated sequence of ‘chairs’ that I can’t figure out so I just sit anywhere and wait till I’m called.  While I was waiting the lady beside me remarked that this was like waiting to see Santa Clause.  What?  Jeez!  What sort of a childhood did this poor woman have?  Now, I don’t remember going to see Santa Clause myself when I was small, I may have, I just don’t remember, but I do remember bringing Tall Kevin (when he was actually Small Kevin, ha!).  We stood in line for hours with not a chair to sit on in sight.  When we eventually got to the top of the line and it was our turn to go into the grotto, Kevin would announce that he didn’t want to go in.  Every! Time!

Anyway, back to the woman in chairs. I spent my entire time waiting, dying to ask her what sort of childhood she had that the Santa Clause in her world was a grumpy man that administered a bag of poison?  Eventually all the other chairs were empty and it was my turn to see him, now I understood how Kevin felt!  When I went in, I had my list ready, and I politely asked for a new immune system.  He wasn’t amused, he said I shouldn’t be such a greedy girl because the one I have is working perfectly well, so here’s a bag of poison instead.  Next!

Well that was the good news for Tuesday, I had my treatment, all went well, now I’m back to waiting and seeing. Hopefully I’ll have a good ‘blood’ result next week after receiving my new ‘reduced dose’ poison this week.

If Tuesday was a win situation, then Wednesday was definitely a lose situation.

I lost my hair!

Very bad news.

I won’t deny it, it was a hard day.  I didn’t really sleep very well as I knew what was ahead.  But it had to be done. As you know, if you’ve ever read a blog from me before, I’ve written many a sentence about my wild and unruly frizz prone hair, Side Show Bob has nothing on me!  And I have been known to say that I wish I had the courage to be like Sinead O’Connor and wear a tight crew cut.  Be careful what you wish for, indeed!

For the last week I’ve been in competition with Rusty to see which one of us could shed the most hair.  I won! Every time I bent over the sink to brush my teeth, a cloud of hair fell.  Every time I bent over the keyboard to type, a cloud of hair fell.  And as for combing and even touching my head!  It was not nice.  I left a trail of blond hair behind me everywhere I went.  As you can imagine, that was very upsetting.  There have been many tears...

They, as in NM and the other oncology nurses, told me that because I have so much hair, it would take a while for it all to fall out.  Well I couldn’t go on like this, shedding over everything, and as hard as it was to make the decision and as much as it upsets me, it just had to go and have it all taken off. 

The appointment was made, and Michele drew the short straw and came to collect me to bring me to my shearing.  I told her she should bring a rope and a gag, cos I won’t go easily or quietly!  As she uncurled my fingers from round the front door post she told me in no uncertain terms (using a similar speech I gave to Kevin at the entrance to the grotto!) to get in the car, we were going and it was for my own good.  She must be getting lessons from NM too!

I’ll spare you the details.  I left my SuperHero cape on a hook outside the door.  Everybody at the salon was beyond nice, very professional and very compassionate and didn’t seem to notice the wailing and tears.  I think Michele handed out ear plugs on the way in.

I’m not brave enough to show you a picture of me with my new ‘hair’ style.  I do have some left, despite the huge pile of clippings on the floor, and if you look very closely, you'll still see it, but it’s a very tight cut.  So instead of a picture of a bald head, here’s a picture I prepared earlier, of me sporting a wig!

Don’t be fooled, I don’t look that good anymore.  That picture was taken at my first consultation few weeks ago, when I had only had one round of chemo and still had all my hair and a reasonable color in my face. 

I suppose there is an up side to all this having no hair and wearing a wig business.  If I’m going out on a Saturday night, I can wash my ‘hair’ on Monday and just leave it on the stand ready for use.  No more hours of blow drying?  No more frizzy hair when it rains?  I’m struggling to think of more good stuff, cos all I can see is the tight cut.  I’ll be without my hair for a long time as it won’t begin to grow back until I’m finished with NM.  All going well, that will be next March.  So, unlike my hair, it will be a long few months.

Michele is gone home now to divorce Fergus, as she doesn’t want to be my sister in law anymore after my performance today.  I’m also thinking of divorcing him, as he told me I’m now a ‘real’ Brennan with my new hair style (for those of you who don’t know, I have 5 bald brothers!).

