October Madness

Today is the first day of October and I think the world has gone mad. Now that is a strong statement coming from me. With me being a self confessed mad woman that you either hate or love. Well firstly for madness is that I am back to doing my normal mad things of doing everything I bloody shouldn't. Well; a bit over exaggerated, but I did cheat in the wine department.  I am going to blame this bit on the medication, but I got my dates mixed up and for days lounged around the sofa, hugging a bottle of wine, getting friggin bloody excited at the thought of being able to drink it, only to be disappointment when it appeared that I had more antibiotics left than I had bargain for.  It was only a day early but ok, I cheated and had poured myself a glass of wine, while i still had 2 doses of anti’s to take.  Oh come on, I have gone months without a drop and I have been really good, so a small glass (which it was) wasn’t going to hurt.  In fact it had the most amazing reaction on me.  I had the best night’s sleep I have had in ages, totally undisturbed.  It was a snoring in heaven experience that I woke up the next day feeling pretty good and itching to get out of the house and climb mountains.  Don’t worry, I have been good and have been spending this last week, relaxing and getting myself ready for this week’s chemo and appointments at the hospital, starting tomorrow with my super duper Mr Pain Doc at the Hospice. 

 

Anyway enough about me and my wine antics, back to why I think the world has gone mad.

 

For weeks now the world has been turning into a beautiful colour of pink, with large and small corporations and companies looking forward to making money based on fear that lurks in the hearts and souls of every woman.  But breast cancer isn’t beautiful as portrayed by the colour, nor does it only target women.

 

Breast Cancer is the second biggest cause of death from cancer for women in the UK, but the good news is that survival rates are improving, which is probably down to more targeted treatments, earlier detections and better breast awareness.  Unfortunately the downside is that the number of people being diagnosed is increasing 

 

Everyone is on the case today, there are new advertising campaigns about breast cancer awareness and none stop talks about the subject, but all of them seem to be focusing on one thing and that is the  TLC (Touch, Look, Check), to find anything that looks or feels unusual.  But to me breast cancer awareness means much more than just checking, or getting your partner or next door neighbour if you like to check your boobs.  To me it’s about the emotional aspect of it, the feeling deep inside when finding a lump, the emotions everyone has when hearing them dreaded words ‘you have breast cancer’ and the emotions of getting through treatment with the hope that you can beat the fooker, only to be followed by the fear of it returning.

 

I’m not saying that I am against awareness campaigns that have been released I applaud and welcome them.  But surely, shouldn’t there be some sort of emotion attached to them.  The picture of Mel B with her husband cupping her breasts to hide her modesty as caused a lot of discussion.  I am all for that sort of thing but didn’t she have a boob job at some point in her life. (correct me if I’m wrong) but if that’s the case, them I am sorry, but I find it rather insulting; as I have implants, never chose them, would never have chose them and have some bloody nasty scars to go with them.  If she hasn’t had a boob job, then I apologise and say good on ya Mel and nice tits.   But getting back to emotion, wouldn’t a poster of a breast cancer survivor have more of an impact for awareness though?  A survivor (me me; i’d do it) with her husband stood behind her (not sure he would lol), cupping her breasts/chest with just a reveal of a scar there to show people that this is reality.  This is what can happen if you find that lump that they are only telling you to look for.  It’s as though the reality of breast cancer is just too much for people to handle and that is why the awareness only stretches from checking yourself and going to your GP and that early detection CAN save lives.  

 

I love the colour Pink and before my own diagnosis, used to have lots of pink clothing, had the typical girly pink bedroom as a child, and at one time in my life, developed a fad that I had to own every single shade of pink lipstick available to compliment my beautiful blonde hair.  Personally I feel that too many people are cashing in on the colour, knowing that the ‘Pretty Pink’ colour will attract people to buy goods when they say they are raising funds for Breast Cancer Research and other Breast Cancer Charities.  Still this is not a bad thing, if money is donated and depending on how much of the money actually goes to them.   I came across a breast cancer bouquet of Pink flowers costing £26 the other day, with a promise of donating 10% to a breast cancer charity; Woopeedooo, 10 bloody fantastic percent, but where does the remaining £23.40 out of every £26.00 go when the usual average price for such a bouquet is usually around £10, yes you got it, it goes straight into their greedy little pockets.    

