Hi Richard

Just logged on and seen you have no replies as yet so though I know nothing about your form of genetic cancer just wanted to welcome you to this forum and thank you for sharing your story. You have been on quite a journey which cannot have been an easy one bearing in mind you lost  your father at an early age.  As you rightly say with the wonders of improving treatment/surgery you are still fighting on  I wish you all the best with the results you now await and do come and share again. I suspect your cancer if pretty rare and there may not be many here who know of it specifically but there are many friendly supportive people who chat/read posts so hope you will not feel alone.  Best wishes Jules54

Hi Richard,

As Jules says welcome to this freindly site. Yours is a very intricate and complex history and with your determination it is a very admirable story. You also have time and energy to care for others, amazing.

The only condition within VHL that I recognise are the phaeocromocytomas, and this condition in itself has huge symptoms to get through.

I wish you all the luck with future treatments Richard, and hear your message.  Annabel.

Thanks both. I suppose that we are all forced to adapt to our new circumstances - 'sink or swim' - and get on as best we can.

My personal preference is to be told things as they are, if necessary over the phone rather than a face to face meeting. I've noticed a trend with doctors of late not to use the 'C' word, which I find not particularly helpful and more than a bit patronising. It's my body, not theirs, and I'm entitled to know everything that is going on! R.

Hello Richard

Feeling very angry and extremely sorry for myself, I blogged a very 'snot fair, snot fair' diatribe and then ..... read yours.  The last few lines inspired me so much - thankyou!

When the chips are down, just pick 'em up and eat 'em!

Good luck to you.  xx

Thanks; I think everyone should express their pain and frustration in the way that is the best for them. It's all part of the self-grieving process. I suppose that I'm a fairly pragmatic sort of guy and that's my way of handling it. Also to be as self informed and self taught about one's condition, because as sure as hell you'll generally only be told what you need to know. R.

p.s. have replied to your own post.

Hi Richard,

So agree with your first line! It took me a while (my hubby diagnosed with incurable mesothelioma just over a year ago now) but I could have sunk under the total feeling of frustration/anger at what had hit us.As it is we are a year on, still here, still coping day to day, week in week out. Hubby tires easily but does what he can when he can. He chose to be told as much as possible about his condition and his team of medical support put him in touch with a charity which specialises in his illness and the hour with their representative in our own home was extremely helpful in putting things in perspective(and helping with getting financial support as his is industry linked (asbestos) disease)).  This forum helped me so much in gaining control and understanding my feelings (particularly the selfish thoughts which are now banished).  Life is an emotional rollercoaster (even without cancer) and I  have learned to deal with it one step at a time. We still plan for the future but in little steps and rejoice when we achieve our goals albeit small ones. There is no such thing as a normal day, this is our life and we get one go at it.  My perspective of life has taken on a whole new meaning and I have probably changed a lot.  We are in our 37 yr of marriage and its hard watching my once  healthy strong engineer who travelled the world now sleeping more due to lack of energy but I am luckier than some and try to appreciate life on a daily basis. Take care of yourself. Jules

Thanks Jules, and I share your philosophy: a step at a time. Live each day for what it might bring. Being selfish? - well, I'm sure we're entitled to a little bit of that from time to time, but it will never solve anything and ultimately drive people away.

Three people close to my heart died of cancer recently, and each handled it in their own way. An aunt-in-law was diagnosed with metastatic cancer of unknown origin which had settled in her stomach. It was all very quick and all very unpleasant. She even ripped off the cross she had worn round her neck all her life, so bitter was she. At the other extreme, a good friend - terminal with what seemed like metastatic everything - simply pretended there was nothing wrong with him and lived his life as normal until he took to his bed. In the middle, my ex, faced with the inevitable prognosis which she was given, declined all treatment and went on her way. She was a great believer in fate..............  they all had their own characters and beliefs and dealt with their illness in their own ways. R.

Hi, i would like to let anyone on here know that i run a support group for vhl...My 18yr old son has it and myself and a few others have recently set up our own vhl uk / ireland vhl group..I would love for Richard or anyone else who suffers from vhl or knows anyone with it to please get in touch..We are very excited at the minute about finding more patients and are able to offer help and support to everyone..I have recently come back from a meeting in budapest with the leaders of the european vhl charities and progress is being made but we really need as many people as possible to help us move forward and raise awareness for vhl..so please get in touch with me on here or on my facebook page..you can find me as ali barry..or support vhl..

look forward to hearing from you all. Everyone is welcome , we would love anyone who suffers from any sort of cancer or rare disease to get in touch. To find a cure for vhl will also help towards finding cures for other cancers too.

Alison Barry

Hi Richard, hope you are doing well. I have only signed up here. I have VHL so I can see what you are going through it’s not an easy disease to deal with. I wondered if you have heard of VHL patient having a lesion in the right inner ear on the inferior vestibular nerve I have been diagnosed with this I am concerned they mis diagnosing me and really it’s an Endolymphatic sac tumor but the scan report says no evidence of an Endolymphatic sac tumor. Have you or know anyone that had ended up with a VHL lesion on their right vestibular nerve?