Saturday 14 January 2012

Monday, 9 Jan 2012 – No Nodes is Good Nodes?

Monday morning, we got in the car, buckled up and said loudly “Southend Hospital please” – we both expected it to drive itself there, but, it’s had a week off between visits, so maybe it forgot the way, Alan had to drive instead.  Yep, I am still not back behind the wheel (keep your comments about the roads being safer to yourself please Kevin!)   My arm is playing up again and I think I have a touch of “cording” no I’m not going all arty crafty – it looks like a rope going from under my armpit, along the ole bingo wings down towards my elbow.  I have been doing my exercises – promise – but the beggar still got me.  I’ve increased my reps and also did some ironing (it’s ok, I checked the Do’s and Don’ts chart first) in the hope I can stop it in its tracks.  My next physio appointment isn’t until the 23rd and I’m hoping to be signed off (I’d like to save petrol!), but will have to wait and see now. 

Anyway, back to the day in question.  This was the day of my SNB results – remember?  Our meeting with Casper was booked for 10.00, so naturally, with Alan driving, we were there just after 9.15 !!   (Bless him; you have to respect his eternal optimism).   I was nervous of what Casper was going to say (although I already knew deep inside – my inner voice and I had been having quite a chat).  Two hours later numb bum syndrome was beginning to set in and we’d read the paper and watched Homes Under the Hammer (thank goodness they can’t get ITV on their telly – Jeremy Kyle and his gormless, toothless, feckless guests would be enough to depress SpongeBob Squarepants – let alone a bunch of women sitting in a breast clinic).  Other people in the waiting room were beginning to set my teeth on edge.  There was a couple sitting opposite us.  Both were reading, he the paper and her Private Eye.  She was sitting with her head on the side, like a bird and kept putting her glasses on, taking them off, sticking the end in her mouth and chewing it, pointing out funny bits on the page to her husband with the wet end (I mean the wet end of her glasses, not that her husband had a wet end – oh I am getting myself into trouble here – you know what I mean) and guffawing – loudly  - it really bugged me.  She did this over and over again.  The result was that I felt like snatching the magazine off her, rolling it up and smacking her over the head with it whilst shouting “read-it-to-yourself-stupid-woman” and I’m not usually a violent person. Honestly, I swear I have never attacked a stranger with a rolled up newspaper before, no matter how annoying they were – she had a lucky escape when her name was called, I can tell you.  Then the next village idiot arrived.  The row of chairs behind ours was empty, in fact the whole clinic was quite empty, we had a row to ourselves - so I am not sure what the delay was today.  A woman decided that out of all the empty chairs in all the empty rows (do your Humphrey Bogart impression here) she would sit on the one right behind meWhy?????  It’s like when you go into public toilets, I hate them and, if possible, always choose the stall where there is nobody either side.  Then, you hear someone come in, now sometimes you are the only person in the place – but this woman chooses the stall right next door to you – again - Why?   Once this happened to me at Bluewater Shopping Centre – there are about 20 stalls on each side of the room in their posh toilets.  On this occasion, I was the only person in there and wasn’t feeling vey well (it’s ok, I’m not going into detail – don’t pull that face).  A woman clip clopped in and I could hear her getting closer,  I seriously could not believe it when she chose the stall right next door to me.  Well I couldn’t help myself and before I knew it or could stop it, I was yelling out “what’s the matter love, do you get lonely”, funny enough she didn’t reply!  But I felt better. 

Anyway, back to this woman now sitting behind me.  She kept moving about in her seat, which in turn bashed into mine, bumping me forwards and back.  I “ahemed” a few times, I think I even growled at one point, I know I definitely muttered under my breath (Alan just rolled his eyes at me, as usual) – finally I made a big show of leaning forward to get my bag and bumping back into my chair thereby knocking hers – the bloody woman had the audacity to tut at me!!! Oooooh I outta…  Looking back, I think I was stressed – yes; I’m sure that was it.   These things would probably normally irritate me but not to the point where I feel the need to commit an act of violence with a rolled up newspaper.  I blame the Cancer.

