Me!

Me!
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I am 45 years old, Married to Sean for nearly 20 years and have 3 lovely children Hope is 16, Jack is 12 and Joe is 6.

Wednesday, 24 July 2019

Reality


I have just walked out of my physio appointment, with one of the loveliest women I know. I honestly don’t know how I’d continue to function on a day to day basis without her and the other lifesavers the  practice have. I have been counting down the hours since late last week until I could come and know she’d relieve things. 

I’ve decided to just bite the bullet and write a post. As usual I’ve meaning to....well....forever (same old same old!) to update on all the positive things (and boy there are so many!) that have been happening but hey I haven’t. I have just reminded myself that one of the reasons I started this blog (aside from helping others which is at the heart of everything I do) is for ME. I find it cathartic, to offload all the thoughts I have swirling around in my head. 

On that note I asked for a referral at Late Effects Clinic to Psychology in November. Still waiting....as with most services they are completely overloaded. I have no doubt I am experiencing PTSD in some form but thankfully I’m still able to recognise that and want to address it. Really who wouldn’t be given what I’ve faced over the last 28 years. 

I was just thinking about the ‘Facebook Lie’. It is and it isn’t. I tend to post about all the fun, positive things we’re doing and we’re LUCKY to do or is it that we make the most of opportunities? Probably? I decided this summer we’d use the unexpected small pay out from the Motor Insurers Bureau (I only wanted to keep my no claims!) from an uninsured drug dealer smashing the front off my car in January 2018 to do as many fab things as we can. I have yet again stared immortality square in the face and not being morbid, just realistic, none of us know how long we’ve got on this mortal coil eh?

That money could be swallowed up into our families expenses in an instant but we were presented with opportunities to visit friends abroad, meet family in Europe and London and host them all Chez Gilbert and boy are we going to enjoy it and make the most of it. Hey and the ‘advantage’ of a zero hours contract cannot be sniffed at!  Having the summer to hardly stress about childcare?! #alwaysfindthepositive

Today my cheerful and positive outlook is a little weary and dented. I’m not looking for sympathy just understanding and awareness. Offloading here (and not to a husband who understandably is also weary of the continued challenges we face) is therapeutic for me. Also maybe this will help people see I’m really not Wonderwoman personified, I have many of the same daily challenges as us all. Puking pets, household appliances breaking down, wondering and worrying about work. The reality is living with long term side effects of disability and cancer treatment (that which was required and that which wasn’t) can be draining. 

Reflecting on it, no week and still often a day doesn’t go by without one appointment or other for me or one the children. Ordering medications and sorting out everyones health challenges. On the whole it’s nothing major but it takes carefully organised logistics. Last week in Bulgaria I spent over an hour on the phone to Leeds Teaching Hospitals sorting various things out. In the end the lovely lady said she felt so bad and it must be so overwhelming that even though one of the issues needed to be dealt with by another department she was going to walk down there herself and sort it. Mostly I accept all this is ‘just life’ but on occasion I honestly feel like ‘I can’t be arsed’. 

This is breakfast everyday.....I won’t go into detail of every one but safe to say each is something that combats a depletion or damage from one treatment or another. I do lots of self help things and resent taking all this but then the guilt thing kicks in....what's a few tablets when I'm still alive? I can't take many natural remedies that I have previously found have helped as I'm 18 months into a clinical trial to try and prevent cancer recurrence, so really limited what I can take.

My body struggles due to the imbalances and overuse caused by the problems with the leg, hence constantly fire fighting with physio and exercises the hip, knee, ankle, elbow, shoulder and back problems on the left side in particular. Again not all are serious or difficult to 'fix' (some are) but it's WEARING. It stops me swimming and doing pilates, which conversely keep me sane and hopefully contribute to keeping the cancer at bay.

