December 2021

So, it’s been a year since writing last. Sorry all but it’s been a busy one!

Medically: I had my final surgery in August to remove the scar tissue from my left (thigh) boob. The scaring had over healed and was causing pain by pressing over the nerves down my left side. So my only option was more surgery. Covid had delayed this but Mr Griffiths got me in. As a surgeon I am sure he wanted to finish off this project! Medical pictures uploaded and of course included lots of bruising and pain. Sleeping in ice packs helped for a few days. But I’ve got used to recovery now and manage well which helps. The family helped me out much more this time which was much appreciated! So after a few weeks off work to recover, a slice through nerves in my left hand adding to it whrn I stupidly tried to catch a falling glass (very ouch) – I was focused and ready to get back on track and back to work. Over the years I’ve found distraction and keeping busy a wonderful coping tool to get through all this. I am now pleased to say that after many many surgeries and lots of my body cut off, moved about and resculptured, I have just been signed off from Plastics! Yay! 6 and a half years of surgery and now I can finally get on with living! I am so grateful to Mr G and his team for looking after me. Having so much cut away and on meds forever will hopefully keep the dreaded C away! I can’t do any more now.

Which brings me to my Tattoo Progress – I will continue to update the tattoo page as this is working progress. And feel free to follow my Instagram too (BrittenTracey). We have currently jumped to my left shoulder as my left chest needs to heal before Josh tattoos for me. Who’d have thought at 50 years I would end up with so many pretty tattoos! I love them and they help me cope with my poor scarred body.

Yes you heard me right! No way did I think I was going to get to 50! How lucky am I? I feel lucky and grateful every single day. Myself and Mr B went away to Norwich for a few days and had a wonderful break – just what we both needed! Kids love the house to themselves too!

Mrs & Mr B!

Nearly 7 years of life with cancer and its been a hell of a journey. But there has also been some wonderful times too – I try and focus on the fun and positive every day but this last year has been particularly hard for my beautiful darling Freya – she has suffered from depression, self harm, suicidal, anxiety, panic attacks and generally a super tough time. But this girl, now nearly 17 has battled through. But she’s accepted help and is getting there. Cancer affects everyone in the family and with Freya everything piled up over the years and manifested – she was just 10 years old when I was at my sickest. But I am sooooo proud of her, don’t you ever give up as you are stronger than you know and getting through this you can cope with anything life throws at you – you have the tools now too x love you x here’s some pics from her prom…. Stunning eh!

Family is everything that matters

Talking of proudness….. My sis has just had her final implants put in. She has new amazing boobies that won’t droop ever! They look great but believe me they don’t feel great. Implants after mastectomy are hard and uncomfortable, they hurt and you can’t lay on your front! But needs must and it’s done, removing her breast tissue has saved her from developing breast cancer as she carries the Palb2 gene. Proud of you for saving yourself sis and coping so well x love you x

Mum is doing amazing too. She has been tolerating her cancer meds well and although the cancer has spread it is under control at the moment and not growing uncontrollably or spreading at the moment . Every few months mum has to be scanned to monitor and this causes us all scanxiety – in fact mum is calmest of us all! She is so brave and still looks after us all even though she is suffering side effects and struggles some days – she is such an inspiration x love you so much mum x

So cancer has affected my family sooooo much. Its nearly 7 years in February since I was first diagnosed and this is the first time I actually feel we can start to get on with our lives and not be surround by cancer stuff. Get back to some sort of new normal. Yes there’s still going to be bad stuff happen but I feel going through all of this has given us all the strength to get through whatever is throw at us. Hey get through cancer and take on the world super hero style!

There is always going to be something as that’s life (currently my poor Phil has been diagnosed with a heart condition affecting his breathing and oxygen so he is undergoing further tests). But we can do this. Luckily our gardening business is going well and being self employed we have flexibility for both of us. So whatever any of you are going through you can do it too. Be brave and stay strong and take one day at a time!

So to sum things up. Yes cancer and illness is shite and there are so much other stuff that comes with it – the affect on us all mentally, forever side effects and pain, strain on whole families and relationships. It’s hard. But there are so many positives too – it makes you realise what is important in life. Appreciate and be grateful for everything and everyone. Don’t waste time – make the most of every moment. Try new stuff! Omg this is addictive as there is just so much to learn and do! And keep smiling through it all if you can!

So I won’t be updating this blog any more but feel free to message me. I have realised that having been through so much myself I can really help others! So ask me anything. I will continue to post my Tattoo Progress on here and on instagram.

Thank you for following, sharing and most of all supporting us all through this hell of a cancer journey xxx so much love to you all xxx

Sunday 27th December 2020

Its nearly the end to a very strange 2020 year. I have been reminiscing a lot lately about the past 12 months….. this time last year I was recovering from surgery…. I was able to spend a lot of time with my dear friend Kath, who I haven’t been unable to see this year – she is still hanging on and will soon reach her 99th birthday! I have been thinking of her so much lately.

This time last year we were all together with our families in person and looking forward to a new year ahead (little did we know what awaited us). We were scared as a family whether my mum would be with us another christmas as she had just had news of the cancer recurrence, she’s doing amazing and keeping on fighting that cancer, she is so loved, cherished and appreciated by us all – so proud of you mum – we love you so much.

We were worried about the risk reducing mastectomy my sister needed to have to save her from enduring breast cancer too. So many things we worry about. But one thing we should know and have certainly had a reminder this year is that we need to all take one day at a time. Plan a little but not a lot, worry a little but not too much (I know it’s hard), as what will be will be and have faith it will all be ok. Be grateful for all we have as if it is our last day. That I have learnt a long time ago now, but it’s also good for everyone to have a reminder every so often.

This Christmas we couldn’t all be together, like so many. But we ‘zoomed’ instead which made us feel together…. we have a great family – so lucky!

We had a quiet but lovely and relaxed Christmas – we are doing ok – hope you all are too!

But going back to this past year, I have continued to cram in as much as possible of course…. partly because it worries me a little that there is so much I would like to do and the probability I may not get to do so much, but that goes for everyone anyway. Also partly because doing stuff is my way of coping – it’s a distraction to my daily aches and pains that aren’t going to go away but I am managing. The gym and exercise helps me a lot – both my mind and my body. But this year I have had to adapt, as we all have in the lockdowns which has been difficult. Its taught me that I must not rely on one thing – I have to adapt and continue to find other ways to help myself – like we have all had to do. I have done a lot of thinking – probably far too much this year – it has made me realise that I have always multi tasked, tried new things, and been adaptable as I get fidgety. Basically if I’ve wanted to do something I’ve done it if I can – life is short and this year has shown us all that.

I realise that as a child the 1970s TV series Mr Benn influenced me more than I could ever have thought! Fancy dress shop, magic, adventure, travel, exploring, souvenirs (I love a pebble from a beach!), sorting out problems, helping people, trying something new! I remember it being my favourite cartoon!

