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After diagnosis #glennthecancerwaarrior
, colon collorectal cancer BRAF information for patients, public and broader
awareness. My cancer journey as a stage 4 terminal BRAF sufferer- glennthecancerwarrior
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#glennthecancerwarrior -terminal BRAF MSS
After Diagnosis - Managing with Treatment and surgeries
Here's my first hand experience on those surgeries I've hd. Thigs that have helped and hopefully might help sharin.
Your phsyio and cae will be key and some of these maybe supplemental with their direction.
Mandibular sugery
I'm not medically trained so this is not advice but simply some principles Ive followed and adapted according to surgery
type and situation.
Mobilse in hospitable as soon as possible Keep as good as possible i.e leg and upper body ready for when weaker.
If feel really tired ask for test on ir0n levels I found seeing my bloods useful to see iron levels, sodium etc..
for some surgery like SIRT you may need to build weight a bit in the knowledge harder to eat after. Speak to your care team
before making any changes
Your physio should by now be helping you Getting mentally strong ahead of surgery and after. Individual choice as to what
works for them. Here's what I found useful. Reiki, Local councelling, sleep meditation
breathing techniques. The later especially useful to
with calmness. Both for you and staff
Mobilise out of bed and hydrate after surgery. Starting with amounts, I found via syringe better due amount
of swelling and tightness of my clamps. Its time consuming witha 5ml syringe and important.
gradually will work up to a big syringe etc..
Cleaning teeth I felt important to keep on top of this. Started with a baby toothbrush. before that mouthwash
they provided.
Mouth exercise per instruction of you health team
Coninual water thtrough sysringe I Tthink I was discharged arond this point after being able
to self syringe meal replacement drinks
Tips for after discharge
fine Liquid food
I forget any previous diets and focused on liquids to aid recovery and sustain weight
So using milk and water to make solution liquidy enough to be fine blended and syringed.
Over time got easier as size of syringes got bigger. Initially had to go very fine so everything
would just taste of milk. At this stage eg, mango juice with milk. a weetabix, banana and lots of milk blended
Heavier liquid food I was gradually able to use less milk and transition to ella 3mths+ baby food
with water or milk. Little and often with meals, started 8 small feeds a day before moving to 6.
Initial soft food Moving onto ella 6month+ baby pouches. Watery but soups made with some overcooked veg
At around this point moving away from syringe and onto a baby spoon
soft food Something I wished I'd hve focused on before. Rgular use of
breathing techniques similar to box breathing. To get back healthy lung function
soft food At this stage very happy to have food with taste
breakfast usually involved. Soaked and mashed weetabix,shreddies, banana and milk
Snacks usually a smoothie. like manago smoothie, yoghurts
Lunches dinner - usually a soup, good quality one from shop as a base with veg added to it
like cauliflower, butternut squash etc...or with scrambled eggs added
Moved onto soft pasta added
Re-training stomach to eat
You'll likely be going through the stages of soft food low residue.
For me I found starting with baby food recommended from 3 to 6 months before
progressing onto clear soups.
I then went through a large blended food stage which allows for more options. Usually
overcooked veg blended into soups. Blended eggs and avacado and bread.
Focusing on these things helped as my recovery time, both for time spent in hospital
and to chemo cycle (stiching looked reasonably healed was half the norm
Well being With hindsight I didn't use this much before and had to start it soon. Partly as my attemptd to failed.
I spent a long time call queues with councelling via large charities.
I tried via my health insurance but they wanted to transfer me between teams and their processes
meant I neede to manage appointments etc.. via email. Which for me I'd said was impossible
as I still had painful burner blisters that made typing difficult and painful.
If I'd had focused on councelling before hand and started with local councelling I'd have used
that.
Mobility support
Depending on how restricted / surgery impacts you have you may benefit from district nurse
home support, hospice support and home adjustments via social presribers. I got local councelling
, home adjustments (dual banister, perch stools, grab handles neer loo, walkers etc)
Benefits At this stage I appled for benefits and a car via motsbility.
It was hard to and daunting myself. Ad been great local hospice were lovely in doing this and
whitin a month or two I Got some benefits and soon after an easy to drive E-car.
The E-car and gave me some mobility and life back. Easy to drive which was key