I absolutely HATE the rhetoric used to refer to cancer....the battling and fighting and ‘staying strong’ but hey I admit sometimes it really does feel like an uphill struggle. I want to put my energies into my family and friends, fundraising and helping those affected in similar ways but sometimes the energy ebbs away. 

I certainly won’t go into the gory details here but tomorrow it’s off to another emergency gynaecology appointment. Safe to say the after effects of going through 2 chemically induced 
menopause and dealing with now being peri menopausal again are physically and mentally challenging!! Carrying a small towel or flannel everywhere is necessary once again. I really do feel a sense of unfairness facing going through the whole shebang a third time. But what can you do? Have a moan...oh yes I do that sometimes too.....then just get on with it. People say ‘I don’t know how you do it’ or ‘I couldn’t do it’ but you could, you would, you literally have no choice. 

Sick to death of all the scaremongering - flying too much, drinking orange juice, being overweight blah blah gives you cancer. And some get it when they don’t drink or smoke and are slim and exercise loads. Snorting purΓ©ed kale standing on your head may ‘cure’ you but if anyone else mentions cannabis oil to me I might just scream. Do people not think if there was a mass treatment that was easy to get hold of and would ‘cure’ or save most people we’d know about it? They’d be using it? They WOULD NOT be giving some of the same chemo drugs they did 28 years ago if it was that simple. I’ll not go off on a rant nor am
I opening a big debate about it. Other than saying a young Mum diagnosed at the same time with the same breast cancer as me died recently as she was so convinced alternative treatments could save her. Unless you personally, not your Nan or Uncle or breast friend, have been there or stared these decisions in the face you simply can’t say what you’d do.

Survivor guilt is a tricky one too. Ive lost too many similar aged friends in the last few months to this harrowing disease. Shouldn’t I be making the most of every minute and ALWAYS being thankful? Well, you can’t, things get me down like they do everyone else. 

Anyway, after this offload and appreciating this cuppa I can face the rest of the day :)






Friday, 8 March 2019

International Women’s Day

Today is International Womens’ Day 2019. 

Whilst I believe we should celebrate our achievements every day, today especially is one for reflection. We make up almost half of the world’s population. England netballers shocked the hosts Australia in last year’s Commonwealth Games by beating them in the final and walking away with the title. We have only the 2nd British woman Prime Minister in history in office and Queen Elizabeth II is still on the throne aged 92 after a 67 year reign. The England Lionesses ⚽️ were triumphant in raising the #SheBelieves Cup and head into this summer’s FIFA World Cup as favourites. Watch this πŸ’—πŸ’ͺ🏻  https://youtu.be/whpJ19RJ4JY

Inequalities still exist for us in many respects but conversely we have made huge strides in various areas. I had the privilege to attend a Conference at work this morning where we were updated on research in various realms of women’s sport and coaching. One thing that struck me most is that equality is not literally a case of ‘women should have everything the same as men’. Actually women need an equal yet uniquely tailored approach to meet their needs and help them achieve their maximum potential.

We were told to think of one thing we are doing to make a difference or ‘rock the boat’ as opposed to being someone who merely ‘falls out of the boat’ #noimpact. I could name a few in my time! One thing I’m currently proud of is using my own education and expertise in physical activity and sport; to work with numerous people and agencies to influence education, policy and practice. For those men and women who have or have had cancer. Luckily if I do fall out of the boat I can swim well enough now not to need one! #boatrocker #ChannelSwimmer.

This post is dedicated to one woman who has inspired and influenced me greatly. Tragically, I delivered part of her eulogy earlier this week. It was heartbreaking, yet I felt immensely proud to know her. Although we KNOW her legacy, as an extraordinary physician will continue and undoubtedly save many more lives. Most importantly her influence on her children, family and friends will always live on, especially through beautiful rainbows, just as it did as we left the service 🌈 https://www.buzzfeed.com/patrickstrudwick/a-pioneering-doctor-who-helped-revolutionise-hiv-prevention
#bemoreMags #neverforgotten #IWD #internationalwomensday #girlpower #balanceforbetter #leedsbeckettuniversity #carnegieschoolofsport

Photo by Claire Sparrow πŸ’—

Tuesday, 26 February 2019

Yorkshire Choice Awards

Ha, that old adage....’It’s been a while...’

