Newly diagnosed, age 30 - T3a RCC

Hey , I am T3 and I was convinced my had spread but it hadn’t and my tumour was 13 by 11 by 10 . I was all over the place for a while but am a lot calmer now . You will get there. 

Thank you so much for your lovely reply. 

The CNS did get back to me to say that they have definitely sorted the referral but it's taking about 3 weeks to receive appointments at the moment, which is crazy, considering I'm supposed to have had the appointment within 2 weeks!

I spoke with a lovely person on the Macmillan online chat support and they helped to calm me down a bit.

I'm still not feeling good but I'm going to contact my GP tomorrow to try and get some suitable pain medication at least.

I'm so sorry to hear about your recurrences of cancer but happy to know you're battling through it!

Vi

Dear Violet I have just caught up with your post. I had a bad time catching up with appointments including being cancelled when we had waited two hours in clinic. We did have a private consultation but they messed up the time and it was the wrong surgeon. My GP chased up the referral but that did nothing. It seems like they have their own way of working. 
To prepare me for surgery I have been having reflexology and one session of hypnosis. They have helped. I felt very low during the process and asked for sleeping tablets. Talking does help but I know that people can’t be with us 24 hours a day. 
It will get better once the results of the scans go to the MDT and a treatment plan is made for you.

I'm glad you're calmer now, phil. May I ask if anything in particular helped you to feel better?

Thanks for your reply, EJ. It sounds like you've had a similar experience to me with the incompetence shown by some of the people that we expect to know what they're doing! I'm glad you've found some relief with the hypnosis and reflexology. I may look into reflexology myself.

I totally agree . My sisters insisting I contacting pals . As is the cancer support group I found online they have a WhatsApp group and there all really supportive. I would tell you what it is but it’s men only haha I don’t have a child yet but my wife is pregnant it feels like your situation in the respect that they are trying to take my life away before she’s even arrived . If you feel you’re not getting the help and support you need then maybe pals is something you should also consider . 

Thanks Kyle, my friend has also told me I should contact PALS. I can't imagine how overwhelming it must be to go through all this with a baby on the way. I'm only a message away if you need to talk. 

Hi, not really . It just took time and though I still feel down at times I now feel that all the guessing games are over and the intense googling has stopped as I know exactly what’s going on . There is a loss of control which is hard to accept and worry  rabout family etc. we are stuck with this and our lives have changed and we will never be the same but we have to try and be as close to the old version of us we can be. I felt I was not in the room at times even when the living roomwas full of my kids . I now feel ‘in the room ‘ . It’s not like it used to be but my wife says’I have my husband back’ so thats good enough for me. I had some hypnotherapy sessions which helped . 

It’s not ideal . But I can either lay here and be defeatist or I can have the second biopsy and pray it goes right this time . I shed a few tears when she rang me and questioned whether they wanted to help me or not . But luckily someone at work got me refocused as did my wife . Three days off after today I shall get out for a nice couple of bike rides and dog walks 

My appointment at the Royal Hallamshire is next Friday! I feel a bit better now that I know when it is. It doesn't specify who it's with though, just "a member of the Urology team", so not sure if it'll be with the doctor/surgeon I was told about at the Rotherham appointment.