I treat cancer clients, clients who have had major surgery, and those who have had been through the mill, but actually going through the process myself for breast cancer – I am sharing my experience – for those that are going through it and also as an insight for those around them.
When I was diagnosed – I was in shock. As a health care provider I was in shock to find I was actually a high risk anyway….The surgeon told me not to worry – I wasn’t to blame for this happening – which completely threw me – cos shit happens, and I didn’t for once think I had to allocate blame to anyone…
My previous post http://corefusionpilatesperthblog.com.au/2018/07/01/finding-out-i-had-breast-cancer/ tells how I found out about it, and got diagnosed.
Finding out I had a Grade 1 or 2 cancer, was a bit of a minefield, with different options thrown at you. You are trying to decipher and make sense in a matter of major importance that may have life or death consequences. I opted for a bilateral Mastectomy with immediate reconstruction, removal of the sentinal nodes for testing and permission to proceed and remove my lymph nodes on the table if they found it had spread.
My hubby was gonna take time off to look after our boys for 2 weeks as we have no family here in Perth, and we sat them down over the weekend prior to let them know what was going on – we told them I had cancer, that surgery was going on that week and I would be in hospital maybe a week to 10 days but the cancer would be cut out.
They were OK – the older one understood a bit more and the implications, the younger one – not so much – they’ll cut it out mum will be fine.
Surgery day Nov 22nd 2017
Pre -op they now do a ‘sentinal node’ scan and dye – so they can identify and take that node when in surgery…. the surgeon would take out that first node as its’ the first lymph node after the breast – if that’s clear – we’re good and it hasn’t spread beyond the breast – so no chemotherapy. If it has spread – chemo for sure and you end up with and extra drain ( 3 not 2) per side. I went in hoping I only saw 4 drains when I woke up!
Op day was horrid. I was Nil by Mouth from the night before and had to go early to get the scan done and then be admitted. I NEED to eat – if I don’t I get nauseous and wanna throw up. Theatre was due to be afternoon but I ended up going in after 6 pm and surgery latest nearly 6 hours. Not a happy bunny as hubby had left early afternoon to look after the kids after school.
I remember coming round and then vomiting my guts up for the first hour or so – and then when coherent first checking the number of drains I had. = Phew there was just 4 – 2 each side – so that was good- it hadn’t spread!
The next few days were a blur really.
I can recall them, but I had 4 drains that hurt like buggery every time I breathed or tried to move. I was high on pain meds, and I needed to stay put and in bed for at least a day.
I wasn’t supposed to move my arms past 90 degrees. Each side I had two scars – 1 under each boob, another under each armpit from the sentinal node removal, and an extra incision left side as they couldn’t get the node. Plus the extra 2 drains holes.
I felt a mess. I couldn’t move as both arms were affected from the mastectomy. I was confined to the bed as I have low blood pressure anyway and it was too low.
Anywhere I went the drains went – 4 in total – 2 each side.
The kids and hubby were great, visitors were great, I felt ok – just really weak and dizzy due to low blood pressure. I was in hospital about a week – desperate to go home, and eventually went home with two drains left in – they need to have only a certain amount of leakage to come out – so I went home monitoring my drains daily and reporting into the nurse.
These two clowns above made it worth while – kept me entertained, stole my dinner, and anything else they could get their hands on!
At home they made sure Dad was on the case, but it was the little things that were an issue::
- My arms needed supporting all the time
- I had to sleep upright with the grey pillows and padded
- I was high on pain meds so a bit delirious
- I needed help dressing
- I had to keep the drain sites dry so needed waterproof dressing over each wound for each shower
- I couldn’t stand the car turning corners or going over bumps – and my hubby is a rally driver not a Sunday driver!
- Hubby had to do my hair in a ponytail as I couldn’t get my hands up there to do it my self.
- The kids were terrified to come near me.
The simple basics were hard work. I got my drains out and had to attend the Doctors surgery two weeks after surgery to get the results. Wounds were healing, I was still sore but we would be getting the results and then I could get on with getting well.
I remember chatting to hubby and thinking all would be fine, no chemo needed, maybe just recovery time, and as we stepped into the lift to see him I thought what if I need more surgery?
And that was that. What would happen?
When we saw him – he gave us more bad news. The cancer had indeed spread. It measured 18mm when we saw him and then within two weeks has grown to 22mm. It was also a highly aggressive one so now a grade 3, stage II cancer, and yes – I would need to go back and have my lymph nodes removed. The next week in fact. No time to waste.
Chemo was now a complete necessity. I underwent an axillary clearance on the right side with drains again post surgery, and again I went home with 2 drains, monitoring them and going back afterwards for removal.
I missed my Son’s graduation due to surgery – I was in hospital, but managed to get to his Graduation evening the following week – albeit with drains under my clothes.
The fact that the cancer had spread and was a highly aggressive type meant I had a two week wait for test that they carried out whilst in hospital the second time – body scans, CT’s, isotope dyes – you name it – I think I had it, and it really makes you question your own mortality and realise what’s important in life.
What if it has gone further – what would you do? What happens if they find it elsewhere. Whats’s your plan. What’s your backup plan if this all goes to poo? And believe me – you will have one.
Thankfully they all came back negative after the two week wait for results, but at the time and during those two weeks your brain goes crazy, and then into a sense of calm. Just wait and see. Worrying won’t change the outcome and you need to get well and strong. You can deal with whatever gets thrown your way.
The hardest part for me to be honest was my gorgeous hubby. He was always there. I have never seen him worried like that before, and I would never want to wish that worry on anyone. Am sure we probably kept Captain Morgan sales afloat for a wee while at times too! All he said was I wasn’t leaving him with the kids. Whatever needs doing just do it.
After we had the results of this second round of testing and we knew exactly what we were dealing with – I told my family back in the UK. There seemed no point putting them through the strain and worry and uncertainty that we were facing when they were so far away, and better to just be able to give them the facts of what was happening for sure. I knew no one was at risk as it wasn’t hereditary – if it had been that would have been a completely different story.
The one thing that I have learned from this is that you really can take more than you think you can.
I was terrified of knives and cutting skin and absolutely vain that I didn’t want any scars on my body.
Now I have heaps.
Two under each boob, 2 either side, one on top of my left boob, a massive one under my right armpit and also the 4 port holes from the drain sites, but you know what – it really doesn’t matter.
I also have really bad scarring on my left arm from the chemotherapy. – I’ll go through the chemo stuff next post, but again it really is of no consequence – it’s great to be alive – dramatic but true.
Friends and colleagues rallied around and made dinner and food, and visited, and offered to help out with kids drop off and pick up if required, YOU DO GET THROUGH IT. Maybe not in the fashion you envisage, but you will get through it.
My best friends tried to give my hubby a break and get me out of the house and out for a coffee up the road. I scared the shit out of them. I kept getting dizzy, I was gonna faint, I had to have my legs up. They eventually rang hubby and said come get her. But you do get to see the good in people.
My youngest jokes to this day about mum being on the ‘hood drugs’ – spell correct went wrong when I texted them ” I’m doing OK – I’m on good drugs” – but he thinks it was hilarious as I was off my tree at the time anyway.
The biggest thing that hit me was my oldest son – He was so relieved that he saw the drains were finally out – he said can I hug you now? Cos now the drains are out I won’t catch the cancer will I?
Shit happens. Life goes on. People help. Kids adapt and accept. You are stronger than you think. You’ll have a few hiccups, but you will move forward 🙂