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The Roy Castle Lung Cancer Foundation
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Feeling so Frustrated

I feel we're no further forward... Mum had her appointment at the Marsden today and after 4 hours I just don't feel like we have any answers.. we dont know the grade or any prognosis, we've been told that they still not sure whats wrong with mums kidneys, she has a blockage, a 1cm lesion and swollen kidneys and until they find out what is wrong they wont be able to start chemotherapy, because mums kidneys are not fit enough, she has a tumor in her left lung, lining of the lung and lymph nodes in the chest wall, they can start mum on radiotherapy but she needs to see the radiotherapy consultant before she can start and clinic is full so she has to wait another week and half, they are sending her for a MRI on her brain because of her dizziness. I just feel let down, we are no further forward, and still dont know what is wrong with my mums kidneys... this has been going on since the 23rd January and I dont know how much more I can take, I feel extremely p'd off and needed to vent.

My sister went with my mum and dad and I feel like so many questions were left unanswered.. why is this process taking so long :(

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Lemon hi I don't understand why they are having problems figuring out her cancer and stage. I would definitely recommend sitting down with Dr's and tell them you want to know why they can't figure t what is going on with her kidneys. You tell them you want an answer now and the truth.don't be afraid of the Dr's. There either helping or putting you thru heck. They should be completely honest with you and mom and the rest of family members. I wish I could do something to help you. I'll be hear if you need me. Love susiejo1948

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It’s like we take one step forward and ten steps back, my sister has spoken to the hospital that did my mums ct on her kidneys and asked why they haven’t resent the results to the Marsden, they are now dealing with it as urgent, they wanted to give mum chemotherapy but said because of mums kidneys they want to find out what’s happening first and have said it’s possible mum may need a operation depending on what the blockage is.. so we’re left with radiotherapy and more waiting.. I’m just so worried all this waiting around is going to delay treatment and also prevent mum getting the best possible outcome.. I’m exshausted with worry and I really thought today we would be moving forward.. if only it wasn’t for these stupid kidneys 😔 xxx

How are you doing SusieJo? xx

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Lemon I feel for you and mom and your sister I care alot. I'm a six year lung cancer survivor who thought I was going to die. Plus a eight. Year breast cancer survivor. I want you all to have hope and don't give up keep fighting. They have new treatments out there that let's stage 3_4 to live longer and more treatments coming out. I wish you all the best. If you need me to talk or rant too I'm here so let your mom read this. So maybe she'll be a little less afraid.Love susiejo1948

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So sorry to hear you are having a hard time. Your mum is lucky to have you and your sister pushing the docs. Hope you don’t mind me giving my advice when u didn’t really ask for it... My advice would be keep on doing that (pushing the docs for speed and for answers) and also if you have the strength, read as much as you can about your mum’s condition (although I realise that must be very hard when you don’t have a clear diagnosis) so that you can ask questions and make decisions with the doctors (or encourage your mum to) and feel like you are taking control of your treatment. I felt just the same when I was first diagnosed, wanted to start treatment NOW and I pushed and pushed but my oncologist reassured me that a week here or there would not change things, getting the right diagnosis so we know what we’re dealing with is the priority, which does mean doing investigations. Sending you love and strength x

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Thank you Clare, I’ve been trying to stay positive for so long but today I’ve woken up feeling so angry and upset, the panic feeling I had back in january when mum was first diagnosed has come rushing back and knocked the life out of me 😔 xxx

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Oh that sounds so hard. I find it’s just not possible to stay positive every day and sometimes it feels oppressive and very unhelpful when people tell me that’s how I should be. It’s so hard being where you are now with no answers just questions and panic. Love and hugs xx

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We have been on the phone all morning to the urology department to get mums kidney results, no answer, have emailed them also, I dont understand how its been left to us to do, 3 weeks they have been sitting on mums results and they cant give any explanation as to why it has happened, mum is crying where she is in so much pain and I just feel she has been left... waiting again for another appointment and feeling like nothing is being done for her, she just wants to start some kind of treatment so she can at least feel like something is being done :(

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Try calling the hospital where her urology department is and asking for the medical secretary and if no joy, ask for the medical director of the Trust and explain the situation. The hospitals have targets they should be meeting for cancer and this sounds really poor. Ask the Marsden if they can do any chasing of the urology department even if at another Trust as this will impact on her lung cancer care and treatment. Personally I wouldn't read up until you know what you're dealing with or you could waste precious time and emotional energy on things that may not be relevant. Better to chase the doctors. Also contact PALS or the relevant Clinical Commissioning Group for the Trust or Healthwatch and seek their advice to get a speedier treatment pathway. good luck. it is so hard.

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My sister finally got through to the Urology department after 4 emails and 3 voicemails left this morning, they said that they cant give a reason why mums scan has not been reviewed (3 weeks) they have now put her on the meeting list to be reviewed on Thursday, this has then got to go back to the chest clinic (even though the nurse said to my sister this morning we dont specialise in kidneys) for them to forward to the marsden, mum has a Brain MRI on Thursday and we are hoping we will hear from the radiotherapy consultant for her appointment she has to go to before setting a date to start treatment. I went to see my mum today and shes just so upset, I think it's her kidneys that are giving her the most pain, and it's heartbreaking. I guess we have to be patient and wait now but it's so hard, I am so scared of losing my mum and I'm so scared that the 1 cm lesion on her kidney is cancer too which the marsden have said would be completely separate to her lung cancer, although mum does have a kidney stone also confirmed. I'm feeling really irritated today xxx

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Hi,

JanetteR57 has given you good advice.Pain from kidney stones can be severe and if your mum is experiencing severe pain she should be given medication to control it.If her pain is not under control ask her GP to reassess her medication. Hopefully a plan of care will be made tomorrow once the meeting and MRI brain scan takes place. Write down any questions you have before you go to the next hospital appointment.

Kind regards,

All the team at the "Ask the nurse" helpline.

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