Why do i feel so well and normal

Hi Kezburt,

I also have kidney cancer with spread to the lungs and take Pazopanib and have done so for the past four and a half years.  Double click on my username to see my profile).  My oncologist was upset when I told him that my urologist had advised me when the cancer recurred following surgery that I was terminal.  He advised me that so long as I was responding to treatment and there were alternative treatments available then I was incurable.  I did feel guilty for a while as I had told all my family and friends that I was terminal but then had to explain to them that although the cancer was favourite to kill me there would now be opportunities for me to die in other more interesting ways as it could take some time.

We have been fortunate that these new medications have been developed and are now widely available.  Had we developed the disease a few years earlier it is very likely that we would have been dead.  Had we developed a different type of cancer we might have been dead.

I feel guilty in that because of my circumstances I am not experiencing any financial hardship, I have talked to others who have had to sell their homes and just yesterday was taking to someone in New Zealand who has to pay £5000 each month to receive sunitinib.  The first of the biological therapies available for kidney cancer and freely available via the NHS in the UK.

I have medical issues but not really related to my cancer and am generally fairly healthy with no hospital stays since being diagnosed with advanced cancer.  My hair has also turned white but even then it was a dirty grey before so is an improvement so far as I am concerned.

I think guilt is a normal part of what we experience but there is no reason to do so, and I am sure that your family, friends and other community members are pleased that you are continuing to do so well.  I know that I am and wish you all the best for the future,

Gragon x

Hi

I think it’s quite normal to feel guilty and I don’t think it’s your fault. Like you and Gragon I started this journey of living with incurable cancer with the notion that I was terminal. The cancer was back, the consultant told me the only thing they could offer was palliative chemo and the mortgage life insurance paid out on the basis I had less than 12 months to live. That was over three years ago. 

At first, it felt like I was dying of cancer. It felt like there was no future and I really struggled with anger and sadness. I was able to beat a path to the door of a consultant who got me onto one of the new biological therapies and that kept me going for 15 months. I’m now on a clinical trial. 

Gradually I’ve been able to shift my mindset to living with cancer - and living with the side effects of so much treatment. I’ve lost a lot of strength and had to give up work. But I live a pretty normal life a lot of the time. I’m often told “you look so well”. 

Why do I feel guilty? I’ve been pretty open about my cancer and frankly I didn’t expect to be here now. I almost feel I have to explain myself to the friends who didn’t either. I’ve known people with similar diagnoses to mine who have not been able to get onto the newer treatments. 

I think cancer care is changing rapidly for many people. Patients who would quite recently have been seen as terminal are, thanks to new drugs, now seen as treatable but not curable. Public thinking hasn’t really caught up with this - and neither, in many cases, have the conversations that oncologists have with patients. 

It’s possible that the guilt is part of grieving - the grieving for the future I had imagined for myself. Grief is complex and has many components including sadness, anger and yes, guilt. I’m kind of at the acceptance stage now but it’s a fluid state. I slip in and out of these feelings. 

I hope the tablets keep doing their job and that you find a way to let go of the guilt 

xx