GOODBYE TAXOL - HELLOOOO EC!!

Well, I've finally finished with Taxol he was beginning to annoy the heck out of me so I dumped his sorry ass and, though I am thankful for the job that he did - I won't miss him one bit.  The side effects over the nine weeks gradually got worse until they finally floored me - hence no update on here for about three weeks.  Before you start chemo you are given a fact sheet about the drug they intend on pumping into you and its "possible" side effects - common and less common.   I read the sheet and thought I might be unlucky enough to get one or two of the SEs - how wrong can one person be?  By the end of Week 9 I had ticked virtually all the boxes - oh well, I am nothing if not thorough I suppose!  These included:

- numb/tingling fingers, toes, face and lips (face and lips only lasted a couple of days after each dose, but my toes have been numb for a few weeks now and it's now spread to the balls of my feet - makes walking a bit tricky at times I can tell you.  I do a good impression of a duck first thing in the morning!)
- fatigue - the sofa and I are now extremely well acquainted and I am sure there is a "Debbie Dip" in the cushions
- hair loss - all over.... (but as Hannah "helpfully" pointed out, it is saving me a fortune in waxing lol)
- skin rash - my face looks as though I am reliving my teenage years and my right hand has the Taxol rash starting at the knuckles and going back towards my wrist - my left hand has it too but only mildly.  E45 and Aquaeous cream are not working so I am going to ask what else they can suggest at the unit - probably more bleeding steroids but in a cream form knowing my luck - so now my hand will get fat and bloated!!
- headaches - splitting, banging headaches that come on suddenly but go oh so bloody slowly.
- aching joints - in my hips and legs in particular which feels like a bad case of the flu.  The pains often wake me up in the night which is a bummer because then I can't get back to sleep grrr
- taste change - even water doesn't taste right
- nose bleeds - the lining in my nose has thinned and the little hairs that stop dust etc have gone, so my nose constantly needs blowing and is always full of blood and it's absolutely disgusting
- eyesight - I had laser surgery a few years ago and had 20/20 vision before my chemo started.  Now I have difficulty reading the blurb on the tv and have had to increase the size of the font on my kindle.  I am assured this SE (like the majority of them) is reversible - I flipping hope so or that was a couple of grand wasted!
- insomnia - I used to say "I sleep like a baby" now I really do - I wake every three flipping hours, sometimes for no apparent reason, just that my brain seems to be working overtime.  I often "write" my blog in my head but can't be bothered to drag my sorry ass out of bed to type it up.  I am gutted as this is when I write my best one liners but obviously, by the time I actually wake up in the morning - old chemo brain here has forgotten every word doh!

But, the worst SE has to be the pain and uncomfortable feeling in my stomach and behind my rib cage.  This SE is the one that has made the past few weeks unbearable, reduced me to tears of both pain and frustration and made me seriously think about refusing any more treatment.  I told the unit about the pains etc for three weeks and they thought it was heartburn/indigestion so upped my antacid meds - to no avail.  The only way I can be semi comfortable and get any relief is to lay down, trouble is laying down all the time makes it difficult to hoover, make dinner, put the washing on and generally live normally!  When the pain is at it's worst I feel as though my chest is going to explode - I have had visions of re-enacting that scene from Alien where it bursts out of John Hurts' chest and I've prayed it doesn't happen on the school run!

Finally, two weeks ago the nurse who was listening to me moaning about it yet again, decided to speak to the on call Dr about my problem.  The Dr came over and said that they were unplugging me and sending me for a stomach and chest x-ray.  The reason? to rule out the possibility that the steroids had made a hole in my stomach!!!  What??  Can someone please tell me what good these bloody steroids actually do?  All I know so far is they make me eat like a horse, therefore gain weight, give me water retention and now there was the possibility they had punctured my stomach arrghh!   Kate was with me that day so off we trotted over to the x-ray department where we sat for nearly an hour waiting..... I seem to spend my life waiting in one room or another these days.  My chemo appointment had been quite early that day and, for once, I had been called on time and was hooked up and running - it looked like we were going to get out before 6pm for once - but obviously "someone" had other ideas....

Nearly three hours later a Dr was finally located and made to stand still long enough to look at my x-rays.  He came over to me and closed the curtains around us "uh oh" I thought "here we go".  He told me that, thankfully, there was no hole - phew - I love you Dr!   However, my stomach was quite inflamed (bloody steroids again grrr) and that I was severely constipated high up in the area behind my chest - my initial response? "WHAT?  No I'm not, I "went" on the way to the xray - honest Doc"  I don't usually argue with Drs but I was sure he was wrong.  He kindly pointed out that he had seen the x-ray and knew what he was talking about.  Well to say my flabber was gasted would be an understatement.  Sorry, I know in the last entry I said I wouldn't discuss my bowel movements until I was old enough not to care but I didn't foresee this turn of events.   He explained that the x-ray showed a severe impaction which had built up over a period of time and I was going to be prescribed a medicine that would help - Movicol (its vile - believe me).  It turns out I probably should have been having this medicine from the beginning of my treatment as constipation is one of the main side effects of chemo - hmmmmm - trying hard not to rant here.  I was given a box of the vile stuff and told to drink one sachet in the morning and one in the evening the next day (Tuesday) and, if this didn't work, I should make up a jug using four of them and drink it during the course of the following day (Wednesday).  So the next morning, after the school run, I set myself up for a day on the sofa; Movicol - check, cushions - check, blanket - check, Kindle - check, banjaxer (tv remote to you) - check, nibbles - lots, I even left the living room door open so I had a clear run to the downstairs loo.  I drunk the dreaded drink and waited - six hours (and numerous texts and phone calls asking if there had been any "movement") later I was still waiting.  The following day was a repeat - although boredom was a big problem as daytime tv is terrible.  This time I made up four of the sachets and drank it through the day.....................nothing!  I was seriously thinking about calling in Dyno-Rod!

Two days later I met up with my Onc for the first time since Christmas.  The meeting didn't start particularly well when she asked me "have you started chemo yet?"  Hmmmm, well considering I am sitting there with no hair, patchy eyebrows, a taxol rash all over my swollen face & hands - what do YOU think Dr?   I gently explained that, yes, I had had EIGHT bloody doses.  We then started discussing my side effects.  I had been told to ask her for some suppositories for the consipation and when I did her answer stunned me.  "Debbie, you can see your GP for things like this you know".  Now all along I had been led to believe that my GP is just a bystander in all this, that ALL my treatment/meds should be dealt with by the chemo unit.  I was dumbfounded, if I had known I could involve him I would have been to see him 3 weeks ago to try and sort the problem, rather than waiting week after week until my next chemo appt to see what they could suggest next.  Oh well, at least I know now I suppose.  I have an appt with him this coming Thursday and am hoping he can sort me out once and for all - no comments please!