This is me! I am Mrs Benn! I am always doing multiple things…… this year I’ve been a Learning Support Practitioner, Physiotherapy technician, Farm girl, Gardener, Cleaner, Bricklayer …. and of course….a Mum, wife, daughter, housekeeper etc etc and more! This is what keeps me going! Learning, helping, doing, lots of new stuff!

But what I’ve also been focusing on this year is what makes me happy – my happiness! – I have to work financially to pay the bills but I’ve realised that I need my whole way of life to help me including my jobs – they need to keep me fit, keep me happy, learning and interested, it needs to evolve and be adaptable (especially now), I need to feel I am helping others too. When I look back every single job I’ve ever had has had a reason and has helped me in life. I feel more than ever that there is a bigger plan for us all – we don’t always understand why but now (coming up to my 50th year on this planet) I am beginning to see and trust what is meant to be.

As most of my friends will know I love my job at the college – that ticks many boxes for me and is always changing. I enjoy cleaning and tidying – which helps Freya too with her job we do together!

But this year I have truly found my love for gardening even more than ever – I have always loved garden and nature – some of my earliest memories are from our garden and my grandparents garden. I love the ability to bring so much enjoyment to people through their gardens – and particularly needed this year! I have worked hard with Phil expanding our Gardening business – he hasn’t chainsawed me just yet! ha ha! Just need to keep fit so my body can hold up! But it’s working – we are opposites and we make good business partners as we know how each other work after all these years! So watch this space….. but book your slot soon if you need help in the garden!

Which leads me to my latest project of learning to be a Bricklayer! Yes there is a story behind this. I have always been interested in building and bricklaying, but being a girl who had an office job it just wasn’t going to happen back in my 20s! But I’ve been note taking and supporting students in bricklaying at college for a few years now – often asking more questions than the students! I can’t walk past a brick wall without looking at it now! So I thought lets give it a go at an adult evening class – just 3 hours a week for a year. OMG! I cannot tell you how much I am enjoying this course. I love it! It’s like a proper gym workout with many squats, so it keeps me strong and I’m quite good at it too – although we have an amazing tutor – Martin is one of a kind! So come summer we will be able to expand our gardening business to include some brickwork too! I am so excited so watch this space!

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So if there’s something you’ve always wanted to try – go for it! If I can learn to lay bricks then you can do whatever you want too! Be brave and give it a go! Whats the worst that can happen?

Like most families we have been affected by mental health this year – it’s been so tough for us as a family. Everyone is different and need to find their own way of coping. I’ve come to understand that when you are in that darkness you don’t realise you are surrounded by amazing family and friends that want to help you. It’s like a dark shield of dementors that are trapping you and distorting things. This has affected so many people around me.

I’m a bit strange myself – in a way I am lucky to have had some awful things happen in my past – I am pretty tough now and I have found my way of coping over the years – I wish I could bottle it to help everyone! I’m a glass half full girl! It’s in my blood – my dad was optimistic even when the worst things happened and I’ve realised I’m the same – with a crazy happy brain world too!

Of course I get down – I have a blip, shrink it back to the moment – and start again – distraction is a wonderful thing too. Take time to look at nature and enjoy the moment when the going gets tough – a bird singing, the blue sky, a winter flower blooming – a naughty Parsley dog that has stolen the christmas treats! – anything – grab hold of absolutely anything that makes you smile and focus on the positive, one step at a time – allow people to help you but you also need find the strength to help yourself too.

You got this! You know who you all are x

So….. distraction and decorating….. Yes I’ve decided to share on facebook and instagram to help others. It’s always been important to me to help others not to have to go through what I’ve been through. If it helps just one person then that’s a good enough for me.

Bit of a brave thing to do but I don’t see my chest as ‘boobs’ any more – I have skin and flesh from my stomach and my thighs to give me a little shape which I am grateful for. But the scars hurt and constantly remind me of what I’ve been through these last nearly 6 years. So I’ve had some help from Josh Wilson at Colchester Body Arts Tattoo to colour me in and not to hide my scars but to decorate them. Due to lock down we’ve had delays but we’ve finally made a start and got some outlining done on my right ‘tummy’ boob. He just draws on me to fit to my body shape and then tattoos – it’s a surprise now and I trust him! It’s like he knows exactly what I want and reads my mind. I love them.

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I would never have thought when I started this project from the very first butterfly how much tattoos would help me. It’s addictive! But I’m also gradually getting all the things I love and have meaning to me drawn on my body that has got me through so much. I’m still alive and here and I am so grateful. Most of it doesn’t hurt – my chest it pretty numb anyway and it was just the edges I could feel – although it hurt a lot going over where my ribs were cut. But all do-able.

I also have a new pet turtle on my foot! I love turtles so why not! Plus I really wanted to help Kiri launch her tattoo career…. don’t forget to follow her on instagram and message her if you want a bit of art!

Tip of the day: don’t have your foot tattooed though! It hurts like hell! Just hope it heals ok. But I have my turtle to represent my love of Turtles and swimming. They also represent enjoying every moment as if it was the last, endurance, determination, emotional strength and understanding, guidance, wisdom, adapting and journeys – I think that sums up a lot for me!

I thought I’d look up what my other tattoos symbolise:

Dragonfly: change, understanding of the deeper meaning of life, power and poise, ability to move in all 6 directions, self discover, live life without regrets!

Butterflies: spiritual, rebirth, transformation, change, hope, life is short, and it’s a symbol of the soul

Turquoise colour: friendly happy colour of life, controls and heals the emotions, creating balance and stability, peace, calm, tranquility, growth, uplifting, helps to face the world!

I also plan to have a Hummingbird: happy and carefree, enjoy life, simple pleasures, love, joy, good luck, healing, happiness, hope, keep on keeping on even when it seems impossible and it’s never too late to pursue your dreams!

I have chosen things I like and make me feel happy and pretty – it’s as simple as that for me. But I can understand why people have tattoos to symbolise a journey and I love the meanings of mine. I can also see how tattoos can help many people in many different ways – not just after cancer. They can cover and disguise, make you feel more confident, represent an experience you’ve been through or someone you’ve lost. They can remind you that you have the strength to keep going and help with whatever you are recovering from. And yes, they are helping me and I’m hooked – but no more on my foot! ha ha!

I’ll stop rambling on now! Just wanted to end the year with an update for you all. We are all keeping on keeping going. Michelle is recovering well – so proud of my sis. We also had some brilliant news that the cancer in mums liver has responded well to chemo and has shrunk and the rest is stable. Long may this work! Fingers crossed!

So this time of year I always light candles to remember my family and friends in heaven, this one is for my friend Jindy tonight x

Keep safe everyone and continue to love life and everyone close to you just that little bit more x

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  Remembering my friend Jindy x

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

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 

 

Friday 27th September 2019

I’ve just realised I haven’t posted for a while, so here’s a quick update. I’ve been as busy as a bee…..