 

Now my pet hate is the stupid games that people are taking part in, and have tried to include me in, but can someone please tell me how changing a facebook status to ’10 inches’ can actually raise awareness for breast cancer, when in the chain letter it states that it’s for women only (bit of sexual discrimination going on I think) and also not let on what it means even if asked.  These games and I’m sorry if I offend anyone, but they are bloody downright infuriating.  If you want to raise awareness, then do it.  Write on your bloody status ‘be breast aware’ or something, cos writing your shoe size or similar is not going to do it.  

 

Also being breast aware does NOT only apply to October.  Sorry everyone, but lumps, dimples, leakage rashes and nipple changes can also happen in January, February, March, April, May, June, July, August, September, November and December.  I am proof of that cos I found mine in the month of March. And you know what? 2 weeks prior it wasn’t there. 

 

I was always good and checked my breast regularly.  I was good in 2006 when I found my very small pea sized lump and went straight to my GP.  I wasn’t diagnosed though, I was told I was paranoid and wasn’t diagnosed for another year, but by then the very small pea sized lump had grown to a massive 80mm.  Maybe; just maybe if I had been stronger and demanded a second opinion, I wouldn’t be here today writing about my breast cancer. (big possibility, report from an independent oncologist says chances of re-occurance very small)   The point I am trying to make is, I knew I wasn’t paranoid, I knew that the lump I had was different to my other usual lumps and bumps that most of us women experience at different stages in a month.  So if you feel or see anything, no matter how small, please please get it checked, and checked to your satisfaction.  We know our own bodies better than anyone and the earlier you start to examine your breasts the more in touch with yourself you will be.  You will know what is and isn’t right for you.

 

Can you describe in one sentence, what breast cancer awareness means.

 

My sentence would be ;  the heartache and fear of not being around for another year.

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 13^th.   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 20^th 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.

Infections and Delays

3^rd 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.

Scans & Trials

It wasn’t so long ago that I was getting all frustrated and nervous about being accepted onto a chemotherapy trial.  I didn’t get the actual trial drug, but being on the trial means much more to me than just that.  It means I will have more regular Scans, will be more closely monitored and have in return received various different telephone numbers that I can ring at any time.

 

I have now completed my 2^nd cycle of chemo and am happy to report that I am feeling pretty good.  Scrap that; I am feeling downright bloody fantastic.  I was unsure whether the tiredness from cycle 1 was down to the lack of steroids that were being shoved down my throat everyday, and thought that maybe it was all down to the side effects of the Eribulin chemo, as every joint and muscle in my body was bloody painful too, along with the sore throat, gums and spotty gob that I had also developed.  Well!!! I am here today to tell you that you cannot keep me down in the dumps for long.  With the help of the steroids, my energy levels have risen, so much so that I have been out and about and walking the dog every day, ohh and get this;  I have also dabbled with a bit of house work too (well overdue and hubby well pleased ha ha).  So the Steroids helped with the tiredness but what about the aches and pains, the mouth sores and spotty gob?  

 

Amazing how our minds forget, but again Lee hit the nail on the head.  The aches and pains were nothing to do with the chemo, they were nothing to do with not having or taking the right amount of pain meds.  They were all down to the fact that I am receiving the biosphosphonate infusion called Zometa again.  I had this for a year in 2009 and the symptoms I had from it then, are exactly the same as I am having now.  A couple of days after infusion, I get the feeling of having had pure lead poured down every bone in my body to the point where they feel too heavy to move.  To lift a finger its ‘Oach’, to move an arm its ‘Oachee’ and to lift a leg its ‘Wooo can someone do it for me please’.  Now I’ve realised this, the aches and pains didn’t seem too bad this last infusion and just readied myself to have a few lazy days as instructed by my gorgeous hubby.

