diagnosed last night. Help

Dear Harvester, the what ifs are often worse than the reality, especially when the what ifs hit u in the night/early morning.

Do u have a date for surgery yet? How old r your daughters? I was fortunate - in a  way ! -: that my 10 year old son had just had his appendix out, so he knew the sort of thing I  was gonna have.

I'd been told that surgery to remove the kidney would  be it, done n dusted, so I told my son I had cancer but once I'd had the surgery that would be the end of it. Give your daughters the truth but try not to infect them with your feelings of panic. They'll know something's up by the atmosphere in the house, or on the phone  - if  they r  older n have left home.

It's useful to take things a day at a time but to get support if/ when u need it. You'll find this among members here but also try the helpline on 0808 808 0000. They provide not only emotional support   but also  can give financial advice, if that's an issue.

A community champion will no doubt be in touch soon. I'm just an ordinary member. S/he will have plenty to add to my suggestions.

Above all, DON'T PANIC Mr Mainwaring, as they were always saying on Dad's army. Yes, u need to keep your sense of humour too.

Deep breaths, be kind to yourself, you've had a nasty shock. Sending u a hug

Thank you so much for you answer. I’m sitting in a car park not sure what to do next. Will ring the number and talk to someone.  My daughters are in their early 20s. One has move back home after graduating and the other is home from uni for the summer. I need to get my head together before I talk to them. Calm the panic, as you said. I don’t want this for them but I don’t have a choice so I need to make it as easy as possible. Thank you for your kind words. I would love to know more about your story but maybe need to gather myself  before asking for that. Thank you for answering good to know I’m not alone. 

Hello Harvester,

Welcome to the Kidney cancer group although I am sorry that you have had to join us.

I see that you posted in the New to the site group and Mike the highlander gave you some excellent advice.

Any cancer diagnosis is scary and the fact that things generally move so quickly afterwards can increase your anxiety rather than reassuring you.  I chose not to tell most people that I had cancer but just that I had to go to hospital and would rather not say what for.  I deliberately did this as I knew that there would be lots of questions from others if I said it was cancer and you also tend to get lots of questionable advice from friends and colleagues, well intentioned but often useless.

I wanted to know more about my situation and what to expect before I started talking to most people and in fact did not let most of my friends and colleagues know until after the operation.

You will still worry that you are the exception but kidney cancer is usually regarded as a slow growing cancer and you may have had this for some years before it has been found.  Surgery gives you the best chance of getting rid of the cancer totally with no further treatment required.  The surgery is major and is likely to take you some months to get over but it is routine surgery carried out on a regular basis and you can function with less than half a kidney if required.

You will undergo some pre-op assessments and will meet with your surgeon before your operation and will have the opportunity to ask any questions you might have.  It is a good idea to write them down as you think of them and do not be embarrassed to take your list of questions with you to your appointments.  Some people prefer to take their partner with them and get them to ask the questions and write down the answers as it can be difficult to take in the replies at the time.

After surgery the tumour will be sent to histology and you will have an appointment (about 6 weeks) after the operation when they will tell you what they found.

You don't mention how old your daughters are.  My son was about seven so we kept the information to a minimum for him and asked him not to tell anyone else.  I do feel it is important to let family know but I also told them how I wanted them to respond to me.  I did not want to have to deal with their questions and worries, be given stories of others that had overcome cancer or lifestyle advice.  Practical support would be appreciated and I was happy for them to talk amongst themselves but please do not tell anyone other than the people that I had already decided to tell.

Do not forget that you can go to see your GP as having discussed this with them you may decide that some anti anxiety medication might be beneficial.  Lots of people do this particularly in the short term when they are first diagnosed.  Try to stay in the moment and focus on what you are doing which I know is easier said than done.  Anything which can distract you for a while gives you a break although the worries do have a nasty habit of rushing back in when you least expect them.

I know that others will be along soon so do not feel that you are alone in this.  You are more than welcome to come back and ask further questions and please let us know how you are getting on.

love and hugs,

Gragon xx

Dear Harvester

i found the lead up to diagnosis the worst part. I was diagnosed with lymphoma and kidney cancer at the same time! I went into complete panic mode. I have never suffered from anxiety before but it was crippling. My gp gave me temporary sleeping pills which helped. He said I was suffering from shock. For a few weeks I didn’t want to go anywhere or see anyone and was signed off from work. I decided to get the news out in the open and told my grown up children first followed by family and friends. Although supportive none of them really understood how I was feeling but those on this site did!! Make sure that you talk to someone that understands. Once I knew the kidney was coming out I started to feel in control and my anxiety went. I was determined to get as fit as I could for the operation and walked miles. This also gave me thinking time. You will get through it. I am six months down the line now and have my six months check up scan tomorrow. I came to the conclusion that you can’t enjoy the present if you worry about the future and am living life to the full at the moment. 

Also I kept a notebook. A sort of diary with notes about appointments and how I was feeling. It helped writing down my fears and then closing the book on them!

Oh wow. Thank you all so much. So you have all made me think about what I can do. I hadn’t thought of that. 

Getting fit before surgery is something I could actually do to help this situation. Didn’t realise how much I needed to hear I could do something. And keeping a notebook is good too.  I am a practical person 

daughters are both in 20s, one just graduated and moved home last year. The other is home from uni for the summer. We are so close since my ex husband and I divorced when they were young and we were on our own for so long. I met my current partner 10 years ago and he is amazing. He was so strong last night through the diagnosis and the immediate aftermath.  

I am going to tell one person at work today.  I think I will want to keep  going and work on as much as possible cos I think I would go mad with my own thoughts. But not today. I pulled into a car park on the way in this morning and couldn’t stop crying. Today is. It the day. 

Sorry I meant to say today is not the day. To go to work and ralk

to someone. 

Thanks so much for your answers. I will come back because o think I will have some questions, if you don’t mind? But today I think I need to go for a long walk and get my head in a better place. 

Thanks again. You all made me feel a little better and a lot less alone

U can see more about me - or anyone else -  on our profiles. Just click on the name double underlined. It's a link.

Btw, don't b put off by talk of secondaries, eg I've had several but the point is I'm still here 14+ years after my nephrectomy.

Morning all. 

Ive been feeling nauseous since the build up to diagnosis and the worse during the aftermath of the last 36 hours. 

I woke up at 5 this morning feeling awful. Retching and running to the loo. I really don’t feel well. I am paranoid about everything I feel. Is this likely to be anxiety ? 

I do think that’s anxiety. I’ve never been an anxious person and I didn’t recognise myself! I couldn’t eat sleep or think about anything else. Food tasted like cardboard and felt stuck in my throat. I lost weight very quickly. My hands shook and I just felt terrible. Once I had a date for my nephrectomy this stage passed as I then felt I had regained some control of my life. My gp said that all this was a very natural reaction to shock. Please go and talk to your gp. I’m 65 and was diagnosed last November and had my nephrectomy this January. I feel really well now but life has changed. I still think about having cancer everyday but the anxiety has gone. You will get through it and talking it through with people who have ‘walked the walk’ really helped me and hopefully will help you too.