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I am 44 years old, Married to Sean for 19 years and have 3 lovely children Hope is 14, Jack is 10 and Joe is 5.

Sunday, 29 January 2017

The Only Way is Up

In the words of Yazz and the Plastic Population (yes it'll bring back memories for many of us 90s teenagers!) That is the mantra for this weekend. Sung many times whilst blasting out on 12" and LP, then CD and now of course via many other means not least YouTube https://youtu.be/hOMvs_1UFCk

Whilst I find writing this blog cathartic and it being a good way to keep everyone updated, it is also an opportunity to give people a true snapshot of what's it's really like to live with a cancer diagnosis and for this week the fall out from the treatment. Maybe it'll help others, as they'll know they're not alone in their feelings, experiences or needs.

Not only do we know that cancer will affect us differently as individuals but so will the drugs. Those to treat the cancer and those to try and counteract the effects aforementioned drugs....it's a minefield. So despite both having breast cancer and the same chemotherapy drugs, my Chemo Buddie Sally www.onelegoneboob.wordpress.com and I are suffering (and I have never used this word lightly or inappropriately but it is MOST apt now) the fall out now. Different parts of our bodies are being affected. She has a hideous sore throat. I don't. Despite me never wanting her to go through this EVER again I do feel it so helpful that she understands the score exactly. We can just 'be' with each other, whether it's good or bad. 

It's interesting, because despite both of us going through it before, you do forget. Not the sheer intensity of the experience, nor the feelings at the time of it being never-ending. But the specifics; for example; which day was the worst following chemo? The sheer amount of tablets to take day in day out and MUCH more. The memories had even faded as to how absolutely RUBBISH you end up feeling. I was swiftly reminded of this on Friday evening whilst sprawled on the bathroom floor not knowing whether to sit on the loo or stick my head down it. It all came flooding back. 

I know Sal won't mind me sharing this text I received from her yesterday "I'm absolutely shattered, still in PJs and cannot get off sofa. Throat is red raw hence the codeine. Achey bones. Brain fog. Had forgotten how awful this is"

Another legend who helped remind me yesterday of some specifics from 25 years ago was Ainsley. We have been friends for 37 years, since Primary School. Her and her 'Team' of Fiona, Rachel and Esther, quite simply I believe, kept me alive during my treatments in 1992 and 1993, whilst I was receiving them in Birmingham, where they were studying at University. 

I spent many days as an inpatient and there wasn't a day when one of them didn't come. Some days they came twice and Ainsley virtually never missed a day! She became an expert at sticking up the 10 000 cards that arrived (and moving them every weekend when they shut half the ward down!) not to mention fetching and disposing of grey bowls - sick ones and bed pans. Quite literally the nurses didn't have enough time to do this and there would have be MANY more spillages and accidents without #TeamVicki. They also became experts at programming the drips (well pushing numerous buttons until they stopped bleeping!). None of this is an exaggeration, all will and can confirm and those like Dad, who witnessed it too and also did the same. I'm convinced him and Mum couldn't have left me for a minute if it wasn't for #TeamVicki. Whereas it enabled them to go back to the Wirral at times to try and create some semblance of normality for my 15 year old brother in his GCSE years and to go to work and do ordinary things like sleep in their own beds and just buy and cook food. 

Ainsley was straight on the text yesterday morning reminding me (I know she won't mind me sharing) 

"Hey Vic, hang in there xxx Remember it being horrific a few days in but it does pass so hold onto that. Thinking of u lots xxx"

"Memories do fade, but you've always been stronger than u know. U kept yourself going & we just helped out - u can do this again. I always remember it being really hard on the 3rd day after any of ur chemo treatments so guess it's just part of the cycle. U were always much better the following day so today will hopefully be a bit easier. Hang in there, u can do this xxx"

I just remember the whole 6 months as a blur of constant vomiting, nausea and other symptoms. I wasn't alone then and I'm not now but the reminders do help. As a friend said yesterday when I was telling her about this exchange she said "We all need an Ainsley in our lives." We sure do!

