Advise on how to cope.

Hi Ste1,

I’m so sorry to hear you are having such a bad time at the moment. Please don’t think that you are being selfish - you have had a nasty shock which has left you with lots of worries and questions - you are reacting in a perfectly normal way. This stage in the diagnostic pathway is the worst - it is much easier when you have a firm diagnosis and treatment plan. There is lots of help out there - so please try not to let your worries consume you.

It’s good that they are progressing your appointments quickly - it will still feel like it’s taking forever, but it will give you the answers you need. The good news is, cancer is not the immediate death sentence that it once was - treatment is so much better now. I had a 4cm tumour diagnosed earlier this year - the scan showed that it was contained totally within my kidney so here I am now having had the kidney removed and the cancer is gone. No more treatment, just regular scans to check for any signs of recurrence. So your worries are totally justified but be aware that this may not be the total disaster you fear - and that’s the key point at the moment - dealing with that fear. If you don’t feel comfortable talking with your family & friends about how you are feeling, use the MacMillan support lines or the Kidney Cancer charity support lines to talk through your fears.

Genuinely, this may not be as bad as it at first appears so please take comfort in that. Hold your family close, let them and close friends help you. They all go through this journey with you and being open to accepting their concern will also help you, particularly during this period when the fear and stress can be overwhelming until you know exactly what you are dealing with. Be kind to yourself - recognise that you are under extreme stress - is there a manager at work who you feel comfortable explaining your current situation to? I found my employer to be really supportive and understanding - it’s a personal decision as to when you want to inform them of what is happening, but it can help to take some of the stress off you.

I hope my words can help you through this difficult time. Try to be optimistic- they have found a tumour, it’s being investigated and when you see the urologist they will be able to start giving you some answers and reassurance. It’s going to feel like a very long week, but that conversation with the urologist to discuss your scans will really help. Take someone with you if you can ( my husband asked all the questions. for me that I didn’t feel able to ask) and write down any questions you want to ask.

This is a journey and you’re not sure what’s over the mountain you see in front of you. You will get over that mountain. Just remember that the fear of the unknown is the worst - as you learn more about your personal diagnosis, it will get easier - honestly.

Hi 

I’m sorry to hear of your news and I hear you 

Firstly wow your dr/hospital team are working fast better than it was for ours, my husband has been diagnosed 7 weeks now and just had biopsy!

my husband has been exactly the same and as a wife I have had to just sit watch him lose weight (over a stone) be prodded and injected and feel helpless. My husband is still coming to terms with it he has stage 4 and moved to lungs so we are just waiting on biopsy results 

I Have found that he will talk to friends and he seems lifted when he does talk to them I have to force him to go out. But once out he is ok for a few hours. He is 53 still young and fit. You soon know who ur friends are but remember they probably are as shocked as you and don’t know what to say or scared to say the wrong thing. Dammed if u do dammed if u dont?  As for ur wife talk talk talk we are very open and always have been we have sat and cried these past 7 weeks to each other.  we are both scared ur wife has to look after u, the kids the house I don’t have children but I’m off work looking after him and trust me I’m bloody knackered so ur wife is Wonder Woman at the moment. If u r getting depressed it is understandable but tell talk to her and ask her to be open with you too. I even contacted  mcmillan on the phone I sobbed my heart out to them they were great they just listened. They can point u in the direction ref finances too or speak to ur mortgage ppl for now to help have u got  life insurance? I believe if u have they can help with ur mortgage 

I know I have spoken on the wife side of things but you need to talk to each other we have even touched on the worse case scenario too and it scares the living daylights out of us but main focus take one day at a time for now please 

ppl acknowledge this type of shock differently and react differently. The friends I thought would be there havnt and I have been amazed by those who have 

why us? What have we done ? U can drive ur self mental about it u r strong u will get through it my friend said to me you can withdraw toothpaste out of a tube but u can’t put it back so don’t worry about the ifs and buts focus on u and ur family if you lose a few friends who cares? U have made a few friends on here who do care and under stand what you and your family are going through 

If ur wife works get her signed off to support u more at home work should be 100% backing you

Stay focussed and strong you have got this and remember it’s ok to rant that’s what this group is here for you take care and keep us updated on your journey 

Hi and thank you so much for taking the time to reply. You have eased my mind a little and given me a few things to think about. Im glad things have gone well for you so far. As much as I would never want anyone to have to of gone through this it is so much more reassuring hearing it from someone who has. Thank you.  