Every day is a beautiful day when you’re hanging out with the bees!

This picture sums up my summer perfectly!

I have spent the whole of August working at the farm.  It’s been great for my fitness – which has been really important as I need to be as fit as possible for my surgery to enable me to recover as quickly as possible.  I’ve also been got to the gym, fitness classes and swimming so much more.  I’m trying hard and Lewis is helping to keep me motivated with the gym. I’m really enjoying the company of my middle son! 

I am finding that I feel so much stronger and my fitness levels are at the best they’ve been for a long time (maybe ever ha ha!) Exercise is great for the mind too! Give it a try!

In August I also managed to gain another ‘tick’ off the bucket list.  I did an indoor skydive with my brother (Darren) and my nephew Josh even had a go.  It was in a wind tunnel in Milton Keynes.  I know it wasn’t a real one – maybe one day – but I needed to see how my body could cope with the pressure and much safer to try this first.  It was fantastic – I am sure I was a bird in a previous life – omg I loved it! And of course now I want to do a real one!  Will have to see what my surgeon says first. And yes I did pay for it afterwards but it was so worth the pain!

Fly like a bird!

I also managed to get the next section of my Tattoo done.  It’s going to take a while as I can only sit for a few hours at a time and that’s with breaks!  My joints and bones hurt too much for any longer so my body art is going to take a while.  Next stage is booked for end of November and we’ll be starting on my left hip and leg.  My chest will have to wait for a long while yet as scar tissue has to settle and heal properly after surgery. But ultimately it will wrap across my body from my left leg, hip across my tummy scar, up my right side (done) across my chest to my left shoulder. Exciting to be a blank canvas and much prettier to look at now.

I didn’t anticipate dealing with my scarred body would be so difficult but these tattoos are helping so much….

So a busy August, then back to work at college in September which has been great.  I’m with Digital Media and Brick Students mostly and I’m really enjoying.  I know how to mix mortar and lay bricks in theory now! Maybe one day I’ll get a few lessons in practical too!

I’ve still been able to get to the farm – the weather has been interesting. But here I was, in the sunshine after the rain, having a stretch under the lavenders as my back was aching….

Sunshine on a rainy day

One of my colleagues at work asked me the other day how I can stay so happy while going through so much. It’s my crazy mind I suppose but I explained that it was the better option.

Recently I have realised that I have coped quite well with everything. I have been thinking and analysing a lot lately. Why I am how I am, my personality, lots of stuff. I’ve never really analysed myself before. I realise that I get so much joy from everyone and everything around me and I always have done. I love meeting new people – every person is like a new book I’ve yet to read! I love to learn new things and do stuff. All this has helped me. I’m curious in a good way and I love bringing people together – it makes me happy.

So I thought I’d put together a few of my tips:

• Hug – a lot – preferably a furry dog (or 5!), but humans are good too!
• Try and smile to everyone you meet – honestly it’s contagious – try it! Although I am sure a lot of people think I’m just a bit crazy!
• Look at the nature around you – it’s so beautiful – I have spent all summer outside with the flowers, bees, birds and bugs!
• Try Sattva Yoga – a healing, spiritual yoga using the breath and energies much more. I’ve just done a few classes but it’s amazing and I’ve slept so well afterwards.
• Exercise – I walk, swim, gym, do classes – although Body Combat (we were Ninja Warriors for an hour) was maybe too much! It’s good for the body – honestly it helps cope with chronic pain (gym pain is better – ha ha!), but it’s great for the mind too.
• Say yes to trying new things! I went life drawing with Kiri last week – ok I wasn’t great as I’ve never drawn a naked elderly man before but I really enjoyed it! I find learning keeps the mind busy and in turn helps distract from any pain or worries. I have a whole long list of things to try.
• Find a job you enjoy with people you love – yes we all need to work and pay the bills but it really helps to adapt your work – I’ve had to change my jobs so I can move about rather than sit at a desk.
• If you feel sad or something bad happens, try not to dwell on it – I make myself think of something happy to equal it out or I try to sort it out – there is always something worse that could happen – or someone worse off. If someone does something that makes me sad or upset I think that they must be having a really hard time to take it out on me – poor them!
• But also….. I have changed…. I don’t worry about what people think so much – I have had to put myself first for once and I can’t solve everything – although I still try to help – be a bit selfish for once.
• I’m still working on the ‘me’ time but I am finding it really helps with the happiness thing – it can be a simple as sitting down and having a cup of tea, going for a swim, or jetting off on a nice holiday to Italy! ha ha!
• Surround yourself with friends, family and people that make you happy and you enjoy being with – obviously sometimes people are sad but try not to spend too much time with the people that are sad all of the time
• Always have a list of things to aim for, places to travel, stuff to learn, whatever! Targets are so good – even if you don’t get to do everything. I’ve managed loads off my bucket list this year and I feel so good. Of course there is tons more – it gives me something to focus on looking forward but nothing set in stone – I have a very long list and it includes simple stuff like learning to make bread to nearly impossible stuff like going to New Zealand – but hey, who knows!
• If you are in a lot of pain, have your upper ear pierced – it hurts more than you think when you lay on that ear for weeks and weeks so takes your mind off other pain! Plus it looks pretty!
• Have a sense of humour – even when everything is a bit grim! Laughter really does help believe me and it’s so much better than crying!
• Eat healthily but also drink the wine and eat the chocolate if you want – just try and limit it!
• Play Pictionary with friends and family – this game is so basic but so much fun – we laughed a lot at how rubbish we were at drawing!
• I could go on and on but try some of this, use your mind to turn things into better situations – welcome to my world – hang out with the bees for a bit and find some happiness that works for you!
• Always look on the bright side of life as Monty Python would say!

Michelle and Dr Tischkowitz

Medical Stuff: Unfortunately we have just found out that someone else carries the PALB2 gene too – that’s 4 of us that have been tested positive and alive now. If I hadn’t had cancer then we would never ever have found this out – so basically getting cancer may save my sister from going through it – and maybe more of my family (lets hope not). Jumping in front of bullets comes to mind – would I? Of course! So I am very grateful to this man – Dr Marc Tischkowitz (Honary Consultant and University Reader in Medical Genetics) – and his very big brain! Lewis and Freya will be tested when they are 18 – Nathan has already been tested and is negative. But my sister, Michelle, needs to decide soon which risk reducing mastectomy she will have to save her from developing Breast Cancer too – big decisions.

Tomorrow Phil and I are off to the London Tattoo Convention to meet up with Nathan and Kiri – so excited!

On Sunday I’m helping Freya with her new cleaning job and then we are going to meet up with friends and make some bead earrings. Hopefully a lovely walk with the dogs and a family dinner too.