We continued chatting about my SEs and it was then she that told me off quite sternly and said that I should have been drinking SIX sachets of the vile stuff EVERY DAY since chemo began and it was at this point I lost my rag!  This, as "they" say, was the straw that broke the camels back.  I was soooo frustrated - why had no-one told me this, why had no-one told me I should be seeing my GP if I needed help between visits, why does one person say take paracetamol for the pains but another say don't because it will mask any infection and add to your constipation.  For crying out loud, I have nothing but praise for the staff at the unit from the tea lady through to the most senior nursing staff - they are all bloody wonderful and do a very difficult and demanding job - always with a smile.  But for goodness sake, surely the advice should be the same from the top down.  Instead, I have often been given conflicting and confusing advice which has left me in tears of frustration and, at times, too worried to call the unit in case I am panicking over nothing and they are already stretched beyond their limits.  Ok rant over.

After I had calmed down and sat down she asked me if I had felt the lump recently.  I told her I don't actually go anywhere near it - in fact I try to pretend that breast doesn't exist (maybe I am preparing myself for the op but I also know that if I was to go feeling around the area on a daily basis, I would convince myself it had gotten bigger and I could do without that image in my head).  She asked if she could examine me and spent sometime doing so.  She was smiling when she had finished and asked me to lie on the examination bed so she could examine me further.  This clueless wally should have been alerted by the big smile on her face but I was too busy repeating a mantra in my head "please don't have grown, please don't have grown"  I hadn't gone in there with any expectation of it getting smaller because I had been told the first bout of chemo doesn't always make a difference, it's the second bout that does the job.  As I was laying there she asked me to have a feel for myself and I tentatively did as she asked.  Trouble was I couldn't feel anything and I said "I can't find it".  The little jig she did accompanied by the punch in the air and the "yesssss" was all I needed.  She said "exactly, you can't feel it because it has shrunk to almost nothing" OMG!!!!  from 10cms to "almost nothing"  I cannot describe my feelings but it was a mix of shock, disbelief and gratitude.  I looked over at Mum who was just about holding it together.  My Onc said "Debbie, you have been through Hell but this shows it has all been worth it" and by God, she was right.  As we left Mum turned to say goodbye and my Onc was grinning like the proverbial Cheshire Cat and punching the air - I don't know who was more pleased that day!  Mum and I left the unit had a cuddle and burst into tears.  Then we phoned and texted everybody to let them know.  The amount of tears that flowed that day could have solved the South East drought problem this year.

I have missed out quite a bit of the last three weeks, mostly because overall it has been a horrible time, but it's in the past now.  We had some highlights though, like our family trip to Birmingham to visit Cadburys World, which we all thoroughly enjoyed (despite the fact I can't taste chocolate lol).  Our trip to see Stomp at the Hippodrome the following day - which despite being a brilliant and very noisy show, I somehow managed to fall asleep halfway through (much to the amusement of the lady sitting next to me - I blame the heat and the low lighting lol).  I was woken up by the cast playing steel drums and, if I'd  had the room to fall off my seat, I probably would have done.  However, seeing as my knees were almost up my nose, I settled for a jolt - which alerted Hannah to the fact I had fallen asleep, something she found hilarious.  The Hotel was lovely but in the clubbing district so you can only imagine the sights we encountered on our trips out to dinner.  I must be getting old cos when I saw the young girls in their nightdresses and stilletoes, all I could think was "blimey she must be bloody freezing".  Our next door neighbour was a noisy, inconsiderate git who got a taste of my wrath at 1.30am when I'd been woken up by him singing at the top of his voice.  I yelled out "SHUT UP" - Hannah was in the room otherwise there would have been an expletive in the middle of that sentence.  He went quiet for a while then started singing again.  I was all for going next door and sticking my bald head in his face and my knee in his groin, but Alan reminded me that I am ill - damn I really felt like taking my anger out on someone too.  Instead, Alan phoned reception and they sent up a security guard who told him to shut up or get out - he went very quiet after that.

We did notice something very funny in the reception of the Hotel.  You know they have those notice boards welcoming their visitors to the Hotel?  Well, on the Saturday night, as we were returning from dinner,  Alan cracked up and pointed to the board.  It said "We would like to Welcome The Church of the Living God in Room 101" nothing funny about that eh? but, underneath it said "We would like to Welcome Ruth's Hen Party in Room 102" - oh Lordy, imagine if there was a mix up.  We saw some of the "Hens" in reception enough said!  Well it made us giggle.

Another highlight was my sister Gill and baby James' visit - the previous times I have been too ill to cuddle him but this time I made up for it big time.  We had a lovely weekend and as James is ten months old now his character is really coming through.  He was playing peek-a-boo with me when I was lying on the sofa.  My head was aching so I took off my hat - oh dear, James did NOT like my new look.  He bum shuffled backwards giving me a very odd look, turned round to his mum and promptly burst into tears.  Bless him, he probably wondered why his Auntie suddenly looked like a boiled egg!  I put my hat back on and he soon got over the shock and continued with our game - good lad!!

So, there have been some bright spots over the last few weeks and I couldn't have asked for better news at the Onc appointment.  So I am going to end this post on a positive note.  My new chemo started today - the lovely EC - one of which makes your wee red.  I will post again when I have an update about any SEs this one brings but, I am hoping for an easier ride this time - hmmmm have I just jinxed myself I wonder?

Anyway, as always (and with feeling this time) Onwards & Upwards

Debs xx

Again its been a while since I last posted an update.  So much has happened that its difficult to know where to begin, what to include and what to leave out.

We had our family trip to Birmingham where we visited Cadburys World


The last three weeks have been the worst so far, with the side effects totally flooring me.  I mentioned in a previous post that my rib cage was painful and it felt as though I was 4 months pregnant.  The chemo unit believed this to be caused by indigestion/heartburn so upped all my antacid meds and lowered my steroid dose - to no avail.  Finally, at my 8th chemo (27/2) the nurse who details the side effects I have experienced that previous week, decided to ask a Dr to examine me.

THREE WEEKS, SIX HOURS, TWO HOT CHOCOLATES AND A BOWL OF CEREAL LATER......

Forgive me blog for I have sinned, it’s been 2 weeks, 3 chemo’s and, what feels like a lifetime since I last posted – I think I have can add Bloggers Block to my list of side effects.

When I was first diagnosed ten weeks ago (is it really only that short time ago), I was hit by a torrent of emotions all within the first couple of hours and days; shock, fear, grief, anger and then, gradually, a grudging realisation that it was not a nightmare I would be able to wake up from.  I was assured by family and friends that “if anyone is going to survive The Git, you are Debs” and I held on to these comments and any positive comments from my Drs ie we are looking to cure you, not put you in remission, with grim determination (though I admit I did not always believe it myself – hence the Eeyore moments). 

Gradually over time I found myself repeating this mantra to everyone I spoke to – I think, at times, I was trying to convince myself more than them.  When I read back over the first few blog entries I can remember exactly how I was feeling – scared as hell but determined to kick The Git’s butt.  I also remember one person (my BCN) warning me very early on that, at some point during this battle, the reality of my diagnosis would hit me like the proverbial ton of bricks and I would very likely hit rock bottom.  Her advice to me was this “go with it but try to remember how positive you are feeling right now, admit if you are not coping and accept all offers of help, listen to your body and take plenty of rest because most likely it will happen but it will pass”.  If I am honest I didn’t believe her.  I was feeling so cocooned by both my family/friends and my Team at the hospital (I had weekly appointments, sometimes twice weekly) that I couldn’t see a point at which I would be overwhelmed by anything negative.  She was right though and three weeks ago, my outlook started to change, the fears started creeping in and consuming me (is the chemo working, if it’s so curable, why DO so many women and men still die of BC each year – more depressing, will I?) my mood just kept getting lower and lower until finally, that “ton of bricks” with my name on it hit.

