Has anyone else experienced this ...

.. treatment through their cancer journey! My mum was diagnosed with stage 4 ovarian cancer but my god! The way she has been treated has baffled, shocked, and terrified me!  

First off her diagnoses was a nightmare! A lump was found in her neck in January when she went in for an examination for something else! I’ll try and make a long story short but after appointments after appointment and the doctor saying “I think it’s ovarian ..... but it’s not my job to diagnose that, it’s up to the women’s hospital”  there was a couple of appointments like that which was extremely frustrating! 

She was finally told what it was! Where it was! This took about 2 months! 

Every time we go to a new appointment she has cancer in a new place! And we go “oh that’s new” and they say no that’s always been there since your diagnosis! 

Shes actually been to an appointment and the nurse said “I don’t actually know why you’ve been booked in to this appointment” 

weve been to an appointment where one doctor has told us where the cancer is, what they are going to do from there! He’s gone “I’ll get the official doctor to come in now” and then that doctor has said exactly the same thing!! (What’s the point)

she was put on chemo and was told 3 cycles! No one told her what was happening after these 3 cycles! When we asked the chemo nurse what happens now after the 3rd cycle she looked confused and said “you’re not on 3 cycles you’re on 6, the doctor will explain on your next appointment” 

shes been put forward for surgery! She discussed everything with the doctor what was going to happen everything! Then she went to see the anesthetist who said “so we are doing key hole surgery” never in any appointment have they mentioned that and when my mum corrected him he went “oh yeh” so that doesn’t fill us with confidence at all!! She was told to cancel chemo and what for her appointment in 3 weeks! 

Ahes phoned today, was told she wasn’t on the system and to phone someone else! So she did and was told again you’re not on the system “you’ve requested to be done at the royal hospital” and she flipped! She hasn’t! The doctor requested that! Because she has gall stones that need taking out as well!! And they said “well it’s a long we wait for that hospital you requested” again! She didn’t request it the doctor did! 

 

No one seems ro care. No one seems to have clue what’s supposed to be happening! Now my mums crying on the phone to this stranger saying you just want me to die!! 

 

And I just can’t cope anymore! She’s been treated shockingly! And I just don’t know what to do to help her! She hasn’t had chemo in 4 weeks now! She doesn’t know what’s happening she doesn’t know who to speak to cause all the cancer nurses or Macmillan nurses keep saying is “don’t worry it’ll be sorted” it’s alrighr for them to say that! They don’t have stage 4 cancer dealing with doctors and nurses who don’t seem to have a clue what the other has said or organised! 

 

Sorry for the massive post post but I just don’t understand how this is happening with a cancer patient! 

  • I am so very sorry for all you and your mum have been going through. I cannot say I have shared this experience but I wanted you to know that someone out here cares about this and you and your mum. I am not sure what to advise you on this but the one thing that comes to mind is maybe contacting somewhere like MacMillan and ask them for their advise and even intervention to get to the botton of what is happening with your mothers care, as it does seem rather irractic at best.

    I hope that you can get this sorted asap for your mums sake and also your, sorry I could not be of more help and I wish you all the very best and I will keep you both in my prayers. xxxx Karen

  • thank you for replying! 

    It’s so frustrating! She’s scared the cancer is growing/spreading in this time she has been made to wait with no chemo! She’s telling if she dies to sue everyone! It’s killing me and breaking my heart to hear my mum like that! Even her talking about her self dying is killing me! 

    Shes phoned the Macmillan and they just say not to worry! And she’s frustrated so she won’t phone them anymore! 

    She said she’s going to make a complaint with PALs on Monday! But in the mean time that doesn’t help the current situation she’s in! 

    Id phone the Macmillan my self but I don’t know the lady’s name or her number! 

    I just feel helpless for my poor mum! 

  • Bless you, you must be totally at your wits end and your mum well she is frightened and angry and feels like she has been deserted. I know she will not phone MacMillan again and you do not know who she spoke to but if I were you I would contact them yourself and explain the situation, I am sure you will get help. Heres some info for you.

    "I need support for myself or someone else

    The Macmillan Support Line can help with clinical, practical and financial information. Please call us on 0808 808 00 00 (7 days a week, 8am-8pm).  Calls to Macmillan's Support Line on 0808 808 00 00 are free on all mobile networks. Calls are also free of charge from all consumer landlines and mobile phones."

    I hope the above points you in the right direction. Also phone the hospital and speak to your mums consultants sectretary and ask for an urgent appoitment to see them as you have serious concerns and would like some answers.

    You say she has not had chemo in 4 weeks, how long ago was your mums original diagnosis? 

    I understand totally how you are feeling my husbands treatment has been delayed and it scares me the cancer which is advanced may spread, he is nit curable but they say treatable, yet he as yet has not been treated and I am told as well do not worry!!!!!!! You are npt alone me love ans I will keep you and your mum in my prayers.

     

    here anytime xxxxx