OK there was probably was a bit of fake news written in there, Michele was absolutely brilliant and held my hand all the way through the 'shaving' and didn't let me look in the mirror, distracting me with nonsense, until it was all done.  Then we had a hug and only a small tear was shed.   She said I was very brave, more fake news!!

The bit about me being a ‘real’ Brennan is not fake!  Make no mistake Fergus, I will reek my revenge!  When I have the energy of course...

A disappointing day

Hello again.

It's Toxic Tuesday again, it seems to comes round very quickly, so, I was back to the hospital today for another dose of poison.

My routine now is that I have to give blood first, so off I went went to the day ward to see the phlebotomist. On my way in I was given one of these by the very nice lady at reception, who asked me had I see one of these before.  My eyes lit up, as I had indeed seen one before.

The last time I sat somewhere with one of these was in Vapianos Italian restaurant in London, and I was informed that when the gadget started buzzing and flashing, the pizza I had ordered would be ready!  So you can imagine how my hopes went up this morning when I saw this lying waiting for me on the reception desk!  Is it pizza for lunch today?  Yummy!  I can’t wait.

How foolish of me.  The receptionist, looking at me like I was deranged, politely told me it was just programmed to tell me when the nurse was ready to inflict my first round torture of the day.  The blood test.  That was the first disappointment.  All I got when it started buzzing was a smiling nurse with a large needle in her hand.   

When she was finished administering her round of torture, I went down to NM dreaming of pizza that I wasn’t going to have.  After the usual routine of weighing in, blood pressure readings, oxygen saturation levels, of which all of the numbers were very good, I was sent in to sit in my chair and await my weekly cocktail of poison.  One of NM assistants came and sat beside me and went through all my ailments from the previous week.  I listed the usual one’s, tiredness, dry throat, tingling fingers and toes, nothing unusual for a patient on chemotherapy.  She kept asking me were there any more?  Could I think of anything else that may be causing me upset or pain?  Anything unusual at all?  I was beginning to think it was a test and I wasn’t getting all the answers correct.  I felt I should really make some up, just to test her.  Turns out, there was a method to her madness.  She had my blood test results.

My blood results showed that my count in one particular reading was too low.  I asked her to explain it to me, which she did, but I'm none the wiser.  The culprit is the count that is pertinent to my immune system, which was far to low.  So low in fact, that there would be no chemotherapy for me today!  For some strange reason that really upset me.  Imagine being told that you’re not going to be poisoned today. You would think one would be very happy to hear that!  But, for the second time in the space of a couple of hours I was very disappointed.  I know that sounds mad, but I just wanted to get it done and chalk number 3 up on the board.  So number 3 is going to have to wait till next week, when hopefully my blood count numbers will have gone back up.  *Big sigh*.

NM seemed to be delighted to wave me out of her Oncology Suite and her parting words to me were “enjoy your week off”.

And you see, that is the most disappointing thing of all. I actually had a weeks holiday this week, starting today, and I was going to go to New York with some of my family for my sisters birthday (she’s having one of those birthdays with a zero in it, I'm not saying which one!!).  But I am not allowed to fly so my trip had to be cancelled.  They all went off early this morning without me. There’s no words to describe how disappointing that was....

But before they went, my brother-in-law gave me this guy:

His name's ‘Keamo’ and he comes with his own healing crystals hanging round his neck. (I thought those dogs were suppose to have brandy in a barrel around their necks, just my luck to get a crystal!).  So at least I have him to look at this evening.

Happy Birthday Deirdre!  Don’t be too disappointed that I’m not there with you.  I hear they do great pizza in New York...

Thank you!

Me again!  And so soon I hear you say.

Well I know that somebody read my blog last week and took note of my excuses, because the result is that I now have a super little keyboard that attaches to my iPad (which I’m using now) very kindly supplied by Mam and Dad, so that I have no excuses for not blogging!   Thanks very much for that.  So now you lot also have them to thank for having to read this.  Ha!

Well this is not working out well for me, as I thought I had the perfect excuse now for doing nothing. I don’t have to feel guilty for sitting on the couch for hours on end and I don’t have to feel guilty for being grumpy or for not making dinner or for not walking the dog when he demands it, cos I can just pull the ‘I’m sick’ card.   But it doesn't look like I'm going to get away with that, especially in Rusty's case, as has no interest in listening to any excuses that mean he doesn't get round the park...