One of the chemotherapy drugs Docetaxel is renowned for causing bone and joint pains. In order to try and stop your white blood cell count dropping too low post chemo you have 5 days of G-CSF injections to try and counteract this
http://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html 
Thankfully another friend, Nicola, who is a nurse has been a star and coming Daily to do this. She has seen me from Day 1 quite chirpy having been to work, to being on the couch and today in bed. We will recognise this cycle next time I have no doubt. Having someone do these important tasks for you without fuss and doing so with good grace is absolutely invaluable. 

I haven't managed to get on top of the bone pain very well (stupidly trying to avoid the codeine for the first 2 days!) then being so sick I couldn't keep meds down. I won't make that mistake again! No medals for bravery in this situation!! 

Nor was the nausea and vomiting kept in check, as I didn't have what I needed at home. When a medic suggests going into hospital, as happened last year with my ankle, and it feels a relief, you know the time's right to do as you're told!

I was correct again and Hickman is proving my new best mate! Bloods from and fluids and drugs into him were easy. Had injections in both arms and oral drugs too. I'm thankful that we have the 24hr service where they'll throw everything they have at you to help get on top of things. Usual niggles with delays, paperwork, nothing gf in sight and pharmacy but my Sister in Law kept them in check and on track, tip top treatment yet again Chez Bexley. Shame it was 8 hours on a trolley but makes me appreciate my big comfy bed all the more :-) 

The fabulous meals, gifts, flowers, taxiing and sleep overs, ginger tea and various other supplies are still flooding in and we couldn't be more appreciative or grateful. It REALLY is making life easier and more manageable for all of us. 

After a shocking 48 hours I now feel better prepared to deal with the fall out from Cycle 2. It won't be easier, it may even be worse but forewarned is forearmed. I now have 3 different lots of anti sickness meds in my possession which I can space out through the day and night after I finish treatment next time. 

I have hit rock bottom and the only way from onwards from here is to begin the ascent. 







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Thursday, 26 January 2017

Firsts....

Monday 23rd January was the first day of my lectureship in Physical Education and Sports Pedagogy at Leeds Beckett University.

Tuesday 24th January was the first day of my chemotherapy treatment for aggressive locally advanced triple negative breast cancer.

Sooooo you could say not only a week of firsts but pretty big ones! 

On Monday it was lovely to just be 'normal' to go to work and sort out timetables, chat to colleagues and do a research interview. It kept me busy with less time to think about what was to come. After work I collected all three children, took the boys to the barbers and had a regular hectic Gilbert evening! 

I have no idea really how you prepare yourself for chemo anyway? What was lovely was, on my return, to find a package from someone, ironically who has recently become a good friend....through breast cancer. Not mine, hers. 

Having previously been through chemo myself and experienced how hard it was I wanted to help. She called them Care Packages...on chemo days....food to feed the family, comfort food and treats and distractions like magazines or DVDs. I now find myself on the receiving end of the self same deliveries and it really does mean so much....I can't put it into words. 

But the package that this particular friend left was full of things I just hadn't known or thought about. A spray bottle to wet my hair before the cold cap, gentle conditioner and a comb. All these things listed here in fact 😀 (Can't figure out how to add pics yet oops!)

Chemo day dawned with the all too familiar recent lack of sleep. But we were up and at it; picking up from diving, dropping at Joe at before-school care, Hope at school and Jack at a friend's...all by 8.30am Then my Bestie, Lorna, arrived, as she had done 25 years earlier, to support me through another hideous diagnosis and treatment for cancer.  I don't really think either of us can believe that this is really happening. 

She duly drove me to hospital, taken aback by the awful Leeds traffic! 

I can't explain how wonderful the staff are at St James' Hospital. Nothing is too much trouble, they never rush you and are always kind and caring. A REAL refreshing change in the current climate where staff and services are completely overstretched and literally there are no empty beds to be found! 