 

The mouth sores and spotty gob are unfortunately a side effect from the chemo, but I have been given some mouth wash and cream that would hopefully keep it under control.  Today, I have one cold sore type of spot left, but the cream is working wonders at stopping any further ones exploding across my gob on full view for everyone to stare at whilst having a conversation with me.  The sores inside my mouth have eased to virtually nothing and just have the dry mouth and nasty metallic taste that only delving time and time again into the milk carton seems to sooth.

 

Well back to the important stuff.  Scans and Trials.  I have completed my first 2 cycles of chemo and was scheduled for a CT Scan on Monday (6^th Aug) to see how I am responding to the new treatment.  

 

Firstly on Monday I had to be at the hospital for 11.15am for an ECHO, this has to be done to make sure that the Herceptin isn’t having an effect on my heart (a big side effect of the drug).  There was a bit of confusion here; I reached the department only for them to tell me that I wasn’t booked in and should go to the other department who did heart scans, which was at the other end of the friggin hospital.   Well when I got there, I was greeted by my Breast Nurse who was also having a little problem herself getting my appointment sorted out.  Trials can be strict and when they say a scan or anything has to be done in a certain time-scale, they mean in that time-scale and not a give or take a couple of weeks.  Implants and ECHO’s are not a good combination as the implant can interfere with the images that are required, but after the Mr Echo Man did his probing and digging deep into my rib cage and jugular he captured the images that was required and I was free to go. 

 

4.20pm and I back waiting for my CT Scan.  Luckily there wasn’t much waiting around this time and only required 4 stabbings of the needle to get the cannula in for the radioactive dye to be pushed in, that gives the weird warm feeling as though you have pee’d myself.  My veins are totally knackered and so for the time being I have a nasty looking bruised mess that resembles an overused junkies arm.  Lots of TLC and avoidance of needles for the next 6 weeks and I will have my arm put right ready for the whole ordeal to start again.

 

I have just come back from my oncologist appointment and still down right blooming giddy with excitement.  I went through the usual of having bloods done and my port flushed through first,  followed by lots of questions of how I have been for the last couple of weeks with my Breast Nurse; meaning the side effects, had my blood pressure done and was weighed ready for my dose of chemo to be made up for tomorrow... and then I got the news from Mrs Oncologist who didn’t beat about the bush at all.  I am responding really really well.  So well infact that even my oncologist sounded like she couldn’t believe my Scan results.  Ok so how good are they?   Bloody fantastic (says me still jumping up and down like a raving lunatic)

 

Measurements of the 2 largest lesions in my liver in May were 13x11cm and 11x11cm, after the 9 weeks of no treatment these had increased to 29x24cm and 20x18cm.  6 weeks later and after just 2 cycles of Eribulin the measurements are now down to a staggering 22x13cm, and 11x10cm.  Massive reduction by nearly half their sizes and it’s not just those 2 lesions that have shrunk either.  All lesions in my liver have reduced by nearly half their size.  “Get in There” was Lee’s response whilst he jumped up out of the chair and raised his arm up into the air as though he were a mad football supporter cheering on after his team scoring a goal.   I on the other hand was more laid back. Ha ha, not on your nelly, I was fidgeting about with my stupid grin slapped across my face, itching to get out of there so I could tell everyone in sight and call everyone on my phone, but before any of that could be done, Lee and I had to sit, listen and talk about my treatment, side effects and oooh my steroids. 

 

Why on earth does she want me off the steroids.  She took me off them before and I felt fooking crap.  I asked to go back on them and have proved that with them, I can live a good healthy active life rather than curled up on the sofa with not enough energy to even lift a glass of water to my mouth, and that glass being a teeny weeny glass.  Even one of the nurses earlier commented on how well I looked compared to the other week.  I can walk upright rather being bent over, I’m awake for goodness sake, i’m eating and laughing and if it wasn’t for the rug on my head or should I say the baldness that I have, no-one would even know that I have cancer and having chemo.  Anyways, my Mrs Onc knows best and for whatever reason I am being weened off the steroids again, but this time going 8 days between each dose till i’m off them again rather than the 5 days she did the last time.    I’ll just have to see how I go.

