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!

Cycle number 6 - The last one!

22 Jan 2014

Cycle number 6…….the last one ever with a bit of luck!  I was both excited for it and dreading it.  Excited as it was the last one and therefore the last round of side effects, but dreading it as I knew what was coming even if it was for the last time. 

Worryingly I had gone to bed the night before with a bit of a “tummy upset” and woke up with it too.  This brought major panic as I was worried they would delay chemo!  I did think about not telling the nurses but I knew if something was amiss I’d be rumbled when they checked my bloods out so I mentioned it to them when I arrived.  Luckily everything checked out OK so we were good to go.  I had been making a big effort with my diet and can maybe put it down to a big increase in the amount of vegetables Id started to eat!  Anyway, let’s move swiftly on……..

Simon has mistakenly double booked himself so my Mam came with me until Simon could get there.  I think she was interested to see where I had been receiving treatment and having seen it was quite impressed with how nice the ward is.  As ever the administration of the drugs was uneventful which is what you want in the world of chemotherapy as drama usually spells trouble. 

I spent a good part of the day chatting to a couple of lovely ladies.  One of the ladies is receiving Perjeta like myself and given that I was the first to get it at my hospital it was nice to compare notes about it with the only other patient receiving it so far.  The other lady I chatted to is receiving the Herceptin treatment via an injection in her thigh which is a new procedure.  This means a five minute jab and a half hour wait afterwards rather than being hooked up to an IV drip for well over an hour.  I believe the ultimate plan is for this treatment to be self-administered at home.  I can’t have treatment this way because I am receiving the Perjeta as well and that can only be given via IV drip but I imagine the injection will be very popular.  As ever it was a long day but we were home by teatime.  That was it…….chemo DONE!!!!

  • Cycle number 6 - The last one! - Picture 1

Day 3 arrived and it was time to do my last ever injection……Leo wanted to help again.  I let him help push the needle in then held it firmly whilst he worked the plunger!  He was desperate to do it but I must say I prefer doing it myself as it does hurt less that way but well done to him for doing it, not bad for a 9 year old.  His big brother on the other hand ran screaming from the room.    

  • Cycle number 6 - The last one! - Picture 2

Pain this time was minimal which was nice.  I had decided to make a big effort with my eating from this point onwards so that when my mouth went pear shaped Id at least have a store of energy to fall back on with any luck.  Once the grim mouth arrived this was pretty tough to do.  Meal times again turned into a bit of a drama as I basically put my head down, ignored everyone and shovelled the food in until I practically felt sick.  As awful as that sounds it did the trick and I managed to keep my energy levels up which helped enormously. 

I didn’t really want to take the nasty thrush tablets this time as I wasn’t convinced they did a lot.  I also tried Oral B Pro toothpaste, cleaning my teeth with it and rubbing it round my mouth.  The nasty mouth arrived bang on time on day 7 but it didn’t feel quite as bad.  I actually had a dentist appointment that day and the dentist said the thrush was just starting and he advised me to hold off on the tablets for24 hours, which was my plan anyway.  He also recommended Oraldene mouth wash.  Id not been using the mouth washes I’d been given as I found them too harsh but the Oraldene was much milder. 

As a result of everything I tried this time I only had one really bad day when food was off limits which was pretty good and whilst my mouth was still rather rank it wasn’t quite as bad as it has been previously and I avoided the thrush tablets.  By day 11/12 it was heaps better and I was back on cups of tea and able to eat normally, result!!  As I write this on day 15 it just tastes a little salty which is much better believe me. 

Sadly my nails aren’t too great this time, by day 4/5 a few were starting to lift up and one was particularly nasty, gooey and a bit smelly.  I rang the hospital and was told I needed antibiotics as it was infected.  Luckily I had some at home from when I had the teenage zits on my head so I saved myself a trip to the hospital.  As I write this my nails seem to have reattached themselves although they look rubbish (will be wearing varnish for a while yet if they don’t fall off) and the bad one is no longer gooey and smelly but isn’t looking too great even though it has firmly reattached itself, so we shall see what happens there.  My fingers are still quite numb and Ive got twitchy eyes - this is the chemo causing nerve damage but hopefully it will fix itself in the near future.  Deep joy eh!  

