Last weekend I had my Personal Independence Payment Assessment (PIP). This is the only help I get financially as I’ve been poorly for so long and unfortunately will be for a long while yet if not forever. Up and down – sometimes good sometimes bad, sometimes really bad. It’s about £300 per month and is just a little added extra to help. It means that I can work part time which helps with my health and my mind. In an ideal world I would work a little less but financially we can’t pay the bills and have nice food or have any chance of a holiday so I need to work for financial reasons, but I am also a self-confessed workaholic! I actually enjoy work – my problem is trying to stop myself doing too much. I enjoy learning new things and I enjoy working with and meeting other people. I like ‘doing’. There has never been enough time in a day for me to do all the things I would like to try! This is going to be a challenge for me.
There are so many jobs I would like to do – always up for a challenge, me! Unfortunately now to get a permanent job I’m not sure I would be able to due to my medical records – not sure how I stand with that one. So, to get around this I work on a zero hour contract which means I have flexibility without the guilt if I’m poorly or have hospital appointments. I work at College supporting students which gives me variety every year and I absolutely love, the hours are really flexible and I get school holidays off so I can rest! Plus I get to work with an amazing bunch of people.
I’ve managed to do some waitressing at the Lion across the road (of course not at the moment!) – this is where my boys work too – just helping out when I am able and when they are busy. It’s always been on my bucket list to be a waitress – maybe when I was younger but hey never too late they say! I love it so much! Although I’m not very good as I talk far too much to the customers, I can’t carry much and I keep forgetting things – I drive everyone crazy! But it’s so much fun. And work should always be fun otherwise you are in the wrong job! I really hope to get back there soon as I miss it. Meanwhile I will just eat ice cream and have lunch from there.
At the moment, I miss work, I miss my friends, I miss so much, I wouldn’t miss it so much if I was more able at home, but I will get there. I am getting there gradually I am just so impatient! I am really good at finding new ways to do simple things meanwhile! ha ha!
So back to the assessment. I’ve never had one before so I didn’t know what to expect. But the guy, James, was kind and understanding. He basically just had to go through a questionnaire on his laptop and asked me lots of questions about my health and how it affected me – on good and bad days. Luckily he didn’t mind me relaxing on the sofa as I still can’t sit very comfortably still.
So, I don’t know if the PIP will still continue – who knows but I hope so. He thinks we may be entitled to some other financial help – like statutory sick pay from the government and maybe a top up on Phil’s wage now as he has had to change job to be able do more to help me etc. Phil got made redundant last year from the bank where he was able to work from home, which enabled him to take me to hospital appointments and help if I was poorly with the family. But there aren’t many jobs as flexible in an office about now and there is no way he could take a permanent job in London full time. So now he has set up his own business as a gardener and a general help around the house, plus he does some freelance IT work which is good for him as he has so many years experience and is so knowledgeable. It’s flexible for us but we are having to cope on much less income.
Anyway I’m getting off track, PIP guy was here for over an hour and it was exhausting. But worse than that it was quite upsetting – it was a reality check for me of what I’ve had to go through, going through and what I will always have to live with. I missed out a lot and skimmed over bits (maybe to my detriment now to think about it) but it was still awful to go over and actually list. I don’t read my past blogs. I look at the medical stuff because I’m interested but I sort of distance myself from it actually being me. I don’t want to keep going over stuff as what’s done is done, but with things like this I have to. It wasn’t nice – I think that’s why I don’t like any of the counselling I’ve had as they always go over the past stuff – so negative. They need to do positive and forward thinking counselling.
Although I still don’t plan much in advance yet, I’m not sure if I ever will now, make each day count and all that, of course I have aims and dreams but I’m still in the moment. This year I wanted to go SUP stand up paddle boarding, start the tattoo project, zip wire in wales, maybe a holiday somewhere warm in the winter time…. loads of stuff…. but in reality I’m aiming to get back to driving, swimming, dinner out with my family, a trip to the beach, be able to walk my dogs, do some gardening – simple stuff – one step at a time.