 

I rang everyone, I text everyone with my good news.  I felt that the chemo was working because the lump in my neck felt smaller, but I did not expect the result I have just had.  Its leading me to think that maybe, maybe this chemo treatment is the one for me, the one that is going to work at obliterating every single squatter out of my body and to kingdom come and with the plus side that the shitty side effects are not that shitty, especially compared to the capcitabine.  I will have to wait for my next MRI to find out how the chemo has worked on the bone metz, but I can imaging that this could be a long wait as I don't have them that often.  Bone metz isn't life threatening so the main focus is my organs and making sure the squatters dont breed too much in and around them.  For once though I am definately looking forward to my next scan in another 6 weeks to see how many more squatters I have killed.  Today is definitely a day for some celebration time and I am going to do it in style.  I am going to chill and relax in front of a good film and enjoy a very large glass of red wine (or two).

Hair so Dear

I cannot believe how much things have changed over the last 5 yrs !!!  

 

Let me roll back to 2007 when I was given my first NHS wig prescription that said to supply ONE WIG.  I swapped the prescription for my first wig that would have retailed for £290. No exchange of money was required as the prescription was for ONE WIG.  Then in 2010 and losing my hair again, I was given another prescription.  Again stating to supply ONE WIG the prescription was swapped for a wig that would have normally cost £200 but again no money was required.  Even though wigs aren’t the best of things, at the time it’s a sort of  ‘Oooh ta this is Fabby’ and you walk out of the wiggy shop with a big gleam on your face thinking that you have just won the best hair-do award by Vidal Sassoon or something, only to realise that months later it spends half the time being snuggled up with the dog, draped over the back of the chair, stuck in your handbag or in my case thrown across the bedroom floor due to the itchy sweaty feeling that they give you.

 

It didn’t bother me back then when I lost my hair and let me tell you it bothers me even less now.  I’m used to not having hair or much of it, but I’ve always had my rug (wig) as a backup just in case I have gone out somewhere that I wanted to feel a little more normal (if there is such a word for me) and dressier than the skin head thug or lipstick lesbian that I have also been called of late.  My current rug is well over 2 yrs old and I’m surprised it’s still wearable with the way I have treated it.  In fact the wiggy shop lady was also very surprised with its condition, and that was just based on the fact that they normal only last for approximately 12 months, before looking so shabby that the only place they are fit for, is the dogs bed.  Having the same 2 hair styles of skin head or brown bob for the last 2 years I asked if I was allowed another prescription.  Of course I am.  I am (we are) entitled to one every year, so I have come to find out now.  

 

Ok so the good news is that I am entitled to another NHS prescription to get myself a new rug (wig).  Holding onto my prescription I excitedly rang the wiggy shop to book an appointment and had all sorts of visions running through my head; blonde, short, dark, long.  The wiggy world was my oyster and I was determined to pick something a little different.  I love my current rug (if you can say that about a wig), wel; I love the style, but with all the treatment I have had, my complexion has changed and I have been looking rather pasty so I am wanted something a little lighter.

 

What a bloody joke.  Stupid government cut backs.  Yes this is where I start to go off on one and start my bloody moaning again.  The wig prescriptions are worth diddly shit, according to wiggy shop lady she said it entitled me to a £66 plus Vat even though it clearly said to supply ONE WIG.  But get this; she said I could pay extra to get any wig in the shop. Woweeeee, I should think they would allow me to top up out of my own money as the cheapest wig in there was £180, that looked like a mass of mess than a bloody hair style.  Yes she was making out that she was doing me this great big bloody (must should stop using that word) blooming massive favour.  If I could afford to pay over £100 for a wig I wouldn’t have to bother with wig prescriptions, even more laughable is that if I was under the other hospital in the area then the prescription would allow me more money before having to top up with money that I just don’t have, its not much more but it’s still more.  “So why don’t you transfer to the other hospital?” I was asked by someone after one of my moans about this subject...  well it’s because the other hospital don’t do cancer treatment, they do alopecia. As if the diagnosis of how we become bald makes any difference. If you’re bald you’re friggin bald. 

