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.
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!
Battle of Britten 