Ok, so there we were waiting, we do a lot of this these days.  Finally my name was called and in we went (giving my chair a little shove before I got up though – revenge, a dish best served cold – or when you are making a fast exit).  We were shown into the exam room next door to Caspers office and I had to put one of those pink gowns on, so he could have a look at the wound site and the offending boob.  I had a little giggle though as Alan was sitting opposite me and I noticed he couldn’t watch – I suppose sitting there holding your wife’s coat whilst some bloke (even though he is a Doctor) pokes and prods your her boobs can be a bit err awkward!  I hasten to add that I don’t usually let strangers touch my boobs or anywhere else for that matter.  My mum taught me all about those kinds of people thank you very much!  Casper was happy with the way the scar is healing so told me to get dressed and follow him through to the office.  As we sat down, I think his exact words to us were “Now, Deborah, have I ever given you good news at all whenever we have met?”  Well, yes I said and reminded him about the clear PET and CT scans – he seemed relieved and said that yes that had indeed been a good day.  “However” – oh I knew what was coming next – it was going to be one of those conversations that make me want to run for the hills.  He told us that he had taken six of the nodes (Lymph Glands) and that one had been quite big.  He had marked it up separately and asked the lab to pay particular attention to it as he thought if it had spread anywhere, it was most likely to be that one.  However, it was clear.  The Git had snuck into the smallest node he took and was miniscule, microscopic even, but this bit of news means that I still have to have full node removal when I have the mastectomy.  I asked him if it meant it could be in other lymph glands elsewhere in my body and the answer is yes.  But he reminded me that I am in treatment now, so any odds and sods (for want of a better description) are being killed off as I type – cue Pac Man music here.  I wasn’t totally shocked, as I said earlier – deep down, I already knew.  He told me weeks ago that I’ve had The Git for a long time, I have been so bloody fortunate that it hasn’t spread to my bones or other major organs, but I wasn’t surprised it had travelled to the nodes – it does prove, however, that they are doing their job – good nodes.

Then he dropped the bombshell.  The MRI scan – you know the one where I had to dangle my boobs through the two holes and have Oasis blasted at me?  Well, after a quick look at results, the Radiologist had been happy for Casper to proceed with my SNB op on 16 December but was not happy with what he saw in the left boob and wanted a further examination.  There were about three lumps and a larger (5.5cm) mass.  With the history of my right boob this cannot be dismissed.  The news came out of the left field (ha ha ha get it – left boob, left field – no? oh well I thought it was clever) and knocked me sideways.  Within 15 minutes I was having another ultrasound.  The nurses were the same ladies who had been with me at the first scan, one held my hand and rubbed my back as the Radiologist searched for the lumps and mass, it took quite some time.  He wasn’t offish, but his manner was very professional, then when he told me he’d definitely found something not quite right and now needed to do a biopsy, his whole manner changed and he became very considerate and kind as well.  The nurses are always kind and lovely, no matter what sort of news you are getting, and mine continued to rub my back, hold my hand and explain what was happening, whilst the other one patted my leg whenever she walked past the end of the bed.  I must admit I got a bit emotional and the flaming inner body shaking started up again.  You would think I would be used to all this by now wouldn’t you.  Alan hadn’t known this was going to happen – both of us just thought it was a scan – so he had waited outside and I knew he would be worried at how long this was taking.  The first biopsy hadn’t hurt and I had no bruising, but this one did hurt a bit afterwards, maybe last time I was in shock so that’s why.  This time I had pain later in the evening and had to take paracetamol, it’s still quite bruised now. 

Whilst he was taking the biopsy, the Radiologist said to me that he believed the lumps were cysts and that the mass was a fibro-something-or-other and benign but, with my history he had to make sure.  I felt a bit comforted by that after all he sees these things all the time so he should know right?

Twenty minutes later I went back to Alan, who had been getting concerned that I might have found an open window, and explained what had happened.  He was concerned, but took comfort from what the Radiologist had said to me.  We were called back into Caspers office in record time and he said that he could finally give me some good news – I think he was more relieved than we were!  They had both studied the scan and were happy that lumps were just tiny cysts that would go of their own accord and the mass was a fibro-thingy (the radiologist believes he took most of it out with the biopsy needle anyway – maybe that’s why its so bruised now).  He said my boob looked as its expected to look on a woman of my age (cheek) who is pre-menopausal – ie. dense (and here I wasn’t sure if he was talking about me or my boob so I left it at that).  The upshot is that they are sending it away for tests, as a matter of course, but they do not expect to find anything and I am not to worry – yeah right, does Dolly Parton sleep on her back?

