I have been told today that my headaches are due to spread to spread to skull in several areas . I said about headaches in June then again that I was getting mild headaches then in September was sent for MRI of head registrar said scan looked clear and that oncologist wants me referred to neurologist , after 9 weeks of chasing and numerous trips to A&E with severe pain and throwing up , as well as registrar saying yes I did referral was done I couldn’t take pain I phoned neurologist secretary to be told I have a date 17 dec
i said I have stage 4 cancer I need a urgent appointment to which secretary replied that I was not marked as being on the cancer pathway otherwise I would have received an appointment within 2 weeks it probably would not change outcome but I have been in pain all these weeks and it is only because yet again I done the chasing of appointments
my partner put an email in to PALS at hospital as it is not acceptable I wouldn’t have known had I not phoned neurologist after my lung nurse suggested in the beginning my original referral letter to see an oncologist was not once but twice sent to wrong hospital it’s bad enough having cancer but for errors to keep happening and for me or any other patient to be put through it is wrong
my family are really supportive but they have watched me suffering with headaches and excruciating pain longer than necessary , I know everyone has to learn but this is people quality of life . I am now laying in my hospital bed waiting for the morning and to see my oncologist the hardest thing has been seeing my children and my partner so upset at the thought of what has happened it is so hard as I try to comfort them but it is so upsetting knowing that I am not when I see their tears
I am so glad of this group that I can get it out of my head sorry I know my outcome would probably be the same but to keep having errors is frustrating as our life’s are shortened enough with out the constant chasing sorry rant over
You have every right to be fed up ad frustrated, please do not apologise. It is simply not good enough that things have taken so long and you have been left in pain and wondering. The mistakes are also infuriating. Yes like you say we can all make mistakes, but I am sure some patients (well I hope it just seems to be that way and it's not because they really are that common) seem to always be on the receiving end.
I have had to chase and check my appointments pretty much every step of the way too, I always seem to get missed, overlooked, forgotten etc too. As you say as if being ill is not bad enough to then use all of our energy chasing down appointments etc. You say your lung nurse suggested chasing this? Can you ask her to take on chasing things for you?
It must be so hard to see your family upset for you too, I wonder if there is somewhere they can receive some emotional support too? Is it something you have asked about?
Now and most importantly poor you that is suffering at the heart of this, I hope they will now quickly give you that urgent appointment and get you on the right track to get some relief from the headaches. I am so sorry to read you have been so badly let down.
Wishing you all the best elfie, come here anytime to let it all out. I find writing it all down cathartic some how.
There are no perfect people, only perfect intentions
I thank you Ginajsy as at times I do feel like it must be me but as I am finding out I am not the only one , I think when we are in pain and awake alone at all hours it seems that way
well there is an update I am in hospital on a cancer ward and have been visited by neurologist and my oncologist not the registrar thankfully , They have admitted me due to my condition and are going to do a series of further tests and a guided lumbar punch as well as pain team they are going to find a combination that works for me to ease pain so I can function . It’s so frustrating that there are those of us that have cancer that at a time when we need less anxiety and stress so we can enjoy our quality time with our families or even doing what we enjoy , we are chasing appointments or scans trying to find what’s happening . Well I am thankful as my lung nurse and palliative care team have sorted this now along with my oncologist
i do think that you are right it is sometimes cathartic to get it out and it does help in a strange way , although my family say to talk to them I do but in the group we are all dealing with cancer , family are great but as much as they care and sympathise and want to help I think it’s only people in the same or similar situation that do , I never want any of my children or grandchildren to have to feel the pain or go through this , I hope that future generations will never experience cancer
I will let you know when I have update on tests time to sleep
Just checking in on how you are doing?
Lying awake especially in pain really isn't fun, you are not alone though, we are all here.
I am glad the team as rallied and sorted some tests for you and you are getting the support you deserve now. I hope the tests have been done and were not too bad for you. Hopefully they have cracked the correct pain medications for you, it can take a while to sort what works for the individual.
I know what you mean about the people around you not always getting it right, though they of course have the best intentions, which makes it even more difficult to voice that maybe they are not helping at times. I have a friend who tried to be very supportive to her credit, she wanted to come with me to appointments etc and I felt a bit smothered and intruded upon. She also kept asking how I was or bringing it up. I have to say I did try and deter the conversations away from it and sadly have had to avoid her a little when the hint wasn't taken. I wanted to be distracted from it, not being reminded of it constantly. It is difficult though.
I am with you their Elfie, I hope that they sort out this bl%&dy disease and find a cure for future.
Take care and speak soon
I have only just caught up with your post and firstly wanted to send you some virtual hugs, it sounds if you have been though so much, had a quick read of your profile and like many of us lung cancer comes as a complete shock as never experience symptoms until we develop mets, I was the same would never have imagined lung cancer as my pain symptoms were all from mets
It sounds like you now have a good team around you in the hospital and really hope they can get your pain under control and get your test results back quickly
Keep us updated and hope you are soon back home again
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