Mum's surgery next week

Hi, sorry to hear about your mum, i just had a partial nephrectomy on tuesday, im lucky as i dont suffer with anxiety but i can understand why anyone would be anxious, my experience of the op side was a lot better than i thought it would be, i was a bit nervous of the unknown but from the moment i went in it was all very quick think it was less than 45mins from going in to being put under, the drs come and talk to you and answer any questions you have, when they put me under the nurse was asking me what i did for work and i remember saying i drive trucks, then i woke up, that was it, the hardest part for me was in recovery i had the most agonising shoulder pain from where they use air to inflate the area they are working on, but i had morphine which i could dose myself and that made the world of difference, walking around also helped a lot with getting the gas out of your system, i did find heat patches on my shoulder helped relieve some of the pain so maybe get some and see if it helps her. just do little trips as it can be very tiresome, i came home yesterday and kinda wish i stayed a bit longer as the first night home has been hard, one thing is seats, bed and toilet are lower at home than in the hospital so makes getting up and down harder so maybe get something to raise seat height at home to help with that, and lots of pillows for bed as i dont have many and find it very hard to get comfy at night, i had a 60 mile drive home which i think took a toll on me and was in tears when i got home. The nurses and heathcare workers were amazing and helped me so much, felt bad at the amount of help i was asking for but they assured me nothing was to much trouble and thats what their there for. Just tell her to take it easy and dont push to hard as that can cause issuses, i was also lucky that the ward i was on had people with different issuses and they were a great bunch, could have nice chats and a bit of a laugh with them, but dont laugh to much as that can hurt a bit lol. Me and another guy were in for the same thing and we were comparing pics of what was taken out, he won that as his was a 2.5kg 27cm tumour, i was amazed how well he done, but again he didnt push himself, he just did what he could when he could. I wish your mum lots of luck and tell her its not as bad as she probably thinks it is. Hope this helps in some way. 

1. I am 73 and 7 weeks on from a "laparoscopic nephroureterectomy."  Whole kidney containing the large tumour removed, along with my ureter. They also removed a small tumour from my bladder when doing the original investigative stuff under general anaesthetic a few weeks previously. It is a very big operation. Your mum's sounds a similar sort of procedure though not laparoscopic. In my experience they do not give you a very realistic idea of the after effects. I was told by the surgeon that I would "start to feel human again by about 3 weeks". The specialist nurse attached to that surgeon told me when I saw her 4 weeks on that she would say "at least 6 weeks"! I am still in quite a lot of discomfort but hugely better than I felt for the first 5 weeks. It is all quite a shock to the system both mentally and physically. And I am still super-weary. Which is normal. On a practical level your mum will need to rest loads, drink plenty of water, have adequate pain relief, be fed well and have ways to be able to sleep as best she can. I had a V cushion which cradled me well, on top of my ordinary pillows, in a semi upright position for the first few weeks. Much depends on where her scar(s) will be of course. Re washing... unless she has a walk-in shower .. there are excellent body wipes available which allow one to maintain good hygiene until you can get back to normal routine. The company are called Fresh Wipes.. and they also do clever shower-caps things that actually clean your hair for you. I took a pack of the big body wipes into hospital and a pack.of the "intimate wipes" they do too. An absolute godsend for independent personal hygiene. I was supposed to be in 3-5 days but stayed 9 because they could not get my pain adequately under control and I had an infection. I took 2 spare nighties, slippers with rubber bottoms, a phone charger AND a power pack. A basic washbag.. toothbrush, toothpaste, hairbrush, face wipes, talcum powder (useful for nooks and crannies that don't get well aired, to prevent any soreness!). My kindle, though I never actually read anything. A light dressing gown for when they get you to try to walk up and down the ward. Some nice sweets to suck on. And for me a real bonus was a lavender bag/sachet a friend gave me just to have something pretty and nice-smelling with me, but that turned out to be a lifesaver to press to the nose when others nearby were having an enema!! And cash for the trolley that may come round with papers, magazines, sweets etc.  Very best of luck to your mum... she is lucky to have such a caring son. One of mine was away working in the Antarctic and the other sailing on his live-aboard yacht in the Indian Ocean. Neither will have witnessed any of this ordeal... though I made sure to send some graphic descriptions.! Be prepared for a rough ride for your mum.. it is better to find it less horrid than expected than to be rather under-prepared as I was. There will be pain and tears, but also gradual improvement. And make full use of the specialist cancer nurse team at the hospital she is with and whose contact details she should already have. And never hesitate to advocate for her, if she is not up to it herself, and ask for advice, answers, explanations and reassurance. I found that dogged persistence .. if always polite and grateful for help, not angry or accusatory...really paid off. Don't be brushed off. The NHS is in chaos. Individual staff at all levels are usually lovely. But communication, organisation, info-giving etc are often quite chaotic. Keep notes. 

