Chemo eve

Sending love and prayers for your mum and you. Hope the first chemo was kind to her and continues to be so xx

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 

This is such an awful awful situation.   I love the NHS but wow they need someone to sort their processes don't they!  Often the goal is to just 'get people discharged' without much forethought to what this means for all concerned.   

Sorry it posted before I had finished!    Did you get any answers?