I am so glad we have a busy weekend planned as I have my next and hopefully last surgery on Tuesday! Eeeeeek. Am I scared? Of course I am. But it needs to be done. I need to put on my brave head. I can do this.

So what now? …… I am having the ‘thigh’ and ‘tummy’ boobs sorted – bit like a double mastectomy again – both will be made smaller, scar tissue removed (hopefully to ease some of the pain), fat redistributed, scooped out and pulled about. Hopefully I will be left more equal and smoother. I won’t have much boob but I should have a little bit still so it’s not just my ribs sticking out. I’m hoping to just be in a day or two and really praying I come round from surgery with no complications this time. I should be used to this now! So wish me luck and check out the Medical pages if you want to see more (obviously be warned before viewing this page as it’s got other gruesome photos on!) I will post on facebook when I come round to let you all know how I am. Feel free to message, come and visit, meet up and keep me occupied while I’m off recovering – my legs aren’t being sliced this time so walking will be good!

Sunday 28th July 2019

Ticking off my Bucket List….

I’ve been busy! Working at the college and the farm (Earls Colne Farm). Busy with my family. Busy enjoying a summer (finally without surgery!) and managing to ‘tick’ off some of my bucket list!

So what have I been up to?

I’ve been a lucky lady….

I finished work at college at the end of June and this enables me to have flexibility over the summer as working at the farm is whenever and what hours I can do.

Firstly we had Lewis’ Prom…..just brilliant!

 

Those mobility scooters were the best fun!  We all had a laugh practising for our later years!  Good luck Earls Colne! ha ha.

Lewis and his friends had a brilliant evening and now I’m proud to say he’s enjoying his summer before starting sixth form but also working hard to earn some ££££!

Next…

Nathan, Kiri and her sister, Angelique asked if I would like to go to Italy for a short break with them to stay with her family and explore with Italians as our own personal guides! I didn’t even have to think about it and of course I was going! We had a wonderful time. Italy was so much more beautiful and better than I had even imagined and I ate proper Italian pizza, lots of Gelato ice cream and swam in a beautiful lake – that’s 3 ticks off the list! But I can’t wait to go back to Italy again – I can’t believe it’s taken me this long to visit and now I’m hooked and want to explore all of it!  I may need to learn some Italian first though.

Adore these two…

Got back from Italy and had a week to work at the Farm for some funds and  then jetted off to Majorca for a girls break with my mum, Freya, Kiri , Michelle (sis) and Amora (my niece).  We stayed in the most stunning hotel with delicious food.  We swam and yoga’d every morning, sunbathed, read, ate lots and had fun together.  This holiday was so needed and we really want to do again – it did us all good…..

The beach and sea was so beautiful I don’t feel the need to visit the Caribbean so I think we can tick that off the bucket list too!

So back to work for some more funds and another tick off the list was the start of the big tattoo…..

 

I chose Josh from Colchester Body Arts to continue with my tattoo.  Not because he likes to do butterflies and pretty things, but because he has tattooed Nathan and Kiri a lot and his art is amazing.  When I spoke with him about my project he could read my mind – he knew exactly what I wanted to achieve and it offered him an unusual project.  I can only sit for a couple of hours at a time, and only afford a few hours at a time too.  So this is going to take a while – like years.  Luckily for him I kept falling asleep as it was quite relaxing so I didn’t talk too much throughout and some of it was sore so I didn’t feel like talking then either.  But you know me – I like to watch!

My existing butterfly needed some black as I had intentionally not had dark black outlines as I knew I wanted to add to it later.  Some of the colours had faded so he intensified these and added some shadow to give depth.  He freehanded the lace, beads and swirls. I love it!

I don’t feel the need to cover my scars as they represent the last 4 1/2 years and what I’ve had to endure.  But I need something pretty to look at instead as I don’t feel so pretty as I am.  It’s a way for me to move on I suppose and try to live with what I have left after everything has been cut about.  So of course I have a plan! There’s always something that can be done!

So next date is later in August when he will work on my right hip and start to decorate my stomach scar.  Then work across to my left hip and the top of my leg.

This time next year if all goes to plan we may be able to start on my chest.  Yay!

But scars need to settle and heal and I still need more surgery to adjust the ‘thigh’ boob which is a mess and the scars are so sore. I’m meeting with Mr Griffiths in the week to discuss this and hope to have this op September/October time.  I feel I’m getting there. I’ll find out more soon, at the moment it’s nice not to have an urgent surgery as this is just cosmetic.

But before then I have another tick off my bucket list and that’s an indoor skydive with my bro Darren and my nephew Josh.  We are off to Milton Keynes on the 11th August.  Little did I know that my brother has always wanted to do a skydive.  Me too! Although not sure how my body will react to a real one so we thought it a safe option to do a wind tunnel first – we get 2 normal flights and a 3rd is Virtual Reality.  Apparently it is like actually jumping from a plane.  Watch this space as will tell all next time.  And hopefully I won’t feel the need to actually do a real one.

Healthwise, I’m as good as can be. I’m used to how I feel now and as Lewis said to me he’s forgotten what I was like before I got sick.  There’s no point in looking back eh.  The manual work at the farm and regular gym exercise is helping strengthen my muscles and I am and feel stronger.  I’m on extra vitamin D etc too, although with my holidays, outdoor work and all this lovely sunshine I’m sure I’m getting lots!  No one can say I’m not trying my best! It’s hard but it’s good to have a focus.

I’m feeling positive, happy, and so grateful for my family and friends. I had forgotten how it felt to be a bit more normal and having this summer has really helped – exactly what I needed!

Enjoy the summer everyone, will update again soon – feel free to share the blog x

Thursday 11th April 2019

Happy 14th Birthday Freya!

Today is Freya’s 14th birthday! My children are growing up fast and I feel so lucky to be still here for them. They keep me going x

So a little update….

We had a wonderful much needed holiday in Florida. The warm weather in February really helped me, so would be nice to get away every winter for a bit – we shall see. We had a great time but it was all over so fast….

  

Just a snap shot of some of my favourite pics – take a look at my facebook page for loads more.

Best of all we got to swim with Manatees! OMG! A tick off my bucket list – best ever!

I didn’t have to cook or clean, we ate out every night.  We saw the most amazing beaches and sunsets, wild dolphins and wildlife.  Met Winter and Hope dolphin at Clearwater Marine, went on an airboat, kayaking, lots of swimming.  The family went shooting and shopping – so much shopping – teenagers like shopping!  It was amazing but over far too quick and now it’s back to reality and working to pay off the credit card! ha ha.

I bought some brilliant Breast Cancer trainers out there! Love them!

I’m back working in Learning Support at college, which I enjoy so much.  I am glad I tried the office job but I’m so much happier working with the students and making a difference on the ‘front line’.  I am helping at the Willow Farm in Earls Colne which makes me happy, it helps boost my income in the holidays when I don’t get paid at college so hopefully this combination will work perfectly. At the moment I’m planting up the little tiny seedlings and smiling as I’m potting! Work is good.