I feel very honoured to have even been nominated for awards in a couple of categories (thank you, you know who you are!)


I also feel a bit weird ‘asking for people to vote’ for me! I ALSO know a lot of people will be cross with me for not sharing this information and a link for people to be able to vote if they wish to.

For me it’s about making the most of the opportunities we are presented with. We don’t always recognise these at the time and some inevitably come out of adversity. That doesn’t mean I believe in any of the crap about ‘everything happens for a reason’ but I know for a fact I wouldn’t have had many of the opportunities I’ve had or met the people I’ve met had it not been for some very dark times. Nor does that mean that sometimes I don’t wish I had not been diagnosed with and treated for cancer...twice. No sane person would welcome this. I guess though it’s led me down more unconventional paths, which of course...frequently lead to different choices.

I think the main thing though is that it’s taught me to seize these opportunities whenever possible as we really don’t know what will happen, even in the near future. It’s taught me to be more thoughtful and think how the effects of some of life’s biggest challenges affect the lives of those on the receiving end and those around them. If I’m ever able to use my own experiences and the things I’ve learnt to ease things for others I will....every time.

The ones that spring to mind straight away are: going to Namibia with Raleigh International, setting up Tiny Signers 12 years ago, Swimming The pool equivalent Channel Swim then an actual Relay to raise money for Aspire.


So if you would like to vote please follow this link https://www.yorkshirechoiceawards.co.uk/votehere

You can vote in either or both categories:

The Kate Granger for Outstanding Contribution
Inspirational Individual

Thank you for your support as always!





Tuesday, 11 December 2018

Living my life

Tuesday wasn’t great if i’m honest, which I do try to be on here (despite always apologising for neglecting to do so for months on end!) 

Yes, I had a rare day not working; so got my winter tyres put on, walked the dog, did my first mainstream pilates class since my last operation, which was over 10 weeks ago, took Joe & a friend to McDonald’s and led our Beavers in Signing & Singing Christmas songs at Rawdon Lights Switch On. Having the opportunity to meet up with a lot of friends and got in the festive spirit πŸŽ…πŸ»πŸŽ„All very positive....

But the reality is I cried whilst I was walking the dog and sat on several walls. I desperately tried to ‘enjoy’ it. Despite the drizzly weather it was lovely to be out breathing the fresh air, enjoying the outdoors; the sound and sight of a beck rushing by and stumbling across these creatures!



I LOVE Christmas and the preparations and festivities but I could barely walk when I got back to the car. 

Despite how hard I tried I just felt increasingly frustrated by my restrictions. Problems with my prosthetic which, to be honest, I’ve pretty much ignored. I didn’t have the head space to deal with them whilst taking 10 weeks to heal from more surgery. 

It’s a vicious circle; I couldn’t swim in all that time...which is what gives me the capacity to ‘keep on keeping on’ despite all the crap. Since the chemo kindly helped my thyroid pack up (it may have done anyway given I have another autoimmune disease) I’m battling with my weight, as well as shedding the remainder gained whilst on treatment.

My other leg and foot are back to complaining vehemently with the overuse. This just makes me cross, I just want to ‘do’ but it’s making it worse. Fire fighting it with weekly physio and trying to get back to a level of exercise that will get certain muscles stronger but that hurts too grrrrrrrr and sometimes this is true...



I just don’t know how you learn to live with your restrictions? I know many have them, for a huge number of different reasons and a lot of people are worse off. People say you seem really well adjusted and accepting. No I don’t accept it, not at all. It’s unacceptable as it was completely and utterly unnecessary. I lost my leg 22 years ago and have done many many things in that time, it hasn’t stopped me but sometimes I actually HATE being like this. With a physical impairment that means because of the way our world & society and everything in it are organised I AM disabled by that. 

