Post nephrectomy update

Yes, I don’t have my scan until July to see if this new treatment is working, it will be nail bitting time for me I did have a scan in April the 10th that was for my oncologist to see where we were starting from, I hope all goes well for you we both need a bit of good results, stay positive and we all hope for the best Sandy xx

Hi Del. You are doing so well so soon after your op. I didn’t hardly get up for days and was totally wiped out. It was 17 years ago and huge tumour so I suppose things were different then but still you are doing great. I was up after a day or two when I had my secondary op in March. Have finished my radiotherapy and since then I have had a very sore throat and trouble swallowing. Also I am mot enjoying any food or hot drinks. Everything tasted horrible. I start cancer tablets end  of the week so hopefully things will improve then. Hope everyone starts to enjoy their food again too xx

Hey gooners, 

to be fair my op was 3 weeks ago. I was in hospital for first 5 days. I could not get comfortable at night. I'm 6'3" and hospital beds are made for slightly smaller people i think. My first few days at home were in bed. I could not get comfortable at night until two weeks post op which at the time seems like forever but yes now i'm through the worst it does feel like i'm doing well.

Loss f taste is awful. Moreso than i would've thought possible. You had a big op on your shoulder how is it for you now ? Pain/discomfort ? How are you coping mentally ? Tell me to mind my own beeswax if i'm being too nosey....lol.

Del.

Suffolkflyer said:

Hey you lot stop talking about a sense of taste

Haha I think Macmillan missed a trick when they never added a LOL emoji to the "react" button   

Hi Deloo. Absolutely fine to ask questions. I find it comfortable on here to answer questions that people may find helpful. The tumour this time was in my shoulder and secondary to my 17 year old kidney cancer. How bizarre is that. The operation in March was my throat was cut open and a vertical wound in my spine. Got out as much as they could but not curable this time. Had 5 rounds of radiotherapy last week. Seeing consultant Thursday and tablets starting on Friday. AXITINIB. I am crap with new meds so not looking fine to them at all. Pain in arm is much better but still numb where ladies have bingo wings. Doc said this can happen and unfortunately may be permanent. I was in hospital for 24 nights as got covid and have immunosuppressed husband so too risky at home. Was very challenging time. Mentally it’s hard not to think about what’s coming but as you know we lost our darling daughter last year aged 39. The anniversary is in 10 days and we are still in complete shock. You shouldn’t be here and lose your child especially when she had no underlying health conditions. Just collapsed with a bleed to her brain. She survived for 2 months bless her but it was too severe to survive. I am convinced the trauma reignited my cancer but who knows. Love to all of you and I will fight on. My husband and my other lovely daughter need me and I need them so let’s all beat this together. Thank you for reading this and being there for me. You all sound like great people who in the real world I would love to be mates with. There’s the cockney coming out in me although I live in beautiful Cornwall now xx

Hey Goonsy  you lucky old cockney thing living in Cornwall.

Really rotten to get secondaries all that time after nephrectomy. Even more rotten to lose your daughter so suddenly. Life can be such a delight and yet so very cruel too. I can only imagine how you feel and i do feel so sorry for your loss.

I sincerely do hope the new meds aren't too bad for you and that they in fact help you. I've not had t have any meds yet. I had a tumour removed from my bladder at the end of march which turned out to be low grade and they are going to observe my bladder every three months. Then i had my right kidney removed three weeks ago. They said i have to wait for appt on june 6th to see what the tumour on my kidney was as to what further treatment i may, or may not need.

Did you have any meds after your nephrectomy ?

Del.

Hi Del. I didn’t have any treatment after my op only follow up appointments. I was told that that the tumour had all been contained within the kidney sack. Thinking now a tiny little bit must Have been hiding to come back after 17 years but who knows. They told me that at the time radiotherapy and chemo wouldn’t do any good and just to recover and survive which I luckily did. I have lived an extremely active and fulfilling life for the last 17 years. I am diabetic but before this came back i played table tennis 3 times a week and swim regularly. We love to walk and live 5 mins walk from the beach so are very fortunate. I am on pregablin and oxycodone this time and steroids but these are decreasing as from tomorrow. Hope your pain relief is helping. 

Hey gooners, my pain relief is paracetamol. 2 every 4 hours. Pretty standard really. And it does the trick.

I hope your meds work in containing anything they were not able to get to. I hope too you're reasonably comfortable. That was some surgery you had recently.

5mins walk from beach sounds cool. They're all mainly sandy in cornwall too. We holidayed in Polzeath three years running in the 90's when our boys got into surfing. Great days and nights.

Del.

Hello Adrian

just wanted to wish you all the best for your scan results tomorrow ….let us know! Love Jules x

Hi Jules, replying at 0400hrs.  -Anxiety sleep deprivation -   I must admit to feeling anxious, although, physically l am tickety boo and chipper.  It is so good of you to offer your good wishes when you have your own "issue"  ( sorry to put it that way ) You take care of yourself and keep spreading the love. Thank you for your support. Love from Adrian