Thank you for your response, I've been following your journey and glad to read you're home and recovering. I will pass on your kind words to mum.

Thank you, I really appreciate you taking the time to respond in such detail and all really useful tips. I've ordered the wipes you suggest and will dig out my pregnancy pillow for mum. Mum is 71 so similar to yourself. Thanks for your kind words and practical advice and I wish you well in your recovery.

Apologies for assuming you are male! Do ask anytime if any other queries occur that I might be able to help with. Al the best to your mum.

Hello and welcome to the group, both your mum and yourself as carer.

As others have said, top tip is pillows!!  I had my kidney removed and found it easier to sleep in a propped up position and also it helped with getting in and out of bed.  I had 3 pillows in bed!  My additional pillow tip is to keep one in the car to use between your wound and the seat belt.  This really helped on the journey home from the hospital and any trips out in the car during the first week in particular.  I would also recommend have someone to bring her home from the hospital and make a conscious effort to avoid pot holes and drive slowly over any speed bumps!

I found it difficult to get out of bed the first couple of weeks.  After that I felt fine to shuffle on to my side and push myself up.  Before that, my partner would give me a helping hand.  There are specialist places that make bed rails that can be fitted under the mattress ... the rail could then be used to help pull herself up.  In the end I didn't need this though.

I don't have a walk in shower so I bought a good bath board that can be fitted Securely to the bath and acts as a seat.  This meant I could sit down and then swing my legs over in to the bath and the same in reverse for getting out of the bath.  This minimised any risk of slipping.  It also helped me to have a shower, particularly in the early days when a shower and washing my hair took me ages and longer than I could comfortably stand.  I think the tip about the wipes and the special hair wash caps is a good one, I found these useful also because I didn't feel up to a daily shower.

I had some sterile waterproof dressings to use at first.  Since then I cover the still bleeding and oozing part with sterile gauze and surgical tape which is a bit more breathable but prevents the blood going on my clothes.  You can get these things from local independent chemist or High Street such as Boots / Superdrug.  

Light dressing gown ... I wouldn't have wanted a heavy one and also a spare in case wound bleeds.  I took my own nightdress but in the end it was easier to wear the hospital gown.  

Some moisturiser that can be used on face and hands was also useful for me.  

Keep well hydrated when they tell you it's OK to start drinking and keep hydrated when she returns home.  No need to go mad, just listen to your body.  Take care around lifting ... nothing heavier than half a kettle, I think is what they said.

Daily walks but build very gradually.  I just went to the end of the street and back on the first day and am building it up from there.  We are all different but I am aiming for a half hour walk after 6 weeks.  Think I'm progressing more quickly than that in reality.

I've been lucky to have my partner doing the food shopping and cooking but otherwise having pre prepared meals that are light to get out of the fridge or freezer and can be microwaved would probably be useful.

Best Wishes to you all.

One of the things I hate is having to inject myself daily with anticoagulant.  I'm not sure if everyone has to do this but if she does, then be prepared for whether she can stick needles into herself!  

Not fun exactly I agree .. but actually virtually painless and very quick if you follow the instructions on the leaflet. Over in seconds!

Thanks so much for your response which I read to mum yesterday, lots of helpful tips. Particularly the one about the cushion in the car.

Thanks, yes she's been told she will have to do this. My sister is a nurse which is very fortunate so can help with this if needed!