When I wear clothes (which I usually do of course! Don’t worry I’m not going to take up Skinny Dipping whilst Wild Swimming...I wouldn’t subject anyone to that!) you can’t see the patchwork quilt of scars, I live with that, I have no choice, I can hide it. I’m grateful, oh so very thankful to be still here despite the butchering. 


Will I ever learn to live with this? 

Saturday, 30 June 2018

On this day....

(Written on June 29th 2018)

I can’t quite believe the difference a year makes - that old clichΓ©. I know I keep saying it to people; it does however continue to remind me of how lucky I am to be so WELL. Believe me it’s take a lot of hard work to get to this point and to be honest, even greater effort mentally at times, I refer to it as ‘mind over matter’. And when I say ‘well’ I am...but it doesn’t mean that I don’t struggle with my residual limb, my remaining leg, my back, under active thyroid etc Some days it takes monumental effort to drag myself out of bed and put on a couple of body parts. I may even be just having a ‘can’t be arsed day’ that ANYONE can have. But I know that once I do get going I will feel better for it. Whether it’s teaching at the University, mentoring a student who is training to be a teacher, Signing in a nursery, walking the dog or swimming in the Lido.

On this day in 2017 I faced my 2nd surgery in a fortnight. To repair what had gone wrong after the mastectomy and reconstruction. I was unable to attend the funeral of my friend’s son and was still very very unwell still. Today a nursery manager who I’ve been teaching on a Signing Training Course told me her Mum’s been diagnosed with breast cancer and is currently undergoing treatment. She asked me advice and to explain more about what was happening. We looked at my photos (to show her you CAN come back from this).



I also know how life could be so very different. I saw a post from a school friend who had breast cancer several years ago and was successfully treated. She had written about how amazing she felt a year ago....then was diagnosed with a recurrence and is currently being treated. I hope this will show her a year from today will be very different again.

A dear friend who was also diagnosed and treated around about the same time (with a different type of cancer) has heartbreakingly now been referred to the palliative care team. 

A journalist who I have followed; as she was diagnosed and treated at a similar time to me, has been diagnosed with Secondary Breast Cancer i.e. it has spread to other parts of her body and she won’t survive to see her son grow up.

Life is precious and fragile and it’s course can literally be changed in a heartbeat. It’s a clichΓ© telling you live life to the full and appreciate it, but I truly mean it. Sometimes this will involve catching yourself and reminding yourself of this. I have to; when I get caught up in the minutiae of day-to-day life. 

I have been given this chance to make the most of whatever time I have left in this life and to make a difference. It doesn’t mean I don’t get angry or frustrated about things that are trivial in the grand scheme of things but as long as I can pull myself and appreciate the precious moments, that’s what matters. The sunset or rainbow that stops me in my tracks. Standing to watch and marvel as a deer crosses my path whilst walking the dog. To have the pleasure of leading an assembly for lots of young people who are interested and inquisitive. A little Spanish girl who interacts and joins in signing more than she has ever done in anything else at nursery.

I have my faults (my family could probably tell you lots of them!) I’m untidy and often late, as I’m trying to cram too many things into too short a space of time. What I do know though is that I definitely won’t need to put ‘I wish I’d spent more time enjoying life’ on my gravestone. I MAY need ‘I should have spent more time tidying up/washing/ironing/cleaning’ but we’ll cross that bridge when we come to it.

I’m sharing these photos with you to illustrate just how far you can come in a year. To those who are facing seemingly insurmountable problems, to not give up. It is possible for life to be good again; to manage ongoing difficulties with help of physios, medics, counsellors.....whoever you need. It may not be in a year or even two...but don’t give up hope or stop reminding yourself how resilient we can all be, even when it’s the last thing you believe.

