Hi. I had a nephrouretectomy 7 weeks ago. Was finally feeling less pain, soreness and swelling last week and quite happy but now I have a heavy swollen feeling in my lower abdomen on the operated side and soreness returning. And very tired indeed. There seems no aftercare or physical checks or any way of anyone telling me if it is ok/normal or a sign of something wrong. GP not too concerned as no fever. Where to turn?
Hello TillyV
I'm sorry to read you are experiencing this swollen feeling in your abdomen, and the tiredness.
Were you given the name of a CNS (cancer nurse specialist) before your surgery? If you weren't, I'd suggest you contact your surgeon's secretary, to let them know about your new symptoms. Somebody should get back to you to discuss this.
You could also contact the Macmillan helpline here! They are really good!
Hope you feel better soon!
xxx Candysmum
Thank you so much... I was but when I called and left a message no-one got back to me. I will try the surgeon's secretary. I didn't think we could contact the surgeon once the op was over. Nothing is made clear and there seems no aftercare like being physically checked over after a few weeks to be sure everything is going ok and on track. I will pursue it. Thanks so much for the tips.
I've felt much the same. It started when I had my hysterectomy two years ago and despite everything they gave me to read saying that a physio would come and show me things like how to walk best, and how to do breathing exercises, no physio ever turned up. By the time I had been to the nurses' station several times to ask, I finally found a nurse who told me that there "were no physios". So everything I found out about physio, I had to learn for myself. About the breathing, the exercises to prevent DVT, etc etc. I was desperate at the time to get back to ballet (I do Silver Swans) but nobody could tell me whether I could dance or when or how much. They kept saying things like "when you feel able to" - same with the driving, it's always "when you can do an emergency stop" but I knew I could do one five days after my hysterectomy but nobody was ever willing or able to tell me if I should be doing one, ie what I might be damaging inside if I did.
Similar with my recent kidney surgery. In the booklet it says a physio will show you this, that and the other. I found out on day one that this physio didn't exist. Not, unless I was so totally immobile that I couldn't even get out of bed. Apparently you are not entitled to physio after surgery unless you fall into that category?
I am perturbed that nobody is going to check my incisions for another four weeks. I did get a call back the same day from a urology nurse in response to my message left regarding my swollen belly and tender incision. And from a registrar the day after that. I cannot currently see one of my incisions as I have big boobs and a big tummy anyway, and it's so far down that my body gets in the way of my being able to see it! The registrar suggested that I could ask my GP to have a look at it pending my first follow-up in four weeks from now. I said, it will take that long to get a face-to-face with my GP for them to have a look at it! and besides which, they don't want me to drive for another two weeks and unless I can drive I cannot get to anywhere as I am five miles out of town in a rural location. It was very good that they both got back to me and listened to my concerns fully, but it's the lack of in-person aftercare I find strange. They don't seem to take into account that if you live alone you don't have anyone who can even look at your incision, or drive you to the surgery or hospital if needed.
In the event, my belly is feeling slightly less sore than yesterday even, so maybe I am on the mend after all!
My neighbour had a hysterectomy about 40 years ago. When I told her about the procedures and care and aftercare provisions, she was horrified! She told me how very different it was for her after her surgery, where she was checked and double-checked constantly, then follow-ups at home with a nurse visiting regularly etc. I guess times have moved on, in our overstretched NHS
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