Hi,
My husband (48) is severely sight impaired and we have recently found out he has early kidney cancer (4.5x2.5cm tumour). He has been put forward for a partial nephrectomy in 5-6 week's time. We are of course very worried, but also realise how lucky we are. This was found incidentally through what I believe was a very strange kind of divine intervention (involving fish & chips, of all things!)
I am joining this online community as a way of preparing for his upcoming operation. I (also 48) have ME/CFS, so I am anxious of being able to do the right things by my husband. My body frequently lets me down, let alone my mind!
For the last decade (since I got ill) we have become very adept at sharing roles around the house. However, soon of course, I will need to take on his roles as well. I am going to start practicing a few weeks before his operation. I also have to organise him (he is such a procrastinator ;-) )
I am wondering if anyone has any thoughts of things I can do in preparation to help him (perhaps things you know now, which you wish you knew before). I would be most grateful to hear.
I have thought of getting a cleaner before, for my own illness, so am reconsidering this (I know it's something that makes me feel guilty). We have already stocked up on tins and freezer food, again due to my ME/CFS. I've made a list of the things he will need in hospital, and I'm slowly starting to buy anything we don't have already. I'm compiling a list of questions to ask the surgeon before the day of the operation (we have been lucky to be granted an appointment).
I guess the big thing is, I don't know how rough he will feel after the operation and what I might need to prepare myself for on that front.
I would be so happy to hear any thoughts, I just can't shake the feeling I haven't thought of something!
Many thanks in advance :)
Hi Mike,
Great tips, I've started adding these to a list!! The heads up about the taste change is much appreciated actually! And your craving for ready salted crisps is interesting. My husband (also called Mike) already puts salt on his salt, so there will likely be some very interesting conversations with the nurses down the line!! I do try to tell him!!
Thank you so much for taking the time to reply, I couldn't be more grateful. All the very best to you from the both of us
Hi Sandy,
Sending hugs back to you and a huge thank you for your advice and support. I am so very grateful!!
That's a good point about everyone being different, isn't it? It does make me nervous that there are so many unknowns and unpredictables - especially because I want to fix everything for my husband to be okay. I have to learn I can't control everything! I will hold on your advice as I go through
Thank you again for being there!
Hi SleepyD it's very strange and I am so similar to your husband, so much of what all the threads say, help & support and I definitely recommend talking to someone so you can release (make sure it's a good listener )
Honestly I am also introvert and unfortunately I have had eye issues ( a long story of detached retina and PVD as well as 6+ operations) my sight vastly improved 2 years ago after a cataract operation but I was terrified that I might lose my sight. ( I have the eyes of an 80 year old)
If you can get him to talk with someone possibly from Macillian ( my nurse is a angel but tells it how it is )
Good luck together as a team, you both will be pushed and tested but please stay positive.
Stay strong.
Mike
Hey Mike, goodness that is spooky! Sorry to hear about your eye issues, from my Mike I know it really sucks. I just had to look up PVD, so many difficult names. My Mike has XLRS. Don't even try to get me to write that out in full!
It's almost impossible to get Mike to speak to anyone, I think he uses me as his therapist!
We've been assigned a Clinical Nurse Specialist from the hospital, but we both find her a bit difficult/off-putting. I could try to get him to get in touch with Macmillan, but that's a long shot, he's a resistant b*gger I have managed to get him to agree to go see our GP though (a miracle!!
), we really get on with him. Like your nurse, he is very caring but tells it how it is! I'll keep my fingers crossed that helps him a bit.
Thank you again for your well wishes. This will certainly will test and push us both. I am sure you too feel like that buckaroo toy, with more and more pieces getting put on sometimes!
Joining this site and talking to people like yourself has done me the world of good to keep my strength up! Thank you immensly!
Hi SleepyD yes I agree my GP is also really good he is old school & I read loads also due to COVID I wasn't given the following book until after my operation maybe through Macmillan you can access it
Hope your Mike takes heart that he is not on his journey alone and neither are you.
Stay safe.
Mike
Thank you Mike! Yes, we have luckily been given that book. I even managed to download a PDF so my Mike can read it with his computer. Maybe that is something that is useful for you too? Lots of the different Macmillan booklets and leaflets are available in electronic form, you may know this already of course! But here's the link just in case
Warmest wishes, SleepyD
Hi SleepyD. Hope things are going OK for you both. I had a similar size tumour to your husband, and in March 2018 had it removed by robotic assisted keyhole surgery. I found recovery fairly uneventful; of course everyone is different. First day home I started to walk slowly up and down the corridor at home, and each day slightly increased it, and after a week or so was walking to the shops, maybe half a mile. I still get an ache in the side where the op was, but nothing really bad. I was told that this pretty normal after major surgery. I still have scans every 6 months and so far I am clear, NED. Not sure I have contributed anything, other than to say to your husband the waiting is probably the worst part. The op and recovery hopefully will be the easy bit!
Hey preston68, so lovely to hear from you. Yes, we are indeed experiencing the anxiety of the wait now! It is so reassuring to hear your experience. Thank you so much for giving me the lowdown, I sometimes don't even know where to begin thinking and preparing. Your message has given me something to hold on to. I know everyone is different of course, but I don't think I am going too wrong by holding on to these wonderful and hopeful images.
I told my husband about your message and he was very touched, that someone was so thoughtful and caring.
I struggle a bit but I will try to come back on. After all, I am hoping to be able to reassure someone else with our story :)
Sending you the very best of wishes from the both of us.
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