I’m not ashamed of them (sorry if you’re squeamish though!) They ‘cheese grated’ the skin off my only thigh and to be honest it was one of the most painful things I have EVER been through; bleed profusely for weeks, took months to heal and made it really hard to walk.  The wounds healed eventually, scars are still there but will fade and it just makes me think that the body’s capacity to heal is phenomenal.

        1 week post graft                  2 weeks post graft            When stomach wound 
                                                                                                      seroma burst





Monday, 5 March 2018

The English Channel

You will probably re-read this post, as no doubt you will think it’s written either by an entirely different person from the last one or I have a split personality!

Armed with the knowledge that physical activity may help to me keep the cancer at bay, as well as being the sort of person who needs to something to work towards to stay motivated. I was presented with a once-in-a-lifetime opportunity that I couldn’t pass up.

In the Autumn of 2016, 20 years after my amputation,  I swam the equivalent of The English Channel in the pool to raise money for Aspire, the Spinal Injury Charity. I undertook this challenge to help get fit again after an ankle ligament reconstruction and the 5 months in a cast that followed. I was filmed by Calendar TV and one of the staff at Aspire saw the footage and approached me to be part of a Relay Team for Summer 2018. There would be an assessment day in November 2017. Great I thought then 2 weeks later our world caved in and I was diagnosed with stage III aggressive breast cancer.

As you know I then went to hell and back during the cancer treatment and couldn’t even get into a pool, mainly due to the various central lines I had poking out of my body during that time. So when Autumn 2017 came around I hadn’t even finished my radiotherapy and I was invited along to the Assessment day. I explained what had happened in the intervening period but was still encouraged to attend. They told me I didn’t have to do the timed swim but not only did I end up going but I did the swim (but didn’t want to know the time as I was, for good reason, totally unfit!).

I was so pleased a couple of weeks later when I was invited to join a team. Five complete strangers at the time, who, hopefully between us, will complete the 22 miles from Dover to Calais in August 2018. We have now met, and swum (in exceedingly cold water!) and been named ‘The Hammerhead Sharks’.



Many (should read, most) of you will think I’m crazy and yes maybe I am. Not only do I have problems with both legs but I’m going to be less than a year from finishing breast cancer treatment. But I’ll never know what I can achieve unless I try. I am of course going to badger you all for sponsorship! On which note please follow this link to learn more and do exactly that 😊 

It really is for a brilliant cause, to help those with spinal injuries get back to work, independent living or sport. Their strap line really caught my attention ‘From injury to independence’. I could really relate to it as I’ve had to battle my way back from a similar place on more than one occasion. Also the importance psychologically of doing so for the disabled person.



So training is well underway and roll on summer, at least the water will be a bit warmer!! I will continue to blog through the challenge so keep your eyes peeled. In fact read all about it in my dedicated blog www.mychannelchallenge.blogspot.com



Sunday, 4 March 2018

Living with the fear

Hilarious, I notice my last post was entitled ‘It’s been a while...’ well the same again really! So much to share and write about I almost don’t know where to start. This was me 12 months ago, it feels like yesterday.



I’ll start with the title of this post. Finishing active cancer treatment is strange. It’s not something that elicits euphoria, celebration or any such feelings like that. We go back to the things I’ve blogged about before; people don’t really know what to say or how to react. Instead of keeping stum they end up saying something that winds you up. Then you feel guilty for feeling angry or upset because you know they mean well and are just trying to be positive. The funny thing is you don’t feel so positive. Relieved, yes, not to have to go to hospital daily, turning up not knowing whether you’ll be in and out or sitting there for three hours. But certainly not ‘really happy’ or ‘ecstatic’ as some asked me.

You actually felt quite abandoned. I never knew what the next steps were i.e. how often I had to go back, what sort of follow-up I’d be offered, what to do if I was worried (believe me every pain, twinge, ache or unusual mark can send you into a tail spin) or what my future would look like. People started to ask so I had to ask.

