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 :)

Unusual

I will reveal the reason for the title of this post shortly but firstly I would like to apologise for my 'blog neglect' these past few weeks. The truth is I have been far too busy! Sean started his new job which has him travelling a lot, not only the commute to Teeside but to sites far and wide. We have been spoilt with his local work this past decade and this new era is going to take some getting used to for all of us. We are though, thankful he has a job unlike some we know.

I also experienced the trip of a lifetime to New York, with my school friends of nearly 30 years. It was to celebrate the year all 5 of us are all turning 40. It was amazing, all we'd hoped for and more! As usual my leg didn't hold me back and we did everything from cycling around Central Park to cocktails in the revolving restaurant 'The View' at the top of the Marriott. I did use my crutches a lot which enabled me to walk further.

There have also been lots of fun days out during the school Easter Holidays and parties to attend, as well as quality time spent with friends. Sean's Mum has also been in hospital for over a fortnight whilst they operated to treat her for a 2nd cancer recurrence. We are desperately hoping this drastic and life changing surgery will put pay to it once and for all. Thankfully she's now recuperating at home.

No improvement with our little man's sleeping which does prove draining day in day out. Hence the nocturnal waking or should I say hours of 'work'.

I have been continuing to trial the running blade https://www.ossur.com/?PageID=16652 You won't be surprised to hear I totally overdid it in the first 3 weeks! So after hardly being able to walk after one particular training session I took some enforced rest and curbed my enthusiasm and am now back at it with less 'vengeance' shall we say! It feels a little easier now, well some of the time and I think I trust it a little more and am perfecting my technique.

Last week I took part in the annual Swimathon to raise money for Marie Curie Cancer Care. Together with my friend Adam and my 11 year old, Hope, we did a Team 5k. It was really enjoyable and of course all for a good cause if anyone is interested in sponsoring us please visit the following link http://my.artezglobal.com/TeamPage.aspx?teamID=54782&langPref=en-CA&Referrer=http%3a%2f%2fwww.swimathon.org%2fpage.php%3fpage%3dsponsor_a_swimmer You can see our photo at the finish below.

Next on the agenda is the 1mile outdoor swim at Salford Keys, Manchester http://www.greatswim.org/events/great-manchester-swim/default.aspx We're mad you no doubt think, but hey, you know me I like a challenge!

I can't believe my 'baby' turns 2 on Saturday. We're all looking forward to the celebrations.

Now, back to 'unusual'. I went for my annual routine eye test a couple of weeks ago. My prescription hasn't changed for years and I still remain very short sighted but manage fine with my glasses or lenses. What I wasn't expecting to hear was I am developing cataracts in both eyes. This currently only affects my night vision but this could change at any time. This it seems is the worrying and frustrating thing. They just don't know, things could deteriorate quickly or continue slowly or even remain static. Worst case scenario is I could require cataract surgery in the near future. I am obviously hoping this doesn't happen but will just have to wait and see (sorry ;-).

I was very taken aback by this latest news and understandably not best pleased. I wasn't surprised though to hear the optician say 'you're very unusual' and that it was unusual to see this happening to someone of 40. Well excuse my French but no shit Sherlock!! And quite frankly I am fed up of being 'unusual' and interesting to medics. I want to be run of the mill, boring, USUAL.

It really felt like 'something else' to add to the list of ailments and parts of me that are failing. As if legs, kidneys, hearing etc are not enough, now my eyes!!! Maybe time for the scapheap?! I REALLY miss having my Mum at times like this. I would be straight on the phone to her and it made me angry that this wasn't possible.

But a couple of weeks on I am more accepting and at the end of the day what will be will be. Onwards and upwards as usual :)

The difference a week makes

A week of real highs and lows. I guess this is what LIFE is actually like, although our peaks and troughs seem to be a little steeper at times than others! I saw an acronym the other day - how true - L. Life I. Isn't F. Flipping E. Easy!

Last week I couldn't even wear my prosthesis for three of the days and this week I have been running. Yes RUNNING!

The unpredictability of my situation does get me down, understandably. Swinging from one situation to another one which is so far removed. Feeling so restricted without my leg on when I am used to wearing it. But this week was a GOOD one.

Years ago I went to a running clinic at Bradford University with two American Paralympic athletes. It was great to learn the basic principles again and felt amazing to actually get both feet off the floor at the same time- even momentarily! But the leg I had at the time wasn't really suitable for running but I did have a little jog :)

Not long after I was nominated and selected to carry The Queens Jubilee Baton in the relay to the opening ceremony of the Manchester 2002 Commonwealth Games. I practised religiously in secret in our driveway and managed to surprise family and friends and my police escort by breaking into a jog with the baton.

Not having the proper hardware, so to speak, made it impractical really to continue with this type of activity. So it has not been in the agenda in a long while.

During a conversation with my prosthetist www.dorset-ortho.com about his work at the Paralympics this summer I asked him if he thought I'd be able to run with a blade. He said he didn't see why not. Yikes! We arranged a trial with Ossur www.ossur.co.uk/prosthetics/feet/Flex-Run and I went to Burton upon Trent to have it fitted.

It was with trepidation we drove to a nearby track. I really doubted I would remember what to do but at the same time was determined to make it around the track....no matter what.

I was also nervous about how it would feel. Not so much physically but on occasion I have pushed myself to do something I did before because I have been determined that the loss of my leg would not hold me back. But it has felt so far from how it did before the amputation that I have almost felt distraught and soooo disappointed.

Thankfully despite being hard work, physically it felt GOOD :) not a let down which was such a relief. With some adjustments at the end it felt even better, with only room for improvement.

