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Your so positive….how do you do it?


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’s 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 trys 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 bonus we are at least half way there….G laughed and said *you can find a positive in Anything cant you?

SEEING A NEW DOCTOR

Often when I see a new doctor I have to give a quick summary of my medical history to save time, while im rattling through as quickly as I can, im 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 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 …. hers 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- shes 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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It’s not always about the patient !


This post isn’t about me it’s about family and how they are affected by my ill health and my hospital stays. It’s something I’ve mentioned but recently the effects have been bad have been BAD.

As you know I’ve just been discharged after being in hospital for eight weeks. My husband has had to keep the house running, the children going and visiting Me AND all my extra washing as well as things I wanted bringing into the hospital.

Now being a military wife some might say well it’s just the same as when the husband or wife go away on tour. That’s just wrong, when a husband or wife goes away for 4 or 6 months we have to juggle the house, children, dogs, and family we do not have the added stress and worry of having a loved one in hospital and the additional stress of visiting , and finding parking, which is damn near impossible as Stoke Mandiville Hospital! He’s had to cope with the children being upset because mummy is sick, the seven-year-old who is waking up in the night because he misses mummy and is scared that something bad is gonna happen . He then has me phoning whingeing saying I’m having a bad day, saying the crazy patient opposite has been literally screaming for ten hours or that the little old lady you really liked had passed away. Venting my frustrations about Doctors or Nurses or that HCA who was making up numbers when taking SATS (yes I reported him).

When you get home I hope everything will go back to normal but it doesn’t, you come home to a seven-year-old who is crying because she wants a cuddle yet she’s sitting on your lap cuddling you. A child who doesn’t trust your home to stay so doesn’t want to be away from you. One who’s regressed so so much your no longer mummy but mumma.

It gets worse!

While is in hospital I was I thought I kept in the loop about D and how she was coping at school which wasn’t well and what was being done about it.

You come home and take over school run because she wants which is fine and I’m quite liking getting back to normal. Your then told by senior member of staff that she is not just been having a bit of a rough time, she’s now the polar opposite of the child you left.

The highlights.. {scarcasm here!}

*she barely smiles [was known as a smiler last year]

*refusing to work to the extent she has been removed from the class! [just wow this has NEVER EVER happened]

*crys everyday over everything and nothing (again new)

*not speaking to adults well [ok well yes she need reminding sometimes but it’s never been an issue.]

And so much more.

I may have been in hospital, but, she has 2 parents. Yes they told G that she was struggling but OMFG REALLY ….. we could have put things in place .. support or I don’t know?! arranged for me to call her every lunch time … oh I don’t know but SOMETHING … now we are in a situation where it appears that her form teacher thinks she’s a “bad kid” [my assumption not something that’s been said – but I do have my reasons ] Now, they do have pastoral care type person Miss A and she’s great but she’s not in the classroom she’s there as a defuser for when this kick off or have a melt down [again an assumption based on what I’ve seen ] don’t get me wrong she lovely and when D has has a melt down she’s taken her off for a walk so daisy can chat away to her heart content and do a bit if a brain dump- ready to return to class.

My my poor girl [ive not forgotten my boy but I think he would appreciate me just saying how he’s suffered too but because he’s well ard he ok… I joke but seriously – Yes he’s suffered, but since being in cadets he seems to be able to handle things much much better – that said young careers are also helping out]… where was I? Yes D she’s massively been suffering and I feel that we have been somewhat been kept in the dark… perhaps from a well meaning standpoint but one I wholeheartedly believe is wrong.

So …what have we done, tried to reassure her as much as we can especially as she doesn’t believe for one second that I’m not going back into hospital. I’ve sought advice from my wonderful GP who I cannot thank enough Dr L ..and I’m going to see her teacher Tuesday.

Dr L said something that’s very true…

Your family are professional copers…no one knows how much you are going through and dealing with as you have a vissard.

So trying to lower the vissard here’s a few little known family facts ..

Ok dropping my guard here!

G wakes up early every day to prepare my medication. Every day so that I can move in the morning, as without my medication I’m stuck in bed.. [there’s about eight meds, some need crushing and putting into water, some are liquids all need to be in syringes and then go into my feeding tube (PEG)].

Another random one not many people know about is..

I cant be a passenger in a car more than 20 minutes without vomiting [violently even after medication, yet I struggle with fatigue so don’t drive too far… what to do? The thoughts are that the radiotherapy damaged my inner ear massively which also accounts for some of my valence issues.

Anyways this is me signing off – I usually say still smiling but today I am truthfully not smiling

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The battle continues ….. smiling still (occasionally through gritted teeth)


Hello and thanks for reading if your here. I haven’t updated in quite a while which i’m taking as a good thing as i think it means i have not needed this outlet, and perhaps we haven’t had too much going on…. that’s sort of true.  although i am about to have a small operation to put a new PEG in as i have had so many issues with it.

I will start with the amazing fact that we are now post 5 years (2 months) since i finished my treatment, BUT what many people don’t realise is that this is not always the end, ill start with something i shared on my facebook page.