Then you also feel guilty for NOT feeling ecstatic; you actually feel frightened and vulnerable and paranoid. Surely the point is you are ALIVE and not dead? Should you not be thankful and celebrating? You’ve been literally chopped up, pumped full of poison and zapped by radioactive rays. All of which have hopefully obliterated the tumour cells and any rogue stray cells but have also been catastrophic physically. Many of the bodily systems that worked OK have stopped functioning. No thyroid function, depleted Vitamin D, chemo induced menopause; to mention but a few. The body is in shock and will be for some time to come but psychologically you’re also exhausted and
I honestly felt like they had said ‘Ring the bell and now piss off’.




Looking at it logically, the sheer number of people receiving chemotherapy on a daily basis just at the day ward at St James’ Hospital numbered 70+. They don’t have time with overworked staff and under resourced services to give a toss about you once you’re ‘done’. Sadly though this is the time when you are most in need of that support and reassurance. Even though the daily grind of all the visits, appointments, waiting and uncertainty is exhausting, it’s like a comfort blanket as you have people to ask and question and rely on to support you. Those around you too then assume you’re OK and ‘better’ especially as physically your appearance starts to improve and you may even have hair!

Everything seems to have to be driven by the patient, but you are no longer a patient but someone who has been through cancer treatment. Does that mean you’re ‘cured’ or ‘in remission’? A question others ask and you ask yourself. The simple answer is ‘I don’t know’; I can only presume so. But those things are never said and any support you then need, counselling for example, is available but all has to be driven by you.

'You got some leaflets'.... I was told....When? During those early days and weeks when we were shell-shocked and like a pair of rabbits in headlights? Sean lying awake at night, wondering how he'll manage. Having read of how young children who have lost parents at a young age are irrevocably affected. Willing me to live until Joe is a teenager at least and the others are in their 20s so they can cope.

Thankfully I got to know a friend of a friend who works in the Cancer Support Services at the hospital, who I am now proud to also call a friend. Someone who has been an absolute rock for me and led me in the directions of the services I need. But what about those who don’t have this, or who aren’t eloquent or able to articulate what they need, what happens to them? And by the way feel free to replace the aforementioned attributes with talkative, stroppy and bloody minded!!

I attended a ‘Live with Cancer’ Day in November at Harrogate Convention Centre, about a month after finishing treatment which was very nerve wracking as I went alone. It opened many new doors for me and was very informative as to how we can help reduce the chances of recurrence. I got back into Pilates and was introduced to the wonderful LEAR fitness in Harrogate and their PINC classes...at the time for other women who've been treated for breast cancer (now more classes available for people recovering from other cancers too).

I listened to numerous people speak. Two of the whom really struck a chord with me but for very different reasons. The first was a guy called Andrew Graystone who has recurrence of prostate cancer and the second the Lead Cancer Nurse for Leeds Teaching Hospitals Trust. The Recovery Package at Leeds, as they're calling it sounds amazing and all encompassing but only exists in principle sadly right now, I am hoping this will eventually change. Hopefully I'll never know as I'm not planning more treatment anytime soon! Sitting there listening to the presentation they could be talking about any other hospital other than the one I had just been treated at. You can view the slides here.

The treatment and staff who administer the treatment are amazing and so supportive giving you as much time as you need and they're fast, so fast; no waiting hardly for scans, results, pre-ops or surgery. It's the after care, or lack of that's lacking. How are you supposed know whether a pain is worrying, who do you ask and how long do you wait until it really could be a problem? These are the things you need guidance on. And yes I have fed back about small realistic improvements they can make that don't cost the earth but would make a huge difference to patients. The main issue, as with most big organisations, is communication or lack of. Mixed messages and sometimes too many 'fingers in the pie'.

