Thanks Alfham for that insight on what you experienced. It has been very helpful. I wasn’t given any advice on lifting things and their weight but it’s so important to know.
the dizziness I had was sort of between the two you described, where I would see things moving but was not a full blown vertigo (I had one years ago and these weren’t as bad) but you are right, definitely down to the laying in bed.
I got out of hospital yesterday and am happy to be home.
I did have a very bad sleep last night where my back was just so uncomfortable and I woke every 2hrs. I had 2 paracetamol and 1 Tramadol before bed then 2 more paracetamol at 2am. Maybe it’s having a flat bed and not the magical hospital beds that bend!
Anyway do you or anyone have experience of numbness across the area? Basically half my stomach and around the right side and right groin area are all either numb or tingly. The doctor did say I have lost some nerve endings hence the numbness and it will always be like that which is a bit worrying as it’s such an odd feeling and I’m concerned the areas that are tingly may always be like that, which I cannot handle and wonder if there is anything that can be done. It may just be time, it’s only 1 week after all!
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.
I hope everyone managed to have a nice Christmas and are rejoicing in the New Year.
Well it’s been nearly 6 weeks since my surgery. It’s been a bit of a roller coaster. A few days after being discharged I was vomiting bile and dehydrated and ended up back in the ED overnight. I was fine the next day. When I felt I was able to travel (manage the 3 hr flight and the 3hr train trip) I went to QLD.
my inside area where the kidney used to be has been quite painful, both on the front inside and back if that makes sense, but found a hot water bottle was a blessing on the back. I can roll onto my side while sleeping but now am experiencing this inside pain with my stomach shifting. Really the only comfy position is on my back which ends up not comfy for long! The recliner lounge chair has been very comfy though! I have a follow up appointment in a few weeks so will have to head back to Darwin for that.
The doctor rang the other day (first time I’ve heard anything from them since leaving hospital) and was saying how it was a very aggressive cancer, I’m not sure if he said it was a grade or stage 4, I was a bit overwhelmed but will check at my appointment. He said that they took my appendix out as it had a 1cm growth in it but it turned out to be a bit bigger when it was actually out. They had not even mentioned a growth in the appendix prior to surgery, or that they were taking it out. I feel very frustrated as I feel I am not getting the full information and am feeling quite scared if it’s that aggressive, if there is any still in me, or obviously the chance of re-occurance.
Sending out wishes that this year is going to be a good one 🙂
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!)
So I guess I didn’t quite know what a roller coaster this was going to be. I had surgery and was happily recovering when I had severe should pain. Back into hospital and another CT scan and ultrasound showed a dark colour thing in my abdomen. As I was in a small town hospital I was moved to the larger Wide Bay Fraser Coast Hospital in Hervey Bay. The doctors spoke to the urologist back in Darwin who said it would be liquid pooling in the area and to drain it. The specialist was up from Brisbane and I was scheduled for that procedure but he wanted another ultrasound done.
The results from that have devastated
me. Yes there was liquid but there was also a small soft mass. I can’t believe that this is just 6weeks after surgery.
I’ll be having an MRI on Monday then the doctors need to plan the next step.
Given this has happened so quickly I obviously don’t want to muck around and if i need surgery or chemo or whatever I want it done ASAP.
mom devastated, sad, confused and just can’t believe it. I have amazing support from my friends. My elderly mum has been amazing, staying strong for me, driving 40 mins to sit and spend hours with me each day and I know it’s very early but given how quick this has happened I’m just lost. I stay strong for them but I just want to scream and cry and throw a tantrum that this isn’t fair. (It’s not fair for anyone and everyone here, whose stories I’ve read and those that show support).
That is really inspirational Budgie! That is mind and I guess everyone’s biggest fear, that kind of diagnosis. Thank you for sharing.
I will do whatever I have to to keep going and even tho I know there are days when you just have a snap or break or are just frustrated (I’ve had two this week in hospital) that I will push on through as best I can.
I’m still on the roller coast as i was told the soft mass were blood clots but they still aren’t sure. If they stick a needle in and drain then it could have disastrous consequences so I am extremely greatful that they want to take the time to make sure of what they are dealing with.
My preference is to stay in QLD as I don’t have anyone to really look after me in Darwin with recovery plus I didn’t really want a 4hr plane trip with clots.
I just seem to have a very unusual situation of which specialists should really be handling my case.
Just read through all the posts and all of the advice sounds good (such a great discussion group for us cancer sufferers, sorry it was not around years ago), well I am a bit like Budgie, I have had cancer(s) over the past 18 years and had two terminal diagnosis (from different cancers), had truckloads of medications, chemo's and tests mixed into that a couple of surgeries (cancer related) and just like Budgie 'I am still here' 3yrs and 10 mths since my last encounter.
I actually take no medications relating to any of the cancers, a couple of heart tablets and Endep (for neuralgia).
Do I have problems, yep sure do, I am still plagued with dizziness, fatigue and a bunch of what I think is minor stuff all thing being considered, it all messed with my head for a long time and I still use phycologists as the need arises.
You have had some really good advice (from this site) and its not all doom and gloom, sure it can be tough and very difficult to cope with day after day but rely on your doctors (some of the best in the world), you have wonderful support from your mum and that is fantastic. As I usually say 'go forward, meet it head on, all the treatment, test etc.' you can't change what is happening anyway.
I hope all goes well in this new round, yeah I know it sounds like a boxing match but if you get knocked down make every effort get back up again.
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