So, it was a Good News, Bad News time on Monday.  Poor Alan, I’m afraid Eeyore came for a visit that day.  He tried everything to cheer me up but nothing worked.  We went out for lunch – having spent all morning at the hospital, we were starving and emotionally drained.  I ordered Chili con Carne (which I usually steer clear of if I haven’t cooked it) but, because my taste buds had packed up, I wanted strong flavours to see if I could coax them out again.  Halfway through my meal my blasted coldsore, which WILL NOT HEAL, started bleeding again and I looked like an extra from a horror movie.  I just wanted to go home, curl up and have a “word” with myself.

By Tuesday though Tigger had arrived and kicked Eeyores backside out of the house and I was feeling a lot better.  My best friend, Debbie came for a visit and she bought me lots of different chocolate to see if any would work.  Debs, the 84% Dark Cocoa one did the trick – cheers love!  She also bought me a present of some PINK boots, which have wheatbags inside, you stick the bags in the microwave for a couple of minutes pop them back in the slippers and hey presto – warm feet (she did warn me not to try and walk in them though hmmmm).  We spent the day chatting and laughing about our kids and their latest shenanigans, reminiscing and generally catching up.   The last time she had seen me was the day before my PET and CT scan results so it had been quite a different visit.  Debs left just after 2pm to pick up her kids from school and about 25 minutes later was texting me jokes from the school car park – which when you consider it takes me about 40 mins to get to her house means either she has discovered the secret of time travel or I am a very slow driver ;-).  The only downside to the day was that Hannah was unwell, she is not sleeping because of all this and has a rash all over her head, neck and back – stress, I know.  We have tried everything but are struggling with how to help her.  I took her to my GP who told her to think more positively – yeah, of course that helped NOT – she is 11 years old you daft woman and has just been told her Mum has BC – her little life has been shaken up, tossed about and she has been thrown headfirst into uncertainty – would you think positively???  I ask you.  At the clinic on Monday I saw a notice for a counselor who specialises in helping children and families get through this type of situation.  After all – would any of you know where to begin, cos I certainly don’t.  All I know is that my family seem to be falling apart at the seams and I have to find a way of glueing us back together before I can concentrate on getting me sorted.  I know some people don’t agree with this “namby pamby, touchy feely” stuff but I am here to tell you, I will do whatever it takes to get us through this in one piece and I don’t give a flying fig what anyone else has to say on the subject.  If they suggest we all sit in a tub of custard, wearing paper hats and singing Ging Gang Gooley – we will bloody well try it (well, I wouldn’t go that far  - baked beans maybe, but you get my drift).  First and foremost I am a Mum, my first priority is my kids, not me.  Alan, my children and I have found ourselves, through no fault of our own in a crappy situation that we have no idea how to handle.  We are doing our best but it isn’t good enough at the moment.   I have already met with the lady on Thursday and she made me feel like a great weight has been lifted from my shoulders – and that can only be a good thing right?  The Git doesn’t just affect us, it has had a ripple effect on close family and friends and its bloody awful to watch how it has affected everyone I know, love and hold dear.  If we can sort ourselves out, then maybe it will have a knock on effect for everyone else.  If they see us coping better, hopefully they will relax a bit and therefore they will feel a bit better about this whole horrible, crappy, nasty period of our lives.  OK, I’m off the soapbox now and ready to continue – I did warn you “warts n all” remember.

Wednesday was a Mums Wot Escape Coffee Day – my friends, Tracy, Rachael and I drove to Leigh where we did some browsing and mooching.  Kerry arrived about half an hour later and we met up in Costa.  We spent the morning putting the world to rights, laughing like drains, catching up with each other’s lives and generally having a relaxing time.  When we finally stopped talking we noticed it was almost 12pm so we decided to go to Lunch – yes I know, but we really don’t do this very often and I think we all deserved it.  We moved on to a lovely restaurant called Stop the World – I can highly recommend their Buck Rarebit and Ginger, Lime and Grapefruit Juice – I told you I was looking for strong flavours, and boy that drink had a kick – just ask Kerry – the faces she pulled!  Rachael had the full English as she is doing the Dukan diet – her willpower is amazing and she looks fab (not that she didn’t before but she knows what I mean).  Tracy and Kerry had the Bubble & Sausage – both said their meal was delicious.  Time was getting on and we were stuffed so we will have to have cake next time.  We drove home, arriving about 1pm (far later than we had all planned to be, but time just ran away).  I have to say it was one of the best days I have had since this horrible nightmare began.  The sun was shining, Leigh is right by the sea so quite picturesque, the food was delicious, I had more energy and the company – well that was just what the Dr ordered.  I felt like I had my first “normal” day in a lifetime – Thanks Ladies xx