I could really relate to Andrew, here are some quotes from his presentation that I could REALLY relate to:

"I didn't feel like a victim and I didn't choose to be a hero"

"(cancer) is like an unwelcome visitor that (rudely or abruptly) interrupts every conversation"

"I don't want to fight cancer I want to live well with it and live better without it"

"I'm not defined by my cancer but I just want to learn to live with it and eventually kiss my cancer goodbye."

You can listen to one of him speak here, the first time he had cancer

Oh yes the F word, not the one you think I might add, but FIGHT. No other illness is ever referred to in this way other than cancer.  People don't say when you've had a heart attack or pneumonia 'Oh you must keep fighting', so why? I think the reason it annoys me the most is that if someone dies of cancer despite, whatever the circumstances; whether they've tried everything possible or just decided not to put themselves through the gruelling treatment and feel so ill from that, only to gain a bit more time. That the implication is that they didn't try or 'fight' hard enough and therefore failed, it's nothing to do with that.

Another very interesting area of research I was introduced to at Harrogate was the role regular physical activity can play in the prevention of cancer. I am the type of person who is proactive and knowing that my type of cancer has about a 35% chance of recurring in the first 3 years I wanted to do everything I can to try and prevent this.

Thankfully as my specialist area is physical education I didn't need much convincing to exercise regularly! Despite my knowledge I was absolutely amazed to find out that regular physical activity (now don't panic, I'm only talking about National Guidelines - 150 minutes of moderate physical activity per week, even in 10 minute bouts) can help reduce the risk of not only recurrence by 40-60% (yes you read that correctly!) but actually getting cancer in the first place, especially breast and colon cancer. Unbelievable eh? And the evidence is conclusive. Read more about it here. And if you want to read some of the research itself click here

Not surprisingly other factors include all the other aspects that we all should adopt but struggle to stick to! Healthy diet and very little alcohol, in actual fact NO alcohol. Again I don't know why I was at all surprised to hear this but I listened to a presentation informing us all bottles of alcohol will soon carry the warning label 'Alcohol causes cancer'.

So despite adopting ALL of these things, which I have, as well as going on a clinical trial using regular aspirin to try to help reduce the risk of recurrence there is always an underlying anxiety. Will the cancer come back? How will I know? Already since finishing active treatment last Autumn I have had 3 'scares'. The first being the week I finished radiotherapy and finding some lumps in the reconstruction area. Being told after Ultrasound that I probably needed a biopsy. You're suddenly plunged back into that world of head spinning questions and what ifs? Thankfully it turned out to be necrosis from the reconstruction.

Then before Christmas my blood test results (liver function, sex hormones, thyroid, blood sugar etc) were all so awry I had an emergency appointment with oncology the following day and the GP had me in a total panic suggesting I needed a head CT as something may be going on 'higher up' I was non-plussed, then to be told it was a brain scan. Only a month ago my persistently high liver function tests had them sending me for a bone scan, when I questioned what that had to do with bones I was told it was an indication of disease i.e. cancer in the bones. Another nerve wracking wait for the scan and the results; it was clear. Thankfully. However much you tell yourself it's great they're so on the ball and I'm high on the radar. Or another of your consultants says 'given your history no one wants to be the one to make a mistake'. It's hard, really hard to travel this roller coaster ride, thinking at any time you may be plunged right back into that world of uncertainty and agony.

How do you live with 'The Fear' as I call it? I don't know. I keep asking myself and other people how? No one has an answer, even though they may have been or are going through it themselves. I guess it may get easier with time, I'm not sure and will have to see.

I'm not worried for myself if it does come back, I know I can survive the worst treatment, butchering and the most terrible agony anyone could ever go through and rebuild my life afterwards. I'm scared for my family, especially my husband and children. Just when they are beginning to come out the other side of this dreadful nightmare. I dream about it coming back and having to hide it from them.

Who knows what the future holds? It's probably a good idea that we don't know. If nothing else my experience is a reminder to enjoy the moment and live for today.