Unfortunately I’ve had a lot of hospital stuff going on – scans, checkups, pain management and meetings to discuss my next surgery – which is to sort out the left ‘thigh’ boob.  This was always planned but I’m delaying this until after the summer – I need a break from surgery for a bit as I’m worn out.  The scaring is painful but I’m managing it and it’s not cancer related so no urgency.  The cancer seems to be staying away thankfully – just needs to keep it that way.

Bad news is my bones are deteriorating faster than I thought – I’m gutted as I’m exercising (with my new trainers!) with weights, walking, swimming, eating lots of Vitamin D rich foods (salmon, broccoli, cabbage, spinach, orange juice, cheese, eggs, tuna, yoghurt, cereal, oat milk etc etc), plus I take a bone supplement and Vitamin D (with K) drops.  I’m not happy but it explains why the pain is getting worse.  But hey, just something else I will need to adapt to.  I’m getting used to adapting now and being accelerated to an 80 year old body.

Otherwise all as good as can be and we are just bumbling along. I have booked my next tattoo which is exciting.  I’ll post again with an update then.

Feel free to message me any time and thank you to everyone who continues to support us.  Life after cancer is tougher than anyone tells you – keep on swimming x

Sunday 10th February 2019

Anxiety, Panic, Stress, Worry hits the Britten house….

So lets start from the beginning….

I haven’t written since October last year as I’ve been a bit busy with the new job.  Needs must and all that – as I wrote in the last blog I needed to step up and help to get our finances straight and the only way to do this was to work more. Money worries were causing us so much stress and worry and I cannot just sit back and not help!

Hey, I like work, I’m a workaholic, easy I thought.  NOT! Not when you are me and not only start a new job, still work the old job, add in the bar work, take on some farm work (although this is recently), run a family and a home with 6 dogs, help support them all including my self employed husband build his business etc etc.  Oh, and try and cram in hospital appointments (for both myself and Lewis), relax time for myself and see my friends and family on my day off.  Not easy – relax and family time was loosing out.  Nothing is straightforward in my world – so much to cram in and not enough time as usual.

But, I have managed to last another year! Most memorable of the year was Nathan’s 18th birthday, Clover and Dill’s puppies and my most awful surgeries so far.  But we did it…..

We had a lovely christmas with the whole family….look at us all! Just getting this photo was hilarious!

And a great meal out in January to celebrate Lily and Kiri’s birthdays too…. love these lot so much…..

I’ve found it’s been a tough few months – I’ve worked hard to help get our finances in order.  Keeping busy helps take my mind off the pain but I’m ok. I’ve been helping Phil with his marketing and social media which has been great for his business and that’s building up which will then take the pressure off me – thank you all for your continued support.

Before I had cancer I would have just continued running on adrenaline and just work work work.  Tricky when I need to help support my family, pay the mortgage and bills, no good if my health goes bad again.  It’s always in the back of my mind whether stress and worry has contributed to me getting cancer.  Who knows? But I cannot sustain doing so much now.  My mind wants to but my body can’t and mustn’t.  Just can’t do it.  This is hard to accept but I can’t risk it. I need to look after myself much more now.

So what am I going to do about it eh??? Well I still need to work but we are going to have to get by on less cash.  Luckily my family like pasta! ha ha!

I decided to stop working at the pub on a regular basis – Lewis will take my Saturday shift and I give up the Friday evening – far too much to do a days work and then on for an evening shift.  But I will still cover shifts as and when needed to help out and cover when Lewis has his exams.  But nothing regular.

I take the difficult, and maybe stupid decision, to give up the stable new office job.  I’ve learnt new skills and I now understand behind the scenes at the college, met new lovely people, got used to working at Colchester, but missing the students terribly (and term time only working – yes I hate to admit it but my body needs that rest of school holidays!) So I am returning to Learning Support in a few weeks – what I love – still at Braintree and now at Colchester too.  I’ll be helping out in Media, English, Bricklaying and Sport – nice variety.

What else? I’m weaving willow at my friends farm – lots of you will have seen on facebook – please like our Earls Colne Farm page. I am enjoying this work so much – lots of fresh air, learning to weave living willow and I’m hoping to learn how to make fence panels soon. I love crafts!

But….

Best of all? We have a holiday to FLORIDA! I am beyond excited, I think we all are.  I will update on the next blog post on this.  But oh do we all need this holiday so much and it couldn’t have come at a better time!  This has been my target and focus to work towards – the end goal – it’s good to have something to aim for – holidays are great motivations!  We have all mucked in and saved up for this holiday together and we’ve done it!

But…. and there is always a but isn’t there!….

On Friday the school calls me (they have been amazing at Honywood supporting my family) to tell me that Freya needed picking up straight away – she’s really upset, had a terrible panic attack, which had left her shaken and feeling ill. Bless her.  She has been fine since my last surgery last summer – doing so well.  But I’ve not been about for her so much and things had built up for her.

I am at work.  So I call Phil (thank heaven for his self employment and flexible working now) to pick her up.  Meanwhile I video call her (while of course multitasking at my super busy last day at work in the office job) .  We talk, and message, she’s calmer and ok.  No trigger – just everything piling up and it’s just all too much for her – and don’t I know exactly how that feels!  Nothing specific, just everything.  She’s 13 – being a teenager is tough enough anyway.  I know I wouldn’t want to be 13 again!

So once home, we hug, we chat, and The Pig of Happiness comes out again (thank you Anne!).

I explain to her that most people feel like this a LOT of the time – it’s normal.  Some people have learnt to deal with everything better than others.  I’m still learning myself.  So for a young person it’s so much harder as they don’t have the life experiences. But what matters is how we cope and deal with it.

And this takes time to learn how to deal with this feeling and how to watch out for signs before she gets so bad again.

An anology (I think that’s the right word) is how it feels like you are on a downward spiral slide to the bottom of a steep dark hole – things pile up and down you go unless you can stop them.  I explained to her how she needs to learn how to help herself and ask for help as soon as things start to get difficult, as it’s so hard to climb back out of that hole if you’re right at the bottom and feeling so bad.  Sometimes it’s a gradual fall, sometimes, as I know all too well, you are pushed straight in with no warning and land with a horrible crash, head first at the bottom of the pit! That’s when something bad suddenly happens – like cancer! But with support – family, friends, fun stuff and one day at a time we don’t have to stay there – none of us!

There is so much help out there now – lots of talk about our mental health.  I know I’ve spoken about my crazy mind many times in this blog but everyone is different and my coping methods aren’t going to work for everyone.  But I do understand.  And she needed to remember she has so many people that want to help her.

So, we make spider diagrams to help with happiness and coping.  I am the queen of coping strategies aren’t I?  So I thought I’d share some of our points we made.