We experienced this when I was having urgent surgery on January 6th. On arrival at 7am on the ward we were told my consultant's list had been cancelled but she had fought to get two of us back on. Another consultant's list had been completely cancelled and patients were sent home one by one. Not because there was no theatre space or surgeons, just no beds. 

And I wasn't disappointed on Tuesday. Firstly I was lucky enough to see some friendly faces straight away. One of the Mum's from the Coeliac Group I help run is a nurse on Ward 80 and was the first welcoming face to greet us. She had amazingly arranged for me and my chemo buddy Sally to sit side by side. Sally's husband Pete kept us amused disappearing to cock up his shopping visits! Nappy sacks instead of wipes and salads and no forks!! 

Seriously though, it made the whole thing less scary. More calm, lovely nurses attended to us and offered tea and sandwiches (sadly not gluten free! Not had much success on that front so far!) 

Whoever said to me the Hickman Line I'd had inserted last week would become 'my new best friend' couldn't have been closer to the truth. No needles pour moi! Psychologically that made a difference. The Cold Cap was exactly that, freezing in fact, -5 degrees. And quite frankly almost unbearable at first. The strap was so tight, the 'brain freeze' agonising. It started a pounding headache and even stopped me talking for a good while!! It has been found to work for about 50% of users to retain about 50% of their hair. I have decided to see how much I lose before my next round as to whether I'll subject myself to that torture again! It really is the least of my worries in the whole scheme of things. 

I didn't feel anything with all the drugs going in and was glad to get the cap off (only when it had been disconnected a good while were they able to remove it, when the ice that had formed had melted!) I was glad of my new cotton beanie to help warm my head up afterwards! 

I was of course lulled into a false sense of security that I merely felt 'ropey' on the day after. I actually managed to go to a 3 hour meeting at work. Which was great, again, not thinking of cancer just research and future plans and see colleagues. 

Dealing last night and today with the familiar symptoms has been tough. Overwhelming nausea, diarrhoea and excruciating joint pains (especially in the joints that I've had problems with in recent years - hip, ankle and elbow) is not pleasant. The only hope and way to bear it is the hope then that it's doing it's job, destroying those bad cells that will see me lose my left breast, maybe all the lymph nodes under my left arm BUT I hope enable me to live to see my children grow up. Which right now, in my darker moments, is my biggest fear. This is the reality of cancer. 


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Sunday, 22 January 2017

Welcome to the reality of 2017

Well for once (I know you won't believe it ;-) I really am lost for words and don't quite know where to start.

These are the words that I have heard numerous times in recent days and weeks. That is since our world as we knew it began to fall apart just before Christmas. Words which I never thought we'd have to use as part of our everyday vocabulary have sadly once again become standard and will be for the foreseeable. Words such as Hickman line and neutrophils to Oncology and lymph nodes.

We were given a very unexpected Christmas present 5 days before the guy in the big red suit was due to put in an appearance. We were told in no uncertain terms that it was highly likely I have breast cancer and would need radical treatment to try and rid me of it. We then had an agonising 2 week wait until the New Year until they could give us 'the formal diagnosis'. Limbo land hell, sleepless nights and disbelief don't quite cut it.

We gradually told family and close friends and the children. I can't even bring myself to put into words at the moment how difficult that was. Sadly cancer isn't a stranger to our family, having lost my Godfather to secondary kidney cancer a few years ago and Mother in Law to the most agonising death from vulval cancer more recently, none of us, the children included, were ready (is one ever?) to enter this world of uncertainty again.

Since then we have gradually told more friends and family, colleagues, school mums and dads, teachers. On the whole we have received nothing but support, offers of help in so many different ways (we have accepted as many as possible with open arms and gratitude). Colleagues especially, couldn't be more accommodating, which really does make a HUGE difference!

So as I embark on a monumental week; firstly starting my role as a full-time lecturer in Physical Education and Sport Pedagogy at Leeds Beckett University and the following day my IV chemotherapy to try and rid myself of this dreadful disease, I have not got much head space for a great deal else as you may imagine!