 

I was looking forward to getting some new hair especially now mine has gone again but it was looking like I would have to make do with my old tatty brown bob that has to be sewn back up every time I wear it. 

 

This is where fb can come in handy, my place of usual day to day moaning and after posting about the stupid wig palarva it came apparent that wig prescription values depend on where in the country we live.   Its times like this that I start to get angry towards “Dr X” again, if it wasn’t for her I would still be working, probably wouldn’t have incurable cancer now (and that is a big probable according to investigation from an independent oncologist) and would still have money in the bank for a rainy day.  Lee and I have used up all our rainy days and live day to day scraping through, borrowing from Peter to pay Paul sort of thing and have had to go without food several times until benefits have been paid into our account.  Not the sort of eating healthy like they tell you to be whilst having treatment for cancer is it.

 

I didn’t want to give in and even asked if I could issue 2 prescriptions at once, seeing that I missed out on last year’s prescription, but Oh bloody no.  Only one prescription allowed at a time.  And then the most amazing thing happened.

 

Facebook friends started sending me messages, wanting to send me there old wigs or asking me for details on how to get money through to me, to put towards a wig.  There was also one message wanting to send me £200 to make sure I had a good decent wig, saying “Don’t just pick any old crap”.  Now talk about a lump in your throat, there are no words to describe what I felt, as some of these people were people that I have never met, we had met online through facebook, never met face to face, never spoken voice to voice, we were brought together by this awful disease called cancer.  I was overwhelmed and couldn’t get over the generosity and kind heartedness that was coming through.  I am a proud person and no matter how many times people have tried to help Lee and I out with cash, donations of any kind, whether it has been to help towards our bills, give us a day out or in this case to help towards giving me a great jiggy wiggy hair-do, I just cannot accept.   

 

Wigs have been coming through the post left right and centre and I would firstly like to apologise to all the girls who posted rugs out to me if I have not worn them, the majority have been way too big to sit on top of my small child sized head, but will endeavour to do a bit of sewing to reduce the scalp size and maybe treat them to a little trim.  Even with all these wigs I was still feeling a little down in the dumps about it.  I wanted the same wig as before (but lighter)

 

The other day after getting dressed to go out shopping, I pulled out one of the blonde rugs.  I shook it, pulled a face and thought ‘This is so not me’ plonked it on my head and stood at the top of the stairs in front of the mirror.  “Wow Sexy!” is all I heard.  I looked down to see Lee stood at the bottom, smiling up at me.  Talk about giving you a boost of confidence, well lets not go over the top but, at least it gave me the confidence to walk out of the house with the new look rug on.  The fringe was way too long but I have to admit, I enjoyed being a blonde for the day.  Lee’s mum came round “woooo I like that” Lee’s Aunty came round “Wow is that really a wig, it looks so real”.  All these complements were just what I needed.

 

I have now got a different array of looks, depending on how I feel.  To top that off I also found a another place where I live that also accept NHS prescriptions called ‘Beauty Spot Cosmetics’ They stock what I would call more of a fashion wig than the state of the heart one’s but don’t cost the earth ranging from around £20 each.  I  came out of there with 2 long blonde rugs in exchange for my one prescription and one of them is nearly identical to what my hair used to be before I lost it back in 2007 and get this; that wig is called ‘Old Hair’ ha ha...

 

I know everyone deals with hairloss differently, but my latest ordeal just goes to prove that you don’t have to go with a style or colour that you’re used to.  Wigs also change shape slightly once you wear them, so give them a little time to settle to your head shape.  Have fun with them and make them work for you.

 

 

top wig, bottom real

Eribulin Chemo & Hair

Eribulin Chemo is still quite a new drug and hasn’t too long ago finished trials with outcomes of amazing results.  Like any cancer patient, we always tell ourselves that this is the one, this is the one to work, to kill the cancer, and hopefully put us into remission.  In reality though its very different and through my fight so far has realised that what can work for one person just doesn’t work for another and vice versa, which is a big factor as to why there is still no cure for cancer.

