Thursday 20 September 2012

Regular at 5* City

It’s a bit bad when nurses of wards know you by name and remember what your daily and nightly drinks are whether it be tea or horlicks, but over the years that is just how its turned out.  
 
I had my chemo as planned on the 13th.   Because I was delayed from my last chemo, my weeks are a bit mixed up now and instead of receiving Herceptin and Zometa on day 1, I now receive these on day 8 of my cycle.  (Confused? Trying being me). Still trying to get my head back into turning everything into a positive mode, I found the positive in this by telling myself I had an additional week to get my head and body sorted (meaning the aches and pains) before getting the pure lead in the bones feeling that the Zometa gives me.  Lee has been wrapping me up in cotton wool and has gone a little overboard.  We hadn’t even gotten through the front door after driving home from chemo before he ordered me to go upstairs, get my PJ’s on and rest on the sofa. Which reminds me; we have a fabby brand new mobility car, who Lee has named Barney.  Laugh if you like, but she is a She, I know this cos Lee said so, and he has named her Barney cos she’s purple.  We have gone from a Citroen C3 Picasso to a Vauxhall Insignia Sports Tourer (posh hey?) ha ha, don’t let the sports tourer bit dazzle you, its just a posh name for an Estate.  I love it especially after spending the last 3 yrs being thrown around in the not so comfy seat of the Piccaso and having to hang on for dear life going round corners and roundabouts, this new pap pap is a dream.
 
Right back on track! Lee ordered me into my PJ’s and to relax on the sofa.  I did as I was told apart from a slight detour into the kitchen to put the kettle on, Lee shouted at me and ushered me onto the sofa ordering me to stay put.  By the time he returned back from the kitchen with my hot mug of tea, I was snoring my head off. Sat bolt upright, head dangling forward with chin touching chest, drooling and snorting. I was out for the count for a couple of hours at which point I woke up absolutely freezing.  Hot flushes on top of hot flushes means only one thing and that is dripping wet Pj’s that send you shivering like you were sat in the Atlantic, and so the old routing of dressing gown on and dressing gown off commenced.  After an hour or so of fidgeting from hot sweats to freezing cold, I gave Lee a kiss goodnight, changed to a fresh pair of PJ’s, settled in bed for the night and was out for the count without my head hitting the pillow.
 
I had my last appointment with Boobie Doc on the Friday morning, just to check that the swelling and hardness of my infected boob had subsided.  All good on that front (ha ha excuse the pun), Boobie is looking good and I was discharged with the normal ‘Call if you need us’.  No more anti’s (apart from the oncology one’s to start in a weeks time), no more boobie doc appointments and whey heyyy no surgery needed which is a great relief cos even though I said previously, that I wished they’d just operated at the start of the infection and be done with it, my feelings for this were just down to being fed up of the anti’s and feeling so darn tired all the time, with the added stress of not knowing if they would operate in the end anyaway, not to mention the delay with my chemo.  To lose my reconstruction now after all the years and surgery to rebuild me, would be devastating.  My boobs arn’t perfect and my right side is a good inch higher than my left, but by heck with a decent bra I can show off my cleavage as good or if not better than the next person.  I’m not vain, I have known to be in the past, but with all this breast cancer stuff, treatment, boob loss and hair loss, one learns to accept these changes in life and learns to appreciate what you have and make the most of what you got and in my case; so I’ve been told, is my personality and heart. 
 
Still taking things easy and resting as Lee is ordering, I spent another day lounging on the sofa, glued to the TV.   I felt no different to how I’d been for the last couple of days, in fact I felt better as I didn’t feel so tired, but I was still feeling cold.  Lee sent me up to bed, following me up with the white blood cell booster injection which friggin hurt like hell and then passed me my thermometer.  Bloody marvellous, temp was 38.4 and I was back in the hospital by 9.30pm.
 