Bear with me here and I will try and describe it.  When I was a kid my mum had a car “Tuppence” – don’t laugh she loved that car.  One day, when Mum was driving us kids home from somewhere or another, steam or smoke (I’m not a mechanic I don’t know which one – I didn’t wait to find out) suddenly started pouring from Tuppence’s dashboard (this happened right opposite Daisy’s – the most exclusive dress shop in East Ham at the time – arrgh mortifying).  Mum quickly pulled the car over to the side of the road and sounded the “Abandon Ship” klaxon ie. “Kids!! out of the car NOWWW”.  None of us needed telling twice.  Whilst we waited for the Fifth Emergency Service to arrive (my Dad!), we all stood and watched as the car continued to smoke/steam at the side of the road with passers-by stopping to gawp. It was like one of those ACME cars on the cartoons and I fully expected to see the bonnet to fly off into space, doors to fall out, all four tyres to burst and the body to collapse to the floor with a Pffft and a sigh!  And that after a gradual decline over the previous two weeks (minus the steam/smoke) was exactly how I felt last Thursday – my bottom hit rock.

At this point I would like to point out two things;

1.   After Tuppence’s sad demise, Dad bought Mum a “new” car (a red Escort) he searched high and low for the right one (hmmm), it’s number plate was (you’ll love this) C?? OCK – I’ll leave it to you to work out what we nicknamed that one.  I don’t seem to remember her driving it for very long before she handed it over to my brother Kevin as his first car though – wonder why?

2.   Our history of embarrassment with the shop, Daisy, didn’t end there.  My Mum was looking for a new outfit (probably for one of the Ford’s Ladies Nights her and Dad used to go to) and off to the High St we trooped.  Whilst in Daisy, my sister Gill disgraced herself.  My memory is a bit hazy (probably self-preservation) but I do know it involved a fully dressed mannequin in the window ending up in a heap on the floor and Gill being found very close to where the attack took place – and the O’Briens making a sharp exit.  Later on, as a teenager looking for something to wear to the weekly trips to the Ilford Palais or the Shannon centre, I only entered that shop as a last resort - just in case they remembered who I was related to.  Gill, remember that photo you put on FB – Gotcha!

Since my last post I have had three more chemo dates and the side effects are getting worse with each dose.  I’d like to meet someone, anyone, who has “sailed through chemo” because they are either incredibly lucky, have an extremely strong constitution, a will of iron or a very bad memory – apart from the bad memory, I have none of the above.  Actually, I take that back, I don’t want to meet them or even hear about them anymore, it only makes me feel more of a failure that I am not coping as well as I thought I would or, indeed, should. 

Maybe it’s more intense because I am being poisoned weekly, I don’t know. Maybe when I change to EC, which is given three times over a nine week period, it won’t feel so relentless.  At the moment, I get my chemo on a Monday (and so far I haven’t had one session where I have been in and out in 2-3 hours – for one reason or another, each visit has taken between 6-8 hours, with the longest taking 10 hours).  I arrive home late evening as white as a sheet, exhausted, feeling “icy”, ready for dinner and my bed and not necessarily in that order.  On Tuesday I wake up very early (hence I started writing this at 4am) but am usually almost “normal’ and can go out and about feeling fine – I think it has something to do with the amount of steroids they pump into me via IV(y) – I am probably as high as a kite!  Wednesday arrives and I am beginning to feel quite tired by mid afternoon, but still able to do things and some of the milder side effects have started making themselves known.  By Thursday most of the side effects have now hit; an acne like rash on my face, headaches, tingling and numbness in fingers and toes, pains in my legs, eyesight problems, upset stomach, chills and the worst side effect of all, heartburn and indigestion and a painful ribcage.  My stomach feels like its too big for my insides and I am unable to sit up straight.  I walk around as though I am about 4 months pregnant as gradually, during the day, my stomach swells up regardless of how many pints of water I have been drinking since Monday, to flush the excess toxins away. I can only wear leggings, loose trousers and baggy tops as everything else feels as though it is crushing me.  At yesterdays chemo I asked for a specific tablet I had read about on the BCC forums and I am hoping it will help with this SE – the others I can cope with.  I am drinking so much milk I will soon either start mooing or develop Mad Cows Disease – although, there are some people who would say…………

For the past three weeks I had been feeling lower and lower but I didn’t really want to tell anyone at first.  I am fully aware that my treatment will go on for the rest of this year and I don’t want to be thought of as a whinger.  I don’t want people crossing the road to avoid me in case I start banging on about my aches and pains – or worse, my bowel movements – JOKE I promise I won’t be subjecting anyone to a minute by minute description of them until I am old enough not to care.  My nan had a friend from Bingo like that, us kids called her Mrs Dundee Cake (I can’t remember why now).  When I was at school my nan came over every Tuesday and Mrs DC knew that.  Once she was in the house, you couldn’t get rid of her.  One Tuesday my nan couldn’t make it but Mrs DC didn’t know that and she came knocking.  We had just made cheese on toast for our lunch when the doorbell rang, none of us wanted to open the door and get stuck with her, so we hid behind the sofa until she eventually gave up – she lived through the war – she didn’t give up easily!  She peered through the windows and rang the bell again and again, but finally she went home (probably knowing all the time we were there *blush*).  We were all laughing and giggling when we came out from our hiding place – only to have the smiles wiped off our faces when we saw that our dog, Mona, had taken advantage of our disappearing act and had eaten our lunches – karma is literally a bitch eh!

Anyway, I don’t want to be someone’s Mrs Dundee Cake, so when asked how I was, I continued to reply “fine”.  On Thursday this week, however, I came unglued and I had my ACME car moment –  the wheels came off.  I started crying at Hannah’s counseling session and didn’t really stop for the rest of the day.  The counsellor told me I am most definitely NOT coping and that I should admit it to myself as much as anyone else.  She called my Dr and performed a miracle – she got me an appointment for the same day with one of the main doctors at my surgery – I am going to take her some bread and water next week and see what she can do with that.

I dropped Hannah back at school and broke down again in reception – thank goodness not many people were about.  My friend, Kerry works there so took me into a side room, handed me a box of tissues and let me blub all over her.  She too told me I MUST tell my friends when I am low, that they are all there for me and want to help.  I left a while later feeling a little better.  As I got in the front door I received a text from Tracy.  Kerry had told her what had happened at school and that she was concerned about me.  Tracy was with me in minutes and again I was sobbing.  She stayed with me for a couple of hours until I was feeling better – she would have stayed all day, but could see I was in need of a nap before Hannah got home from school. 