Before I sign off, remember weeks ago I told you how naïve I was?  Well, here is a prime example.  I have a couple of friends on FB – Julie & Jane, who have been very supportive during this.  Both are ahead of me in this game, one by a year (diagnosed almost exactly a year before me) and one about six months.  I have seen them both mention getting their “Tatts” done.  Now, I have nothing against tattoos, I considered getting one when I was 30 but chickened out (I hate needles remember), then I thought about it again just before 40 but decided on a belly ring instead – yes I know, but I was told it didn’t hurt (it didn’t at first however, when it went septic a month later it hurt like billy-oh - what a waste of money).  Anyway, I thought they were getting tattooss done to celebrate milestones on this journey we are all on. DOH!  At the counseling meeting on Thursday the lady mentioned she had been a radiographer for 15 years and she told me what to expect when it starts later this year.  She mentioned getting my “tatts” done.  Hey, hold your horses – do I have to have a tattoo? Is it part of my treatment plan which hasn’t been revealed to me yet?  What if I don’t want one – help!  I explained my fears and she started laughing  - lots – I hope to goodness she was wearing her Tenna Lady!  She composed herself, then kindly pointed out to me that “Tatts” are small blue crosses/dashes that are inked onto you just before you start your radiation treatment, so the radiographer knows where to line up the x-ray – Ohhh!  Maybe I should be reading my “Radiaton for Dummies” book now eh?

The next treatment was booked for Friday 13 January – a big day was planned at the Chemo Unit.  When booking the appointment, I hadn’t noticed the date at first, so I realised I began to wonder what would that bring?  You will just have to check in for the next installment to find out won’t you!  Laters.

As always, Onwards & Upwards!

Debs x

Friday 13 January 2012

Taxol, Taxol, Do the Paclitaxol (You have to sing this title)...

As usual, the day before my next “ date” I had to make sure I was in tip top physical condition (ha ha ha - forgive me whilst I choke on my Syrup of Figs, 8 steroids, anti gastric tablet and numerous anti-sickness meds….), this means trotting off (oh if only… yes, I am jealous of your bowel movements dear reader)  to Draculas  - sorry, the Drs for a full blood count.  If your blood test comes back iffy then they can’t give you the chemo  simples!  So, with my right arm still being as useful as a one armed trapeze artist with an itchy ass, I had asked my friend Rachael to drive me about that day – I would like to point out she now refers these trips as her “Driving Miss Debbie” duties. 

Stabbed and plastered (a bit like a Saturday night out in Southend), we left the Drs, our next stop being the hospital, where I had an appointment with the Rehab Physio to check up on my SNB recovery.  Despite the setback at Christmas, I am pleased to report that my scar is healing nicely and I have nearly full movement in my arm – yah boo sucks Alan – I told you I was doing my exercises.  The physio gave me a couple of different exercises to include in my routine, which will stretch the muscle a bit and stop it feeling like I have a tight elastic band strapped around the top of my arm.  So, if you spy me “walking up a wall” don’t worry, I haven’t suddenly decided to try out for the new Spidey film, just doing my exercises.

The following day was “D Day” and after my disastrous date with Doce Taxol, I wasn’t too sure if his brother Pacli and I were going to fare much better.   I’d asked Mum to come along to this one to keep me company.   She and Dad picked me up about 10.45 and we headed off to what is fast becoming our second home.  I had my “chemo bag” all packed with enough goodies to keep us going for the day – chocolate, Kindle, wordsearch, slippers, fruit (honest), chocolate, crisps, chocolate, and biscuits  - all that was missing was the Frisbee, the dog and the kite!  (I can supply the wind…..)