Life after Cancer –Fun fact – When i eat orally, which i don’t do often, but food quite often goes up my nose — and there’s only one way out!
Its a horrible sensation and at times painful but more than that its like the feeling when you get water up your nose when swimming, you know?? then you have to force it out your nose …. sexy no????

Life after cancer for many is a new normal, weather it be a breast cancer patient with lymphedema in their arm or arms or a head and neck patient dealing with a physical change to the face and neck (one that other may see).

Cancer for many leave mental scars that no one will see, for example if i slip off my pillow and wake up laying flat I cannot get up – my neck muscles have atrophied and been cut in places — when this happens my mind jumps back to the times that i was attached to a metal table by a face mask – unable to move – my head squashed in a plastic jail – its a feeling of helplessness, of panic – it doesn’t last long, but long enough.
please join me in saying #fuckcancer 

Another fun side effect is travel sickness …. to such an extent we take sick bags everywhere – i throw up after i have been a passenger for anything more than 10 minutes – sometimes less —- we have tried sea bands but due to the anatomy of my left wrist (donor site) they don’t seem to work – cyclizine – gives me an extra 10 minutes and ondansetron sometimes works … its not just vomiting its a woozy headache that makes me feel rough – its the physical pain of vomiting violently, when you have a PEG vomiting pulls the tube and it HURTS – then theres the effects on the children and G – they seem mum throwing up heaving and looking poorly all the time – Now i don’t get sick when i drive but i suffer from fatigue and at time take strong painkillers so cant always drive!!

 

All of my readers aka friends will know my health is fragile its a balance, both from my cancer side effects (ie radiotherapy damage mainly) and spinal issues, which include cord impingement symptoms and discoordinated bladder etc and my pelvis problems (post metal fixation causing hypermobility in SI Joints causing sacroiliitis). I have to trust how i feel – i get infections that go nuts quickly –  and have UTI infections monthly, but i am extremely lucky to have an AMAZING doctors surgery – so amazing that they see me same day when needed (i don’t use this facility unless needed), from D and J on the reception who know i need a double appt as a rule to the nurses who work with my incredibly difficult to find veins for my regular blood tests. To the pharmacist who has to work extra hard as i need all my items in liquid form for my PEG or for them to be crushable (some you can’t crush – or may be known to block pegs) – she always has a smile and nothing is every too much … & the DOCTORS my goodness they are simply out of this world – here’s a few phrases they have said *you know your body better than anyone tell me what you need from me! *do you think you need to go in? (inpatient hospital) – they always have time for me they have never in my hundreds of visit have made me feel like i have wasted a second of their time or that they are not genuinely interested in me… its a lovely feeling to know this fantastic facility and safety net is there for me.

 

More recently i have been having a few problems, i lost 10kg very quickly and without meaning to ( now i don’t mind but as it wasn’t on purpose it can be a sign of other things) and i have been having muscle spasms … so very severe in my neck, they go into spasm and contort my face – i cannot speak or move my neck and it is extremely painful and they come in groups (for want of a better term) as soon as one stops another starts and some even affects my tongue muscle… OUCH … and the past 2 weeks i have felt like i have a pneumonia ie unable to take a deep breath and having to catch a breath at the end of sentences and a ring of solid muscles mid back round to sides – this is restricting breathing as well.

TRYING TO HELP MYSELF

** I went for a massage with Becca at Scruples who are BRILLIANT in hope of getting the **muscles released but, in her words she *couldn’t get through* and shes awesome so it **certainly wasn’t for the want of trying so that didn’t help.

**I am also addressing my diet – or lack of as i live on ensure drinks via peg and odd **snippets when i’m able to swallow (it comes and goes and technically i’m advised not **to try solids at all). Anyways i have decided that i am going to be adding some juicing to me diet (super shots) alongside some specific natural additives

  •  Manuka honey – which has amazing healing properties – i even had manuka        dressing on infected wounds in the past – its THAT good …. and its tastes AMAZING
  • Aloe juice with cranberry – also is great for digestion and healing and the cranberry is good for bladder health
  • a probiotic which is something most peg users need.
  • Turmeric – which had been proven to have powerful anti inflammatory effect and a strong antioxidant
  • Cacao boost – which is Cacao, Lacuma, Hemp and Maca > these are antioxidants, packed with vitamins and minerals, high quality protein with lots of amino acids and a good source of fiber
  • Flaxseeds -Omega-3 essential fatty acids and fibre
  • Supergreens from bioglan which has iron, Vitamins B12/C/E/Zink

I am not going bonkers with it (it was after weight loss btw) i am adding a few things each week to make sure they agree with me etc. With the amazing advice from my jetsetting sister Jo i am hoping to help improve my overall health – even if it makes it 1% better it has to be worth a shot ??

 

I will just add how amazing lucky I feel to have a fantastic family – we are just finishing out 6 weeks summer holidays and i don’t think i have shouted at me kids once !!! They have been amazing and Gary had been great he took 2 weeks leave staggered over the 6 weeks, which allowed me to rest (i slept for 23 hours in one go last week).

 

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