Sunday 27th September 2020

Physio Tech at the Oaks Hospital

What a year so far!

Yes indeed! Who could have ever predicted these last 6 months! OMG! I must admit that having been through everything my family has had thrown at it, we have actually managed ok. I think that having had so many surgeries and so much illness you almost learn to adapt and cope with whatever is thrown at you and in a strange way it has helped with the COVID19 situation. We have been lucky so far that none of my family have suffered with catching the virus but it looks like it’s going to be around for a while so all we can do is keep cleaning, keep being careful and most of all keep ourselves as healthy as we can to have some fight when it does get bad again! I think winter is coming and it’s going to be a hard one.

What’s been happening in our world?

In short, I started my new job at the Oaks Hospital back in February as a Physio Technician – I have really enjoyed this opportunity and met and worked with great people! I also bump into (literally sometimes) Mr Griffiths! The first time was very strange indeed! I think he was so shocked to see me in my uniform! Bless! I’m usually standing in my pants or on an operating table! He is very much liked at the hospital which is lovely to see. He has looked after me well with all my surgeries and continues!

I’ve worked through unprecedented times with COVID19 and because of that my job has changed we’ve all had to adapt. So when I got to my 6 months I needed to make a decision….. I would be on a 3 month notice from then on. So with the job changes and my need for more flexibility I made the difficult decision….. I knew I needed to be there for my mum, my sister, Michelle, is about to go in for her preventative double mastectomy and reconstruction which is going to be tough, add in my appointments and a small op I need to have too (just to sort out some more scar issues) – and of course everything else life throws! So I made the decision to leave my safe permanent contracted hour job – I know! stupid! But my family is more important and I am staying as bank staff to give me flexibility without the guilt of having time off when I need! So far it’s working well and it may even work out better for myself and the hospital as I could help out in other departments. I quite fancy being a Hospital Porter!

But most of you know me well and of course I’m a work-a-holic! I have recently acknowledged that I work far too much but it works as a ‘distraction’ – this is my coping mechanism and it works for me – keeps my mind and body so busy that I can overcome the daily pain and I only have to dip into the painkillers which is perfect! I just need to be aware to take some time out when I need too and not overdo it until I collapse – I’m still working on recognising this but being back at the gym and swimming is helping with the ‘me’ time! When you hurt all the time it’s difficult to listen to your body, I just know that when I sit around I hurt more? So to actually sit I still have to be busy – either watching a movie, reading, making etc and I literally can’t sit in the same position for long either otherwise I can’t move – my body seizes up! I’m still really working on getting the balance right, but I’m certainly not going to be bored…..

….. I’m also back at college supporting students for a couple of days a week – sometimes in college and sometimes on zoom. It’s different.

….. I’ve been helping Phil most of the summer with the gardening and I’ve been loving it! The business is going well and we surprisingly make a very good team! He does the lawns, hedges and strong stuff. I do the designing, planting, pruning, borders, edges and all the prettiness! Still very hard work but the gardens are looking amazing since we have been working together! Opposites eh!

…. I worked at the farm throughout lockdown as our online sale went crazy! But the farm is only seasonal and now I’m off til spring which is sad.

….. Plus I’ve been helping Freya out with her cleaning business which has been so busy as everyone needs to keep on top of the cleaning now more than ever!

I’m juggling as usual and it’s never ever dull….. and it’s about to get more interesting as I am starting a bricklaying course this week – another ‘tick’ off the bucket list. I should have started this bucket list a lot sooner! Not sure how my body will hold up but we shall see. My mind can’t wait!

I’ve also been working on the body Tattoo project – see the tattoo page for more pictures….. this is across my DIEP scar….. next we are starting on my right (tummy) boob – December. The left still needs some work as the scar is causing problems. But we are getting there….. I honestly never imagined having all the pretty things I love drawn permanently on myself would help me so much. I am understanding how tattooing can help so many people with their mental health too. So go for it if you’ve always wanted one! Plus over scars you can’t feel anything – added bonus!

Mum celebrated her 75th Birthday in July – albeit in lockdown so small celebrations! Unfortunately because of her chemotherapy to reduce the cancer spread was ‘paused’ during the summer because of the virus, and it has spread more. But we also have some good news that she is back on the chemo and so far she is tolerating it well – we are cautiously optimistic. A recent scan also showed a tumour on her brain which gave us a scary few weeks but it is a different type and benign so not spread from her body. Phew! Keep going mum – we love you and need you!

I’ve also had a few cute things come along this year ….. my car! OMG I never thought I could love a car as much as I love this little Fiat500!

And Michelle got a new kitten, Daisy…. she is the cutest little thing and I love cuddles with her – although I am a little allergic so, no, the dogs will not be getting another playmate!

Kitten and car! both so cute!

