Hi Catty,   Good to hear from you, and sorry to hear it's been a bit of a rollercoaster. The physical recovery from surgery will take a bit of time, you had an organ removed and some pretty big surgery. The kidney took up a large space and your other organs need to settle and your body get used to how you feel. It will get better though, so give it time. Ask your doctor if there are any more exercises you should be doing, or go see a physio as there may be simple non-strenuous exercises that could help. I was getting tummy pain if I did too much, lifted something too heavy or carried something not very heavy, but for too long, etc. It was really easy for me to do too much and get a  bit of pain. The pain also wasn't immediate, so I could find myself sore hours after doing more than I should've.   Stages and grades of tumours are two different things. Stage is about location/spread/size with kidney cancer. Grade is about how aggressive it is, how quickly it is growing. They can only really tell this accurately by doing a biopsy of the tumour and doing tests on the tissue. If they said is was Grade 4, then it was aggressive, growing fast...so you've had surgery to remove the tumour, this is a good start.   Whether it has spread outside of the kidney and how far it has spread determines the Staging. This is important in terms of what you should do next. Right now you don't really know what to do next as you don't know if you have any other small secondary tumours, or if you are all clear. You can do a full body scan which should pick up any spread. This scan helps you either put your mind at ease, or get a plan in place for further treatment if required.   I had a Stage 1a tumour, so smaller than yours, and Grade 3, so less aggressive than yours, but still more aggressive than it could've been. I decided to have the full body scan to put my mind at ease (and give a baseline for future investigations.) If I were you, I'd be asking for that to see if there is anything else there that isn't showing any symptoms just yet.   The scan I had was an FDG PET scan. They inject some slightly radioactive sugar solution into you, wait an hour while your body absorbs it, then scan you in a machine that looks like a CT scanner. Fast growing cells absorb more of the sugar, so they show up on the scan. It only takes an 1-1.5hrs and you can go home straight after, so if you want to have one, maybe phone your specialist can provide a referal (although I have no idea if you can use a referral from a  doctor in one state at an imaging provider in another state??) I suppose what I am saying is, I wouldn't necessarily wait until your next appointment to discuss this with your doctor...you mentioned it's in a few weeks, so if you are in a location that has access to imaging, maybe talk to your specialist about getting imaging done. You might even find the doctor suggests waiting until your wounds heal a bit better for the imaging as healing tissue can also light up on the scan (my flu vaccination showed up as a hot spot on my upper arm!)   You're still recovering, but it will get better. You don't have to sit and worry in silence, so if you have concerns or questions, phone your doctor, even request a telephone appointment if they are difficult to get a hold of. Peace of mind is hugely important, so if you'd feel better knowing more, go find out. Another tip is, write down the questions you want to ask in advance. I did this, it seemed so simple but helped me make sure I got everything out of my consultations. The other thing to do is request copies of imaging reports from any providers you've been to. They should send them to you. You never know...the appendix might've been mentioned on a scan report! The flip side of that is you might feel better seeing, Pancreas OK, Liver OK, Gall bladder OK, etc.   Good luck and try not to worry (I know it isn't easy!) ... View more

Hi Effie, I’m glad you came back here to touch base.   This is a really difficult time of year for people going through what you have experienced. I lost my Mum when I was 21. It does get better, it gets easier over time...but you might not feel that way right now. Cancer can be a terrible illness, and sometimes we don’t win the fight, no matter how everyone tries, family and friends, plus medical professionals. You really have nothing to blame yourself for...you did your best. I’m sure your Dad appreciated everything you did, whether you talked about it or not. Unfortunately in the end it wasn’t to be, not because you did the wrong thing, but because there was nothing to be done. My advice to you would be to get through the festive period, and then reach out for help with your grief. This could be online or through your doctor. It’s OK to visit your Dad as often as you want, it’s only a short time since he passed. Everyone deals with grief differently, so don’t worry about feeling guilty or sad, it’s Ok. It will get better, but there are definitely people out there who can help you. Feel free to share here, others have gone through what you have...and at the very worst, I always feel better when I have shared my worries with a friend, family member, or even some strangers in the internet. ... View more

It sounds like your surgery was bigger than mine. I have an 8cm scar that is a vertical li be from below my belly button  and around it. I have a small scar just below my sternum, an other at the bottom left of my abdomen and a drain was out in for a few days mid way between those two.   I have numbness around  my belly button. It doesn’t really bother me...if anything it means I am less ticklish! You get used to it. I don’t have any pain from my wounds now, and didn’t really have much to be honest. I know that you can get an itching sensation as part of the wound healing process. I had this a little bit. It does settle down after a few more days. You are still early on in your  recovery, and it sounds like you have bigger scars, so try not to worry, and focus on making yourself comfortable, doing any breathing exercises you’ve been given and sticking to the level of physical activity you’ve been told you can manage. ... View more

