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Hi Folks

My husband has stage 4 renal cancer, 13 cm tumour removed by open radical neph 12 days ago. His recovery has been really tough so far. Out of hospital within 2 days, pain been bad and difficult to control. Appetite almost nil with half a stone down in first week. Is this all normal, I know it is early days but feeling a bit out of my depth here?

thanks

  • Hi Fee23

     I mentioned it was open surgery, the tumour was so large they had to abandon key hole. Thanks for your reply, it very much has been trial and error with pain control, during the night and mornings has been the worst. He managed a walk outside yesterday so improving slowly. He is the sort of person who normally shrugs off pain and rarely been to doctor, so I know it has been bad. Appetite is also still poor.

    Hope your recovery goes well x

  • Hi Nem,

    So sorry to hear of your struggles both with the cancer and with the care follow up. Everyone is different but I do know what your husband is going through.

    I had a radical nephrectomy via open surgery in May. The ICU doctor told me that it doesn't matter what the surgeon says, in his experience of having seen many operations like this, it takes 6 to 9 months to fully recover.

    I have to say, he was right.

    I still get pain in the wound site, but it is much reduced. For the first 3 to 4 months I couldn't sleep on my side. Simple things like getting dressed were a challenge for a couple of months to be honest, and I didn't pick up anything heavy for at least 3 months. I was very uncomfortable sitting in the car until recently because of the bumps in the road and the twisty roads.

    I also had no appetite for a few weeks, and I slept a lot. And it did affect my mood. I found myself to be rather down and, quite out of character, a bit emotional too. My local cancer centre offered counselling, which I found to be extremely helpful: both my wife and I are profoundly grateful for that.

    But it all passed, and about 3 weeks ago, I woke up and realised that I felt well again. That was a good day :-)

    Obviously, everyone has a different experience, but at least knowing that there isn't a quick road back to normality for everyone might help give you both a frame of reference. It is a big operation, and all I would say is don't rush the recovery. Tell your husband to listen to his body, and let the healing take its course. I realise that you guys have to deal with the spread of the cancer too, which will also knock your husband about.. I too have had to manage that, having had two more operations since the nephrectomy, so it can all feel a bit relentless.

    And I'm not oblivious to the impact it all had on my wife. It was, and remains, a big strain on her. I feel very guilty about that. So she and I have made a point to try to mitigate that by carving out time for her. Her wellbeing, and yours, is a major part of the recovery process: to be completely honest, I don't think I could have managed without her. So please please please, look after yourself too, and listen to your own needs.

    Lots and lots of luck to you both. Just hang in there: yes its a struggle, but it will get easier, I promise.

    Big hugs.

  • The constant gardner

    Thank you for your lovely words, it is so good to hear from other people who have been through a similar situation. I am doing ok, but it is a lot to juggle on top of a very demanding job and my own health issues. Looking forward to the xmas break and will take your advice about counselling if the emotional side starts to wobble too much. I am still a bit in disbelief that this is happening to him, up until now he has been fortunate to be a very  fit and healthy man. Credit to him for the work he has put into that!  We have been told that his overall health condition puts him in the favourable group,  even although he has this small met in his chest. I have read a heck of a lot of papers now, but still not really sure what that means.

    take care and keep in touch x

  • Hi Nem,

    I can totally sympathise with the state of disbelief: in fact, some days I have to remind myself that it really is all happening to me/ Like your husband, I too have kept myslef fit. In fact, the cancer was only discovered after yet another one of my many mountain biking accidents. (I like mountian biking, but mountain biking doesn't like me!) And whilst I'm told that my fitness helps me recover from the treatment, oddly, it seems to have made it harder for friends and family to accept (and therefore understand) my illness. Their sense of disbelief is palpable.

    Like you, I read all I could about the cancer, and really hammered Google. But with hindsight, I regret that. I learned little that was constructive, and a lot that was alarming. It took me a while to realise that all the information was by neccessity generalist, aimed at as wider an audience as possible. But in being so broad, it failed to match my individual issues. So not only did i waste my time, I also worried myself needlessly.

    I think everyone on this forum will tell you that worrying doesn't help. But I suspect we all still worry, even so.  I don;t know about eveyone else, but I've found that I manage thw worry by extreme compartmentalisation. I'm taking it all day by day, treat each event as a new event and not an extension of previous events.

    Obviously, if you have your own health issues to deal on top of a demanding job, you are being challenged from all angles, and I can't imagine how beleagured you must feel. It is so, so difficult. Talking about it all has really helped me rather than bottling it up. And being able to talk to the counsellor before everything got too much acted as an important pressure relief valve. It might sound silly, but being able to vent to an understanding, but uninvolved, person was so valuable I'd say it was, fo rme anyway, essential. I wish I'd done it earlier, to be honest.

    Anyway, I know its not easy for either of you, and I'm so sorry you are facing all this. You both have my very best wishes, and as I said, hang in there.

    Big hugs

  • I am feeling a lot better this weekend as his recovery is improving. I understand what you mean about worrying being pointless. Unfortunately my experience with cancer is coloured from what happened to my mum, I lost her at age 57 within 10 weeks of diagnosis to lung cancer, it was shockingly quick and we were all quite young. I am not reading anymore and will try to take each step as it comes, the cancer is not making him ill yet, dreading when that happens. Best wishes to you and hope you continue to do well xx

  • Very pleased to hear you are feeling a bit better and your husband is recovering. But so sorry to hear of your experiene with your mother. That must have been very tough indeed: I'm not surprised it impacts on you now. Medicine and cancer treatment has advanced so much though, that survival rates are continually improving. So maybe try, if possible, to avoid comparing cancer treatment then and now.  of course, knowing logically that things are better now, it doesn't make the medical journey feel any less daunting for the patient or the partners. But at least it can give us all hope that good health is a realistic end goal. it just takes time and of course there will be ups and downs, but try not to dread what hasn't happened. Easier said than done, I know. Just to take it one day at a time. And try yoga too - it's surprisingly good (once you stopped toppling over!)

    Big hugs.

  • I am feeling more positive since joining the group, thank you for your support it has made a huge difference to how I feel just now. I am now looking forward to xmas which seemed impossible a few weeks ago. I will keep in touch and let you know what the next step is in treatmentx