It was when he asked me about hobbies that it hit me as I have lots of hobbies and interests but unfortunately I can’t really do any of them at the moment. That was sad. But as I said, I will get there. I will make myself. As soon as I can sit better I will be sewing some puppy toys!
At the moment I have to rest a lot still and it’s amazing how much TV I’ve been watching – Lorraine, This Morning, The Dog Whisperer and of course Love Island – so addictive! Dani and Jack are our favourites. Never watched before but absolutely loving it so much!
Magazines have been great too (thank you Rayner!) as I can flick as reading is still tricky to focus but as soon as I can lower the medication I hope to get reading more again. Oh and I can water the garden and I play with the puppies as much as I can so I’m occupying myself pretty well. And on the subject of the naughty puppies I am getting very good at mopping my conservatory floor a lot after they jump in the pond and come skidding through and run around! I think of it as gentle self help physiotherapy – especially for my arms.
So it also made me realise how much I can MAKE myself do and how much I have adapted. One of my friends said to me the other day….
“Your problem is you make so sick look so good!”
Which is so lovely, as of course I wouldn’t want to actually look how I feel. Can you imagine that? So if I actually look poorly then I really am feeling rubbish. I’ve always loved customer service! Hey, I wanted to be an Air Hostess but I wasn’t tall enough back then! ha ha! Why spread the pain and misery to others? Think Disney and keep smiling when you can! But this means only my closest family and friends really see what it’s like to live with me and to be honest I think they get as frustrated as I do. Like when I had to ask Lewis to take my socks off the other evening because I just couldn’t reach them! He has promised that when I am old he is not going to look after me! ha ha! Thanks Lewis x love you too x
One thing I did ask the PIP guy was whether he had come across anyone going through anything similar to me as in coping with after effects of cancer, side effects of drugs, trauma to body like fibromyalgia pain etc etc, and, if so, how they coped and what they did? I don’t know what I expected? Some new idea? Some amazing new way of coping, a magic wand??? No, what he said was that……
“Very few people have a mindset or drive like you do……most people in your situation would not be able to work and would be quite depressed”
Poor people. I felt quite lucky – so after all it’s good to be a little crazy eh? I think even if I lost my legs I’d find ways of doing things. When I’ve been at my worst……. being hospital/bed/chair/house bound the last few months I’ve still been busy some how – maybe it’s just how I am. In fact I have the opposite problem! I want to do too much and I find each obstacle a challenge. I am surprised I wasn’t better at competing in sports or against anybody, but I can compete with myself? Strange.
Changing the subject the other thing I’ve realised this week was how we view ourselves – Visually. I have had everything ‘womanly’ taken away to save my life…. my breasts, my ovaries, my hormones, even my nice stomach and pretty good arse if I say so myself, and now my thighs are painful and dented. At least my hair has grown back so that’s a positive. I have very a numbed distant sensation over most of my core body, thighs and right arm. I find it really hard to look at myself in a mirror unless it’s to assess my scars and healing. Not that I was perfect before and I didn’t stand in front of mirrors much anyway but it’s just horrible now. In clothes I’m ok – again – I can ‘look’ fine on the outside and I know what I can wear and what I shouldn’t. But underneath I’ve been sliced up pretty good and proper by a samurai warrior! aka my plastic surgeon! albeit as neatly as possible and he’s saved my life so far and done an amazing job – well done Mr G and his team. I know I’ve had to do this to stay alive and I know clothes can do wonders and I know I’ve had my children, I know it could be so much worse, but it’s still hard. Hence why I feel the need to have tattoos – not to camouflage, but to embellish what I’ve had to go through to get this far and to just pretty-up for myself. Delicate flowers and butterflies! This is the plan to help me visually. It’s good to have a plan.
So 3 1/2 years since diagnosis and it is still so tough but I’m starting to see an end to the surgeries – hopefully just maybe one more small one? Fingers crossed.
