Cancer Stories, Health

You’re so positive….how do you do it? #220

Now this is something I hear a lot and to be honest I don’t know if I know the answer but I’ll try. (and probably ramble as per usual !)

Here are a few examples of how I look at things.

  • Sometime ago I dislocated my kneecap (by rolling over in bed may I add) and it was off to the side and above . It was really painful but rather than waste the day sitting in AnE I asked G to put it back….yes it was so painful it actually made me vomit but this way I still have the rest of my day right?!! So G tries moving it back , and he only managed to move the kneecap across so it’s central but still sitting really high. I was still in a huge amount of pain but I remember saying to G that it’s a bonus we are at least half way there….G laughed and said “you can find a positive in Anything cant you?”


Often when I see a new doctor I have to give a quick summary of my medical history to save time. While I’m rattling through as quickly as I can, I’m usually interrupted several times with “oh wow”, I have to say “I’m not done yet”… They ALL WITHOUT exception say…”oh wow how do you cope?” or “you look so well”, and / or “you’re such a happy person etc” . All I can think to say is “well it could be worse right??” lol and that IS how I feel.. and that’s not necessarily even thinking about the cancer, but for example …. here’s my list….

*subarachnoid spinal cyst – surgery in 2012 went well and other than mild weaknesses on right side and some nerve pains from scar tissue…it could have been much much worse, so genuinely feel I dodged a bullet there.

*EDS (Ehlers Danlos Syndrome hEDS with vascular crossovers)- Mine isn’t too severe I can still move about with crutches. But I do regularly dislocate or sublux knees, hips, wrist, fingers and jaw. Few issues with randon vines bursting and whopping bruising..and yes its getting worse the older I get – That said, there are some people who I know who are so much worse off for example a lady I know through Facebook called K- she’s a bloody trooper her EDS effects her far far worse but she is an awesome Mummy to 4 beautiful girls and she doesn’t let it stop her.

Very much like another lady called Samantha who was forced to raise half a MILLION pounds to go to America for neck stabilisation, as without the surgery (not available in UK) she could have died !!! So I will take my wonky joints and pain and be bloody grateful !!! (Samantha has set up a charity to support fellow sufferers of EDS here is here website and her Facebook group here  its in its infancy but this lady has drive and determination so I have NO doubt it will evolve into something amazing – so keep your eyes peeled for that one. 

*Sacroilitis……ok this one sucks….bloody hurts it comes in flare ups and isnt constantly there (I will add that flares can last months at a time and the pain radiates around the front and down the legs too it sucks)

*PEG FED being peg fed….least I don’t have taste my yucky medication or rancid ensure compact ……blurgh so that’s a BONUS

*Radiotherapy damage! This one is BAD like the rest there is no fix….but unlike others this one messes with my head more than anything else ….it remind me of the Military Padre that supported us  during my treatment he used to just repeat…. “they are making you sick to make up better……”, it was so needed at the time. Although I now know that Radiation Fibrosis is progressive which is a bit of a shitter . That said,  for now, I can still speak I CAN make myself understood….. yes it hurts but I LOVE to talk so its worth it lol. Before I had my big surgery we didn’t know what I would be left with,  if I would have any speech at all and yes I had to relearn how to speak and yes I’ve hit a stumbling block currently – see THIS post ..but again I have managed to find a huge positive – Ive already been through the worst – I cannot have radiotherapy again (due to dose) so the worst bit is over plus I know Sign Language so should I ever need it – its there. OH and IM CANCER FREE ……that’s a HUGE bonus lol 

TONGUE Cancer hemiglossectomy (half my tongue removed, straight down the middle) … I’m so grateful it was not a full glossectomy, or a chin split! In 2013 I had this surgery I had – Half tongue removal as apposed to full tongue removal – finding the positive in that one is pretty easy- but that said I have the privilege of knowing a WONDERFUL lady *A and she had a full glossectomy….she got nothing left of her tongue and she is THE most positive person I know – its off the chart AND she no longer has a feeding tube – that bit seems nuts to me but she is living her best life and absolutely smashing it ! I genuinely admire this lady – shes a real gem. 