My appointment was at 11.30 but I wanted to get there early as I knew I was being “slotted’ in on an extremely busy day and, after the Doce Disaster, I didn’t want me being late to result in yet another missed chance at blasting The Git.  So, Mum and I were dropped off, checked-in and in the waiting room just after 11.00.  Unfortunately, when I am nervous I chatter – non-stop and nineteen to the dozen, and my poor Mum had to listen to over an hour of me prattling on about everything and anything.  So, if your ears were burning between 11.00 and 12.30 last Friday  - you know someone was thinking of you ;-)

Finally the nurse came to weigh me and take me through to The Bridge (remember the space ship analogy here please) to weigh me and order my treatment.  Surprisingly, despite the fact that where food is concerned, I have recently turned into a human Dyson (thanks to the copious amounts of steroids), I hadn’t actually put any weight on – ooh quick look up there - it’s one of those silver lining thingys.  Thank goodness it wasn’t a flying pig – I’d have eaten it! (in between two slices of thick white (yes Dad, I know I should be thinking of my arteries.…) fresh bread with lots of brown sauce)

Luckily a couple of the nurses that had witnessed my previous misbehaviour allergic reaction were on duty, so we had a chat and I filled them in on all the gory details of what had happened over Christmas.  They are a lovely bunch and reassured me they would keep a very close eye on me at this appointment, just in case I misbehaved reacted again. Hmm I think I am getting a bit of a reputation.

Paclitaxol (“Taxol”), my new drug of choice, is given as a lower dose for nine weeks.  The (only) plus point is that I am less likely to lose my hair though it may get thinner, the downside is that I am pricked weekly - ooer Missus!  Also, it can still cause an allergic reaction each time it is administered and it’s for this reason that you are given half an hour of pre-poison meds before the actual chemo begins.  As I haven’t had my PICC line (or my Central, Northern or Hammersmith & City Line for that matter) put in yet, I still have to have a canula put in place before treatment can begin.  This simple procedure took place in the calm manner to which we are all becoming accustomed.  The nurse tapping and flicking my arm, trying desperately to find one of my “rubbish” veins (this time she admitted defeat and resorted to a heat bag to try and coax the buggers to the surface) and my normal laid back response: feeling faint, going pale, singing to myself and going to my “happy place”  - all the time praying I don’t conk out or throw up on her mid stab.

Finally, after much sweating (me, not the nurse), it is done and I am plugged in.  Let the fun can begin…..

First, I get a bag of saline to hydrate me – this is despite the fact I have been drinking pints of water all morning and am peeing for England – see I may not bother with the instruction manual for my phone or the DVD player, but I do read my “what to do before chemo” notes.   Next to go in is Mr Piriton  – within minutes I can feel my eyes getting heavy and I know that my speech is slurring – giving Mums poor ears a much deserved rest – I swear I heard her sing the Hallelujah chorus.  Then came the steroids (quick lock the fridge…..) then finally anti- sickness and anti-gastric-something-or-other (this one protects my stomach).   After this delicious liquid Appetiser they served the Plat de Jour – Taxol, which was started on a very very slow drip the nurses then stood back and wait for the fireworks…..

For the next hour or so I was subjected to constant calls of “you ok Debbie”, “feeling ok Debbie” and “any reaction Debbie” from every passing Dr, nurse, HCA  - even the cleaner got in on the act at one point.   Mum, meanwhile, sat at the end of the bed pretending to read but watching me like a hawk - just in case I turned a funny colour, passed out or generally started misbehaving in any way.  After reassuring her that I was fine and not planning on doing a runner or causing a scene she finally left to take my prescription to the pharmacy and get herself some lunch and a much needed breath of air.  

I’m not sure if I have mentioned it before, but they give you (the patient) lunch whilst you are having your chemo.  You can have soup, a sandwich (or both), some fruit (freak!) or a Kit-Kat (Note: thanks to my friend Nikki who told me to look out for this little perk).  On this day I chose a Kit-Kat – well who wouldn’t – and happily munched away on it.  Mum returned from her lunch and I remarked that due to the heat on the ward, my Kit-Kat had melted all over my fingers..  Now, there I was hooked up to IV(y) – trapped, unable to escape - helpless.  Mum took a tissue from her bag, licked it and wiped my chin and my neck where the chocolate had dripped.  The woman in the opposite bed and her friend nearly wet themselves laughing and called out “only a mum can get away with that”.   Honestly, I am going to need years of therapy!