Although, I will mention my friend Sally's blog; through another bizarre twist of fate, I will be seeing far more of her than either of us had planned. She has written a recent post about me here https://onelegoneboob.wordpress.com/

In posts over the coming weeks I'll upload the thoughts and experiences I've recorded over these last 5 bizarre weeks, as well no doubt, as the experiences as I face what is to come.

Thursday, 8 October 2015

Wear and Tear....

Thinking about it logically it's bound to happen. Nearly 20 years of living with an above knee amputation is going to start taking it's toll. Not only on my remaining leg but on my whole body. And if I'm honest it does worry me for the future, as I may (hopefully!) have the same amount of time on this planet as I've had so far and I need this body to last!!

You may think what I write next is obvious and inevitable but during all these years I've gradually got more and more used to living life as a disabled person. Although my impairment is not a progressive condition, life can be unpredictable, yet many don't seem to realise that. I still find it astounding that many people still have the simplistic view that you lose a leg and get a false one and then 'get on'. 

Sadly it's not quite so easy as that. Some days you don the prosthesis and it just 'doesn't feel right' so you do it again.....and again. Sometimes into double figures. Other days it's straight on and you're away. The repeated application is not good if you're in a hurry! And often there just seems no explanation, no rhyme nor reason. Then come the times when there is an issue with the prosthesis itself, which needs fixing, not so easy to get an appointment, organise childcare and travel to the limb fitting centre. Or you can't even wear the leg because you have a blister/sore on your residual limb. Frustratingly even the tiniest lesion can be made worse by wearing the prosthesis so it often needs to be left off for at least 2 days, sometimes up to 5. This situation always reminds me of how hard it is. And it's safe to say it's a 'bad leg day'.

Suddenly you go from being able to do virtually everything, to being very reliant on others and feeling extremely restricted. BUT I have, over time, got used to this and I say and mean 'it's just the way it is'. You just gradually realise that things don't necessarily get better the more 'experienced' you get, or the more advancements there are in prosthetics. It's just life as an amputee. It still does feel frustrating and annoying each time it happens but I think that it's my reality that, from time to time, things become extremely difficult but then do get better again, you learn to live with it.

This time though it's not the amputated side causing the issues but the sound side. Not so sound......

I have lived with a torn cartilige in my hip socket in my remaining leg for several years now. The only way to solve it is to have a hip arthroscopy and repair or resect the area. This is easier said than done and there is no guarantee it would work and there's even a small possibility it could be worse. Then comes the difficulty of actually performing the surgery as this involves traction of both legs. It wasn't until I had been up and down the country and ended up back in Harrogate that I found a orthopaedic surgeon, Jon Conroy (www.jonconroy.com), who was positive, also willing to explore the best possibilities for not only performing the surgery but 'managing' symptoms and not rushing to put me under the knife. A HUGE relief! As the rehab following the surgery would be 6 weeks partial weight bearing on the other leg, in my case, the prosthesis, which is of course easier said than done. 

We decided to try a steroid injection, which obviously wouldn't cure the problem but may relieve the pain....worth a try. The first injection last December was a resounding success, eliminating the pain altogether from the time of the injection for a period of nearly 3 months. Of course all good things must come to an end, as they say. Unfortunately the next injection in April wasn't effective and doctors felt it was worth one more try. Thankfully the 3rd, in August, resulted in approximately 75% improvement in pain and discomfort. 

That all sounds relatively simple but it is uncomfortable having the injection, particularly due to the inflammation in the joint. It is done under x-ray, to ensure the needle is in the correct place. Not pleasant. I had a very bad experience having an injection shortly after giving birth to Joe, which was extremely painful and quite honestly put me off going back for nearly 3 years! I was literally ecstatic to find the Consultant Radiologist, Dr Dominic Baron, who did the recent injections was excellent in every respect, from doing the injection itself to his bedside manner. And was in essence just a very nice guy! This makes a massive difference to me, as I've had so many bad experiences over the years. Thankfully my consultant recognised this and I was able to have the same doctor injecting each time.