*Hypothyroidism (secondary to radiotherapy and unstable), this one is a odd one – when under control / behaving you wouldn’t know you had an issue, but when its out of whack it does throw a spanner in the works, but its been much more stable in the past year so that’s all good. A weird bonus of being on liquid Levothyroxine is the ability to have an exact dose, whereas those on tablets only have a few options – for example tablets I believe come in 25, 50, 100 and 125mg in the UK but I need 120mg – it might not seem like much of a change but its made a big difference – so there we have another bonus

*Reactive hypoglycaemia– this ones new and I don’t know too much about it but its not every day or even week so again could be much much worse

*Collapsed abdominal muscles– yep from time to time they hurt like hell but some big old granny *sucky inny* knickers and a “shaping” vest and Bobs your uncle Fannys your aunt!

Neuropathic bladder with need to self catheters ….. this one is a positive as it cuts down on UTI;s – which is awesome and they’re so discrete nowadays no one would know what they were even if it fell out of your hand bag. Here’ s a picture- and its super easy to do once you know how and not painful I should add! 

 Lateral disc bulge s4 and 5 The doctors think this is the cause nerve pains down my good leg which sucks but remembering what poor G was like when he had a slipped disk – its a million miles from that, he was in bits. So I feel very lucky to not be suffering like that. Thankfully other than one small relapse G is doing great after doing lots of Physio to help with his issue, but is still a tad more cautious. 

*CRPS which is Chronic Regional Pain Syndrome – now this one double sucks but I have coping mechinisms which center around it not being touched which includes wearing a tubie grip over it to stop things brushing over it and my awesome kids know to avoid my bad arm like the plague. Plus  my amzing sister who works all over the world but often from the US  got me some lidocaine pain relief patches which offer some help – I also use these for my sacroiliitis and mid back – so triple thank you Jo xxx

Low BP I suffer from very low blood pressure, but I thike Mum and my sisters do too so that’s no biggy – unless your unwell and it drops more as you don’t have a buffer zone and this sets off

POTS which is Postural orthostatic tachycardia syndrome  not so great….a very simple treatment for those mildly to moderately effected…adding salt to your diet…… I bloody LOVE salt …BONUS…every cloud right?

I didn’t realise that list was so long – but please don’t take it as a moan cause its not – Im all good xx Moving on…..

A few years ago before cancer I was a shout and scream type of mum and would lose my temper regularly, not in a abusive type of way by an means but just a different way. Post cancer I made the decision to be a calmer person in general. I also have tried to be a better wife, and please don’t take that as a 1950s housewife. I mean a better companion, a better friend to her husband. I really do think we are smashing it because of the conscious effort I make.(haha just read that back…maybe G has something to do with it too lol )….that said this hasn’t been an overnight thing, but there are few things that I do, that really help to put things into perspective and has helped me try and be my best me. Please don’t take it as I think I’m perfect I am far far from it and wouldn’t even aspire to it but I’m certainly better than I could be and have been in the past. so maybe in a odd way I have cancer to thank for that ????????

So here’s a list of things I actively try.

  • Take a breath yep! it’s that simple before you say or do something just take a breath it is in that split-second you choose whether to launch into an argument or a shout or just move on or getting upset it’s just gives you a second. To consciously make the choice. rather than a knee jerk reaction.
  • If you find yourself at the other end of somebody being rude or pushing past you or something like that, again pause. Could it be that that person has just had some terrible news? or perhaps they are in pain or they’re rushing to get their child who is poorly?? you never know . You never know what’s going on behind closed doors so just give people a chance. That’s not excusing people who are just being pricks for the sake of it, cause let’s face it some people are just horrible but I don’t think its as many as you’d imagine.
  • This is something I encourage the children to do every single day! make somebody smile today it’s that simple. It maybe just say “good morning” to somebody in the street, it might just be enough to turn someone’s negative day around. And as we all know smiles are contagious.
  • Then there’s my belief of pay it forward and yes I have watched a film and I loved it many many years ago but I mean why not? For example I’ve got a neighbour who, when I was in hospital for all of September and October, made some lasagne for my husband and my children which is super super super kind of her, it meant G didn’t need to think about cooking that night. My daughter absolutely went nuts for this lasagne she loved it, and my neighbour still occasionally ,makes Daisy an individual portion of this lasagne which is super sweet. I chose to pay it forward to a local family who unfortunately were having a bit of a family crisis. I genuinely think we all have a neighbour or friend who could do with a small act of kindness, and from a selfish point of view doing good makes you feel good too.

That all said I do shout at the kids but not often,  and I most definitely have woe is me days and this last week has been a doozy….

I’m only human …but I keep trying to be better and I think that’s the key.

Oh and to Keep Smiling !!!! 

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