I am hopeful and have put my mind back into a positive, rather than the way my mind was working with the Capcitabine and the Vinorelbine.  Yes I know, I have been in a bad place, I have wanted to not wake up in a morning, I have said many times that I have had enough and can’t do this anymore.  But after having 9 weeks off treatment it is amazing how good one can feel.  I feel alive, happy and want to live.  I have improved day by day and have seen the old me, and even though I thought my oncologist mean for not giving the go ahead for treatment to start due to my pain, I can see why.  I was totally utterly upset at the time but he was right.  If I had started chemo then, I wouldn’t have been able to handle it.  My body wouldn’t have been able to handle it with all the aches and pains and my mind definitely wouldn’t have been able to handle it.   

What surprised me about the Eribulin is the amount of time it takes to administer.  Firstly though; I have to say very excitedly that I did not have to hang around for the 6 hours after the Herceptin loading dose.  Very exciting moment I can tell you, but I suppose it wouldn’t have mattered anyway as I slept the whole time my treatment was being administered.  Ok, so what about the Eribulin?  Wait for it... the total time it takes to administer is.... is a staggering... 5 minutes.  Oh my friggin aunt, I couldn’t stop laughing.   Because it’s still a newish drug, my nurses had to research some information on it, and was told with a big smile that it’s not too invasive and doesn’t damage the veins like most chemo’s.  Not that this would matter anyway, cos I have my good old life line, my portacath.   Its not too invasive, but its still invasive enough to kill off my hair follicles and turn me into what Lee is now saying a bowling ball and is even threatening to draw 3 black dots on my head for the finger holes because of my humongous overgrown steroid cheeks.  

Side effects of the Eribulin is; I don’t have a clue.  I was issued with a DVD which explains everything but I havn’t watched it.  Jo my nurse told me the main side effects as like with most chemo’s; hair loss, muscle and joint pain, nausea, tiredness and low blood count, so I know to keep a check on my temperature.  I don’t want to know what the side effects are, I don’t want to put them all in my head because let’s face it, lists of side effects go on and on and on and if there in my head then I will most probably frickin get them.  I would rather wait and see.  I’m not daft ( sorry to disappoint) but I know the main things to look out for, temperature being at a high priority and keeping them dam infections away.  

It was late on the Friday evening following my Day 1 chemo day while watching TV that I said to Lee “I think they’ve given me a placebo” I didn’t feel any different.  I was still on a high, had no nausea, no tiredness or anything. I was feeling frickin great.  And then Saturday morning it hit me... oooh friggin crap... I couldn’t open my eyes, I was so dam tired which resulted in me sleeping for most of the day on the sofa.  This tiredness carried on, which Lee pointed out that it could be down to finishing the steroids that I had been on for the pain control.  Good point and made a note of it to discuss on my next chemo day.

My next Chemo day was on Wednesday 4^th July.  I was still very tired and was thankful that the chemo was along one of 5 minutes to administer.  Yes I still can’t can’t get over the time it takes and have probably bored the living day lights out of everyone by repeating myself over and over again ”Its takes 5 bloody minutes”  I came away with a bag full of steroids, maybe the tiredness is down to coming off them or it could be the chemo, but by having some more it will tell me either way.