• Talk! It helps to talk – you then realise that so many people understand exactly how you feel to some degree – friends, family, even the dogs are great to talk to – great listeners too!
• Mindfullness! Yes we’ve all heard of it. But what is it?  I am the biggest worrier of all time, I’ve read lots of books to try and help myself, and I find that if I stop, make lists and think: “what is the worst that can happen or the chance of the worst happening” – put things in perspective, breath and work out how to deal with it.  I’m not perfect but I try my best. For Freya we look at downloading an app on her phone to help her too – CALM is a good one.
• Exercise! Release those feel good endorphins! Freya has been in her room a lot – it’s winter and she’s a teenager and has wifi!  But some exercise is good – walking with the dogs will be a good start – great for breathing in some fresh air to keep calm too!  Then we’ll move on to getting back swimming, gym and yoga together again. We are going to be doing lots of activities and walking on holiday so she’ll have a good start and before we know it will be spring! yay! love Springtime.
• Eat well! Freya, again like most teenagers has been eating rubbish – a lot! Not good for the mood swings, skin, energy levels anything.  Again, it’s that winter thing not helping.  So lets start with a bit more fruit or fresh juice, just add in some good stuff along with the chocolate ice cream and crisps! ha ha! Not too drastic to begin with, nice and gradual.
• Write and draw! She loves taking photos and drawing – she’s planning her new room design – a mood board of all the things she would like would be a good start.  Going forward, she could write down any worries or draw them in her art to express how she is feeling. Art therapy is great!
• Relax! Plenty of sleep (some earlier nights for Freya), but also plan some relaxing fun days – beauty therapies (we are starting with new eyelashes for our holiday and they look great – I feel like Daisy the cow – omg we love them, thanks Georgia!), shopping days, movie days – feel good movies with happy endings – plan lots of nice stuff with friends and family…..
• Friends and Family! (including the dogs!) – problems shared really do help – call on everyone around you.  Surround yourself with people that help you and not drain you.
• Listen to ABBA! We love a bit of Mamma Mia or the Greatest Showman in our house – in fact any uplifting music can help when you feel a bit fed up. Or just rock it out with some Rock! ha ha!

It’s a start – it’s good to have an action plan.  We’ll see how we go.  My new job will free me up some time to be around a bit more for her too – my family are everything to me.  It’s tough, she was only 9 when I was first diagnosed with cancer – she’s had so much to deal with so it’s not surprising it’s coming out now. It’s been hard for us all, but she’s our little one.

We lived next door to the Vicar of our village for many years – Viv!  In fact she was the first person other than myself, Phil and the midwife who met Freya when she was born at home! She had studied to be a Vicar later in life and I asked her one day what had made her decide to do this.  She told me that her husband had died young and she had the 2 children who were so little at the time.  She explained that she felt like everything was too much and she was literally hanging off a cliff by her fingernails and trying to claw her way back up – another analogy?  Anyway, she said she had this overwhelming feeling that she was being held up by a huge hand – God’s hand.  She believed in God and believed she could do it.  Then she knew she needed to help others back….. and she did! And she was wonderful at it!

I told Freya this little story to help her too as I think that if you believe in something higher out there, to help you through tough times, is good too.  For example I chat to my dad every day – in my head of course – he’s been gone for over 14 years and I am sure that he and the rest of my family are still there to help us.  It helps me to think that anyway.

Which brings me to this date – 10th February! Funny how dates coincide isn’t it – this was the date 4 years ago exactly that I was told the extent of the cancer – 4 years I’ve survived!  It was the day my lovely Auntie June died of cancer too.  A day none of us will ever forget.  We have been through so much.  But we also have a holiday soon and that makes everything ok. We need this as a family so much….

FLORIDA HERE WE COME!

And we are all going to be helping Freya to learn how to ride those waves life throws at us.  We are a team – we are a close family and we can continue to do this.  I think we’ve been riding a tsunami these last 4 years and it’s about climbing back onto that surf board and keeping afloat, and then surfing those waves…..

Wednesday 31st October 2018

It’s Halloween!

I love Halloween as it’s the day before my birthday (I’m going to be 47 tomorrow!)

To celebrate my birthday we are going out to Riverside Spice Indian for a meal with the family tomorrow evening.  On Saturday Freya and I are going into London to see the La fille mal gardee ballet at Sadlers Wells – so exciting but even better that we are going with one of my best friends from school – Caroline – I haven’t actually seen her for about 20 years! so much catching up!

I’ve always enjoyed the behind the scenes and special effects (hence my love of halloween) and hopefully we will get to see behind the scenes of the ballet with her as she is very important there! Even more excitement!

If I could go back to studying I would definitely learn costume and makeup design. Love it! And who knows, maybe one day I may have time to paint scenery or help with costumes. If I ever get to retirement it can go on the TO DO list! My TO DO list is constantly growing!

So this year for halloween we don’t have any parties, I’m not decorating the house, I’m not baking halloween cookies for the entire village for trick or treaters (they can have a bucket of sweets instead). I am not goryfying my children and their friends with special effects blood and fake gunshot wounds! My kids have got older. They are either working or going round to friends this year to make up themselves. But that’s fine. It’s fine because I’m here and my kids are growing up into independent young people. I am so very proud of them I could explode with happiness for them. There have been times that I didn’t think I would be here to see them grow up.  They are amazing young humans. Nathan is doing well in the chef world – totally head over hills in love with Kiri (who is perfectly wonderful), Lewis is in a good place – new lovely girlfriend, enjoying partying but also working hard for his GCSEs, looking at colleges and A levels! so busy! Freya is happy, she has good friends, enjoys Art, works hard and we are getting to spend some good shopping days and quality time together! I love my kids sooooo much.

I am lucky and for the first time in ages I actually feel more positive about the future where the cancer is concerned. I just hope this isn’t calm before a storm – that worry is always there.

But these last few months have been so tough – I haven’t updated the blog as there’s not been much going on medical wise, but I’ve also been so busy just dealing with other ‘stuff’ instead….

I’ve swung between feeling totally invincible and able to cope with everything that is thrown at me – I am wonderwoman feeling! And I have had cancer so in perspective of course I can do this.  But then I’ve also felt totally overwhelmed and crushed and can’t cope with everything all piling up.  I have just had times when I have had enough.  My mind has been crazy!

Luckily the positive and practical side of me kicks in, overrides the doubt and saves me every time, like a failsave……so what’s happened?

The chopping off of my body parts! ha ha! very halloween and gory eh! Just check out the medical pics page if you need a reminder! I’m healing as well as can be expected but this time has been the biggest struggle with pain.  It has affected me more than I thought it would.  My confidence and the look of myself.  Even my medical staff look and you can tell by their faces I have been through so much, and they often say. It’s the reality of it all – like a post traumatic stress – after the event the actual reality kicks in. Of course it is all worth it to save my life but it’s still hard.

