Recurrence after three months post nephrectomy?

i just don’t know how to be reassuring to our boys, I know they are going to ask if their Dad is going to die and I don’t have the answer. My youngest is a big worrier x

i just don’t know how to be reassuring to our boys, I know they are going to ask if their Dad is going to die and I don’t have the answer. My youngest is a big worrier x

Hello ,

I'm sorry to hear your news and can appreciate that there will be all sorts of things going through your mind at the moment.  It is a difficult time as everything that you thought you were going to do with your life is thrown into question and you are left with lots of uncertainty and confusion.  Do you know what type of Kidney cancer your husband has been diagnosed with as this can make a significant difference to the treatments available?  I have renal clear cell (RCC) which is the most common and which has more treatments available.  RCC is usually slow growing but I am no expert in this, just a fellow patient.

When I was first advised my cancer had recurred I was erroneously told by my Urologist that I had terminal cancer.  My Oncologist later corrected this to advise me that until I had exhausted all the treatment options I was incurable rather than terminal.  However, this did mean that initially I felt I had to get everything in place for my death, including telling my then 9 year old son.

At my hospital there is a Macmillan nurse specialist attached to the Urology unit and my wife and I approached her to discuss what and how to inform him.  We had a chat with her and she also provided a booklet about how to talk to children about cancer. (click here)  We decided to be fully open with him but to phrase things in a way he could understand and we needed to be aware of how much he wanted to hear.  By this time I had started treatment and as we explained to him what the situation was he quite openly stated that "I don't want to know if you are going to die".  I am now nearly five years on and only recently told him that I had initially been told that I was terminal.  There is also a specialist website for teenagers who have a parent with cancer called "Riprap", I have put a link here (click here) but have no direct experience of the site myself.  I know it is on Macmillan's list of approved websites.  It may be that your children have questions that they want to ask that they do not feel able to ask you for fear of upsetting you.

We contacted the pastoral team at my son's school and explained the situation and they were marvellous.  They talked to him on a regular basis and when he moved to his senior school they liaised with them as well to ensure a smooth hand over.  He now has a "get out of class card" which if a subject comes up that he finds upsetting he can simply show to the teacher to enable him to leave the class immediately without having to explain in front of all the class and he can then either take five minutes or go to the pastoral care room to chat to the staff there.  If a parent is terminally ill then an allowance can be made with regards to their exam results for their GCE's and A levels to take account of the additional stress and worry.

He has also been referred to the "Young Carers" as although I physically look after myself I know that he avoids certain subject with me in case he upsets me, sometimes talking to my wife instead, and he also sometimes does not argue back as he might as he thinks I am probably stressed about my illness.  This is not anything that I have asked for but something that he and other young people often take upon themselves and as such they qualify as Young Carers.

If there is not a nurse specialist at the hospital you can apply for a Macmillan nurse.  I have included a link here to advise how you could do this. ( click here).  I am not sure how long this process might take but you might also consider ringing the Macmillan helpline.  They are very good at offering emotional support but can also help answer those practical questions which run through your head in the background about finances, work, transport.  They helped me look at my life insurance, employment right, pension and took a lot of the practical concerns so that I was able to focus on the health matters.  You can call them on 0808 808 00 00 everyday between 8am and 8pm.

I found that once I had addressed each question I was able to relax just a little bit more as I began to feel back in control again.  The emotional roller coaster will continue as the treatments continue and you have to wait for scans to find out what has happened so get what support you need in place for you and your children and it can make things easier to manage.  If people ask you "is there anything I can do" then if you do need something you can say that "actually that would be really helpful if you could …." 

I hope that you find some of these suggestions useful and I wish you and your family all the best.

love and hugs,

Gragon x

Thank you so much for your detailed reply it really is appreciated. I want to talk to someone first before telling the boys but the eldest is already picking up something is wrong. My partner has RCC but it’s quite aggressive. he has a radical nephrectomy in august and it’s already come back and at several sites in the abdomen. do you mind me asking what treatment you had, glad to hear you are still going strong five years on. We are trying to stay positive but it’s like everything has been pulled from under us. We both absolutely love christmas but at the moment can’t muster anything, but I know we must for the boys.

a good idea talking to the school, once we’ve told the boys I will get onto both schools. 

thank you again for replying it’s so good to be able to chat to people in the same situation.

x

Gragon I need a “love” button for your answer. I told my sons school and they  forgot. that’s fantastic advice x

Yes @gragon,so  much great  info n advice to

Hi ,

I'm more than happy to share, I'm on Pazopanib, a targeted biological therapy.  At the time I was diagnosed immunotherapy treatments were not generally available for kidney cancer although I am sure that they were being trialled at that time.  I'm also sure that the oncologist has looked at all the options and decided that this is the best one under the circumstances but don't feel like you can't question their decision and ask if there are alternatives and ask why they chose this one..

If you click on my Username it gives a lot of detail in my profile (sometimes I just don't know when to stop).  Depending upon how much detail they have put in you can often learn quite a lot from reading someone's profile.

I struggled to adjust to start with but after a while I decided that I would rather plan for things like Christmas, theatre, visits to friends etc as if I could make it then great.  If I didn't plan anything and could have done so then I would be sitting there feeling physically fine but miserable because I would be aware that I should have been having a good time.  If things had gone pear shaped then my family would not be more miserable simply because they were not able to enjoy a big Christmas dinner, family get together, exchanging gifts or whatever your family traditions are.  

I'm not much of one for quotes but I do like this one to motivate myself

I want a "love" button for thisGragon !

Totally agree Gragon. We often think that we’re actually living a pretty great life inspite  of the cancer. Planning lovely things and believing they can and will happen has kept me sane. In fact I think probably all of us. 

I really hope that once you know the treatment plan and you get started , you feel some sense of control again. This interim bit is scary and my heart goes out to you.