  • Cycle number 6 - The last one! - Picture 3

Day 9 saw me having an MRI at Wansbeck to determine exactly what chemo has done to the tumours so I spent 40 minutes lying face down in a tunnel whilst machine gun type noises blasted out around me.  When I arrived home I had a large blue lump where the cannula had been so I rang up the hospital and was told they had accidently burst my poor vein.  Ice and ten minutes of pressure fixed it but I’ve got an awesome bruise thanks to that little event.  These things happen but the lady who burst the vein rang me twice that day to check I was OK which was nice of her. 

The next day Amanda rang to say that the results were great, not a huge change from my half way scan but that was because the results from that scan were so good and in theory there was less for the drugs to need to work on where the lumps were concerned.  A couple of days later I had an appointment with my Oncologist the lovely Dr Branson.  He described my results as “spectacular”…….whoohoo.  He showed me my scan pictures and they looked extremely clear to me! 

A team of medics had met that day to discuss my case and results and plan the next stage.  They struggled to see the three lumps on my MRI, they could see a number of tiny flecks but no one could confirm that this was cancer.  It may well be that it is or it could be that it isn’t but basically the chemo worked wonderfully.  They don’t know if the lumps disintegrated or shrunk which is why at present they can’t confirm what the tiny flecks are, either is perfectly normal and I guess we will find out one way or the other when the pathology report comes back after surgery but the bottom line is they were delighted with the results, and so am I.  Clever stuff that chemo (and other drugs), horrid stuff but very very clever!

The next event was a meeting today with the surgeon.  The letter I got about this appointment was with the original doctor who broke the news of my cancer so badly.   I wasn’t too happy with this so, during a catch up chat with Amanda, I plucked up the courage and asked if I could see another surgeon.  This wasn’t a problem so today I met with Dr Amonkar who is an Oncoplastic Breast Consultant.

I am so glad I asked to change as he was lovely.  Dr Amonkar explained that the team had initially discussed keeping the skin of the breast and doing an “immediate delayed” reconstruction.  This would involve inserting an implant at the time of surgery (the immediate part) that would be filled slowly once radiotherapy was finished (the delayed part).  This would have been quite good as it gives the best results cosmetically and means they don’t need to take skin from somewhere else.  However as they were unsure of what the tiny flecks on the scan were and also the fact the tumours were so close to my skin they felt that in the end this wasn’t the best option as I would be left at more risk of the cancer returning in the same area.  They obviously want to give me the best chance of this never returning and clearly I totally agree with them on that score. 

So I have been advised that the best route is a simple mastectomy with “delayed” reconstruction.  This means they will remove the whole breast now and reconstruct it using skin from elsewhere at a later date.  Therefore if the tiny flecks are residual cancer it will be completely removed.  The reconstruction sadly can’t be done for at least a year after radiotherapy finishes as this damages skin and blood vessels and the reconstruction would be at risk of failure.  Whilst it would be lovely to look “normal” sooner rather than later it’s not worth doing if there is a strong chance it would fail at some point in the future.  I’m quite happy with this plan as it’s the safest option really. 

On top of this they will remove a number of my lymph nodes as the cancer was present in them at diagnosis.  As Dr Amonkar is an Oncoplastic surgeon he deals with the reconstruction side of things albeit immediate reconstruction in the main.  He is going to speak to the plastic surgeon that carries out the delayed reconstructions to ensure he makes the incision in the best place for reconstruction which I am pleased about.  He then went on to tell me that I may lose some sensation in my “bingo wing” area as there may inevitably be nerve damage here when they remove the nodes and in the future I may develop lymphedema which is swelling in the arm.  I will however be given exercises to do by the Physiotherapist to help avoid this. 

So providing my bloods are fine next week when I go for a pre assessment, surgery is booked for Tuesday 4th February.  I need to report to hospital early in the morning (can’t even have a cuppa that morning which is going to be a killer), the operation will take just over an hour then I’ll be in recovery for a little while before going back to the ward.  I will likely have 2 drains that I will need to carry around with me until they can be removed.  I will need to stay for at least one night but can stay until I feel ready to go although I can go home with the drains still attached to me and the District Nurses will empty them on a daily basis and remove them when necessary.  I can also drive within a week to ten days and just need to be sensible with what I do.  I will be sensible, will take advice off the professionals and will take it easy but I don’t intend to sit on my backside for very long and will hopefully be back pottering about rather quickly. 