All summer, yet again – third summer in a row, I’ve been under pressure to recover from surgery to get back to work in September (I have to get hours in September for the year ahead).

My physiotherapist (Amy) was amazed at how driven I was and I must say I did well. Although it’s difficult to get the balance right between doing enough to get strong, but not doing too much and trying to rush things. And of course plenty of times I pushed myself far too much and set my recovery back many a time – this is still working progress. But I did it and I got back to work ready for start of term in September. Although it did take some worrying discussions with HR and Occupational health to allow me to, as on paper what I had been through was major and I needed to return just 3 months, after mahoosive surgery! Wow! I can see now why they were worried but at the time I just needed to get back – that was my focus like tunnel vision – I need work for my mental wellbeing and our bank account wellbeing.

It felt so good to see my work friends and to feel like I was contributing to my family.  Don’t get me wrong, it’s great to have time off at home if you are feeling well enough to do everything you want to and enjoy.  But you also need to have the money to do nice things too.  It is so frustrating when you need to work for financial reasons and can’t.  So I would make myself do whatever I could at home so Phil could work more, which ended up being harder than being at work!  When you are stuck at home you see all the things that need doing and I find it incredibly hard to ignore stuff.

So back at work, but….

Firstly my hours had been cut (that’s the risk of a zero hour contract!) – positive to have a gradual return but not good for the bank and no money to pay bills is stressful.  So I had no choice but to do some waitressing  in the evenings to boost the income which has been exhausting and hard work.  Remember I was only 3 months post surgery.  The kids have been working, Phil has been working and trying to build his business – such a strain on us all.  Then my Personal Independance Payments (PIP) were stopped abruptly with no warning.  I understand I’m no way as sick as some people and there are lots of people that are much more worthy.  But this means I have to work an extra 30 hours a month to compensate and actually I’m not as well as I look at all.  Plus if I am completely honest I have to be careful not to overdo it for my health and this stress did not help. So add that lack of PIP help on top of being 10 hours less at college too, and having no pay for the previous 2 months.  Not good at all. Oh and don’t forget the £2,000 vet bill! Car needing mending, insurance and MOT etc etc.  Always something, that’s life I know but really, all at once!?  I hate getting stressed because of lack of money! We don’t need much, just enough to pay for everyday bills and a little savings! grrr! I constantly remind myself to breath and think of how much worse we have been and got through it. It helps to put things into perspective but it’s been so worrying over the summer.

So I had no option but to look for another job that wasn’t zero hours and wasn’t term time only.  More stress.  It’s been stressful job hunting for the right position and the worry of meeting new people that don’t know what I’ve been through.  I’m not well enough for full time work just yet.  Plus I didn’t want to leave my job, I love my job and I enjoy working at the college.  It’s ok when you want to leave a job because it’s time to move on but I didn’t want to!  So I applied for lots of part time positions and there were quite a few that would have been good – vet receptionist (discount would have been useful!), various office jobs for the NHS (doctor friends useful too), private hospitals (nice food in hospitals and good pay), and more.  I was actually surprised at how many interviews I got offered.  But I didn’t need to accept any because I have been offered a part time job in college as an Admissions and Curriculum Support Officer, 3 days a week (tues, wed, fri), 52 weeks a year! This helps a lot as they should already know my medical history too as I’m under occupational health – just makes things a whole lot easier for me not to have to explain everything all the time.  This also means I can continue to work on Mondays supporting my students and working with my friends in Braintree as an LSP term time.  I will get Thursdays and Sundays off work to rest (ha ha) and cram in everything else at home (mopping the floor 5 times a day after 6 muddy dogs, walking, swimming, washing everything, cooking, shopping, seeing friends etc – not really a day off to rest I suppose).  And I will still help out at the Lion in the kitchen as I love it. Perfect.  I hope.  I could do with some good luck. 

So was that it? Of course not…more stress and worry? Yes of course, my poor sister Michelle is having to make the horrible decision to have risk reducing surgery. This is not as easy as you think it is and it affects the whole family.  When you have cancer you have no choice.  But if you don’t, but you might, it’s a difficult decision as so much can go wrong.  Surgery has it’s own huge risks.  We are trying to support her as much as we can but for myself and my mum it’s very different as we’ve had cancer and it’s very different outlook for us. I wouldn’t wish this on anyone.

I dread the thought that one day this could be my Freya.  I really really pray not but if it is we will have gone through every option with my sister and who knows what will be discovered in the future.  We have a meeting next week with a top Geneticist in Cambridge who is an expert in the PALB2 gene. In fact they are using my family as part of their research.  Should be interesting. I will be note taking for my family’s future. 

There seems to be a lot of my friends (near and online) whose cancer has returned and spread. Or worse it has killed them.  This has really knocked me too – of course it worries me all the time. Getting through the first 5 years after diagnosis is so important.  I am nearly reaching 4 years. I know I have done all I can to help myself. I can’t do any more except to try and keep calm and not to stress and worry about it as what will be will be now. Easier said than done though. Just keep swimming eh!

When things stack up it makes everything else so difficult – think Jenga game – it tumbles if too much piles up.  I am trying so hard not to take on and do too much.  I still have constant pain pretty much everywhere, fatigue and menopause symptoms. Sometimes there is no choice and at the moment my family and friends are holding me up and keeping me going.

But even with all this I am feeling more positive. That positivity still bubbling below the surface and helping me cope.

Some good news is that Phil got a tax rebate – so rather than use to help us muddle along, I have spent all of it on a holiday in February to Florida (cheaper than the Canary Islands and such a bargain!) Not sure if we will have any spending money as that has gone on vet bills and subsidising our living costs. But hey, we need a holiday no matter what and this one is on the bucket list.  All 6 of us are going! yay! I can’t wait. Life is too short to wait so what the hell! We certainly need some fun! And it’s giving me a drive to work and keep focused. Something to look forward to. Plus sure we can all live on pasta for a while!

As I mentioned I’ve been finding my body difficult to cope with – all the scars and pain.  It’s affected me more than I thought.  The scar tissue is getting worse as time goes on and needs stretching and massaging constantly.  My leg scars feel like I have the tightest most scratchiest elastic knickers on all the time.  I keep going to re-adjust my pants and realise it’s my skin! ha ha! They are my scar knickers! I get a lot of pain across my body and especially my hips all caused by the scars – sharp stabbing shooting pain, cramps and nerve pain.  So what do I do?    

Well I’ve started decorating my body of course, and had my first tattoo (with the go ahead from my surgeon)!  What’s a little bit of self inflicted pain when you’ve been through what I’ve been through!  It felt weird – scratching and sore but ok. Sitting in the same position for ages was worse – my hips were so painful it over road the tattoo pain. Don’t think I could do it for more than 2 hours so hats off to Nathan and Kiri being hard core tattooed! My ribs were sore afterwards as they are a bit near the surface and a bit bruised, but otherwise it felt like sunburn – and no where near as bad as the burning after surgery. I can do this. And it’s so addictive – I want more already!

