Feeling let down

FormerMember
FormerMember
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My mum was recently diagnosed with pancreatic inoperable cancer. Diagnosis given over the phone and without anyone having seen her in person. No treatment is available and she has been in pain unable to eat for weeks. All of the fabulous support I hear about people having when they have cancer and the meteor of support from nhs and various groups seems to be missing? We do get a call from a go or a nurse who has never seen her to ask how she is- we repeat the same message - in pain, nauseous and unable to eat. I feel very let down with a system that I thought would have surround mum and us with support. Just a big void. Perhaps it’s because of COVID I’m not sure. Wondering how this compares to other people’s experiences 

  • FormerMember
    FormerMember

    I have been wondering the same. Try calling the Macmillan nurses or the ones on the pancreatic cancer website (Monday to Friday) for some info and advice on how to proceed medically. 

    But yes, the IRL support is gone, Maggies centres are closed and in our case the local council cancer care ‘Lodge’ which the carer’s association told us to contact also have suspended everything. It makes for an even more isolating experience.

  • FormerMember
    FormerMember

    Hi 747 thanks for the reply. I will try that but yes you are right, very isolatingand not what we expected.

    thanks again

  • FormerMember
    FormerMember in reply to FormerMember

    That is terrible.  Have you tried your GP?  Surely she must be under the care of an oncologist?  I am sure you have phoned people, but I find it shocking that your  mum hasn't seen anyone.  (my husband is having chemo for his recently diagnosed pancreatic cancer).  Macmillan phone line should be able to help?  I hope you get some help soon. 

  • My Dad was diagnosed with pancreatic cancer back in June, I have taken full responsibility regarding decisions for his care and treatment . Our experience has not been as Unacceptable or non existent as yours has been, that said however the level of support, medical care and management has been extremely disappointing. Time and time again he has been overlooked and lost in the system, a number of times follow appointments and procedures would have never happened if I had not highlighted them, for over a month I expressed concerns relating to his Ascites, asking for someone to examine him, eventually I bypassed the cancer ward and  contacted a separate ward in the hospital , he was seen the next day and had 15 litres drained from his stomach! 
    at his next weigh in the nurses and dieticians caused him great anxiety and worry by their alarming concerns of his drastic weight loss , creating a worrying situation with dads health .... not one person picked up on the fact that 15 litres drained off days before weighed almost 2stone... 

    it was only when the nurse called me in a panic , that I suggested that the fluid drain was the reason.

    all I can say is, don’t give up , don’t stop pushing and pushing for the care and support that is deserved... there have been times where I have collapsed in floods of tears and loss af any hope ,,, but I get back up and push harder and harder for a response... 

    good Uk and stay strong ... you got this 

    Ben x