Heart Failure

I have always found writing cathartic and that’s why I’ve turned to it again, due to some unwelcome news that has been delivered recently. 

It’s taking me a while to get my head around it, not surprisingly I guess. But also due to the fact that I haven’t had much information yet! 

Yet again, as seems to be ‘the norm’ these days, trying to navigate one’s way around a broken system (whose main issue it seems is poor communication - quelle surprise!) is proving tricky and time consuming.

I’ve always experienced this and sadly it appears the only way to get anything ‘done’ is by doing it yourself! Not pessimistic just realistic. It’s the only way to get answers, find some solutions and treatment and in many ways to help yourself. 

Sadly, with an evermore broken NHS system it becomes more and more difficult to get the answers and you have to become self-reliant.

I have had numerous worsening symptoms this year but have managed them as best I can, explaining them away for other reasons; such as menopause, exertion from wearing my prosthetic etc I’ve been experiencing really horrendous dripping sweats, even on minimal exertion, some breathlessness, unexplained dizziness and a racing heart. Even chest pain, which I thought was from the mastectomy and reconstruction, scar tissue etc

Due to the surgery required, after I developed fast growing cataracts (posterior sub-capsular cataracts) following steroid treatment during chemo, I have had a further complication and need even more eye surgery. Anyway, during the pre assessment for that I had an abnormal ECG. As I knew heart issues could be a consequence of being treated with so many cardio-toxic cancer drugs I contacted the Late Effects Clinic straight away for another appointment. 

To cut a very long story short I was referred to Cardiology and a consultant ordered blood tests (BNP blood test) and a heart scan. Very, very sadly, said Cardiologist was killed last month by being knocked off his bike by a van driver ☹️

Anyway blood tests came back indicating my heart was not pumping sufficiently. The GP referred me to heart failure clinic and my scan was brought forwards. 

At the scan I knew when the sonographer got a colleague that it maybe was not good news. I was told I needed to be seen by a doctor and start treatment. Which I quickly was (the on-call Cardiologist) and he explained to me that my ejection fraction was 30-35 and ‘normal’ is 50-80. That the symptoms - sweats, dizziness etc are down to this and basically my heart function (Left Ventricle pumping oxygenated blood via the aorta to the body) is in the severe range. 

Also I have Left bundle branch blockage, which was picked up on the ECG and ties in with the heart problems from past cancer treatment. 

Thankfully I did not need to be admitted as the outpatient pharmacy was open until 9pm and I started medication that day. I was told even urgent referrals to heart failure clinic were taking up to 6 weeks. Despite Late Effects Clinic writing to my GP it was proving impossible to get an  appointment with him even for a blood pressure check! So I turned to Amazon and ordered a monitor!

The frustration and misinformation being given over the phone and sent by the hospital has reached another level of incompetence of course. I received the letter below, actually in the same post as the one outlining the details of my diagnosis and treatment🤷‍♀️ 

Understanding what this type of heart failure is and means is important to me. I’m not one to bury my head in the sand and I’ve always needed to know what’s what. Once again  Amazon has been more reliable than the NHS sadly, at this point, with the purchase of the blood pressure monitor and this book! 

There are two types of heart failure. With reduced ejection fraction (HFrEF) and heart failure with preserved ejection fraction (HFpEF). As the heart is a muscle it’s how efficiently it works ie pumps and this isn’t anything to do with  fitness or training, as I’ve come to realise. It can be to do with damage by toxic drugs and radiation. A little bit of a basic biology lesson next, so here goes. The deoxygenated blood enters the heart on the right side , then leaves for the lungs to become oxygenated and re-enters the heart on the left side, then it is pumped to the rest of the body, via the main artery called the aorta. So if the heart muscle is weak for any reason and can’t contract properly and push that blood through, as well as it should be then less than 40 is considered to be heart failure. As I mentioned I found out mine is about 30 to 35 so possibly about half of what it should be. This now explains all the severe sweats, dizziness and what I realise now is breathlessness. I just thought I couldn't swim as well and needed to improve my fitness!

Experiencing symptoms increasingly over the last few months, that I’ve been explaining away for other reasons, such as Menopause and struggling with my leg because it's not fitting properly, being more unfit and so on. Apparently this is not unusual for women of my age because we always find an explanation and trying and find ways to manage.

I do feel let down again (again!) not getting the GP support that I’ve been seeking, having to be my own case manager yet again and then even after diagnosis potentially not getting an appointment in Heart Failure clinic for up to 6 weeks, because even urgent referrals are taking this long.

However with medication, the symptoms improved dramatically over the coming days and the dizziness almost disappeared, which was amazing and very welcome. Also, it's positive to know the ejection fraction can actually improve with the meds so fingers crossed 🤞

Then nearly 2 weeks after starting treatment the symptoms started to creep back and by Sunday the dizziness was back with a vengeance :-/ Having been told it was luck more than anything else that I hadn’t had an ‘episode’ by now. I came home from an outing with a fast heart rate, sweating, chest pain etc and my husband called an ambulance. 

Thankfully I was not having a heart attack as was feared. They suspect that as well as all this I may have a virus which has exacerbated the symptoms. We were told to contact cardiology again today and hopefully in conjunction with the staff at the GP Practice something will be done and I'll be seen #dontholdyourbreathvicki

It’s obviously very disappointing and not what you want to hear. I thought it was a bullet I had dodged after all this time, from the raft of side effects issues from treatment. Sadly not! I've ticked rather a lot off the list! 🤔I guess though, being treated for 2 types of cancer, having lots of different types of chemo as well as left chest radiotherapy it shouldn't be a surprise. I was aware that it can happen many years after treatment.

Also, understandably there’s always that in the back of your mind about the reason I'm in this situation. Basically because the NHS wrongly diagnosed me in the first place and most, if not all, of the treatment and therefore side effects were unnecessary. 

I do think that the PR people could do a better job than calling it heart failure clinic and heart failure nurse, as it is quite scary! I prefer to think of it heart care clinic or heart maximisation nurse ha. 

However, as I often say, you can’t turn the clock back, you can’t change it. It is what it is and in the words of Yazz ‘the only way is up!’. We have to live what life we have left to the full. Which I have every intention of doing once I’m allowed to move from the house again 😄

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 puréed 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 :)

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 💗💪🏻  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 💗

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!

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 🎅🏻🎄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? 

On this day....

(Written on June 29th 2018)

I can’t quite believe the difference a year makes - that old cliché. 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 cliché 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

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