It amazes me why the hospital admittance ward for cancer patients can’t access a friggin portacath.  My arms are still bruised from the CT scan, but the doctor was determined that he could find a vein to hook me up to an IV.  1, 2, 3, 4 stabs later (all in and around my bruises) and he smiles thinking that he has done it, only to see my arm start to balloon like a water melon on the first flush of saline going through it. Now I’m not a doc, but after 5 yrs of seeing this happen, I know when a friggin cannula is in or out of my vein.  The ward doctors response to this was “I’ll slow the drip down”, (oh fabby idea, why didn’t I think of that NOT).  Next on the agenda; Oh you need blood tests do you?  Erm I’m not cannulated properly and it won’t give out blood, so brilliant ward doctor decides to use non lymph node arm without any hesitation what so ever saying it will be ok.  I hope so, cos only 5 minutes later he returned back with another needle saying he hadn’t taken enough blood and needed to stab me once more. 
 
Lee was in stitches; every time a needle touched me, my legs left the bed, going rigid and grasping at thin air as the sound of ‘Eeeek’ came out of my gob.  Why on earth I do that is beyond me.  Confusion got the better of my team of docs.  My blood counts had gone up quite drastically, just from the one injection that Lee had given me at home earlier so I wasn’t neutropenic, my temp was back to normal and blood pressure, although always slightly low was a good normal reading for me.  Speculation to whether I still had an infection along with being neutropenic and dehydrated were all words that kept going around with one doc saying that my tiredness, lack of eating and hyper stimulated emotional state of tears falling from one’s eye’s at the drop of a ... a drop of anything really whether good or bad, could be a side effect of coming off the steroids that I was on way too quickly.
 
Steroids could well be the answer and so into the cannula I was given a good dose of IV antibiotics and a good high dose of steroid that the doc said we should see an improvement in a couple of hours, which in steroid terms means one thing; Climbing the walls and wide awake fidgety syndrome.  Oh great! At this time of the night too..  Bloody hell! Thistles in ya knickers.  I had forgotten all about them,  I had them back in 2007 with my EC Chemo, but what I can remember was that they were definitely not as stingy as these were, AND didn’t last as long either.  Talk about legs raising off the bed with needles, well the whole bottom part of me was raised off the bed this time and wanting very quickly to stick my arse into a bucket of cold ice water, Lee who was having fits of giggles now with my legs couldn’t get over how quickly the steroid hit from half way up my arm to my arse.
 
I spent the night in the admittance ward and moved onto the normal cancer ward the following day.  “Hi Karen, Bed near the window in Bay 3” Ward sister shouted over to me as I was wheeled onto the ward  “Cheers’ I said with my usual smile and “Wooo; any chance of a cuppa” I asked.  “Of course, tea with no sugar” was her reply.   Now this is when you know things are bad, when nurses remember your name is one thing, but to remember every fine detail of how I take my tea, and automatically bringing over an additional blanket cos they remember that I’m the one who’s always cold is something else.  I had my portacath accessed at last (yippeeee) as my arm by now was swollen so much and was a complete black mess of bruises. 
 
I wasn’t going anywhere quick, and the usual thing of being admitted for one thing and then being kept in for something totally different surfaces.  IV fluid bags were constantly going in, but nothing was coming out.  My pee pee outtake was being monitored, food intake was monitored, drinking was monitored, blood pressure and temp was monitored which was going up and down all over the place.  IV ant’s 3 times a day, Aural anti’s 3 times a day, my normal pain meds, along with a couple of extra’s for my bowl movement, burning stomach and of course a bucket load of tiny pills that were called ‘Steroids’.  2 injections per night; one to boost blood count and one to thin blood, my stomach had become a large game of black dot to dot.  
 
Wednesday morning I woke up to find my bed sheets were covered with blood, my hands were covered, and after sitting up and patting myself down to see where it hurt I found my PJ top was dripping.  Underneath was a river of blood swimming up and across the whole of my stomach.  “Arghhh I’m bleeding to death” I yelled, only to find after cleaning myself up that the culprit was from the blood thinner injection I’d had the night before.  My blood had become so thin, it wasn’t clotting anymore, and it was gushing out of the tiny pin prick hole.  It bled through swabs and swabs and so the decision was made that there would be no more of these injections for me for a while.  It was late in the evening to get me healing and the last swab removed.  I was being a patient patient, I wanted to get right, I didn’t want to go home only to finish up back in here in such a short space of time again.  My chemo was due on Thursday and I definitely didn’t want that postponed again.  but each time I asked about my chemo, I was told I would have to wait and see.
 