Later in the evening, Rachael texted me to see if I was up to our Friday morning get together.  I explained that Eeyore had taken up residence on my sofa and nicked the banjaxer.  But that I was hoping Tigger would arrive over night and evict him and would let her know in the morning.  The following morning, I did wake up feeling a bit more like the old me so took up her kind offer of a lift into Rayleigh  - if we don’t start walking again soon, the girls are going to blame me for them becoming unfit!  After a bit of shopping and mooching, we all needed coffee so retreated to Costa – who really should look at moving to bigger premises, I object to being asked “are you nearly finished, are you leaving soon and can we have your seats” grrrr.  I had a midday hospital appointment with the rehabilitation unit.  The arm I had my SNB op on has developed “cording” which is uncomfortable and a little painful.  It is as though an elastic band has been tied from the scar and travels up through my armpit, along my upper arm towards my elbow – you can actually see the tendon – yuck!).  Due to a combination of the side effects, a day spent in the chemo chair and my lowering mood, I had not been as regimental with my exercises as I should and the cording developed very quickly over two days.  I told the girls I needed to be home by 11.30 in order to get to the hospital in time.  Rachael offered to drive me to my appointment and I said I was ok to drive myself (to be honest I wasn’t, I was knackered and considering calling a cab).  She looked exasperated, leant forward and said “Debs, imagine I have a Mary Poppins bag, this bag is bottomless, you can never ask for too much help and that’s what we are all here for – and anyway, I am happy to perform my Driving Miss Debbie duties”.  By the time Suzanne and Tracy returned to the table it was all arranged.  They would drop me off at the hospital, go and do their food shopping and pick me up after my appointment – I was so grateful.

Another of our friends, Alison is a wonderful cake baker, she is also a natural born comedienne – her talents are wasted on a sales desk!  Before Christmas she arranged a “girls nite” at hers and invited us all round – then The Git happened and all the crap that entailed, so the evening was finally re-arranged for last Friday.  By 6pm, after a day of shopping, hospital and a few more tears, I was sound-o on the sofa.  The girls were knocking for me at 7.15 and I was hoping a quick doze would mean I would last until at least 10pm - yes, ambitious I know lol.  Alison had been cooking up a storm all afternoon.  She wanted to make food, cakes and cupcakes that I could actually taste.  She succeeded!!!  Her Death by Chocolate cupcakes were literally melt in the mouth – if I remember right (I had “enjoyed” two Bacardi Breezers – my first alcohol since Christmas), they were Belgian Double chocolate sponge with Belgian Chocolate Buttercream icing, decorated with Mars Planets and large Milk and White Chocolate Buttons – when I say they melted in your mouth, believe me I am NOT fibbing.  Her second masterpiece was a lemon sponge, she had used three lemons, lemon syrup and lemon buttercream icing and was over the moon that I could taste it.  Her daughter had tried a bit of the buttercream during the day and pulled such a face at the sharpness – but because my tastebuds are killed weekly, this wasn’t the case for me.  Alison – as we discussed on the night, you should have your own tea shop hun, I hope James Earl Jones can forgive me, but in a play on the words from his famous speech in the film Field of Dreams “build it and they will come”.  We had a great evening, full of laughs and lots of cake!  However, at 9.30 Tracy said she thought it was time I went home as I was almost asleep at the table – I personally think they wanted more cake between them, I’m not daft……   Kerry drove me home – and went back for more cake (see!!!!).  Thanks again Ladies xx

Before I continue with this post, I would just like to say that my friends are wonderful, fantastic, brilliant, gorgeous and bloody lovely.

My fourth chemo / second Herceptin was two weeks ago.  On this occasion my sister Kate wanted to come with me.  This was despite not arriving home from holiday in Egypt until the wee small hours.  She had told Mum that she wanted to see for herself what chemo was all about.  We rocked up with our chemo picnic bags at about 10.30 and waited for my name to be called.  Alan had donned his Vlad outfit and taken my bloods the previous Friday morning and I had dropped them in at the Drs surgery for testing.  He was a bit concerned whether or not he had done it correctly – the vials leaked a bit (sorry, should have warned you there lol).  However the nurse said he had done such a brilliant job – both of the blood work and re-dressing the PICC line site – that he had put her to shame.  So a big pat on the back to him – he has to do my bloods again this week and is already making Hannibal Lecter noises when I mention it!   

Finally after about an hours wait we were called through.  Kate was impressed with the ward and its layout – not at all like a normal ward.  The nurse went through my week’s side effects and explained what may or may not be causing them ie. the chemo causes one side effect and so they give you something to combat it but, this too comes with its own side effects – Kate’s comment of the day?  “There’s nothing fun in this at all is there Debs” lmao errrr No!  I think she was a little taken aback at exactly what chemo can do to a person – after all, it is very true to say that chemo can and does kill – a fact you try not to dwell on but is always at the back of your mind. They don’t get you to sign a disclamer and agreement before you have chemotherapy treatment for nothing you know.

On this occasion the nurse didn’t tell me when she was giving me the piriton, I suddenly realised Kate’s face was fading in an out and I couldn’t keep my eyes open – Kate laughed and said “go to sleep, I will read”.  I kind of drifted off for a while, not asleep but unable to really have much of a conversation – actually it’s quite a pleasant experience because you really don’t give a toss where you are for about 20 minutes – the world could go to hell in a hand basket for all you care.

When the piritons initial effects had worn off I came to and was freezing – I have saline pumped in for about an hour or so and again in between treatment bags, it chills your whole body – this is probably what wakes you up from the piriton.  We covered me in coats, scarves and cardigans and sat there chatting and eating (I do LOTS of eating on a Monday and often see the other patients nudging each other – “look what she is eating now George – blimey, she’s gonna balloooooon”.  An elderly couple sitting opposite me spent virtually their whole appointment watching me – he just sat there with his hands in his lap staring at me, whilst she knitted.  They kept speaking to each other out of the sides of their mouths, all the time looking at me – it didn’t spoil my appetite though ;-)  After a while, Kate went off to explore the visitor lounge and learned how to operate the drinks machine.  She is coming with me again in two weeks because there are a total of 7 coffees, 3 teas, 3 hot chocolates and a few herbal teas – she only managed to try a couple and wants to work her way through the rest!  You don’t have to pay, but you do give a donation – I think it might work out cheaper for Kate to pop along to the hospital Costa Coffee next time!!!

Another thing I have noticed is that I am often the youngest on the ward by quite a few years.  I don’t know where all the younger women and men are – maybe they are on different days to me – but it does make me wonder. Not that my fellow patients aren’t a laugh though, last weeks waiting room was hysterical with tales of hair loss embarrassment, wind etc.  Two of the women had us all in stitches, but I did notice one woman sinking further and further into her chair – if she could have disappeared into the wall behind her, I think she would.  I pointed her out to Mum saying she looks like a rabbit caught in headlights.  We had such a long delay that they brought us all sandwiches, coffee and biscuits to keep us going.  Eventually I was called in and I saw one of the ladies I’d been laughing with come through about an hour later.  Some time afterwards, I saw the scared lady and her husband being brought through.  She was having the guided tour – then I understood – it was her first visit and the talk in the waiting room had obviously unnerved her.  I hope that after I had been called in, she got talking to the others and they were able to calm her fears a little. 

