New to the group

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Hi, I joined as I'm hoping to communicate with other people in the same boat.

I lost my left kidney 4 years ago with a radical nephrectomy, with the tumour also inside my vena cava, making the surgery very long (I actulally held the record at Addenbrookes for the longest operation of its type!) 

Last year in April, I was told that i had a tumour on my right adrenal gland and so, back I went to have it taken out.

October last year I was told it had come back, in more than one place and that, that was it, immunotherapy to try and slow things down, but I was basically on a 2 - 5 year lif expectancy.

What's really getting to me is that I was a very active person, I danced, did Landscape gardening and loads of other stuff and now the bad stomach, tiredness and definitely depression is soul destroying.

I guess I'm saying i'm sick and tired of being sick and tired, I know the alternative is a pine box sooner rather than later.

I'm just looking to hear from others on how you cope, what you do for extra energy, anything really

thanks

  • Hi there, welcome, but sorry to meet you here.  

    It's a bit tricky because everyone reacts differently to treatment, even for the same diagnosis and cancer type.  I'm on  immunotherapy (ipi/nivo) too.  My dips in energy have generally been when the reaction to the drug hasn't been optimal.  Fixing that (steroids) and then re-starting the treatment has meant "normality" has been restored.  But I notice if I do too much, by falling asleep in the evenings.  

    I think the first adjustment I made was to accept that I couldn't compare life before cancer with after cancer.  Neither expect them to be the same.  I ran and cycled and I was preparing to think these activities may not be possible in the new world.  So I looked for alternative activities and my previous sports clubs became a stretch target, a "maybe".  

    Have you thought about phoning the Macmillan helpline?  Or speaking to someone in your team?  They may be able to give you something to alleviate how you are feeling.   It's just that tiredness and uncertainty are run-of-the-mill stuff for us all, but you've got "extras" in there, the stomach and the depression (and no wonder from what you describe).  

  • So sorry to hear about your situation. I had a radical 13 weeks ago. Apparently all is well but I can not help constantly worrying about what the future might hold. The statistics are not reassuring. I hope you get some proper support. You are on the right lines Macmillan is marvellous. 

  • Hi Graham

    I have had a similiar operation to you. Diagnosed in Feb 2023. 9cm tumour in right kidney and also cancer (thrombosis) in my Vena Cava near my heart. I was put on Immunology treatment to reduce the cancer (size) so that it would increase the success and lower the possibilities of bleeding out during the operation. 

    I reacted well to the Immunology treatment reducing the cancer in both areas which mean't the operation could all be done with one very large "L" shaped incision running from below my sternum to my navel and across to my right side.Without the Immunology treatment the operation would have been more complicated, involving heart surgeons and would have taken place in London instead of Addenbrookes a 35 min drive away. 

    I had the operation at the end of September 23. Survived. Kidney removed, and cancer removed in Vena Cava or at least they think it was all removed. I recently (last week) had a second CT, MRI to confirm if shadow in Vena Cava is clot or new cancer growth. I should know at next Apt (Mid March) if shadow is growing. This will determin my new health plan going forward. 

    Like you Graham I am sick of being tired with little energy. Feels like someone's hid any "MoJo" I had for life. When I do exert myself and try and get the adrenaline pumping it gives me a short high and then I am bed bound for a couple of days as lethargy sets in. This is not me. I was working as a gardener at a Wedding Venue before and therefore fairly/very active. I now feel lazy and this is amplified by a heart condition "Arythmia" that I also suffer with. Somedays I feel like a bird in cage waiting to die and ultimately that has led me to posting on the forum to share my joy with the masses! Lol. I still have my humour thank god!...but in answer to your question: "How do you cope?" I don't know yet. 

    I do know that looking at the long term picture of my/your health and life expectancy, stops you from doing lot's of things. You start creating walls where there are none. And that is a problem, as you very quickly start shutting down any life experiences and cutting people out of your life.

    I can generally feel this cloud enveloping me. To stop it getting out of control I take on a very small task, could be as simple as phoning someone you've been meaning to phone or cleaning the shower or cooking a meal. It gives your brain something to focus on rather than the enormity of your failing health. The realisation that only YOU can kick-start this change is quite a defining moment. I guess we are discussing " our mental health" and it seems to be an area that is ignored with patients, post major surgery. 

    I don't know if anything in my ramblings makes any sense to your condition. It's reflective of my own experiences and not taken from any experts findings. It would be nice to hear from other Kidney/ Vena Cava cancer diagnosis. 

    Wishing you all the best Graham with your battle. 

    Simon. 

  • Hi Simon, how are you doing? 

    Thanks for the reply, I totally get and understand what you meant in your message. It is hard to get motivated some days. I, like you, try and achieve something every day, be it 10 minutes in the garden (like you I was a gardener/landscaper in my former life!) or even just going out and walking around a garden centre , as long as it has a good cafe where I can sit and have a cuppa and a bite to eat too.

    I've also learned to set my sights a little lower than I used to , and found some different hobbies to try that keep my mind active whilst not exhausting my body. I make terrariums out of cheap glass containers, some of them unsuccessful, others are thriving. I also buy cheap mini lego stuff and little kits from Temu and diamond painting kits too. all of these satisfy my creative "bump" in me without being knackering! I'm sure there's probably something like that, that you might be able to try?

    I think with Spring now coming, you might be tempted to get outside a bit more, but take it slowly! I found that doing a little bit each day in the garden was better than trying to do too much, getting tired and feeling down about it.

    I also did the opposite on the social side - my motto now is to say "yes" to as much as possible, if friends ask us if we want to go out for lunch - yes, go and look round a stately home or something like that - yes, anything like that to be honest. I do take a walking stick with me though, just as something to lean on if I need a rest. My family have all become closer too, I see more of them than I used to, and they all do more now too, it's been a bit of a wake up call for them too, to enjoy what time we have left as much as possible. 

    I don't know where you're based Simon, but I'm in the Ipswich area, and if you want to meet up for a cuppa somewhere for a chat, then I'm always up for anything like that. I don't know if this site lets us share e-mail addresses etc, but I'm sure we could ask!

    Wishing you all the best too Simon, and hopefully hear from you soon!

    Graham