There is only one thing worse than being stuck in hospital and that is being stuck in hospital with no way of communication.  Our life styles rely on mobile phones, to ring for a natter to anyone who will answer and to send endless amounts of pointless texts.  Then there is the brilliance of internet access and facebook.  Stupid frickin phone, By Sunday lunchtime I had used up all my minutes and my bloody internet access ran out and then the unbelievable happened; I could only receive incoming calls and texts.  I shoved £10 credit onto the overly priced hospital TV to get access to the phone, telling everyone I cannot ring or txt out, but spent the next 5 days staring down at my phone for it to do nothing.   Bit exaggerated there, I got loads of text messages from some brilliant friends, thanks girls for making me miss my phone even more, cos I couldn’t answer you back lol.   Luckily, I had a few more visitors this time, Lee, his mum, his aunty, his dad and step mum and of course mi Bessie mate Pauline.
 
After a long lonely boring week on Thursday 20th September after breakfast I was told I could get dressed and head down to my chemo unit.  Fanbloodytastic, no delays, well apart from the normal delays of chemo day unit of; chemo aint ready, or all the nurses are busy with other patients.  After my full 5 minute dose of chemo, (ha ha still going on about how quick this one is), followed by the cocktail of Herceptin and Zometa I was free to go home as soon as my home meds of steroids etc.. were made up.
 
Late tea time and I’m home.  I’m still tired, but am feeling much more alive and definitely think the problems that I have been having are all mostly down to the lack of steroids going into my body.  I am on a reduced does of 4 mg a day for 7 days when they will be reduced down to 2mg.  This will then be discussed with my oncologist and monitored.  It could be a matter of staying on a small dose whilst doing this chemo, which I would rather be on and have the Hamster Cheeks and Buddha Belly than be drained and lifeless like I have been.   I am still having to take the antibiotics but they will (fingers crossed) be done with by next Thursday.  The hospital have upt my dosage of oxycontin, so all being well, I will be buzzing around high with energy with the steroids and the super duper pain meds will have me pain free to keep up.

Wednesday 12 September 2012

Infections and Delays

3rd cycle of chemo started really well.  I had my day 1 chemo with the Herceptin and Zometa, rested for a couple of days and then made the most of the week ready for my day 8 chemo.  Day 8 chemo came and went, felt bloody fab, so much so that I went along to a wedding reception on the Saturday evening just 2 days after and stayed up till early hours or should I say late hours of the morning drinking my favourite tipple of wine. And I have to add here that I looked bloody good in my blonde hair and slinky sexy number that I wore, not one to blow one’s own trumpet but hey someone’s gotta do it. 
 
Monday 26th August is where things started to go wrong.  I woke up feeling a little tender around my reconstruction on the right side (my breast cancer side) as the day went on, my boobie started to go a little red and a little hot.  My temperature was normal but I decided that I would pop my head in to see my breast nurse the following day after my pain management appointment at the Hospice, before heading up the motorway 60 miles to visit my mum for a couple of days.
 
As soon as my nurse saw me, she did the whole blood pressure and temperature thing and gathered lots of blood from my port to be sent for testing From there I was seen by an oncologist who then sent me over to the breast clinic to see my (plastic surgeon) breast doctor, who then sent me for an ultra sound and before I knew myself what was happening, I was in private isolated room in a hospital bed with a drip going into me along with lots of intravenous antibiotics.   I was infected; but goodness knows where or how I’d picked up the infection.  On top of that I was also told I was Neutropenic. “Whats that then” I asked.. you would think by now they would stop using all these technical terms cos I just don’t know what they mean and even after they explain, I forget,  hence me telling people for a couple of days I was neurotic.   Anyway neutropenic, the correct word, is where the white blood cells are really low and it affects the body’s ability to fight off any infections.   I was put on nil by mouth and on the surgery list for the following morning depending on how I responded to the antibiotics through the night, at which point I was now on IV an aural anti’s, and had lovely black marker drawn all over my boob to measure where the redness and swelling was.  I escaped surgery on the Wednesday morning as the redness and heat radiating from it seemed to be fading, only to be put back onto fasting and the surgery list for the Thursday morning as the heat and redness starting up again.  I escaped surgery once more.
 