Last week and yesterday (13/2) my usual partner in crime came with me (yes mum that’s you).  My sister in law, Trina is on half term break so she and Freddy drove us in.  Last week we had a very long delay due to staff sickness – this was on the day after the snow had arrived so I think it was more likely the nurses were off having a “snow day” – and who can blame them, they work very long hours and are on the go constantly on the chemo ward.  When the unit was in its planning mode, it was expected to be twice the size it is now with twice the number of beds.   Some bigwig who holds the purse strings decided against this.  I honestly cannot see why.  The unit covers a huge area – not just Southend, I have met people who have travelled for miles as I believe ours is the only NHS hospital providing chemotherapy services in the South East Essex area – when you read the stastistics of how many people are diagnosed each day/week/month/year – you have to wonder how long the unit will be able to cope under the mounting pressure.

Ok off the soapbox – for now!  This isn’t a political blog.

On Tuesday I met up for lunch with Rita and Jackie.  Rita kindly picked me up and we had a lovely lunch.  Jackie is another one trying to find something I can taste and presented me with two bags of chocolates – Moments and Malteasers – thank you hun.  It was nice to get out and look at some different walls for a change.

Last week I also found a reflexologist.  My chemo brain was obviously in operation because I totally forgot about a neighbour who is a registered reflexologist.  Her husband stopped me and said he hoped I didn’t mind but he has been reading my blog (of course I don’t mind, I am always taken aback when people mention that they enjoy reading it, but must admit it does make me chuckle when they then look aghast and say “oh that sounds so wrong, I hope you know what I mean” – don’t fret, I understand totally, honest.  I am just glad someone is reading my ramblings other than me!)

Anyway, he went on to say that he had read my last post where I mentioned trying to find a reflexologist and told me to have a chat with his wife.  She is a lovely, friendly lady and I am really looking forward to starting this week.  She also practices Reiki and other complementary therapies, so we will be chatting about those too.  I have explained about Hannah and she may be able to help her as well – another step forward in the right direction.  I hope she doesn’t mind me mentioning her – I won’t put in any name’s as I haven’t mentioned that I was going to blog this.

Our friends The Elliotts came over a couple of weeks ago.   We hadn’t seen them since NYE and it was a great evening.  Jason had bought his sharpie pen, just in case I was going to let him draw hair on my head – hmmm I don’t actually want to look like Rab C Nesbit thanks Jase!!  So the answer was an emphatic NO!  When they arrived Alan was flushing my PL and changing the dressing – I thought Lisa’s eyes were going to pop out of her head.  She is another one who has missed her calling.  She once told us she would love to be a chiropodist – euwww other peoples feet and toenails!!!!  She was almost over Alan’s shoulder asking if she could do anything to “help” – Alan and I were in fits.  She asked if she should be taught to take bloods etc just in case Alan can’t do it for whatever reason – I am not sure if she was joking or not lol.  Jason, meanwhile, was looking a bit green round the gills – he and I are a bit more squeamish than Vlad and Elvira!  The kids were fascinated by it and not at all fazed.  I think they were more taken aback that I had no hair (I was wearing my chemo hat) – when they’d last seen me I’d looked like Aunty Debbie, just a quieter version (yep, hard to believe I know but, in my defence, I had just come out of hospital). 

Lisa had been “chemo shopping” and bought me a selection of gifts; Learn to speak Italian CDs, Alan is downloading them to my ipod (she read it on my blog), Coconut body cream – sniff it and you can almost imagine you are on a tropical beach, dark chocolate, Lime curry crisps (“if you can’t taste them I give up”) and a Sanctuary gift set – spoiled rotten I am !  I managed to stay up until midnight (not sure how I did it) and we waved them off, a little sad that we weren’t going to be going on holiday with them the following week to France.  Twenty of us were meant to be going ski-ing but obviously we have had to cancel – we will be with them next year though!

Well this is turning into War and Peace (that will teach me for leaving it so long).  I think I have covered just about everything that has happened over the past few weeks.  I have had Taxol number 6 now so 3 more to go before I change to the new regime – if all goes to plan (ha ha ha) I should have my last chemo on 23 April – as Rachael pointed out “St Georges Day” – how apt!

Okay, as always (and with more feeling this time) Onwards & Upwards!

Debs x

NOT SUCH A GOOD WEEK...

This week has been a difficult one, hence I wasn’t really in the mood to sit and write my blog.   When Alan asked me why I hadn’t updated I explained I couldn’t because I wasn’t in a jokey, upbeat mood.  He then reminded me that this blog is supposed to be a “warts and all” diary of how I am feeling and should include both the good and bad days.  That there will be times I won’t always be able to make light of it all and crack jokes – this week was one of those.  

One of the reasons I started my own blog is that I found a lot of cancer blogs quite depressing and some of them actually made me more scared than I already was.  However, as its also been pointed out to me, this blog is for me as much as anyone else, so although I don’t think this post will be as light-hearted as the others, it will be a truthful account of how I felt this week.  So, here goes….

Since I found out I was having chemo I have been asked many times “are you worried about losing your hair/does it bother you?”, my stock answer was “no, it’s just hair, it will grow back” and I honestly believed this.  However, that was before it started falling out in clumps, I was far more upset than I had thought I would be.  I suppose it brought it all home to me that this is actually happening to me.  As I mentioned in my last post, my hair started coming out in the shower on Friday (with the amount of hair we removed from the shower trap, we could have knitted our own Wookie) and it got steadily worse over the weekend.  If I so much as sneezed, shook my head or even if one of the hamsters farted – tufts of hair would fly out – I was in competition with the cats as to who could produce the most hairballs… and I was winning.  My head was incredibly itchy and so sensitive – just laying on my pillow hurt my head.  No wonder then that my mood took a nosedive and Eeyore made an unwelcome return, moved in and took over control of the banjaxer (tv remote control to the rest of you).

I hardly slept Saturday night and woke up on Sunday tired and miserable.  Although the previous evening I’d promised Hannah I would try and keep my hair for at least another week to give her time to get used to the idea, she was getting quite upset at the thought of me having it shaved off, when Sunday morning finally arrived I had to explain to Hannah that I needed to break my promise.  I told her how sad it was making me and that I knew I would feel a bit better once it had all gone, although she was upset, she understood.

That day we drove back to Lakeside and re-visited the wig shop, Suzis.  The ladies were lovely and helped me try on the original long wig I had seen the previous week and also some very short styles.  Seeing as I had my hair cut short the previous week, I wasn’t sure if I could get away with suddenly re-appearing at the school gates with long hair again.   The shorter styles looked awful on me though and were not available in the spec that I wanted ie. synthetic (the “hair” only needs to be washed once a month and dries back in its style – no blow drying or straightening required), lace cap (this makes it very difficult to see where your scalp ends and the wig begins) and  monofilament (this means that when the wind blows the “hair” lifts and parts just like normal hair).  It is the more expensive style (£370 in my case – however the government generously give you the VAT back), but the amount of people it has fooled – including my brother, his fiancé and my chemo nurse, means it was money well spent.  Actually Mum and Dad have very kindly bought it for me, so it was their money well spent!   Thank you Ma & Pa – love you lots xx

After giving it some more thought I realised that only my close friends would be aware I was wearing a wig, that most people wouldn’t remember that I’d had my hair cut short the previous week so, I finally settled on a mid length bob, the same style my hair has been for a few years now.  The colour is dark brown with blonde highlights and is very similar to the colour I usually have done by my hairdresser.  I have named her Lola – she is my alter ego and I am stating now that any bad behaviour over the coming months will be her fault (I think that’s called a “get out clause”).  It will go hand in hand with the “Cancer Card” my friend Rachael has made me.  She also made Alan a “Nursie Card” which gives him permission to take my bloods and flush my PL – he’s thrilled with it!  I swear that man missed his calling.

