We need to reach out

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Hi. I am new on here - and I genuinely never thought I would need to be on here.

In short - last October, after an incidental find, my husband was diagnosed with Stage 4 Kidney Cancer. He has a 13cm tumour on his left kidney which has spread to his lungs and his liver. He had just turned 50. He had (and still has) no symptoms which blows my mind. 

To say our lives have changed forever is an understatement, and I'll never forget the shock and disbelief when we were told the news. We are such positive people and have a large network of wonderfully supportive family and friends so we have cracked on and accepted our lives will never be the same and embraced the suggested treatment plan with the amazing team at Addenbrookes. We've basically carried on living our life as before with this just silently lurking in the background. 

We have had a setback now, as after 3 months of immunotherapy, we have been told that there is tumour growth and more have appeared in the lungs and liver and we're finding it hard to pick ourselves back up again. Its silly really - its not like we've been told there is nothing more they can do. They are happy to continue the immunotherapy a little longer and if it still doesn't work he will go on to tablet therapy. So there are options. But still we feel we need to pull ourselves out of our current scared and fearful state of minds. 

So - we feel we need to reach out to people who know how we are feeling. We think we've come to that time where we need some extra support.

For me personally, he is my soul mate. We found each other 13 years ago and I never want to live my life without him. And I don't want him to feel scared.

I don't know who is out there or who will read this, but feel free to share your thoughts and feelings Slight smile

  • Hi gooddays...

    Your experience is the best proof ever that anyone can live a good life with cancer. Lovely to hear that the longer he is doing ok, the more options for treatments are becoming available and that indeed now, this has helped him go from inoperable to operable! That in itself is a miracle! 

    Going by your date of posting, he has presumably had his surgery by now? I do hope all went well for him and that he is on the mend from the surgery by now. 

    I wish you both well, and your husband a good long life because it sounds as if he is now on the road to that. I am shocked how many people I am hearing of who are in their 40s and 50s when they have a large kidney mass diagnosed. I am 64 and mine was 2.7cm and as far as I know until the histology comes through, very contained. I have lived over 60 years of healthy life. In the general pattern of things, I feel extremely fortunate. 

    My very best wishes to you both. You are both doing great!

  • Hi Tartangirl and KeepLaughing,

    I am late coming to this your first post, but have read all the replies and so happy that you are feeling the support here from those who are going through much the same journey.

    My experience is, thankfully for me, nothing like yours and therefore I'm not the best person to relate directly to your journey, but I can only add my heartfelt support to you both.

    One of my neighbours has had a slightly similar experience to you. He was in hospital over Christmas! having his kidney removed, having gone to the GP with a painful shoulder that he thought he had pulled at work. (He's a gardener) Other than this, he had no symptoms at all. He is still waiting to find out for sure how far it had spread but atm it appears he has been fortunate and spread is likely to be minimal. (He may have the results by now - I just haven't yet seen him recently to ask him) He is in his mid-50s. In the event, the actual painful shoulder has turned out to be nothing to do with his kidney anyway, and something to do with an old injury many years ago, but if he hadn't gone about his shoulder they wouldn't have scanned him when they did!

    Mine was an incidental find (seen on a scan two years ago just before my hysterectomy for endometrial cancer) and was still at 2.7cm for a full two years (6-monthly surveillance scans) but I had it removed in a partial just over a week ago.  Almost everyone I've come across seems to have had virtually no symptoms, even with a quite large tumour sitting there for presumably a long time in many cases. Makes me wonder if there ought to be a screening programme developed somehow - like, everyone over the age of 40 should have a regular full-torso scan in a similar way to our mammograms and the like.

    You are both so positive, and this is the biggest advantage you could possibly have to promote recovery. The power of the mind isn't to be underestimated, and the glass-half-full people amongst us invariably cope better with life and all that it throws at them, and are more likely to come through severe illness or injury and out the other side, than those who are glass-half-empty. I doubt that would be classed as a scientific fact, but repeatedly this does seem to be the case in the vast majority of people. 

    Wishing you both well. I am new to this forum but already can feel the immense support and love and positivity here. 

  • Hi maite 

    Thank you so much for your reply and kind words. It is a hard journey without my husband who I miss very much. I have made some wonderful new friends from the sue Ryder site which we meet up regularly who are a great support. 

    I really wish you a lot of luck for the future and hope life will be kind to you. Take care and big hugs xx

  • Stay strong, both being so positive. Sending so much love your way, x

  • Hi, I am so glad you have found good support through Sue Ryder. I somehow often fail to think of Sue Ryder and only really know of them through seeing their charity shops. I am glad you have been able to surround yourself with good friends with whom you can chat in person, and share the good and the bad times in person.

    As I said, your grief is so new still. You are coping really well with the journey you are on and it honestly does get a little easier in time. Your world changes and you learn to live with the new world that it has become. I haven't personally lost a partner but I know many people who have, and this is what I observe from their journey after their loss, plus I've had my own losses, just not that of a partner as such.

    Thank you for your lovely wishes for me, and I wish the same for you. Keep on keeping on - you are doing great and your strength will help you through the pain throughout. x