Hi guys,
Just a quick update, on Monday I had my robotic assisted Laparoscopic Nephroureterectomy, followed by chemo bladder "wash". All went well, came home Weds pm, still have catheter in. Pain wise, thanks for the advice about holding something over your stomach when you cough, its really needed. I also have to inject myself in the stomach with a blood thinner for the next 25 days, surprisingly it's ok, once you get over the initial moment of stabbing yourself with a needle! I can't say I have much of an appetite now, did anyone else have a kind of pinching pain after eating? Is it normal? I am tired, Ive got up and come downstairs for meals and then sit for about an hour before going back up to bed. I look about 7 months pregnant, but thankfully I haven't experienced the shoulder pain that some of you have. The only gripe I have is that after I left the hospital they called me and asked me to get a blood test next week, obviously they forgot to put it on the discharge letter....anyway my husband went to the GP surgery to arrange this and was told by a very obstructive receptionist that as it wasn't on the letter I couldn't have it, because obviously I am some sort of nutter who just likes having random blood tests..... still trying to sort it out, but honestly a little compassion and common sense would help! My surgeon is ringing me in 7 weeks to discuss all the findings which seems an awfully long time. Anyway that's it from me, thanks for listening!
I have had multiple difficulties with discharge letters, My last GP told me they wouldnt change my dressings after my nephrectomy which I couldnt reach "because it wasnt on my discharge letter". Plus the wretched hospitals will not let the patient see the letter and add any changes he thinks necessary. They are awash with omissions, typos and ambiguities. The whole set up is pathetic. One of mine omitted my two major symptoms. Ridiculous. Sadly the English language is not the first language of many cons.
Hi Hels, great to hear you are back home and on the road to recovery. It can be quite rough for the first few days but it definitely gets better. I also found the same as you with the pinching pain after eating. Actually even after 4 weeks it happens and I am finding it is much more when I eat bloaty type of foods or even if I have some soft drinks. So I try to keep those down now. Seems we are all in the same boat with discharge letters missing things out. You can try to reach out to the secretary of the consultant and re-request the blood test. I find it easier to get through to the secretary than even the GP.
Thanks for reply, hopefully sorted now as the hospital has now sent another discharge letter. On a somewhat more indelicate note, I havent BEEN yet, I am taking the Lactulose oral solution for stool softening but no joy yet.....and its been 4 days..... lots of breaking wind though.....
Hi hels, I'm a bit a head if you recovery wise had my nephrouterectomy on the 10th october. My after care has not been great, no advice ref catgeter ir wounds before I was discharged and have no idea If I need my stitches out . I managed to open my bowels after 5 days and am now the opposite . Everything I eat sits on my stomach and bloats me so I'm walking after each meal even though I'd rather lie down. Had a bladder check last week and have a leak so catheter for another 2 weeks. Getting bored of the bood thinner jabs I'm bruised and sometimes it just won't go in....I had 30 days worth. Looking forward to feeling better again. My only real op issue is my itchy wounds and sore bikini line but compared to others It's worth it xx
Hi Pugsy, thanks for reply, I know what you mean about the aftercare bit, I feel a bit like I've been cast adrift...I don't think I could have managed .if it werent for my wonderful husband who is an ambulance care assistant....he checks all my incisions and manages all the catheter paraphernalia. They do itch, especially the under boob one and the bikini line one but all appear to be healing well. He said mine were dissolving stitches so maybe yours are too. I have finally been, which was a relief. Wishing you all the best and I hope your recovery continues well xx
Thankyou Hels, I had a few stitches drop off today so looks like dissolving ones. My bikini line one is like fish wire and digs into me so I might re cover for a bit. My husbands been great too helping me wash etc, doing things husbands shouldn't lol . I've found it hard finding others who have had this full op as I have bladder cancer which spread to my ureter so nice to be able to compare. I'm due the chemo wash when I have my catheter out as gave had 2 Turbts already xx wishing you a speedy recovery x
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