When we got back home we borrowed some hair clippers from my brother and Alan set to work.  My hair was still so thick though so it took quite a while to shave it all off.  I admit to having a few tears during the process.   Although I did feel a little bit better about making the decision and “taking back control” (which seems to be a huge thing on this “journey” I have found myself on).

At my weekly chemo appointment on the Monday, the nurse had said I was tolerating Taxol so they could lower the steroids.  Although I was pleased as it meant I could cancel at least two of the food deliveries I was having from Mr Tesco each week and therefore might not have to send the kids out to work to pay for all the extra food.  It also meant that I suffered quite a few of the side effects including; nosebleeds, numb fingers, feet and lips, flu like aches and pains, fatigue, constipation and the horrible problems that leads to, pounding headaches, cramp in my feet and that horrible chemo iciness – if you remember the Ready Brek advert with the little boy going off to school with a red outline all round him?  Well, its like that only it’s an icy blue outline and it certainly doesn’t give you that warm glow.  I think some low level depression set in as well.

The only website I have looked at since diagnosis is Breast Cancer Care (see the link at the top of my blog), but even on their forums there are areas I hadn’t ventured into such as End of Life and Secondaries – stupidly I found myself looking at these pages and ended up depressing myself all the more.  There has been a thought at the back of my mind since I started treatment – what if it doesn’t work?  After all there are no guarantees, the Drs can’t guarantee that the chemo will work – they only hope that it does.  So, now, until I get another MRI which tells them if its shrunk or not, I have this niggling worry at the back of my mind – it’s not easy to live with I can tell you.

By Thursday I was on my knees, totally exhausted and fit only to lie on the sofa and watch crappy daytime TV.  I have a cleaner now who comes once a week for two hours or so, I am so thankful to my sister for organising this as it really does take a weight off my mind to know that the house is at least clean and tidy.

The same sister, Gill was visiting for the weekend and I was worried I wouldn’t be well enough to see her or James, my baby nephew.  Then she called me Thursday afternoon to tell me she has a thyroid problem and her Dr isn’t sure if it’s bacterial or viral.  Gill told the Dr about me and was advised to stay away from me.  After reassuring Gill that we would get round it I put the phone down and sobbed – cancer is a shit (sorry for the bad language).

GORY BIT ALERT!

Friday morning rolled round and this was the first time Alan would be taking my bloods.  I was dreading it, having to deal with blood at any time makes me feel queasy but at 7am, when you’ve just woken up – that’s just NOT funny.  He set up the sterile area on our bed and prepared the tray, as the nurse had shown him.  I am so proud of him, I don’t know that I could have done it if the roles had been reversed but he managed to fill the two vials that the hospital had given us.  He had a bit of trouble transferring the blood from the syringes to the vials then had a brainwave and used a needle to pierce the vials – job done.  Vlad went off to work whistling…

Later that morning, Rachael, Susanne and I went into Rayleigh for our Friday morning “walk” (the walk bit has been suspended for a while but I am hoping to be able to manage it again soon) and for me to drop my bloods off for testing.   Usually we mooch around the shops for an hour or so then finally end up in Costa Coffee and spend another hour putting the world to rights.  However, I was feeling so unwell that we were back home again just an hour and half later and I spent the rest of the day sleeping on the sofa.

Gill & James arrived Friday evening having spent all afternoon on a train from Newcastle.  Hannah was so excited that I got myself together and drove us both over to Mums in order to be there when they arrived.  It was lovely to see them both and James has grown so much since Fakemas, he is such a happy little fella.  Trina brought Freddy over and the two cousins got to know each other a bit better, there was a bit of head-locking, some tandem screaming and a lot of laughing.  By the time it came to go home I was pooped and could barely keep my eyes open.  Dad insisted on driving me home and thank goodness he did, my concentration span is nowhere near as good as it was before hand.  I’ve also noticed my eyesight seems to have been affected (despite having had laser eye surgery in 2008) but again, I’m not sure if this is the tiredness.  Hopefully, it will be another side effect that goes away when the chemo finishes.

The weekend was lovely and we got to see lots of Gill & James but I felt guilty for not being at my best and, in a weird way, I was actually looking forward to Monday and my next dose of chemo as I knew I would be feeling ok again for at least two days (I have come to realise Tuesday and Wednesday are my best days).   

I am going to seriously look into Complementary Therapy, my liver feels absolutely huge and is so uncomfortable (probably because its full of toxins, as it was pointed out to me).  Also, I feel as though I am just having things done to me at the moment.  I need to be doing something other than having poison pumped into me once a week.  I will be speaking to my Breast Care Nurse next week to find out what exactly I am allowed to do as this inaction on my part is getting me down.  I’d like to start running again, or at least attempting a fast walk.  My friend, Tracy, has entered a group of us into the Basildon & Billericay Race for Life on Sunday 24 June and I know I will be a “walker” but I’d at least like to finish it in a decent time.  We are called the “Mums Wot Lunch”, numbers are building with mothers and daughters on our team, lets hope the sun shines on us and we raise a lot of money.

Well, I think I have covered just about everything that happened this week so I am going to sign off now.

As always, Onwards & Upwards (though I’m sure this hill is getting bloody steeper by the week!)

Debs 

A DOUBLE DATE VIA THE PICC LINE

FRIGGATRISKAIDEKAPHOBE – that got your attention didn’t it – it means “person with a morbid fear of Friday 13^th”.  Now I must point out that I am not usually a Friggawhatsit(!), but THIS Friday 13^th was important as it was going to be a big day in the Battle of the Git.  Not only was I due my second doses of Herceptin and Taxol but, to make my life easier I was having a PICC Line (PL) put in so, in Alan’s words, I would now be an upgraded “Plug & Play” version of the old me…

Therefore, so they couldn’t cross my path, the cats were locked in the back room, mirrors were removed from walls and shelves then covered in blankets – Hannah wasn’t much impressed when she was trying to straighten her hair that morning and when we left the house I tried desperately not to step on any cracks in the pavement, which is difficult round here because Southend Council are rubbish at repairing the paving slabs in our streets – hence they are all cracked.   The neighbours must have thought I was playing Hopscotch.

My appointment was at 8.30am, which meant leaving Hannah with Tracy, one of my friends, so she could walk her to school.  We packed the Chemo Picnic Bag full of the usual goodies and entertainment, loaded up the car and set off.  Alan did a slow drive past Tracy’s house and Hannah has now mastered the art of tuck n roll with minimal bruising…..

