Hi I’ve recently found out I have a large kidney on my tumour. They have also found areas for concern in three places of bones plus the lymph node next to my kidney has similar characteristics to the tumour and is also large. I’ve since had a further scan to check my lungs and chest area and a biopsy to determine the type of cancer (6th December ). The experts met on Friday the 18th to discuss my case and treatment. This waiting is driving me around the bend as I still haven’t had an appointment through with the consultant. I’m getting so frustrated now waiting as nothing feels likes it’s moving . It’s now 2 1/2 months since the original Scan.
I have Bupa available through work and am Now wishing I had gone through them. I’ve looked into it during this time But felt like it was a backward step . How does everyone cope with the waiting?
Hi Apple16 and a very warm welcome to the Macmillan Community but sorry to hear about your ongoing diagnosis.
Navigating a cancer journey can be such a stressful and challenging time. I have been on my journey for over 25 years with two very rare types of blood cancer one being incurable. Waiting is an unfortunate part of the diagnostic journey….. back in 1999 it took over a year, 6 biopsies and a CT scan to eventually find the truth…… thankfully not all cancers take the same time.
As to how you deal with it?….. To be totally honest and this will sound very simplistic, some would even say naive..... The one thing I learned very early on in my 24+ years living and being treated for my 2 cancers was that I could throw ALL the worry and stress I could collect in the world at each situation and all this effort would actually make no difference what’s so ever to what I am told and what may happen in the future....... but will have a big effect on how I will mentally deal with it when issues comes along. park the stress, worry when you actually have something concrete to worry about and look to do things that you enjoy and distracts you.
Getting support from people who have walked or are walking the ‘exact same' journey can help you a lot.
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms)…… but I can see that you have already found our dedicated Kidney Cancer Support Group.
This group is a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support. To connect in with the group please click on the link below…….
……. and once the group page opens you you can then introduce yourself to the group by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
During the quit times when the space between the ears goes into overdrive have a note book next to you (not your phone) and start to log down all the questions you need answers for……
((hugs))