It’s been a hard old slog so far and very gruelling, not only on me but all my family too. Poor Freya had a bit of a meltdown at school the other day – it’s just so much. She’s ok and it was good for her to have a good cry and get it out. Bless her.
And Mentally? I had to find a reason. And I believe that getting cancer and going through everything I’ve been through was so that this PALB2 gene could be found – I feel I have to look at it this way. If they had removed both my breasts at the beginning I would not have had everything else happen and this gene would never have been found when it was. Or not as soon anyway as the tests didn’t exist and we may never have been eligible to be tested. I believe everything happens for a reason, even the really bad stuff. So to get my head around all this mentally I believe someone had to go through all this to help others and if it wasn’t for this then my family wouldn’t know about the faulty hereditary gene. And unfortunately that someone was me. But would I have chosen anyone else? Of course not. We are privileged to have this knowledge as so many people don’t. We have a heads up! Me getting cancer could mean that the rest of my family, and extended family don’t get it – it could save my sister, and even my own children if any of them test positive. Either by being tested, closely monitored or have the option of risk reducing surgery as Michelle (my sis) is opting for. That’s what keeps me going. That’s how I cope mentally as I have a reason now. I told my kids it’s like jumping in front of a gunman to save them. I would do that, I would somehow dive across all of them like some amazing stuntwoman. Wouldn’t any of you too? I would honestly go through all this again if it meant I could save them. It’s called being a mum.
And it’s the little things that help too and make you laugh…..
Like the other week when I was laying on the couch in hospital in huge amounts of pain having my stitches dug out of my thighs – so much pain! Bad memory and experience – no pain relief. Phil doesn’t usually come along with me but I asked him to come in as I knew it would be a tough appointment and sometimes even I need some support. Anyway, afterwards he told me that while I was laying there all he could see was my thighs while the surgeon and nurse were digging around, and he said my thighs looked good!!!! OMG! Random! He better not be getting any ideas! No way! ha ha!
To me I see pain, scars and distorted legs – usually with a doctor of some kind looking closely – but he thinks they still look good!!! Wow! Not sure if that’s good or bad. What’s that saying? “Beauty is in the eye of the beholder”? It is nice he can see through the scars and pain and horrible stuff – it must have affected him to watch me go through all this too. Maybe not the right moment to be assessing my thighs though! He’s not a man of loads of words when it comes to feelings so it’s been hard for us and I’m sure there are so many other people in similar situations. I hope we are strong enough to keep getting through this together as we have come so far – I suppose that’s what marriage means. And as a couple we need to adapt to how everything has changed for us too. It’s a bit like when you have a baby – things change from when you were just a couple and you adapt. I just hope we can cope with the changes long term and what we’ve been left with after cancer.
I’ve also had 2 hospital appointments this week. Firstly with Dr Liptay-Wagner, my breast consultant. It was good to see him. He’s a genuine, down to earth guy and I have a lot of respect for him – he took over from Dr Chakravorty. He doesn’t promise anything or fob me off. He and Mr Griffiths work well together. They are the ones that have had the job of picking up the pieces and sorting out – bit like the kings men in Humpty Dumpty. The last time I saw Dr Liptay-Wagner was as I was going into the operating theatre for my last surgery to sort my legs out. I had a quick hug to say hi – I couldn’t even remember if he was staying. But I found out he did and assisted as a bonus as he had another surgery after me. It helps that he knows exactly what’s happened – it’s all about communication and so often it doesn’t happen in the NHS especially between hospitals. I am my own project manager most of the time but it really helps me when I get good people helping me.
So as usual I stripped off again – this is so normal for me now too – I don’t even bother with a gown and my clothes are easy to get on and off. I wear a lot of jersey as it’s comfortable now. Again it’s amazing what you get used to doing but I still don’t like it. This time only to my underwear as I just needed him to trim off some stitch threads sticking out and check my wounds and some scar tissue lumps in the new left boob. Bless him, as soon as he saw me standing there he said I looked really good in underwear! Obviously in a professional observational way – meaning my new boobs looked even and scars were healing etc. I’ve uploaded some pics under the medical pictures page as could be useful for some of you to see what can be made a little better (thank you Matalan!). I’m good at camouflage and I know what works with my new body. It was nice of him and it meant a lot – it makes such a difference when a doctor comes across more human and not all strictly professional and distant.