Thank you for your reply I appreciate you taking time out of your day.  Me and my wife do talk and she is amazing. When she was 16 she lost her own Mum to cancer and the worst part for her she said was the depression from her Mum. Her Mum had cancer for around 5 years before passing and suffered severe depression. I can already feel myself getting depressed and don’t want to push her away. I’m completely aware she is going through this aswell and we have our joint worries and our own independent worries. She is such a positive upbeat person but is very empathetic and compassionate and literally takes on everyone’s pain around her. I just don’t want to ware her out or even have her recent me because I’m a mess. I’m know I need to pick myself up but at the moment it feels impossible. 

Hi - I just want to say you don't sound selfish at all.  You've had a huge shock and you wouldn't be "normal" if there wasn't a subsequent reaction to that.  

My suggestion is to be kind to yourself.  It takes ages to accept and come to terms with something like this.  I was where you are  in Nov 2021 aged 52.  "I'm too young for this sh1t" I thought.  Well, maybe, but we are where we are.  

If you can't cope at work, take some time out.  I took summer 2022 out and I used it to work out how to live with cancer.   

This part is the worst, because it's all uncertainty and waiting.  Once you start knocking off these appointments it gets better as the way forwards starts appearing out of the fog.  

Kidney cancer is not the End.  There's loads of people on here who have had a kidney removed and are getting on with their life.  There's also people, like me, where the cancer spread to other organs and we have it under control  with treatment.  

Thank you for your kind words. I’m just glad I’ve joined this forum. People around me are saying stay strong and be positive and all the stuff I’ve probably said to other people over the years. But until this has hit me I had no idea how it feels and the emotions and thoughts that go with it. At the moment it just feels like I can never be happy ever again. Thank you again and I wish you well. 

It sounds like how you feel is just how most people do on getting such a shock. Like others have said at this early stage that the unknown "what happens next" is probably the worst feeling. As you learn more about treatments etc it will feel a bit better but there are bound to still be ups and downs. Main thing is to not beat yourself up and think you aren't managing as well as other people -  you are! I've always found a good cry and honest conversation works wonders when things get on top of you. There's a lot of different treatments available now - I've had several over my 3 years living with stage 4 RCC - immunotherapy, targeted drugs, a bit of radiotherapy and the one that amazed me most stereotactic radiosurgery to get rid of a couple of brain metastases. They all helped!

Hi

Just saw your post – some comments from my experiences!

Routine tests In September revealed a UTI – then an ultrasound, then a CT scan, then the results in quick succession…kidney cancer diagnosis! Like you I was massively surprised having had a very fortunate life illness wise. The specialist reckoned that the tumour had been inside me for around five years!

A couple of weeks later I was in Charing Cross hospital having the operation done (this was a partial nephrectomy so just the actual tumour was removed which was the recommended way to go; not sure what you know about this but this was done as a robotic operation with the surgeon sitting over one side of the room operating the machine). That was on 19th October; I was in there four nights which I wasn't expecting but was glad I did.

Admittedly, the first few days after the operation were tough in terms of discomfort but I was loaded up on paracetamol and morphine. I was lucky that Charing Cross is one of the best hospitals around so I was in good hands. The situation became further complicated by a sudden bleed around the affected area which meant that I needed to go back into Charing Cross for a further couple of nights.

Fast forward and I'm now two months out from the operation and in a much better place.  I start a course of nine immunotherapy injections on Monday at Charing Cross which was recommended way to go by the surgeon as opposed to any chemotherapy or radiotherapy.

It really is a one day at a time situation and the recovery is slow progress. Initially I was just doing a walk around the block and getting breathless after just a few 100 metres; I am now up to around a mile walk each day and improving.

One final thing; do tell your car insurers about your condition; having done years in the insurance industry I know the importance of at least making them aware of a condition rather than having a claim turned down on the basis of non disclosure. My surgeon said that as long as I could perform an emergency stop I was OK to drive. Ditto any trip or annual travel insurance you might have.

The above is just a snapshot but I hope it helps; do feel free to fire any questions help me that you want to!

Thank you for your kind words and  hope  you’re ok. 

Thank you so much for your reply and I hope you’re ok.