So I’m OK about it, or as Ok as I can be.  I’d still rather not have it but the bottom line is that I must so I may as well do it properly and ensure I give myself the very best chance of beating this.  I’m quite glad I actually do not have a choice in all of this, choices can sometimes be very difficult and I think that would be the case in this situation.  I’m glad Dr Amonkar explained it all to me and said why certain options weren’t the best ones and made it clear why they are opting for the route that they have chosen. 

Whilst chatting to Amanda later on I raised the question of them removing the other breast at some point and whilst this is clearly a discussion for the future she said it was certainly an option which is good.  I have plenty of time to think about the reconstruction  side of things and don’t even have to go ahead with it if I don’t want to but I know already that I want to go down the route of reconstruction and hopefully that will be as soon as possible once everything has healed and returned to normal. 

Radiotherapy will begin around 6 weeks after surgery and will be every day for 3 weeks over at the Freeman Hospital but as ever lol find out more about that nearer the time.  Once I am over the surgery I will be back on Herceptin and Perjeta every 3 weeks for another 12 cycles.  These drugs will hopefully ensure the switch that turned my cancer on will be cut off forever, that’s the plan anyway.  This means I’ll still be spending the best part of a day in hospital every 3 weeks but it’s a small price to pay and hopefully these drugs won’t give me any nasty side effects! 

I’m now two weeks on from my last chemo and thankfully I’m feeling fine.  So with a bit of luck, aside from the iffy nail that may choose to drop off, that’s it, it can do one!  In fact when Simon and I left the hospital today we went out for breakfast (it was an 8.30am appointment) and I had runny eggs.  This might not sound much to you but during chemo you aren’t allowed things like runny eggs, pate, soft cheeses etc.  As I’m feeling quite back to normal and my immunity levels should be back up I consider chemo done now so I celebrated (as you do) with a runny egg benedict and this weekend I am treating myself to some pate, soft cheese and a large glass of vino - wine was not on the list of banned foods thankfully, apart from right around the time of chemo but it will wash the pate and cheese down nicely.  

  • Cycle number 6 - The last one! - Picture 4

In the medical world Docetaxel chemo is referred to as the “devils drug” and I know a number of people who have sadly had a hell of a time on it.  The fact that I received it with two other amazing drugs allowed me to have a slightly reduced dose of chemotherapy and as a result a much better time on it.  If this is the way things move in the future due to this combination of drugs and more access to Perjeta then more women will hopefully suffer less on the Docetaxel whilst still getting excellent results which can only be a good thing.  I hope that’s the case anyway

So chemo has had the last 17 weeks of my life and I think that is quite enough so I’m going to move on thank you very much!  It wasn’t the nicest thing in the world and I certainly don’t want a repeat of it but luckily it wasn’t as bad as I imagined it would be.  At the end of the day it has obliterated the cancer so it deserves respect.  I’m eternally grateful it didn’t floor me, make me feel nauseous, cause me to vomit or send me to my bed.  I’d have been truly pathetic if this had happened.  I’d also like to think my positive approach and refusal to let it get me down for the most part has helped as well, as hard as that has been.  Chemo is no walk in the park and I wouldn’t wish it on anybody but sadly I won’t at this point in time be the last to go through it so the best advice I can give to anyone facing it is to try hard to keep going.  It’s hard but if possible push through the side effects and tiredness and I personally believe it’s an easier journey both physically and mentally. 

So that’s it, stage one is over with in my mind, technically I am a week early with this blog post as the cycle still has a week to run but I feel back to normal and as I said previously the chemo has had enough of my time.  Stage 2 is just around the corner and I’m as ready as I’ll ever be for that part (once I have ironed my pyjamas – suppose I’d better make the effort given the fact I will be in public).  So until then life carries on as normal but with no nasty mouth once every three weeks and happily the addition of runny eggs, soft cheese and pate!  I did it!!!!!!!!

  • Cycle number 6 - The last one! - Picture 5

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