Being as it was school drop off time, traffic was pretty heavy so the journey took us a bit longer than usual and we parked up with ten minutes to spare. – phew, I swear Alan was breaking out in a sweat.  We checked in at reception and were taken through to meet with my nurse for the day, Dawn.  After some general chitchat, Dawn explained the risks associated with having a PL (well, come on, everything else so far has had the capacity to create yet another problem, so why shouldn’t this).  The risks are as follows; an increased chance of blood clots (err chemo increases your chances of blood clots so, does that mean a PL increases the increased chance of blood clots? Answers on a postcard please), air embolism (symptoms of which include confusion and lightheadedness – would anyone notice any difference with me?), Phlebitis (it’s ok I’ve got that one already - tick!) infections, leakage (better stock up on Tena Ladies then) and last, but by no means least, your arm might drop off (only joking, I just wanted to see if you were speed reading).  Once these risks had been explained and I had signed about 40 consent pages (in blood), stating I wouldn’t hold anyone responsible if any of them occurred, we were set to go.  Dawn wheeled in a trolley which was heaving with the paraphernalia required for the PL– it took her about 15 minutes just to set up.

Now came the fun bit.  After inserting the canular (in the crease of my arm), Dawn showed Alan how to flush (clean) it with saline and – now this is the bit that made his day – she told him he would also be able to take my bloods for testing from now on.  Oh Lordy, he looked like all his Christmases had come at once.  His face lit up, he sat on the edge of his seat and watched her intently!  I am still trying to work out whether I should be calling him Nursie or Vlad.  Question: should his uniform be PVC or leather?

Once the canular was in I moved over to the bed, which thankfully was very comfy as I ended up being there for quite a while.  In preparation, and as timing is an issue with these procedures, she had already set up the onsite blood machine so that, once my bloods were taken the testing would only take about 10 minutes and, if all was ok, it would be all systems go.   Dawn handed me the “nurse call” button with instructions to push it when she had taken my bloods, which I duly did.  A nurse came in, took the red stuff and disappeared only to reappear two minutes later saying the machine had gone down and would be ready in about 20 minutes – Friday 13^th Strike One….  The same nurse was then sent over to the main hospital with instructions to get the tests done ASAP.  The minutes ticked by, we chatted about kids, life and the universe – after a while I suggested maybe the nurse had taken a number, like at the deli counter in Sainsbury’s and was still waiting in line.  Alan was sent out to flag down any passing nurse and soon came back clutching the illusive piece of paper we had been waiting for.  Dawn checked the results, all was as it should be and we were finally off. 

WARNING: If you don’t like gory bits, skip the next paragraph – If you decide to read it anyway, remember I did warn you and will not be held responsible if you pass out or throw up (but at least you will have an idea of how I felt during this process)

The PL is a thin rubber-like tube which, after being inserted into the canular is then fed up the arm through the vein, over the shoulder, out one ear and in through the other (checking your attention span again) and down the Superior Vena Cava (one of the main veins) into the heart  - well it should be that simple anyway.  However, if you’ve read my blog from the beginning you will know that nothing, I repeat, nothing has been “simple” with me.  Friday 13^th Strike Two.  Before the procedure started, Dawn had measured the distance from where the tube would enter, up my arm, across my shoulder and down into my chest so she would know how much line to use.  The line is marked in centimeters, so the nurse knows how much she has been able to feed in.  The length of line needed for my PL was about 56cm, however, Dawn could only get as far as 44cm then the line kept getting stuck at my shoulder.   She tried a number of times but things weren’t looking good.  I was determined it would go in though, as I already have a burn in one of my veins from the previous weeks chemo and the PL was going to help save my veins.  I would stand on my head whistling Dixie if it helped the damn line go where it should.  We tried me lying down with my chin touching my shoulder, which with my neck problems, was a testament to how bloody minded I am, that I managed to get in that position – nope that didn’t work.  Time was ticking by and I knew it wouldn’t be long before it was called off.  I was beginning to panic now and I asked if we could try once again, this time with me lying flat, head and neck straight, me breathing deeply and willing the damn thing to go in………Dawn agreed but warned that usually meant the line went the wrong way which obviously wouldn’t be good.  I got into position and went to my “happy place”… BINGO!  EUREKA HOWZAT!!  Finally, the line was in and hit the magic number – 56cm.  But – oh yes, there is always a “but”, as Dawn had warned me, by lying with my head and neck straight there was the strong possibility that the line would have gone astray and instead of going down into my heart, it would have gone up my neck into my head – not really where I want the chemo to be going! So, I was sealed up, taped with sterile bandages and sent off to the X-Ray department for a chest X-Ray – both of us convince I now had a blue tube waggling about in my brain. Half an hour later we were back in the Chemo unit waiting room doing what we do best - waiting…..   The door opened, my name was called and as I looked up Dawn was smiling at me and giving me the thumbs up.  Success – well done Dawn, I always had faith in you.

Now I was “Plug & Play” I moved through to the ward and was hooked up to a saline drip to prepare me for the next dose of Herceptin.  The Taxol and pre-meds were ordered up but for some reason the Pharmacy was on a go-slow that day, so things took quite a bit longer than they should have.  We finally got going with the pre-poison poison just after lunchtime.  By the time I’d had all my treatments we’d eaten the contents of the Chemo Bag, sampled the delights of Costa Coffee, read our books and watched some afternoon TV and now it was nearly 6pm.  My final dressings were done, I had my chemical bin (for the old dressings and used sharps etc), my box of new dressings and we were on our way home.  Ten hours is a very long time to spend in the unit and we were both exhausted by the time we got in.  Dinner and bed were next on the agenda.

I woke up at 4am Saturday morning – damn steroids are not only turning me into a Human Dyson, they are ruining my beauty sleep too.  I decided to get up and eat my first breakfast.  As I don’t like to waste time I updated my blog, did my online banking and booked my Tesco’s delivery slot (at the rate I am eating, we will need two deliveries a week soon).  Once the rest of the family finally appeared, bleary eyed at 8.30, I had another breakfast and announced I was feeling fit and ready to face a shopping trip to Lakeside.  Alan started heading back to bed but Hannah, who received vouchers for her birthday which were burning a hole in her purse, got showered and dressed in record time – she even skipped the hair straightening routine!  We spent the whole day at Lakeside, I needed to stop frequently to drink and rest but other than that it was a lovely, normal day.

I fully expected to experience some side effects over the weekend, especially after having such a lot done in one day but apart from being quite tired, I felt fine in myself.  However, the PL was uncomfortable and my arm felt like it didn’t belong to me – like an alien arm - if you have seen District 9 – it was just like that.  It wasn’t hot or swollen, so I wasn’t worried about an infection but it didn’t feel “right”.  I hoped it was just a case of me mentally accepting this foreign object I would have to live with for the next 3-6 months.

It was Monday that the side effects started making themselves known.  It started with a nosebleed when I woke up, this is from where the lining of my nose has thinned and my nose hairs have fallen out so there is nothing to stop any dust getting up there and causing irritation.  I started getting headaches, a rash appeared on my cheeks – I did worry that I was developing an allergic reaction to Taxol, but after a chat with my chemo nurse, I was assured this wasn’t the case – thank goodness.  Early menopause is another side effect of Taxol and so now my periods are now totally screwed up – well, at least I know I’m not pregnant.  I was also quite spacey on Monday, but I don’t think anyone realised lol. 