Unfortunately I don’t think it was the lack of steroids that are causing the tiredness.  I’m still tired and other side effects have crept in, to the point that I have had to take an additional instant relief pain killer every 4 hours.  I’m not in great discomfort or pain, well not to the extent that I am shouting and swearing at people to take the dam pain away because it’s so bad, but I am so stiff and achy and have turned back into the old geriatric lady trying to get up out of a chair and walk across the floor.  I can’t eat due to mouth sores and the mouth sores down my throat are making it very difficult for me to get my pain meds down.  My gums are burning constantly, my stomach is burning, my hands have no feeling and all I want to do is sleep.  Oh here we go again; I’m having a down moment.  Sorry, but yes I am.   They don’t call this a fight because its easy, they call it a fight because it is a hard bloody fight.  This is my life now, constantly on treatment to control my cancer and give me a longer life, but at the same time makes me feel like shit.  It’s not like it was back in 2007 when I was having treatment to make me cancer free, which was short term shittyness, I am now on long term, the rest of my life shittyness.  I have asked myself time and time again what is more important; quality or quantity?  And I keep coming up with the same answer, and that is quality, I would rather have 6 months with quality in my life than 10 yrs of feeling utterly crap all the time.   It’s when I feel so shitty that I want to stop treatment and let nature takes its course, but in my head I know  I can’t,  I know I have to keep on fighting because one day that cure may be found.  I went 9 wks without treatment and had the fear in the back of my mind that the cancer was growing out of control, so that has to tell me that I want to keep fighting.  

My hair started to shed on Monday, it wasn’t too bad and was ok unless I ran my fingers through it.  Yesterday though was a totally different ball game, flying into my eyes, up my nose and everywhere that I crawled to even giving Lee lots of helpings in his mug of coffee.  “Stop doing that I’ve just cleaned up” was Lee’s favourite sentence throughout the day from me combing my fingers through my hair more and more.  I was trying to hang onto it for a lovely friend to come and dye it bright electric blue with shimmering pink tips, you know, to have one last blast with my staggering 2 inches before it had to go.  I was also planning on giving my Bessie mate Pauline the job to buzz it all off, which I thought would freak her out immensely, but was shocked when she said, if that’s what I wanted she would be honoured to do it for me.   I had to take the bull by the horns and get rid, so last night I got the scissors and chopped it all off as close as I could to my scalp and then ran the clippers through it, giving me the GI Jane or Skinhead Thug look or any other look that people might associate it too.  

I have had a lot to contend with over the last week and last couple of days.  I have woken up this morning and frightened myself half to death from seeing a Skinhead Thug staring at me in my bathroom before realising it was actually me.  My stomach is still burning, I still feel like shit, but I am feeling much better today.  I have a week to build myself back up before chemo again and God Dam it, I am going to build back up, I have my fighting head on, the punching gloves are bigger than ever and Dam it, I am going to get out of this house tonight.. The dobba’s are at the ready... Bingo here I come lol

Wanting Chemo

Just over 9 wks ago I had the news that my treatment wasn’t working due to progression showing in my liver and spine.  It has been an up and down roller coaster since then trying to get my new treatment plan organised.   I thought by signing the declaration for the Trial immediately would have got things moving more quickly, but how friggin wrong was I.

Firstly I was delayed due to being admitted to hospital with severe pain caused by the radiotherapy that was given to my spine and then my oncologist said he wouldn’t give the go ahead for treatment until pain was managed and controlled.  Due to the CT Scan department taking it upon themselves to tell me that I couldn’t have the full body scan done that was requested due to my last one being just weeks ago I had to wait for another appointment to come through as it was a necessity to get onto the Trial.  Luckily, Jo my nurse was on the case and managed to get me on the cancelation list.

I had the extra CT Scan along with checking my little old brain again; which I am proud to say that I still have one.  I had the Bone Scan and the ECHO (heart Scan).  I had all the blood tests done, my height taken along with my ever growing weight and so you would think that it would just be a simple put my name into the computer to find out if I was picked for the Trial Drug or the Physicians Choice.  But Oh No!,  apparently my original tissue sample from my mastectomy back in 2007 could not be found (and is still missing) and so another sample was sent in which did not show the criteria that was needed and so I was refused from the trial.  My nurse was very apologetic and relayed all the information onto me.  Luckily, I still had the C3 vertebra that was removed in 2009 to be sent off, my nurse said that this sample should show the correct criteria of having a metastatic breast cancer that is HER2 positive, but due to timelines of scans etc... this meant that if the testing of my sample wasn’t approved quickly then my ECHO needed to be redone and so I was on the waiting game once again, but this time with the anxiety that I could be rejected from the trial.