With the issues connected to the hip pain being managed , frustratingly the pain I was experiencing in the rest of my leg has, over the past 12 months, become almost unbearable. I do not want to be constantly taking painkillers, but I was and also relying very heavily on the physiotherapy to get me through each week. My knee and ankle were frequently painful, often swollen and hot to the touch. My lower leg and shin have become very sore and sensitive, especially the shin bone. It came to a head when I broke down in tears at physio about a month ago (quickly rescued by the lovely Sharon with a cuppa!) They insisted I visit the orthopaedic consultant again and quickly. I expected to hear that the pain I was experiencing was referred pain from my hip. I was shocked when he told me he thought I had multiple issues, swelling and fluid on my ankle, knee pain and possibly shin splints or even a stress fracture of the tibia :-/ Next on the cards was a VERY long MRI scan. 

While all these investigations were being carried out I have received amazing support from the team of physiotherapists at Physiocure in Cookridge (www.physiocure.org.uk) Anna Nelson, one of the partners became a very good friend a LONG time ago! They have been ultrasounding and massaging my leg as well as sticking needles in here, there and everywhere to try and manage the issues! I hope that, with their guidance, together with Pilates from the lovely Julie at Physiocure, hip hydrotherapy with Eliza and rest (those of you who know me well know I don't do rest too well!) the pain will improve. 

So back to the original title....wear and tear. I know that many of the issues I am facing are due to overuse. Who knows maybe excessive use by me as I am not one to sit around. I am always busy...maybe too bus..... but hey we only get one life! Although I realise the grim reality is I only have one leg! And it's got to last! It doesn't help that I frequently fall too, for a variety of reasons. This week by stepping on the lace of my other shoe! I would say on average once a week. Jon Conroy referred me to another specialist, Mark Farndon (www.yorkshireorthopaedics.co.uk/our.surgeons.php?s=3 ) who specialises in foot, ankle and knee problems. 

What's impressed me is that all the specialists I have seen recently have been sensitive to what I have  been through in the past, particularly the unnecessary treatment I have undergone as a result of the misdiagnosis. They realise that the last thing I want is more surgery, unless it is absolutely unavoidable. They aren't so quick to slice and dice, unlike I have experienced before. They see the bigger picture....that I have children, jobs and can't non or partial weight bear on the 'other' side after surgery. They want whatever the course of action they decide upon to be the right one, believe me it's not always the case! I can't tell you how much I appreciate this. 

When I was sat waiting to get the MRI results this week I was finding it hard to get 'worst case scenario' out of my head and wondering how on earth I would manage with a cast....even a removable one! I was so relieved to hear the good news that there was no stress fracture, minimal changes to the knee and no arthritis in knee or ankle (I also know there is none in my hip either :) Woo hoo!

The specialists agree that most of my pain stems from my ankle. Lax lateral ligaments, which is causing swelling, fluid collection and pain (a lot of...!) In reality the only way to solve it is surgery to tighten them. Once again this causes issues. So in order to try and 'test' whether this will be the right route to go down (it is a very successful operation which is also a positive) the next step is having the physios strap my ankle (as if it was sprained) in order to try and reduce the symptoms. This will hopefully recreate the stabilisation (similar to the surgery but with restricted movement) for about 6 weeks, then we can decide on whether to go ahead. He was in touch with my physio the same day as the consultation to explain what was required. 

You will see the lovely Eliza showing Sean how to do it! 

I also, inevitably, have had issues from using crutches for nearly 20 years! Physio helps but......I ended up with tennis elbow. So I was referred to another fab specialist, Charlie Talbot, who did a controversial procedure on me called PRP - Placelet-Rich Plasma therapy (you may have heard more about it relating to a controversial new facial called the vampire facial) it's been around since the 70s and Thankfully for me, despite the pain, swelling and bruising of the first few days, it's been successful!