Back to Cancer news now. I’ve distracted you all for a while with some cuteness! As I mentioned earlier my sister Michelle has her date for 7th October to have her risk reducing double mastectomy and reconstruction. It’s going to be a tough year ahead for her and because of the virus it could restrict us all being there to help her out. We shall see, but we will be supporting her every way we can. I know she can do this! She has to! We love you Shell x

Lewis is now 18! Wow I feel old but I also feel so lucky to see 2 of my children reach adulthood! I am so proud of them all. We celebrated, again low key because of restrictions, at Lewis’ choice of Miller & Carter as he wanted to eat steak! We had a lovely evening. To celebrate his 18th year we will spread lots of little celebrations throughout the year for him. Happy 18th Birthday Lewis xxx

PALB2 Gene

Reaching 18 also gives Lewis the choice of being tested if he carries the PALB2 Genetic Mutation. Nathan has already tested negative. Lewis has a 50/50 chance of being a carrier. Being male, research so far, brings a low risk of him developing breast or pancreatic cancer. It will affect him more if/when he has children.

We had an important Zoom meeting this week to discuss the progress of research developments. I took some notes from the meeting…..

Thursday 24th September 2020 – PALB2 Information Meeting Notes:

Held by:
Yulia Baynham (host and organiser)
Dr Marc Tischkowitz (Medical Geneticist at Cambridge)
Dr Anju Kulkarni (Consultant Cancer Geneticist at Guys)
Dr Vishakha Tripathi (counsellor)

What is PALB2 – the basics? A gene is a chemical instruction that protects us! When there is a mutation (like PALB2) they don’t work properly and allow cancer to grow. Also called a variation, gene change, or variants.

Do all cancers come from genetic mutations? Yes. 2/3’s of all cancers occur after 65 years of age. Usually your DNA repairs the mutated cells so it can take years for cancer to develop. If you are born with the PALB2 genetic mutation it already has that head start and shorter time for the cancer to develop – hence people develop cancer in their 20s/30s/40s. There is a 50/50 chance of passing on – irrespective to boy/girl – there are no rules!

How common are PALB2? 1 in 700 in the UK are carriers. Most have no idea and will never develop any symptoms so it may never be found. In East Anglia there are 70 PALB2 carriers and it’s headed up my Marc who is based in the research centre at Cambridge. But going on statistics there should be 1500! There has been testing on the NHS since 2015 but it is family specific and you have to meet certain criteria to get tested. We discovered the gene as I was on a trial and they kept my sample they used to test for BRCAs and discovered the PALB2 a few years later as more detailed testing was developed.

Risks? It was discovered in 2007 and took 7 years to research and 524 families to help with the data. We still need more data! Family history makes the risk higher! So for example if your mum and sister are carriers (like in our family – both myself and mum have had breast cancer), then the risk is much higher for my sister and our children if they are positive.

So risk by the age of 50 yrs is between 13-21% chance
by the age of 80 yrs is between 44-63%
But family history will make this higher!
There are lower risks for ovarian cancers but again more research is needed and this depends on family history.

Taking Tamoxifen (pre menopausal) or Raloxifene (post menopausal) can help to reduce risk by preventing oestrogen driven breast cancer. But this as its own implications as the body needs oestrogen to keep our bones, brains and hearts healthy.

They are doing lots of research on Homologous recombination DNA repair. Also tumour testing with blood samples when the DNA is released from the tumour. Some inherited PALB2 mutations can occassionally be identified through these tests – but still more research needs to be done and more data collected. This is exciting!

Interestingly it has been proved that lifestyle factors have an impact:
– Oestrogen exposure – HRT, contraceptive pill
– Pregnancies and breast feeding – increased hormones – I had 3 children (and further pregnancies/miscarriages), and breast fed so I wonder if this was an influence?
– Diet – weight – exercise
– Alcohol intake
– Radiation

It is also possible that carriers can have IVF treatment so the embryo can be screened for the PALB2 gene and then replaced. This is great news if our children are carriers.

They also discussed that research has shown that young adults told early about carrying the mutations have a psychosocial hardiness and a sense of control as they have advanced knowledge. Although support avenues are still evolving – GP, local genetic counsellor, family therapists, psychologists, web sharing info and support groups.

Interestingly data has shown that women born in 1970s have a high risk that those born in the 1940s. I was born in 1971 and developed breast cancer 20 years younger than my mum did.

They focus on detecting early and treating cancers rather than preventing at the moment. Usually by yearly MRI’s and mammography. But risk reducing surgery after the age of 25 years. There is currently no data to compare annual surveillance over risk reducing mastectomy.

My sister will reduce her risk of getting breast cancer by 95% having the double mastectomy.

These are just a few of my notes, to read more visit….. http://www.palb2.org/

I am so grateful to these amazing people – especially Marc Tischkowitz for leading the research for PALB2 as this will help my family and our future generations. It’s all so clever and it has really helped us as a family give some reason as to WHY we have been hit so hard with breast cancer.

Our family are in contact and helping with the research too – especially mum as the cancer has returned this has made her eligible for a trial which could help our next generations, but it all takes time – so proud of my mum!

Meanwhile……

Just keep swimming…. I am so lucky to be back to this beautiful pool – it keeps me going!

And finding happiness in everything I can…… at the moment I am a crazy plant lady….. but it’s making me so happy! Albeit a little addictive!

Will keep everyone updated on Mum and Michelle – feel free to message and share – thank you everyone for all your support x