But I'm not too bad at the moment and I am doing as well as can be expected in the circumstances.  I have two Toxic Tuesdays under my belt now and I just have to get used to the fact that I can’t always do things at the same speed as I used to, and by all accounts I will get slower and more tired as the weeks go by.  I amazed at how quickly my energy levels have already dropped.  I do still have some very good days but on others I feel like I’m either drunk or hungover, without the pleasure of actually having a drink I might add, and that I feel like I'm doing everything in slow motion.  For example, in normal circumstances I’d shout up the stairs to Tall Kevin “I’m just running out to Tesco, back in about 30 minutes”.  (Small Kevin comes with me as he is attached to my bag).  I now have to change that announcement to “I’m just walking in what seems like slow motion out to Tesco, back in about 3 hours”.  And I can’t just grab one of those pull along trolleys and dash up and down the aisles, trying to avoid the people who are not dashing about, because now I’m one of the not dashing about people.  I find I have to stop once in a while and lean on the trolley or against one of the shelves for a minute.   Although I will have to stop doing that in the Wine aisle or I’ll be permanently banned from Tesco!

Rusty, on the other hand, is very happy that I’m slower and that it takes me an hour to get round the park now instead of the usual 30 minutes, which means he gets to sniff thousands more blades of grass and pee on every tree instead of every second one.

They who must be obeyed (Nurse Mary and her band of Oncology Nurses) tell you to keep doing as much as you can as normal, and I’m adjusting slowly to my new pace.

On the clinical side of things, and I won’t bore you with blood counts and tingling feet and the metallic taste in my mouth nor will I mention the large bag of drugs and an instruction manual on their use that I have to have hanging round at all times.  But I will tell you that I have had a port-a-cath line inserted into my chest so that there is no more rooting around in my veins every week to fit a cannula.  It was a strange process all done under X-ray technology.  I had a little plastic gadget slipped in under my skin and attached to a vein in my neck, so now I just get ‘plugged in’ when I go for my treatment.  It’s like being in a science fiction movie, except unfortunately, it’s not fiction.  They told me it's all made from plastic so it won’t set off the alarm bells off when you go through security at airports.  How ironic as I’m not allowed to go to an airport to test it out and it will be removed way before I am allowed to fly again!  But it does make it much easier on me and NM, who I’m actually looking forward to seeing every week now, just so I can plot ways to disobey her!  I do plot, but I never seem to have the energy to follow through on my ideas.  So basically I go in there and do exactly as I’m told, and there's no way I’d get away with doing anything I shouldn’t as they are very good at putting me to sleep.  I think that’s because they know I’m plotting and they like to get the better of me.

In fairness, I am giving NM a bit of bad press that she, nor any of the other nurses that look after me, don’t really deserve.  They are the kindness bunch of people that I have every met.  There are no ‘Superhero’s’ allowed into NM’s oncology suite.  All capes and underpants must be left hanging on a peg outside the door.  They only want people who are human and allowed to feel a little sorry for themselves every once in a while.  I did try that the first day I was in there, but when they saw me upset and then suddenly there were four people in blue scrubs standing around me with concerned faces, I thought I better not try that again!  I mistakenly thought my tears might get me another cup of coffee or an extra biscuit to cheer me up, not the company of four concerned nurses!

Work have been very supportive to me too. There’s no issues with days off, or an hour here and there for a ‘nap’ when I need it.  It’s good to know they are in my corner.  In fact it’s good to know that I have so many people in my corner, family and friends alike, and I’d like to thank every one of them for their support, and all the lovely flowers, gifts, books, cards and words of encouragement that I have received over the last few weeks.  Sometimes it’s a bit overwhelming and I may forget to thank people properly.  I know that they are probably reading this, so a big THANK YOU to everybody, and I want you all to know that I have no favorites, each and every one of you has the same very high status in my book, the one that I haven't written yet!  (But I will add tho’, that I’m especially fond of the one’s that bring food!!)

For those of you that I haven't seen for a while and were confused about my last post, I should have mentioned that I have breast cancer.  

For now, my mood and the pea soup (the brain) are in good shape.  Let's hope that they don't get diluted or too toxic over the next few weeks....