Anyway, results of this meeting. He is referring me to the Pain Team back in Colchester to try and get on top of the pain I’m still in and keep me monitored. The long term plan being that I can come off most of this medication and get my body to release it’s own endorphins to keep on top of the pain by exercising – that’s my plan anyway. But I have a bit of a catch 22 situation at the moment. But I’m on the case! Again thank you pharmacy job for my medication education!
He is also going to try and get a written update from Mr Griffiths and Physio in Plastics in Chelmsford to be able to get me transferred to Physio and Hydrotherapy in Colchester. This could be a challenge in itself so no promises. We know that all the other complications I have like the fibromyalgia and hypersensitivity etc has just made everything so much worse for me. We had a good chat. I like this guy. Let’s see what he can sort for me as this is the NHS and we know all about waiting lists. Luckily I’m doing my own exercises and rehabilitation the best I know but I need some professional help really.
Second appointment this week was with Mr Griffiths for a checkup after surgery. This was short and sweet as so crazy busy there again. He was really happy that none of the scars had opened and all looked good. He confirmed he will need to tweak the new ‘thigh’ boob later in the year or so. But with my currently state of little fat there will be no point in fat lipofilling as I have none worth while. Plus it’s super painful and obviously my body probably would not like this pain wise!
I told him I was still in a lot of pain and that my thighs literally felt like the surgical team had enjoyed a party in them – in my head I meant hands dancing about in my thighs and pulling muscle and cutting and glueing and whatever. Everyone else – Phil, Mr Griffiths and Nurse giggled and took this to mean something else a bit naughty! NO! How can people all think so differently? But everyone laughed so that was good. Laughing is good. They will remember the ‘Thigh Party’ moment I am sure! ha ha.
So great news is that he doesn’t need to see me for another 3 months as I just need time to heal. Then we will discuss what’s next but he will put me on the list now and hope to fit me in about a year I expect (he said 6 months so I usually double this estimate). Unless I need to see him before of course. It’s nice when appointments are spread out – it means good things!
More fantastic news is that he said I am able to go swimming and gentle yoga – ok walk in water and a lot of corpse pose and breathing! But gentle does it and I will get there. Soooooo happy! Needless to say I got Phil to drop me at the Essex pool this morning – omg the water felt so good. Just being weightless immediately eased some of the pain. I managed to walk a few lengths, and a very slow back stroke, and to float, and slight breast stroke arms/doggy paddle mix with up and down legs slowly. I tried a few things. I did some stretches in the water too. I hurt when I got out as my body felt so heavy but it felt so good to actually start getting back and doing something. I will be taking it easy so don’t worry!
Phil and I managed to get a sneaky lunch together with the 4 spaniels across at the Lion. I can lay on the sofa on lots of cushions and eat pizza and ice cream. We are so lucky to live opposite such a great place…. although we are a little biased!
Best of all the sun is shining – we won’t get a holiday for a long while yet but I have a beautiful garden, the sky is blue and we’ve taught Dillon to dive into the pool under water! Cool doggo!
So now I just need to try and get my fitness back. Can’t wait to be able to walk the dogs again but I think this may be just round the block to begin with. Going to all take time but I feel positive and driven.
I’ve started by getting my nails painted… so pretty and sparkly….
Thank you all for all your messages of support, offers of help, lovely gifts and just being there for us. This is when family, friends and living in a village is so needed.
I found all the cards everyone has sent me since diagnosis….. so so many! Thank you x
Now I’m off to get my hair trimmed! This will be interesting seeing as I can’t really sit down for long without more pain! But needs must and I’m looking like a scarecrow! x
Meanwhile I’ll leave you with this little borrowed quote…..
……and there are so many things you can use as the light to keep going.