im gonna start with apologising as this may be really negative ........ held these emotions in and did the brave face since 8th Sept and i think i hit my rock bottom (even though i know worse is yet to come ) so strap yourselves in its reds jackanory time!
my mum was diagnosed in July with stage 4 non smallcell lung cancer with a 5cm tumour and it had already travelled to lymph nodes in her chest
we had a combined treatment of carboplatin pembrolizumab and pemetrexed on 8th Sept and came home then only a week later 15th sept when we were due to see our oncologist mum took really ill and we were admitted into clatterbridge centre and they were amazing so after an 11 night stay we went home
this put a stop to the next cycle as mum needed to get stronger and we fully understood the nightmare just got worse mum was experiencing pain in her hips and groin so we called the helpline and advised to take her to A&E on Monday 2nd Oct and we did we had xrays and a scan as they were worried it might of spread - luckily it hadn't and we went home the same day but sadly this was short lived
on Thursday 5th October my mum was found unconscious in bed temp of 39.8 an ambulance was called and we were taken to A&E Blue flashing lights and sirens we were told she may of had sepsis, luckily it wasn't then we were told scan had revealed something on front right side of the brain - it may be a stroke mum was treated again in A&E in there 5 nights luckily it was concluded mum had developed an infection and it caused her brain to swell - the hospital oncology team said ok to go home as mum needed to see her own oncologist in clinic
again home we went and mum was taking her meds as advised she went for routine bloods at the clatterbridge centre on 19th October and then home that was until 24th October again high temperature bowel movements temp on 39.1 we spent 7 nights in hospital again just the A&E and then medical assessment unit then onto a ward
we established everytime mums steroids were being reduced and she got down to 10mg her temp would flare and she become so unwell
frustration being we missed yet another out patient appointment and the hospital were wanting to discharge mum and leave her to be seen in the outpatients clinic
we kept asking for help for answers what happened with mums cancer ? has it spread? has the tumour grown? has chemo helped? and we were told we dont know we cant tell you that you need to see your consultant in out patients even though we kept saying we dont ever make it to clinic as mum ends up back in hospital
and the response all the time was we dont treat the cancer we deal with the infection and your mum can go home ......... i asked why and said we be back again and the doctor said she infection free no need for oxygen or any more antibiotics
the frustrating part is being sent to A&E they dont have the information and were explaining everything over ad over and over
so back to the story ........
mum was home from 830pm Tuesday 31st (happy halloween!!!) and yes you guessed it not for long on Friday morning when again we were due to go to clinic mum had excruciating pain in her legs and hips a temperature of 38.6 again advised by helpline mum needed to be in hospital so ambulance came and worryingly not only did she have a high temp her oxygen was only at 60% - back off to A&E
27 hrs after arriving in A&E and being moved from resuss to majors dept we saw a medical doc again was saying mum needed to be at home as infection risk - i was shocked and had a rather heated discussions that all we are do is go home and then back again another temperature and were back in
his answer was mum infection risk so ideally he wanted her home possibly with oxygen and an emergency pack of antibiotics - and he was worried about steroids which this time hadn't been reduced as we hadn't been home long enough this time !!! the steroid dosage he questioned asking why she was on that dose - i said it what was agreed when mum was discharged 3 days earlier
we said we wanted answers as no one was giving any information
i got to say system is a failing not just my mum but any patient going through a cancer journey
we asked could we see oncology and as always fell on deaf ears i battled throughout the day on monday speaking to our amazing lung nurse speaking to the hospital oncologist finally and to the clinic nurse
mum is still in hospital and is waiting to see about being moved into the cancer centre - but as always a waiting game for a bed
but as my title says why don't they understand why are we always sent to A&E having the most awful traumatic times and being told oh we don't treat cancer - I KNOW but system sends us to you
thankfully after battling mums oncologist called and took 35 mins out of his day to talk to me explain give me some answers were lucky cancer not spread and the chemo has shrunk the tumour slightly - 68 days after treatment we get a little glimmer of light in this dark tunnel
i writing this to get my frustration out but also to ask is anyone else or does everyone experience this when they go to hospital different non cancer docs telling you totally different things ?
we are new to this and feel since chemo its just been a nightmare even though its nobody's fault
hopefully mum gets a bed soon and we get seen then discharged and we finally make it to an outpatient appointment to discuss treatment options
thanks for letting me rant
love thoughts and prayers to everyone xx
