Ginger Snaps - The blog of Jayne Hawkins

Go Sober!

Right, all this toxic medicine has clearly affected me more than I ever thought possible and as a result I appear to have gone off the old vino! So I have decided to make something good come out of this disastrous occurrence and go on the wagon for October to raise some money for Macmillan Cancer.

Go Sober for October!

I would really appreciate it if you would kindly donate the price of a bottle of wine or the cost of a drink or two to this fantastic cause!


25 Feb 2014

Eventually the day of surgery arrived – Tuesday 4th February, exactly 5 months to the day since diagnosis.  It had been a long time coming that’s for sure.  I was to report to the general surgical ward at 8am so we decided it would be better if Kyle and Leo stayed at my parents’ house the night before.  It was very hard dropping them off and saying goodbye to everyone so there were a fair few tears from us all that night but once that part was done I calmed down a little bit.  I wasn’t allowed to eat after midnight so I had some cereal at about 10.30pm, it was going to be tough not having my usual morning cup of tea though. 

We arrived at the hospital on time and I felt remarkably calm, I think I was just so glad that the day was here.  I was shown to my room, a single room, how exciting!  Very soon the anaesthetist arrived to explain what he would be doing.  Before he started I had to ask him not to put whatever probes they use on certain fingers as some of my fingernails are a little bit precarious!  He went on to explain that he would inject me in my side and between the ribs with something that would numb the whole area.  He also explained that I could have whatever type of painkiller I felt I needed afterwards, be it simple paracetamol or something stronger like morphine.  I was still quite adamant I didn’t want to go for the morphine though!  

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My surgeon then arrived, examined me, drew a few lines on me and an arrow pointing to the correct boob with the words “Rt Mx” which stands for Right Mastectomy.  I then had the usual checks by a student nurse, was given a gown and the lovely surgical socks and by 9.15am I was ready to go……..then we waited…….and waited!  It must have been around 12.45pm when I was taken to theatre.  I was made to stay in the bed and be wheeled though the hospital which I wasn’t happy about as I was quite capable of walking but that was the hospital rules.  

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Simon was allowed to stay with me as I was wheeled into the theatres reception area.  Once we were in there I was transferred to a trolley and my bed was labelled with my name so I could be put back into it and wheeled back to my ward after the operation.  After about 10 minutes it was time to say goodbye to Simon (which I did without tears much to his relief I guess) and I was wheeled through to the anaesthetic room.  In went the cannula and I was given something to make me relax, it was awful as the room started to wobble!  I then had an oxygen mask hovering above my face and the Anaesthetist gave me the anaesthetic to put me to sleep, he was telling me it might hurt and the last thing I remember is shaking my head to hell him it didn’t. 

The next thing I knew I was in a large ward (I think it was large but I didn’t have my glasses on so it was very blurry) with a nurse sitting next to me monitoring me and writing things on a chart.  Soon after that I was wheeled back along the hospital corridors to my room.  I saw Simons shoes in the day room (now sure how as I still wasn’t wearing my glasses) and yelled out to him as I went past. 

Once I was back in my room the nurse sat me up in bed and that was it, I was wide awake after what felt like the best sleep I’ve ever had.  I guess there had to be some perks to having to go through this surgery.  Simon left soon after to go home to see Kyle and Leo.  My tea arrived not long after he left which was great as Id not eaten for going on 20 hours and I was starving.  The little jacket potato and cheese salad didn’t touch the sides but it was something at least.  After tea I decided I needed to pee so a nurse helped me out of bed and I was remarkably stable and managed to walk to the toilet and pee on my own much to my relief!  I was given some paracetamol but I wasn’t in any pain although I did have two drains coming out from under my arm which were attached to two large bottles.  Luckily one of my Star friends Sarah had sent me a bag (made with sheep patterned material – she is from Wales) that I could pop the bottles into and put over my shoulder.  This made moving around so much easier I must say.  