I feel sooooooooo thankful to now have an excellent 'team' of people now working together to keep me in one piece and as pain free as possible. It also helps that they are some of the nicest, kindest people you could ever meet! Even, would you believe? Restoring my faith in the medical profession! I have the lovely Julie and Rob keeping me training in an appropriate way, so as not to exacerbate the situation. I'm doing Pilates and PT with lots of seated and bench exercises as well as swimming for CV work (no tumble turning allowed though ;-) 

I am sharing their details in this post as it gives me an opportunity to thank and recommend them as I quite honestly would be a rocking, shaking wreck in the corner if it wasn't for them working together to keep me physically and mentally sane!

Believe me, I find it hard sometimes. Especially when I find it difficult to put one foot in front of the other without experiencing pain. It's hard not to feel angry that NONE of this was necessary. Absolutely all of this wouldn't have happened if one person, a Histopathologist, hadn't made a mistake. If she hadn't wrongly interpreted the slides because she wouldn't admit she couldn't see the slides properly because the MS was affecting her eyesight. But do you know what, I can't change the past. I can't change what happened so I have to just keep on keeping on, because I am still here and enjoying the good times. Live life to the full!!! 







Monday, 18 May 2015

Progress

Commenting on a post earlier, on a Facebook page I follow, has prompted me to write a (long overdue!) blog post. It isn't specifically to do with my leg or 'what happened to me' but I guess it is certainly related to the struggles many of us face day in day out, even though the details may be slightly different. 

It is a support group for parents of children with a milk allergy. Someone was commenting that she felt disheartened that she didn't read many 'positive' experiences on the page and what ensued was a 'heated' discussion about people needing support and that they weren't being 'woe is me'. It prompted me to think about how far we've come despite the battles we still have to fight. I still can't believe some of the things we've been through since we began this journey over 12 years ago when Hope began to become ill. Tears, despair, paying for private Doctors, insomnia due to worry or later on due to a 3rd baby with severe reflux disease, who cried constantly on every car journey for months on end. 

I write this on the eve of yet another hospital appointment (I don't exaggerate when I say the nursing staff in the Children's Outpatients Department recognise us, from as far back as the days it was at St James!). This time it is for Jack. He has been struggling on and off since Christmas with stomach pains. This peaked when he ended up in hospital at the beginning of March, when they ruled out appendicitis. He was then tested for coeliac disease (the Autoimmune Disease that me, Hope and Joe have) but this came back negative. Puzzling, as it would be the most reasonable explanation given the circumstances and symptoms. 

I then fought for an urgent referral to the gastro paediatricians at Leeds General Infirmary. The GP referred him and he Immunologist dictated a referral letter whilst we sat with him. Why was I not surprised when we heard nothing?!! So, as usual, I chased it up and was told we would need to wait up to 18 weeks....urgent my eye! Then ensued the usual ringing around and questioning until they 'magicked' an appointment at the fast-track clinic. This still would be 11 weeks after the symptoms were their worst. Needless to saying made arrangements to attend this long-awaited appointment with him this coming Thursday, for them to call less than two weeks before as they were cancelling the clinic and told us to attend tomorrow...when I was supposed to be teaching....or go back on the waiting list. 

I guess what I'm trying to say is that this is what we have to deal with day in day out, I doubt this will ever change. No, it's not the end of the world and yes, there are people far worse off than us but it can be stressful and draining at times. But when I wrote the post on the Facebook page (see it in the screenshot below) it made me realise that these struggles do pay off and it's easy to feel so negative and disheartened by these things. But we have come so far in dealing with their allergies and gastro issues in those 12 years. I think the memories will always be so vivid, of the long difficult days with a baby who screamed for about 18 hours a day. When I wasn't even able to have a conversation with my eldest two because every car journey, even the school run, was dominated by the screaming. And sometimes all of us ended up in tears when stuck in traffic. The nights spent pacing the floor with them in the sling (thank goodness for my fellow late night friends who I was able to talk to or message - they know who they are!), learning to eat breakfast, lunch and dinner with one of them in the sling (but remembering to put a sheet of kitchen roll on their heads so as not to get coleslaw in their curls!!) Breast feeding for over 2 years, whilst eating a dairy free diet (as well as gluten free) as that is what the Doctors recommended as best for our youngest. Amongst all this we both lost our Mums within 18 months of each other, both in extremely difficult and tragic circumstances. 

