Saturday 25th January 2020

Its been a few months since I posted last and a lot has happened!

My surgery went well – I have posted a few photos and more information on the Medical Pictures page if anyone is interested. It was more complicated and tricky than Mr G thought it would be and this resulted in a harder recovery for me and a lot more pain than I had thought, this meant more time off work than I had anticipated, but I’m back now and that’s what counts. Believe me being off work when you don’t want to be isn’t much fun – I sit thinking of ways to do all the house chores that I really shouldn’t be doing! And I was a bit silly as usual and did far too much. But I’m much better now and finally back at work which is great! Work at the college is my escapism from my reality and I have some great friends and colleagues there. It’s so good to be back. More check ups in a few months.

I also have just got a new part time job to give me some financial stability alongside my college job. I will be starting as a Physiotherapy Technician at The Oaks Hospital in Colchester soon on Mondays and Fridays. They are very thorough with their staff wellbeing before starting so I have to have some vaccinations and checks, but nearly done. I will still work at the farm at Easter and over the Summer holidays which works brilliantly too. Plus I am helping Freya build her new Cleaning business which is going really well. Busy busy but all moving about jobs which is good for me.

Nathan and Kiri also bought me some more Tattoo time! Decorating my body is helping me so much -it is slightly addictive.  This one is still working progress and will have lots of sparkles, so here’s a peek of it so far….

 

Eventually it will all connect and swirl across my middle, back across my chest to my shoulder.  Mum has also bought me a butterfly tattoo for this leg. I love it and it’s nice to do something for myself!  Next booking is in February – can’t wait!

So that’s pretty much the good news. I thought I would start with that first as actually the last few months have been awful…..

Not only have I been recovering from surgery but at the end of November my mum found some lumps in her neck.  We are always aware of lumps and bumps or any changes now so of course she went straight to the doctors to get checked.  She was referred to ENT as the lumps were in her neck.  Since then she has had biopsies and every single scan possible – so much.  My mum is truly amazing and has coped so well – luckily as I was off work in December we could go together to all our appointments between us! We hung out in hospitals a lot! 

Eventually over Christmas we had it confirmed that these lumps were breast cancer spread and so the process started to get her transferred to the Breast Unit.  This was good news as luckily I know a lot of the staff which has been so useful.  Tip of the day: you need to project manage your own healthcare – chase and question.  Mum has had to have even more scans and tests so they could see the whole picture and put a jigsaw together and come up with a plan – finally this week we found out more…..

The breast cancer has spread from her original breast cancer – some little tiny cell laying dormant and suddenly been able to spread – meaning the Tamoxifen has stopped being effective and doing it’s job. Unfortunately in the UK we don’t have monitoring scans unless there is something untoward- its just not policy on the NHS, plus all the scans have their risks.

The cancer is most prominent in mum’s neck.  Her chest cavity area has some enlarged lymph and areas of cancer are around her aorta (the big artery in the centre of her body leading to her heart), it has also spread onto her Liver.

The good news is she is not HER2 positive (that’s the super spready protein) and the cancer is oestrogen ER+ receptive which means hormone medication can be used. Plus there is no sign of it in her bones.  We are grabbing onto the positives.  There are no large tumours – but lots of little ones.

As there is multiple areas she won’t be having surgery, radiotherapy or traditional chemotherapy at the moment.  They are going to change her medication to Letrozole which is a hormone inhibitor – this works by stopping fat cells turning into oestrogen that feeds the growth of this cancer. Combined with another drug called Palbociclib – which works by stopping the cells multiplying.

The cancer is now incurable but hopefully these drugs will stop it or shrink it.  Only time will tell – firstly if mum can tolerate the drugs as the Palbociclib has some horrid side effects as it’s a tablet form of chemotherapy which is the best way to describe it.  If she is ok on the medication she will be scanned every 3-4 months to monitor the cancer and what it’s doing – shrinking, growing or staying the same.  She will also have monthly blood tests to monitor her white blood count as the drugs will compromise her immune system.

Because of the PALB2 gene, mum’s medical team in Colchester will also contact the professors at Cambridge to seek additional advice in case there are any trials or further research that can help. And of course my wonderful sister is on the ball and has sent an email to give them the heads up on what’s going on so they can update our family details.

As the cancer is now incurable we have to hope it can be controlled by these drugs.  One step at a time. Luckily we know that there are options and getting the balance right so mum has quality of life for as long as possible.

We are all absolutely devastated but in true family style we are all together and supporting my mum – so glad my mum has me, my sister (Michelle) and my brother (Darren) – and of course all the rest of us – we can do this fam!  We love you mum and will be here with you every step of the way – so very proud of you and couldn’t wish for a better mum.

We will all need another girls holiday soon!

So as you can imagine this has affected us all so much this week.  Myself as the reality that at some point the drugs I am on could stop working and the cancer will be back – I know I’ve done everything I could possibly do to keep it away but the worry  is always there.  The reminder to Freya and Lewis that they will be tested for the PALB2 gene – poor kids have been so upset – so not fair. Poor Freya is suffering so much her hair has been falling out and she’s not eating properly – but we are on the case to help her. My darling sister now also feels like a ticking time bomb – she is on the list to get a risk reducing mastectomy – but of course there is a waiting time.

And of course there’s been more this week just to top it off ……. our 5 dogs have all had the most horrendous sick bug! So much sick everywhere and they don’t run to the toilet – no of course not – they find a nice rug and puke.

We’ve all felt sickly too which is not good and this cold weather has really affected me this week. So exhausted.

Found out a friend online has just died from Cancer and another friend has just been diagnosed and is at the beginning of all this shite!

And of course loads of other normal stuff on top of all this that I won’t go into.

Just a whole lot of worry.  So what to do?  Do what we usually do – one thing at a time, try and bring the crazy brain back into the now and deal with everything one step at a time. Live in the moment, keep smiling, and believe we can get through this..

Oh and wine helps!

….and rainbows always bring brightness on a dull day…… keep positive!

Thank you everyone who has been so supportive – we will continue to need you x