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At 7.00pm my parents came to visit and at 7.30pm we all wandered down to the day room as Simon had brought Kyle and Leo to see me.  I’m glad they came in and were able to see me up and about, I think it’s fair to say they were a bit worried about this part, well we all were I guess.  Simon, my parents and family and friends had the job of waiting around whilst I had a nice sleep so that afternoon they all had the worst job I think. 

As I’d been wheeled into the anaesthetic room I’d been wearing my bed hat which makes me look very “special” shall we say.  I made a remark about the fact that all the theatre staff looked much cooler in their surgical hats and the lovely theatre nurse asked if I’d like a surgical hat and if so what colour, I think I asked for pink!  When I came round I found 5 surgical hats tucked behind my pillow all in different colours.  I let Kyle and Leo have one each so they thought they were quite cool wearing these in the hospital.  

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I don’t want to dwell too much on the care I received on the ward but let’s just say it wasn’t the best.  I was supposed to be on hourly observations at first, that didn’t happen.  I found a lump on my chest and when the Health Care Assistant asked a Nurse to look at it the poor girl was given short thrift.  When they had to get the drugs trolley out for myself and a couple of other patients who had been missed out I asked the Nurse to look at the lump which he did and told me it was actually the drain tube, apparently I had about 30cm of tube in me! 

The call buttons had been going crackers all day and it was after midnight before they were turned down.  At this point in time Lily from along the corridor went wandering and had to be taken back to bed.  I eventually dozed off sometime after 1am only to be woken up at 2.30am for more obs.  I think I lay awake for a couple of hours before dozing off again only to be woken at 6.15am to have blood taken.  At this point in time I gave up on sleep!  I dragged myself up, had a wash, put my pyjamas on, put a bit of make up on and my hair too and felt slightly more human. 

Breakfast arrived at around 8am – porridge and a cuppa, dear me I was so hungry.  Luckily my Mam had left me a couple of cereal bars and the kids had brought me a little packet of haribo each so I ate them too.  At 8.30am my surgeon arrived.  He examined me and my drain bottles and said I was good to go home!  Get in!!!  I had to wait for one of the drains to come out later that day.  So I settled down in my bedside chair to watch Homes under the Hammer and then a film.  I also had a visit from the Physiotherapist who checked how I was moving my arm.  Apparently I moved it quite well! 

My Breast Care Nurse Amanda came to visit me as well.  She gave me some advice as to what I could and couldn’t do once I got home and gave me my pretend boob which I will use until I go for a proper prosthesis fitting in about 6 weeks time.  Eventually at 3pm a couple of Nurses removed one of my drains and said they would sort my discharge letter so I could go.  Simon arrived to collect me and we waited…….and waited. 

At 4.30pm I was told it would be another half an hour, possibly an hour.  At 6.15pm I asked how much longer as we needed to get home and I was told I could just go and they would post it to me!!  Honestly, what a waste of time!  Still I was on my way home! 

I managed to sleep remarkably well that night back in my own bed albeit not on my usual side due to the drain bottles having to sit on the floor on my right hand side.  I even stayed in bed the next morning whilst Simon got the kids ready for school.  They brought me breakfast in bed – a bottle of non-alcoholic wine and six packets of haribo!  Simon offered me a cuppa but I declined as his tea making skills aren’t the best, he can cope with everything else but ironing and tea making are out of the question.  Once they had left for school I got up to make a cuppa and just spent the morning pottering and sitting around. 

At around 2pm I rang my District Nurses to find out what the plan was from their point of view but they knew nothing about me.  The hospital had forgotten to inform them I’d been sent home.  Thankfully they sent someone out to measure my drain bottle and got me into their system. 

Over the next couple of days I was amazed at how little pain I was in around the surgical site.  The worst bit is that my arm pit and bingo wing area are horribly numb, a very strange and nasty feeling I must say.  Over the weekend I was trusted to measure the drain bottle myself but on Saturday afternoon I noticed the pressure in it wasn’t right.  The District Nurse came out to change it but the amount it had drained has significantly reduced with it not working.  This wasn’t a problem, it simply meant I kept the drain in a little longer as the amount had crept back up once the bottle had been changed. 