After 5 days of being isolated from anyone with infections, and receiving Intravenous antibiotics I was allowed to go home with some aural anti-biotics.  Mr Boobie Doc still warned me that surgery may be required but fingers crossed we had caught the infection in time.  I was seen a couple of days later and issued another 2 weeks of antibiotics to keep on top of the infection, still at this point, hopefully avoiding surgery.  Chemo was postponed and by now I was wishing that they had just took me into theatre on the same day as the infection was found because at least I could be having chemo and killing squatters and be back to how I was before all this infection stuff started.  The antibiotics gave me thrush, so had more antibiotics shoved down my throat for that and then I plummeted down with energy levels, couldn’t eat and was only useful at making the sofa untidy, or using up all the Kleenex and toilet roll in the house from my constant over emotional tear ducts.  All I wanted to do was sleep.
 
My breast doctor, who has been keeping a close eye on me, said that the antibiotics would make me tired and gave me a talking to about eating properly.  Easier said than done, when just the thought of eating something makes you feel sick.  I was living on glasses of milk and driving Lee mad as he was trying to tempt me with every delight available, such as pizza, Chinese and Indian, my favourite cousin.  He even failed with attempting me with even worse junk food (my favourite) crisps and chocolate.  I was put on protein drinks I counted the days away until the last of my antibiotics were taken.  As if on cue, I started to pick up just in time for my next CT Scan and Oncology appointment.  I was out sitting in the garden soaking up as much vitamin D as possible and having some nice quality time with Lee, Luke and the Dogs.  I was managing to keep awake for more than an hour at a time and this was a massive improvement.
 
The bruises from the previous CT Scan hadn’t healed enough and so doing something that were not supposed to do, opted to go for the side that I’d had all my lymph nodes removed.  We hit jackpot first time with a nice small but juicy vein that probably got the biggest shock in its life since it hasn’t been used are even acknowledged for 5 yrs. 
 
With the Antibiotics finished but still feeling quite tired, I told Lee that I thought maybe I would be better off delaying chemo for another week.  I didn’t feel ready and after talking to my breast nurse whilst taking all my bloods etc... She tended to agree.  I had it all sorted in my mind, I was going to take control of my treatment but then all of that went out of the window as I got carried away with my Mr Nice oncologist and my CT Results.  I didn’t expect much this time with missing a cycle of chemo, but to my relief, the cancer is still stable, with a bit of question mark as to whether there has been a reduction or not.  This depends on how the radiologist measures, as each one has their own way of doing it.  Saying that I am pretty chuffed that the cancer is at the very least stable with no change and not grown any.  Mr Lovely oncologist checked my now non-infected boob, reeled off what the plan was going to be which included to prescribe a daily injection to boost my white blood cells for 7 days after my day 1 infusion and then followed by 7 days of anti-biotics starting from my day 8 infusion to make sure I didn’t have a repeat performance of developing neutropenia and infection.  That was it, all sorted and before I knew it I was out of the door smiling, almost standing upright and looking forward to chemo tomorrow.
 
So much for me taking control!  Part of me still feels that I would benefit from another week off treatment, but another part of me is saying ‘get on with it and get some squatters squashed’.  I am left wondering how much reduction I would have had ‘IF’ I’d had the full 2 cycles between my 6 weekly scans, so i’m on a race now to complete the next 2 cycles without any delays to see how much more cancer can be reduced.  I’m still tired, but hopefully the injections to boost my white blood cells will sort this out.  
 
My normal routing for the night before Chemo has always been to have a relaxing evening with a nice glass of wine.  I have been tea total for 3 wks now and even though my antibiotics have finished I don’t actually feel in a wine mood.  Maybe it’s because I’m still run down and tired or maybe it’s that little voice in my head saying ‘Don’t want a hangover’ I settled instead for a mug of milky Horlicks.