Hi @Catty    Glad to hear you've had your surgery.  The surgical pain went away for me pretty quickly.  The worst thing was the catheter!  I felt nausea from the morphine they gave me in ICU,  but they changed me to fentanyl after I told them about it and it went away.    You'll need to take things very easy (but do make the effort to walk short slow walks regularly.) this will last for a week or two,  then you'll feel a good bit better... But remember and don't do too much too soon!  I found it easy to push myself too much and soon realized little and often was the key.  Immediately post op,  the deep breathing exercises are really important.   I was moved on to Palexia for pain relief which I stopped maybe a week after going home. All things going well,  the pain should settle down.  Six months post op I now get the odd twinge at my operation scars if I lift something heavy (25kg+) or do a lot of lifting over a short period.  I have no nerve pain and haven't needed to take any pain killers since I stopped the Palexia. My tumour was a lot smaller than yours,  so you had some different logistics going on and things were probably moved around a fair bit,  so you can expect some discomfort.  It will go away though and then you can focus on getting back to full fitness.   When you say dizziness,  is it a lightheaded feeling or full on vertigo (you literally feel as though you are tumbling head over heels)?  I had vertigo post op a few years ago when I had back surgery., when I got up or lay down,  the whole room would spin.  The cause is lying down too much and you need physio to fix it...the crystals in your inner ear that give you balance go into the wrong part of the ear and you need to do very specific head movements to fix them.  One session with physio then practising at home fixed me that time.    It's hard to stop yourself sometimes,  but remember you've just had surgery.  You need to avoid lifting anything for a while.  I think I was 2kg Max for 6 weeks,  then 10kg for another 6 weeks,  something like that.   Good luck with the rest of your recovery,  and do share your progress!      ... View more

Hi @Effie    I just thought I'd pop by and say hello, see how you were doing?   Don't be too hard on yourself. There's every chance that there was nothing more you or anyone else could do. Sometimes it's a fight that you can't win.   Take care... ... View more

Another little progress update...   This week I had my first 6 monthly surveillance check. Abdominal and Kidney/Bladder function ultrasound   I wasn't expecting any spread...I had a FDG PET scan only a few month ago, so it's early days...but it was still a relief to hear there was no sign of any tumours in either kidney, liver, gallblader, bladder or prostate.   Now I'll try and push cancer to the back of my mind and set a reminder for 5.5 months time and start worrying around the time of my CT scan!   I've been walking, playing barefoot bowls, playing golf, gardening, and trying to push myself at the football...I didn't score any goals this week, but had two assists, so fitness is still increasing (and every joint and muscle still aches the next day!)   The scan results still don't mean I don't wonder if every cough is spread to my lungs, or a pain in my ribs is spread to my bones (rather than where the foot ball hit me or where I got an elbow from an opposition player,) but this is all part of life post op. There's a chance it might come back, but a decent chance it won't so I'm getting on with life, and will stick to my surveillance schedule religiously. ... View more

Hi @Catty    It can be a real shock to be told you have cancer. Hang on in there!   If it can be removed by surgery and you don't need any more treatment, then you're off to a good start. If you're otherwise healthy ,you'll be out of commission for a little while, have to take it easy for a bit more, but then you have a pretty good chance of getting back to a very similar life to pre-cancer times.   It's a big operation, but one that Urologists carry out regularly, so you'll be in safe hands. There are a few people here who have gone through radical or partial nephrectomies, so feel free to ask any questions.   Good Luck! ... View more

Hi @Effie    I just wanted to say I read your post and I really feel for you. I haven't been in your position, but it sounds like you and your family have gone through an awful lot.   There are probably better people to give you insight here, and in your local area. Grief and loss are very real, and there is support available. Posting here is a great first step. Well done for making it this far, it must've been really difficult for you. ... View more

Congratulations, that's great news!   Stay vigilant, get periodic scans to monitor it and hopefully it never causes you any worry in the future!   ... View more

Just a little progress update...   According to my GP, my sore back was likely to be...drum roll...a sore back.   I've got my first post op Ultrasound booked for the start of December, so starting to worry about those results even though there is nothing I can do, and a fairly good chance they should be clear. But I just need to get used to it...this is going to be something I do every six months hopefully for a very long time.   In other news, I played football (soccer) for the first time since my op last night. Today is exactly 5 months since my op. I felt I had to go back and give it a go. I haven't been running or jogging yet, so I was a bit worried. It was strange to be running, bits were jiggling about that haven't jiggled for a while   I didn't run anywhere near as much as I used to, but I did OK. I didn't do any 100% flat out runs, but definitely did some medium pace runs, and was jogging around a lot. I play in an over-45 social game. We play 7-a-side on grass across half a full pitch. Two x 40 minute halves. There's a lot of ground to cover and it's a long game. My feet and knees were sore to begin with, and my back was a bit stiff, but it eased off and I was OK. I made sure I had plenty of water before, half time and after the game.   The morning after I can honestly say there is not a muscle in my body that isn't in agony! It's a good feeling though. It's down to effort and use rather than anything I need to worry about. No blood in my urine either, so I'm confident I haven't burst anything internally ether. I'm going to try and go back weekly if I feel up to it. I'm not back 100% fit, but I'm improving every week. This was a big step for me.   The partial nephrectomy was major surgery, but you can get back to where you were before the op. I'm not quite there yet, but I'm not far off it and I'm optimistic about progressing further (check ups going well of course!) ... View more