The drain eventually came out after 8 days, such a relief.  Whilst it hadn’t bothered me it was becoming a chore trying to remember it wherever I went.  When the drain came out I got to see my scar for the first time and in all honestly it really wasn’t as bad as I imagined it would be.  That’s usually the case though isn’t it.  The District Nurse was extremely impressed with how it looked and how it was healing.  

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The following day I went back to the hospital to get the results of the pathology report from my surgery.  My BCN had previously emailed to say the results were good but I was a bit worried as the surgeon could still feel a lump on the day of surgery.  However the results were more than good, they were excellent!  There was no invasive cancer present at all meaning chemo had done everything it should.  There was still some DCIS (ductal carcinoma in situ) present which are pre-cancerous cells but chemo never gets rid of this so surgery was the right way forward.  The lymph nodes were clear too which we knew from earlier scans during chemo.  So basically the news could not have been better. 

Amanda checked me out and was happy with the way things were healing, the dressings came off for good and there was very little swelling.  So it was all good news really – the journey certainly isn’t over yet, not by a long shot and if I’m honest I’m not sure it will ever be over as this is something I will be living with for the rest of my life but it was a good result nonetheless. 

Thankfully after 11 days I managed to get back behind the wheel of the car, I was going a bit crazy not being able to jump in the car and I desperately needed to go to the shops.  Amanda said I could drive within 7-10 days so I think I did well to hang on til day 11 but it was fine although I took the bigger car rather than little "Mini Me" as it’s a big lighter and the suspension is slightly smoother on it. 

Half term was upon us too so we went off in our caravan to Alnwick which is about an hour’s drive north.  Whilst we were there the lovely Minnie came up to visit all the way from Suffolk which was fabulous.  We spent the day with Minnie and her lovely family and another friend from university Vic up at Cragside.  Minnie brought me up a load of goodies too – mastectomy bras and a swimming boob as well as some contraptions that I will need for reconstructive surgery.  It was lovely to catch up in person!  We also went for a few walks in the cheviots, I started my new scrapbooking project, we stopped for lots of coffee and cake and even found an outdoor champagne bar in the middle of nowhere. 

After half term it’s been back to reality – I had an appointment with Dr Branson my Oncologist who confirmed the complete response to chemo and told me he wanted to send me for radiotherapy.  He explained Id need to go for a CT scan so they can check where all my internal organs are in relation to the site they will zap, then I’ll get tattooed so they can line me up each time.  Once treatment starts it will be a 5–10 minute job each time but it will be every day for 3 weeks.  Side effects of this are tiredness, possible lung damage (very rare), new cancer starting (very rare too) and obviously burning to the zapped area.  Deep joy eh!  

In order to have the scan and start treatment I need to be able to get my arm above my head and this is a bit of a problem at the moment.  I have today had a physio appointment and I was a little worried about this one as when I have tried to do my exercises I’ve felt a popping in my chest – clearly I imagined it was all falling apart inside so I didn’t push myself.  The Physio however worked her magic and we went from “hhhhmmmmm you will likely need to delay radiotherapy” to “you are good to go with it all” in half an hour.  The popping is my muscle moving over my ribs as I’ve not got a lot of fat there apparently so now I know it’s all OK I am fine to push myself in order to get my arm where it needs to be.  

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So that sums up this part of my treatment, like chemo it's not been as bad as I thought in the end apart from the stiff arm and the frustration that that brought with it but another part ticked off on this long journey.  Tomorrow I start back on the drugs – Herceptin and Perjeta, for 12 cycles.  I think this will take me to the end up October as I may have to delay a couple of them due to holidays.  I hope the side effects aren’t too bad.  I need to have my heart monitored throughout as the Herceptin is cardio toxic and I really hope the Perjeta doesn’t bring me out in those awful zits again but I’m led to believe the side effects are minimal and I’m telling myself if I can get thru chemo I can do this.  It will mean a good few hours spent in hospital once every 3 weeks for the next 36 weeks but it’s a small price to pay.  Hopefully radiotherapy will start in the next couple of weeks too.  I’m off now to do my exercises!!!

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