My health is suffering, mostly due to overuse and stress. Jaw, elbow and hip problems, requiring surgery or unpleasant procedures at times. This certainly seems to come with the territory of being an above knee amputee. But in the last 18 months I have met 4 of the most lovely consultants who have been 'patching me up' and have begun to restore some of my faith in the medical profession. Not to mention the loyal physios who now know me well :) I have recently have had to start again with a new prosthetist, which I found very stressful. It surprised me but I guess our relationship is key to literally being able to go about daily life. 

I think this IS life. Ups and downs, fights  and sometimes progress and you just have to keep going, as no one else can do that for you.




Thursday, 4 December 2014

The Eve of the Rest of my Life?

This is exactly what it feels like. Tomorrow morning I will visit the orthopaedic specialist (the 3rd I have had to consult over this matter) for the results of an MRA (Magnetic Resonance Arthrogram) where dye is injected via a needle guided under x-ray, into the joint space, followed by a scan. 3 years ago following Joe's birth, I was diagnosed with a tear in the labrum (hip socket cartilage). This was suspected before I got pregnant with him but unable to be diagnosed due to the risk of having x-rays and scans during pregnancy. The specialist omitted to tell me it would be advisable to have a C-section so as not to aggravate the injury.

The most worrying thing is the tear is in my hip on my 'sound' side i.e. my non-amputated side :-/ The prospect of any sort of surgery on the leg I rely on ALL the time, on my ONLY leg quite frankly worries me sick. All sorts of questions like 'how will I weight bear on my prosthesis?' 'will I need to use my chair all the time?' 'How will I get the kids to and from school?' dart round in my head, so much so I just want to bury my head in the sand.

Living with chronic pain REALLY gets you down at times and it's hard to get yourself motivated to do anything, so the reality is you just 'fire fight' and keep your head just above water. You are shattered all the time, yet can't sleep, whether it's the actual pain, phantom pain or just the worry. My brain can feel wired at 2 in the morning! You snap at those close to you without meaning to and forget lots of things!

Referred pain becomes worse than the 'actual' pain...knee, shin, ankle. But everything is breaking down because it can't take the strain. Persistent 'tennis elbow' - ha if only it was caused by taking part in something so fun! Nope....using crutches and sometimes a wheelchair for over 20 years is why!

Then there's the guilt. Trying to be thankful for what I have, when the people around me are being diagnosed with and treated for cancer, needing transplants or having to bury their children. It's a vicious circle where you end up in a downward spiral; too tired and in too much pain to exercise, then feeling lethargic for not exercising. Feeling down so eating junk, then putting on weight and feeling even worse.

It's at times like these it's hard not to feel bitter or resentful about being wrongly diagnosed and all the unnecessary treatment I received. Because the reality is I JUST WANT TO GET ON! I really want to have the strength and energy to play with the children and do my job without hurting. I don't want to walk into the playground and have someone say 'You look shattered' or comment on how they've noticed I'm limping 'worse than usual' or 'not walking so well'. Don't people realise I KNOW?! I want to be spontaneous and not have to plan everything with military precision.

Despite what's happened I've always tried to pick myself up and carry on, yet it feels increasingly hard to do so. I have tried so hard to learn to run again and have achieved it, progressing to doing my first (short!) triathlon this summer, which gave me a huge sense of achievement. That now feels like it will be swiped away from me again, as not only should I not run right now, I can't.

In order to attempt to repair the tear they have to traction both legs, which becomes tricky when you only have one! The first specialist made me feel like a real 'problem' and made it clear he wouldn't really touch me with a barge pole. The second saw me as a 'challenge' and to give him his dues, was looking in to all ways to achieve it. The third, well he seems very genuine, not so phased by the 'challenge' I present, not wanting to rush into anything, very thorough and respectful of the fact that I may find it hard to put my trust in Doctors!!