As our gym has a track it is realistic to run regularly. So I did, the following day! http://www.youtube.com/watch?v=3VkwN0hezIg

It doesn't feel 'natural', the only thing I can liken it to is learning to drive. Trying to remember and put together a number of instructions all at once. In this case; drive your residual limb forward as hard as possible, increase your stride length, relax your upper body and use your arms, think about your body position, and so on arghhhhhhh! But like driving, it will get easier with practice, in fact it was easier and better even on Day 2 of Blade runner! I was more confident and less worried about ending up on my face!

Today is Mothers Day. I am so lucky to be a Mother AND to have three lovely children. I have had five pregnancies and I do still wonder what those 'other' children would have turned out like especially when their 'due date' comes around.

Going through the IVF because of the worry of a premature menopause and ovarian damage, due to the strong chemotherapy was tough. But I knew more than anything that I wanted to be a Mother. If that meant not being able to have a child of our own and adopting, so be it.

Luck was on our side though for once and despite having the 'insurance' of the stored embryos we managed to conceive naturally. Although it was hard not to think the world was against me, finding out, on what should be such a joyous occasion - the 3 month ultrasound scan - that our baby had died.

When our family was complete and having battled with the hospital to donate our embryos, which against the odds resulted in a successful pregnancy. I really felt devastated to learn the little boy who was carried to term, was stillborn only a few weeks before my precious Joe was born.

Being a Mother and daughter brings with it such highs and lows. Right now I can hear my nearly two year old calling for 'Mr Tumble' on the TV :) that little voice brings joy to our day!

Talking of joy, it brings me to my Mum, on this Mother's Day, the first since her passing. A friend of my father's in an email of condolence was spot on when he described her 'Joy by name joy by nature'.

She taught me so much, not just important life skills but the way to treat others. Her motto, instilled by her own Mother whilst reading 'The Waterbabies', was 'Mrs Do-as-you-would-be-done-by' . They both stuck to this throughout their lives and I hope even in a small way I can continue this legacy.

I find it painful today to think of her and not be able to be with her. An actual physical pain like a punch in the chest, I have felt this numerous times since July 18th 2012 when heaven gained a very special angel.

I know people encourage you to celebrate the life of the person you have lost, focusing on the good memories. Today is just not one of those days; her birthday was, her funeral was but for some reason today I cannot bring myself to visit the cemetery and stare down at a mound of earth.

I hope the good memories will overtake in time, as i have been told they will, but right now I find it hard to rid my over active mind of the vivid memories of those final weeks.

The pain, suffering and injustice of it all. The warmth of her final breaths on my palm through the disconnected ventilation tube. Robbed of dignity even in death. This all led me to visit her in the chapel of rest after all the formalities were over. It was the best decision I could have made. I only needed to glance at her to know that her dignity was restored and she was at peace.

Always in my thoughts beautiful lady, RIP Mum xxx

Legless

Well quite honestly there are some days that are just not worth getting up for! And today was one of them. I have had persistent small sores at the top of my residual limb for a while now. They obviously get worse the more I wear my prosthesis so it's a vicious circle. The tissue viability nurse stocked me up a while back with an impressive array of dressings. It's a bit of trial and error as some don't stick enough so are dislodged with practically the first step, whilst others are so adhesive frustratingly they lift the 'good skin' off around the original lesions = worse situation :( this week I totalled 4 dressings at once but have had to give in to the 'legless' status by yesterday as it's just too uncomfortable to put my weight on the leg. The pain from one if them is disproportionate to the size of it and I suspect I will eventually have to succumb to seeing someone about it.

I can usually live quite happily being an amputee but if I'm honest sometimes I HATE it. I hate going out without my leg on and trying not to look at the people staring at me. I hate the pain in my elbow being on the crutches and in my other knee from whizzing about at home in my wheelchair. I hate not being able to pick my son up when he puts his arms up to me when he doesn't understand. Although he seems to be starting to grasp it (he'll be 2 in May) as today he was looking all round my wheelchair and said 'shoe gone' and signed 'gone'! I hate the fact that my daughter said 'yeah we can't do the things other families can do'. I never want them to feel I hold them back. I hate that when I went to their school today and my son's class ran past they stopped in their tracks open mouthed and one little girl said 'eeeewwwww'. Yes they're children, but it still hurts....... I hate the unpredictability of the situation, that one day I can go in the gym and the leg's ok and the next I can be so restricted because I can't wear it. I hate to catch sight of myself in a mirror or shop window when I'm not wearing it. It doesn't do much for the body image! I hate that it makes me a nervous person and takes my confidence away.

So maybe I don't help myself by being on the go a lot and wearing the prosthesis long hours but hey there's so much to do! And I'm really not one to sit around. So that's it, rant over. I have had my moment wallowing in self pity. Of 'why me?' Of 'it's not fair!' It will pass but I am under no illusion that this is the last time I will have to leave my leg off or that i will feel this way.

I used to feel guilty that I wasn't 'over it' or hadn't 'come to terms with it' but now I try not to feel that guilt because I honestly think at times, for example every spring bank holiday when I can't jump in the waves at Whistling Sands with the children. That I will grieve all over again and shed a little tear. And hey, that's ok.

I don't mind the legless jokes ie the alcohol fuelled ones, or someone saying 'he didn't have a leg to stand on' anyone who knows me knows I would take these in context and laugh along where appropriate. I don't want people treading on egg shells around me but it is nice if people realise the reality is it's bloody hard sometimes.

If it hadn't been for meeting Adam to kill another mile in the pool tonight I would definately have pulled the duvet over my head and written today off!