I am happy to report though that Taxol and I got on like a house on fire (the fact that it has left a 2 inch burn mark on one of my veins is testament to that – the official name is Phlebitis – your word of the day) and we have arranged to meet once a week for the next 8 weeks to give the relationship a real chance of success.  Of course, what Taxol doesn’t know is that I am going to continue to meet up with Herceptin every three weeks – just to keep my options open you understand! Chemo Tart I hear you cry!

The nurses were keen to avoid an allergic reaction this time and it was agreed the slower the drip, the better the chance of acceptance, so it took three long hours to administer Taxol on this first occasion.  Finally, at around 6pm I was unplugged and, as Dad was at work, we called my youngest sister Kate who came to collect us and take us home.  Her timing was perfect and she pulled up just as we left the building.   Whilst I had been at the hospital my friend Tracy had been a busy lady.  We arrived home to find that, not only had she taken delivery of my new sofa, but she had also cooked us a lovely meal.  I cannot stress enough how much that was appreciated.  Not having to cook or even think about cooking that evening was such a bonus – thank you Tracy.  Hannah had been collected from school by my friend Kerry who had fed, watered and entertained her and she was brought home later that evening having had a lovely time – so my thanks to Kerry and her family too.

Over the weekend the side effects started to make themselves known – the worst of which being a loss of taste.  Now, I can accept the tiredness, possible early menopause and hair loss – but to not be able to taste chocolate – well that’s just NOT ON!  Gradually everything lost its flavour – even water (I promise you), mind you, I’ve yet to try the chewing gum I stuck on the bedpost overnight!  I can only describe it as though the inside of your mouth has been covered in a layer of lard – disgusting eh?  Why don’t you give it a go and see what I mean – no – didn’t you realize this is one of those “virtual blogs”? Okay then, you will just have to take my word for it.

Sunday was Hannah’s 11th Birthday, she had asked for a party but, obviously we’d had to explain that I might not be up to entertaining a dozen 10/11 year -old excited girls.  I’ve promised her a BIG party next year to make up for all the crap she is dealing with right now.  Errr on that note, if anyone is friends with the guys from The Wanted, can you ask them if they’re busy next January please (I blame chemo brain for the daft things I am saying at the moment – it’s ok, maybe she won’t remember……). 

Each year we celebrate her Birthday by going to the Panto at the Cliffs with all the family, but this year, due to Shane Ritchie’s commitments to DeadEnders, (ah poor old Pat – I think Roly killed her), the run had ended on New Years Eve.  Therefore, it was arranged that the family would come over to our house instead to celebrate.  Unfortunately, Alan’s mum was taken poorly the night before and one of my sisters, Gill – she of the witty comments - and her family live “Oop North” now, so they were unable to attend in person – we did Skype however and a delighted Hannah got to see her baby cousin, James.  

Everyone else came though, Nanny, Dan Dan, Auntie Kate, Uncle Kevin, Auntie Trina, the whirlwind that is her 2 year old cousin The Fredster, Donna & Sian.  We did the candles (twice - so Fred could blow them out) and the cake, she got lots of presents – the doorbell was going all morning with friends dropping off cards and gifts.  After everyone had left we took her out to a local pub/restaurant for dinner – where she ate THREE desserts – I’m going to have to count my steroids.  So, all in all, she had a very happy and lovely day.

Over the next few days I got used to the side effects, tiredness, my jealousy of your “movements”, nose bleeds but NOT the loss of taste – can you tell how annoyed I am about that?  By Wednesday though that had started to return – phew!   Just in time for my next dose on Friday 13th (cue Halloween music).

As always, Onwards & Upwards!

Debs x


EDIT:  Just to say that you no, you haven't "caught" my chemo brain, and I have changed the title of this Post.  All week I have been singing that blasted tune in my head but, when Al and I were discussing the name of this Post we were trying to come up with witty one liners (you try rhyming Taxol!!).  The "there's only three guarantees in this life....." quote kept cropping up so we adapted it.  However, I have re-read it this morning and think it looks a bit morbid-y (it's my blog so there is such a word - ok?) and I have changed it to the more bouncy "Taxol, Taxol, do the Paclitaxol" - cos I can!   Debs x