But I need to be sensible and started with a butterfly tattoo to test how my body reacts and so far so good.  We need to make sure my body doesn’t over-scar now. It’s all peeled and seems ok so time will tell for sure. Then I just need to save up for more to embellish and decorate myself! Swirls, beads and more butterflies – pretty stuff – I don’t care.  The scars show what I have been through so I don’t need to cover them, but it will be nice to have some prettiness too. This is for me and if it helps me feel better with my body then hey, watch this space!

So I feel positive. Butterflies mean so much – new beginnings, a symbol of resurrection, life, hope and change.  They remind us to enjoy the here and now. A blue butterfly is believed to symbolise joy, beauty and luck…..

Perhaps the BUTTERFLY is proof that you can go through a great deal of darkness, yet become something BEAUTIFUL….

Tiny Buddha

Progress pictures of my butterfly…. its on my right side – I thought I’d start here as it was just below where the cancer started and we thought best to test on some normal skin first.

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So what’s next?

Celebrate my birthday with  a family meal! Start my new job – work hard but not too much as I am such a workaholic! Have fun and laugh more, enjoy my family and friends, keep positive and try not to worry so much. I am such a worrier! Get back to some sort of new normal life.  Try and cope with the pain without the drugs – I will be trying out a stronger CBD oil so will let you know about that. Sort out our finances as much as possible. Sleep! Watch movies, stay warm, bake and eat lovely food.  Go on nice walks with the furry clan! Try and ignore my messy dirty house – 6 dogs don’t help. Lots of nice happy stuff. And of course keep on swimming! Look forward to the future – and of our amazing holiday! Definitely working progress but I must keep going and TO DO lists help…

My dear friend Kath (who I need to visit soon) taught me this quote:

Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible

Francis of Assisi

And for medical stuff? a few check ups but not so often – every 6 months unless I am worried about anything and then I can just call and get checked straight away.  I have a good team to monitor me. I’m on medication forever to try and keep the cancer away but I’m getting used to living with the side effects now, horrible as they may be it’s amazing what you learn to live with and I have massive respect for some people that have much more to deal with than me.

A few people have asked if this is it for the surgery.  Not quite – still more surgery but just to tidy up the left boob so there is no urgency and not cancer related (at the moment and I hope it stays this way). This is such a nice feeling.  Mr Griffiths says they always stuff more into a boob so my ‘thigh’ boob needs some taken out and adjusted to match the other more, which should be pretty straightforward – it’s all lumpy at the moment and lots of scar tissue which makes it sore.  Maybe by next spring/summer I know how nhs waiting lists are so who knows. Still better than the implant or my ticking timebomb real boob! Plus this means I can focus on my new job.

Life is good and I hope it continues to get better or at least stay stable!  I think when I take my tablets every day I am going to visualise them as lucky tablets! Bit like Harry Potter did to Ron! May be I will buy that lottery ticket too.

Wish me Luck as I like to share happiness!

Wednesday 1st August 2018

Beneath the Dress!

I’m now 7 weeks post my last operation in June and I can honestly say that I’m beginning to feel a bit more ‘normal’. Of course not ‘normal’ as most of you know it but normal to me now. I am in considerably less pain. No oozing open wounds. I can walk and sit for limited times. I am getting there. These last few months I honestly didn’t think I would get back to any near normal, but I’m doing ok. It’s not come easy and this has been the hardest yet.Having 3 operations so close, the wound complications, stitches embedding and on top of everything else has been so difficult. But I am getting to another new normal for me. Normal to me means a level I can cope at – it’s a plateau of how my new body feels. This body doesn’t know what it’s like not to hurt anymore. But I can cope with that. I am coping and I think I’m doing it pretty well, if I say so myself.

So what am I doing?

Well of course I’m eating well.  Not sure if that includes all the ice cream, but hey, ice cream is helping! ha ha.  And I’ve been experimenting with some extra greens which are extremely high in iron and seem to be helping with pain relief too – still need to trial this more so will update soon.

I have given myself quite a tough schedule exercise wise.  I have been steadily increasing my activity every week as I need to be able to get back to work in September so I have no choice! But it’s good as it also gives me something to aim for.

Of course I have rested a lot so don’t worry and I’m really good at listening to my body but I am so sick of daytime TV and being house bound – this has been motivation in itself.

I have been gradually doing more each week:

• I began by walking about the house and garden
• Then I used the stairs for exercise to stretch my thigh muscles and strengthen – remember Step Aerobics?
• Then simple stretching yoga and warm up vinyasa’s.
• Stretching and walking in the pool
• Which let to a sort of swim/walk/float thing
• Then back stroke and gentle slow front strokes
• Now I am managing to swim lengths again – slowly and not too many but I am swimming which is just sooooo good
• I am walking my dogs (not fast, but I’m walking). This week I have walked further and a little quicker each day.
• This week I have been swimming every day
• and today I’ve managed to (sort of with tweaking) do a Body Balance class!
• I still can’t manage the hot tub as the jets hurt my legs too much still but I’m sure I will in a few weeks.
• I have also begun to drive again – it’s amazing to taste that freedom!

I am actually so proud of myself!

These 6 have been helping me much more than they realise.  Ok I could do without the little ones constantly jumping in our pond and skidding through the conservatory with mucky wet paws.  But they need walking so it makes me push myself for them too. Aren’t they gorgeous!

We’ve been out with friends and family – not far – just in the village but it’s been so good to get out. And yes! I have drank alcohol! It has helped with the pain a little too! ha ha! But I won’t be making a habit of that as hangovers are not good mixed with hot sweats! I am finally managing to cut back on the pain meds which is great too.

This photo is what has prompted me to write this update. My sister saw this photo of me with my best friends Jane and Hannah at Gina’s 21st party. My sis Michelle thought it was an old photo. But no, this was taken a few weeks ago, just 5 weeks after my ops. We chatted a little at how amazing I looked! Thanks Shell! And mostly about how a dress can cover up so much. We discussed that If you didn’t know me you actually wouldn’t have a clue what my poor body had been through these last few years! It’s great for me, it’s great for the surgeons. But it just goes to show that if I can disguise my body then imagine how many other people are doing the same! You can look at someone and think they are all fine from how they look. But it’s so not been fine. It’s been quite hell really. I’ve added some descriptions. Obviously if you really want to see what lies beneath the dress then go to my Medical Pictures section – but as usual be warned as it’s not pretty.

Master of disguise eh? Just makes us all think really – including me!

So keep going whatever it is you may be struggling with – not everything is visual.

I continue to amaze myself some days.  Gentle hugs to everyone that has been helping us – we appreciate you all so so much, thank you x