Hi all

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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 sorry to hear your bad news, I myself was told my diagnosis the 16th , stage 4 stomach cancer , was told  t they would refer me for urgent appointment with oncologist, still waiting to hear, it’s not easy just keep as positive as you can, don’t let your mind create nightmare scenarios, I’m taking one day at a time , every morning I look in bathroom mirror and tell myself we’re gonna beat this shit, hope you hear something soon but being holiday season may be next week now, talk soon

  • Sorry to hear your news. It can of course be a mighty pain in the sofa muscles to have to wait the wait: but rest assured you have not been forgotten by your oncology team and ancilliaries. Two and a half months seems a long time to you but they have to devise a Plan of Ops that is best for you. Its a highly complex business and must be done RIGHT. No half measures. No vaccilation despite workloads 

    Top tip: Google or DuckDuckGo are the WORST doctors on the planet. Most results will give you out of date research to look at (Hi Sunitinib!) or a kaleidoscope of irrelevant nonsense, some of it pure rubbish or misleading 'advice'. A lot of it is out of date.

    2nd Top tip: 

    Surround yourself with all the things you love: remember that this tumour is not all of you, its just a part of you. Try to fully enjoy those things that are precious to you and "flip the bird" at this unwanted intrusion. I have been on the cancer treadmill for near 12 years (stage IV), had over 25 CAT or MRI scans and have learned that your team is working darned hard to give you their best. I promise you.

    Keep fighting the Good Fight my friend.

    "Eskimo. Arapaho. Move their bodies. To and fro."-- Ian Dury.

  • That's the spirit! Sound advice right here.

    "Eskimo. Arapaho. Move their bodies. To and fro."-- Ian Dury.

  • Thank you for replying. Most days I’m okay it’s just every now and then it hits me like a tidal wave, I hope you get you get your appt soon. I’ve got mine through yesterday for Monday 6th and the relief is huge 

  • Thank you so much. I love tip 2! Yesterday was a much better day as I did do things I love! I think most days I’m doing okay but then every now and then it just hits me. 

  • This is brilliant to read. Yea, this evil we are fighting tooth and nail can hit us like a brick when we just stop to think for a moment, caught unawares. Dont let it come between you and all you love, adore or are inspired by. Its just a tiny part of you all things considered. The whole you is much bigger, much smarter...

    Sounds like you're doing real well. Fantastic!

    "Eskimo. Arapaho. Move their bodies. To and fro."-- Ian Dury.

  • Hi apple 16, I was in much the same boat as yourself. The waiting for word what was the plan of treatment was brutal, felt like I was in total limbo and forgotten about. I even went to the GP to ask I was on the system for treatment (I was of course).

    I cant write anything better than what Billy S wrote in his reply, your cancer team will be working very hard to get you the best and correct treatment that will help you the most. The macmillan helpline was a great help (0808 239 9397) speaking to a stranger who understands can be a great relief  and are very helpful answering questions .

    This is my first time on here and I’m so glad too see people like Jon and Billy having such positive adviceThumbsup

    All the best on the 6th Apple.