On Wednesday 20^th June, I spoke to my nurse who said that the Trial company still hadn’t approved my sample and gave me an appointment for the ECHO to be on Friday the 22^nd.  Me being me; has to know things and over the phone asked her if the results of my CT scan were ok.  Don’t forget I have gone 9 weeks without any treatment what so ever since the last CT scan and so the anxiety of the friggin squatters getting out of control and taking residence in my lungs, kidneys or any other organ in my body were definitely a big factor that was going around inside my little old brain.   Big sigh of relief after hearing my nurse tell me that there was no further progression apart from slight growth in my liver, which to be honest was expected.  

Half an hour later and my nurse rang back... My oncologist wanted to see me, and I was given an appointment for the following day.  Cripes!! ... I was up in Yorkshire at my mum’s so had to get Lee to come and pick me up early in the morning.  My stomach was churning, why does my oncologist want to see me? Is there something in my CT Scan? Has it spread to other organs?   The mind is a very dangerous place especially when you know there are results to go through.  Lee said the appointment is probably to go through my treatment plan, and like he has done for the past 5 yrs, told me not to worry.   

That night was a terrible night, I daren’t take a sleeping tablet because I knew I had to be up early and so I tossed and turned most of the night, with the time being 5.30am the last time I glanced at the clock.  I was shattered and to say that I had butterflies in my stomach was a big humongous understatement.  

Lee was right! Come to think of it, he’s always right but please don’t tell him I said that.  My oncologist appointment was to discuss my treatment plan.  Scan results were good and showed slight progression in the liver.  No other organs affected by my bloody ugly squatters.    We discussed the loss of my original tissue sample (still not been found) and decided the treatment I would have if I was picked out for the Physicians Choice (IV chemo of Eribulin).  I also signed the consent form for the Eribulin just incase I was rejected for the Trial of TDM-1.  

Lee and I came out of there with the big feeling that the appointment was to prepare me for being rejected for the Trial.  Hense my oncologist saying, “there isn’t always enough tissue to test from a bone sample” along with having me sign for the Eribilin chemo too.  

Mixed emotions again and back on the waiting game.  I so want the TDM-1 trial drug, who wouldn’t, the results so far have been amazing and is currently being called the New Wonder Drug, on the other side what is most important to me right now is actually being approved for the trial as this means that I will be watched and monitored more closely and so any further spread will be caught early.  I have read up on the Eribulin Chemo which sounds to be another good drug too, this has just recently finished trials and has had amazing results, but... yes there is a but... if I have this one, it will mean that my 2yrs of hair growth from the last IV chemo, my staggering 2 inches of growth because the Capcitabine and the Navelbine delayed and stopped growth would inevitably fall out, turning me into the bald Kazza with the humongous cheeks from the steroids.  Whatever the outcome, treatment will commence next week.  Luckily I am approved for the trial, another obstacle over come and one obstacle to go.. Do I get the Trial Drug Of TDM-1 or not?

Monday 25^th June and my phone rings.  I know straight away who it is and answer the call with my heart paused.  Hearing Jo’s voice, I knew straight away and butted in quite quickly “I havn’t got it have I?”  Jo seemed to be more disappointed than me, it has taken what seems forever to get me on the trial and at the last obstacle, the computer didn’t pick me for the drug anyway.

Am I disappointed?   

No!   Like I said the main thing for me was to be on the trial so that I am more closely monitored, plus treatment will be given in the Research department rather than the normal Chemo Day Unit, meaning less hanging around, waiting and delays.   

Chemo is set for Wednesday at 10.30am.  I will have the Eribulin Chemo on Day 1, again on Day 8 out of every 21 day cycle.  I will also have the loading dose of Herceptin again which will be given every 3 weeks, but am hoping that because I have done the loading dose twice before over the last 5yrs that they don’t keep me hanging around for the 6 hours to keep an eye on me incase of a reaction.   For my second cycle of chemo, it is also being sorted for me to go back onto IV biosphosphonate, the bondrant tablet that I thave taken for the last 3 yrs will stop and I will have once again Zometa