fuck cancer – My Cancer and Me & beyond

It’s not always about the patient !

Nov 16, 2018Nov 16, 2018 mycancerandme

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)

Sep 5, 2018Sep 5, 2018 mycancerandme

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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