So in a few hours time I will find out whether he thinks he can attempt the repair or I am heading on a roller coaster ride towards hip replacement, only to be put off for as long as possible with steroid jabs. The course of my life could change forever. My Mum had numerous hip and knee replacements over the years and I saw how she suffered, it's hard to remember the times when she didn't.

Please pray/send positive vibes/give me cake; whatever you believe in, as your support is, as always HUGELY appreciated.

I am not, and never have been looking for sympathy, merely understanding, Writing this blog helps me empty my head of the jumbled worries and straighten them out as much as possible.

Tuesday, 15 July 2014

The difference a week makes......

Just over a week ago I was on a high having completed my first triathlon www.triathlonpink.co.uk 


One week on and unfortunately I can't wear my prosthesis due to problems with my residual limb.



Many would attribute these issues to the above, but in actual fact I felt totally fine the day after, not even a twinge (I was shocked too as it was fun but HARD work!). 

The reality is it comes with the territory or as I like to say 'it's an occupational hazard'. Whenever someone has had a limb amputated and wears a prosthesis there will always have to be an interface between the two and this is where the problems begin. However well fitting a limb is it only takes some warm weather, a little chaffing and the skin has broken down, then gets infected and wham you can't wear it for days. Sometimes you can patch it up like below but even at times with this much 'padding' it is literally still agony to put weight on it :( 


I realised that this is something us amputees have to deal with on a semi regular basis and to be honest the sooner you accept that, the easier it is to deal with. I am a pro on crutches (should be after 22 years!) only last night when I was leaving cubs after their American Football session (which I wasn't participating in incidentally ;-) I went to return to the car and found I had to go over a small fence...which I had obviously come over on arrival but never noticed! I guess I was too preoccupied by my daughter telling I was 'sooooo embarrassing' after I had opened the car window and politely asked the parent who just parked in the disabled space....as there were no others free(?!!) .... If he had a blue badge. I think you can guess the answer. He did move with no further dialogue.

The thing that hits me hardest is that you so easily and quickly forget how hard it is managing on the crutches or in the wheelchair. I use a wheelchair morning and night when I remove my leg, but only briefly. You forget how hard it is to do all the things you take for granted day in day out. Helping Joe in and out of the car seat, standing putting fuel in the car, preparing a meal, emptying the dishwasher, trying not to slip in the pool changing room, carrying shopping, icing a cake, not to mention working....to name but a few. It's hard not to get frustrated and cross. It's not even using my chair, you can adapt to that, it's because it's such a change. One day, fully independent the next, far from it. 

I wonder why I'm still surprised by the issues we face when trying to use a chair, whilst out and about. I tried to follow Sean into Costa Coffee on Sunday but couldn't as there was no dropped curb, except leading into a disabled space that a car was parked in. Now that DOES make me cross when I'm prevented getting my caffeine fix!! 

Then the reaction you get when pointing out to the manager at Guiseley Zoo (AKA Pets at Home) that it's virtually impossible to enter without going all the way along on the road/car park to the next store because of the bird tables, rabbit hutches and charity collection blocking the path. And not being able to hold your 3 year olds hand and push while in this situation. 'Well it's not usually like that!' Errrr well it is today!! Exhausting just dealing with all that sort of crap. 

And maybe one of the hardest, most wearing aspects is dealing with others reactions and questions. Don't get me wrong I'm not 'touchy' about my situation and always more than happy to explain to the child in the playground where my leg has gone and why I'm limping or wearing a blade. Children are naturally curious and honest and that is great. They are also far more accepting than many adults. 

This isn't the first and won't be the last time I am in this situation. In fact I need surgery on my 'sound' hip due to damaged cartilage :-/ which could see me using a chair for a few weeks. 

I shall leave you with an image of one advantage of not being able to wear my leg when attending Joe's gymnastics class with him today. It was the final session of term and bouncy castle....and somersault time!! :-)