I had a chemo free week this week so arranged to meet up with my friends Rita and Jackie.  We’ve known each other for donkey’s years (Jackie and I grew up next door to each other and Rita is married to another childhood friend).  We always have such a laugh whilst we are putting the world to rights.  Again, this is better than any medicine the Dr can prescribe.  I think all my friends were so shocked at my diagnosis and when they see me looking so well, despite undergoing treatment, it reassures them that I’m still me and I’m fighting The Git with all I’ve got – and more.

Right back at the beginning of all this, my sister Gill said she wanted to do something practical to help me.  We chat a lot on the phone, skype and emails but as she lives so far away she feels she can’t be as involved as she would like.  So, after speaking to a friend of hers who has survived BC twice in the past 12 years, Gill decided she would arrange for me to have a cleaner.  My brother Kevin and my youngest sister Kate are also contributing as they too felt they wanted to help in a more practical way.  At first, though I was touched that they would do this, I couldn’t really see that I would need one, but agreed to think about it.  Well, 8 weeks later with two buggered arms and the energy levels of a 99 year old, I am so thankful to them for arranging it.  Kathy started on Thursday and did all the jobs I find it difficult to do at the moment such as cleaning the bathrooms.  I have obviously been doing them since all this began, but not as thorough as I would normally and then I find myself completely knackered afterwards.  After she left I felt so much better just knowing the house was clean (if not cleaner – she dusted bits I wouldn’t normally bother with lol) again. 

My PL hasn’t felt right all week but I wasn’t sure if it was real or imagined.  Anyway, with the weekend coming up I didn’t want a problem to arise and have to go to A&E – the thought of bumping into that particular 12-year-old Dr again gives me the creeps.   I called the unit but they were closed so I rang my BCN.  Her advice was to call the ward that I had been admitted to over Christmas as they would be able to help further.  I did this and the upshot was that they wanted me to pop in for a check up.  See, I can’t even have a week off can I?  Anyway, the nurse examined the PL and said my muscle was a bit swollen and there was some discharge from the wound site.  This was an indication of a possible infection.  A swab was taken and has been sent off to the lab to “see if something grows” yuck.  So, I am now on antibiotics – and we all know what nasty little side effect they can have, don’t we ladies!  One of the Oncs was in the unit so she checked me over and said there were two possible issues; an infection or a blood clot – what fun!  She, personally, doesn’t think it’s a blood clot so I am holding her to it.  She also said she would notify the Dr who will be on-call this weekend and let him know what is happening.  If my arm gets worse or I feel ill in any way, I am to call the emergency number as I may need to be admitted for blood thinning drugs or IV antibiotics…what do you think my chances are?  I called Alan and explained what had happened.  Obviously, he is concerned about the problems I am having with the PL but, though he didn’t say as much, I think he was a tad disappointed that he wasn’t going to get to play Nursie just yet – there’s always next week love – and guess what – next week you need to take my bloods too!  I’ll get in some steaks and some fava beans and put a nice bottle of Chianti on ice shall I?

Before I sign off I have two lots of good news to share this week.  One, I had a phone call from Tesco’s yesterday.  At first I thought they were trying to flog me a credit card, broadband or life insurance and I was ready to tell them to beggar off, but then the very nice lady announced I have won a competition I entered at Christmas.  I vaguely remember doing my shopping on one of those very early mornings and seeing the banner “win a share of a million clubcard points” – well I’ve won 10,000 – not that I had a clue what this would mean.  So, I called my friend Kerry – who is an expert with these things – and she told me I have won the equivalent of £100 or £400 if I use them in the right way.  Excellent news eh!  Hannah is already plugging for an Ipad – hmmm I have seen a handheld Dyson that I like.

The second piece of good news also came via a phone call.  My BCN, Laura, rang to see how I was (she had heard about my PL problems – I have a feeling my name might be on a list over there, you know the “troublemaker” list).  She also asked if I had been told my biopsy results from my poor old left boob.  I said no, that I was still waiting.  “Your results are all clear Debbie – nothing to worry about, your left boob is behaving itself”  I felt such a sense of relief.  With everything else that has been going on, I had pushed it to the back of my mind but I immediately rang and texted Alan, my parents and my mother-in-law, to put their minds at rest.  I also posted it on FB to let my wider circle of friends know – everyone was so pleased for me.  What a lovely way to start the weekend!  I was planning on taking my boob out to the pub to celebrate when one of my friends reminded me I was on antibiotics – spoilsport!

Anyway, that’s it for this week – oh, I almost forgot to tell you my hair started falling out on Friday.  I was in the shower washing my hair (one handed – you try it – its flipping difficult) when all of a sudden I had a mouthful of hair – gross. When I could finally open my eyes I looked like Chewbacca.  Thank goodness I’d had my hair cut very short on Monday – it was very thick and shoulder length before.  I imagine I would have looked like Monster from the Muppets if I hadn’t had it cut and thinned (I kept it all in a bag to show Alan – anyone need any cushions stuffed?).  All along I have been blasé about losing my hair.  “I’m not bothered” was my stock response.  However, it has bothered me more than I believed it would. It’s a vanity thing I suppose.  Hairdressers have always commented on how lovely and thick my hair is.  It drives me mad as it takes nearly an hour to blow dry.  Even after having it cut it was still quite thick.  Also, my head itches like crazy and every time I scratch it, another load of hair flies out.  Jenn has warned me to keep my head back when I am cooking, otherwise the kids might be getting more than they bargained for in their dinner.  What if I get a cold and start sneezing – it will look like a dust cloud.

I honestly thought I wouldn’t have to deal with this side effect until they change my chemo in March (EC is a much stronger poison than Taxol).  I was thinking it would be a bit warmer by then too so my poor baldhead wouldn’t freeze.  But, heigh ho, its happened so I will have to just deal with it.  I hope it doesn’t snow until I get my wig sorted.

I am meeting Maria the “wig lady” at my next chemo appointment on Monday for her to show me her wares.  I have heard the NHS wigs are not really designed with the younger woman in mind (Oi! in the case of BC I am considered young…) and I don’t really fancy looking like one of my clients on my Meals on Wheels run, as lovely as they are, most of them are 80 years plus and favour the blue rinsed perm.  Hannah wants me to wear one of those Health Lottery wigs – I saw the advert last night, they have five different colours – that’s Monday to Fridays sorted! 

Luckily, I had already tried on a few wigs at Suzies in Lakeside last weekend and have chosen one that closely resembles my normal style and colour.  Maria told me she will see if it can be obtained via the NHS but, if not, my lovely Dad has offered to buy my new barnet for me.  You get the VAT back on wigs and I’d like to see the HM Revenue & Customs man’s face when Donna (my work colleague) puts that particular purchase through on the Company VAT Return, considering we are a private hire coach business.

Okey doke, I am signing off now, as I am ready for breakfast number three.

As always, Onwards & Upwards

Debs x