Hi fellow cancer warriors, I had my surgery on the 13th February and I wanted to ask if anyone has been through the same and how their experience was? As I haven’t been having much luck and have been in so much pain!
I was in hospital 2 days, I had 2 drains, and in that time 1 of the bottles de- vacuumed, and I had a lot of pain, which the nurses said was probably nerve pain, the doctor asked if I was happy to go home after the 2 days and I said not really as I was worried about the drains de- vacuuming, because if anything happens, I have to return to the hospital in East Grinstead, which is 32 miles from where I live, so I was discharged with 4 spare bottles, went home and within a day all the bottles had de-vacuumed and we were back at the hospital, I had such discomfort and pain,the nurse explained that there are air holes at the entrance of the tubes and on 1 of the tubes they were exposed, causing both to de-vacuum, she patched it up and we were just about to go and it happened again, she consulted the surgeon, who said remove the 1 that is causing air hole problems,which she did, so off home I go, with 4 spare bottles, it was now the weekend, after 2 days, the bottles de-vacuumed again,leaving me none on a Sunday evening, I rang the ward that advised me to ring in the morning, and put a towel under my arm, so back to the hospital Monday morning with seeping wounds 
the nurse said that the air holes were exposed on the remaining drain tube so she patched me up and off I go again, and it has been okay since, but the pain has been so excruciating and has been getting me down and upset, which I’m not usually like. I haven’t been able to get comfortable, certain movements trigger the nerve pain in my back and the wound site. The discomfort and difficulties,of having the drain attached, I once trod on the tube getting up from the toilet, once got it caught on a kitchen drawer handle, once tried to change the loo roll and the lid of the loo roll holder landed on my tube, I’ve used my feet for certain tasks because it’s painful to bend down. Am I the only one that has had such an experience? These things are certainly sent to try us! 
Him up there is definitely punishing me for something.! I was prescribed coidene for the pain, but I just felt so spaced out and sleepy all the time. And all this is in between having to go back twice for dressing changes. So I still have the drain in 17 days post op, as I am still measuring 100ml drainage, it’s been okay for 4 days now, but still nerve pain. Can anyone share their experience please? I haven’t got my results yet from the surgery.
Hi Squinky
I am one of the Community Champions and have noticed that you have not yet had a response. By replying to your post it should hopefully bring it to the attention of someone who has had similar surgery to yourself.
I am sorry to hear of your melanoma diagnosis and your surgery on the 13th. It sounds like you have been through such a lot but you are doing everything right in contacting the ward, being seen and getting the pain relief. I find that codeine does the same to me and its not pleasant. Have you asked if there is an alternative pain killer that would be suitable?
I do not know how much drainage would be expected so I would suggest calling the hospital/your CNS for some advice. You are also welcome to give the Support Line a call if you feel it would help.
I hope that your pain begins to settle and I wish you well for your continued recovery.
Jane
Hi Jane 2511! Thank you for your kind words. I’m sticking to paracetamol for now, as it’s a pain relief that I feel comfortable with. The cancer nurse at the hospital has said the drainage needs to be 30ml or less before considering removing the drainage tubes, because of the risk of fluid buildup. I thought I’d write the post to ask if anyone else had had similar experiences with the difficulties that I have encountered.. But I suppose it’s just all part on my cancer journey and something that you have to cop with 
♀️best wishes to you Jane
Hi Squinky,nice name 
my wife had similar,lymph node surgery etc and had similar excruciating pains,brought her to tears and she’s tough.Nurses said it was a blockage,perhahaps a clot that got stuck in the drain then cleared causing vacuum then pain.Happened several times and my wife had the drain in for about 4 weeks before it got down to about 30 a day.Its a horrible time and I’m thinking of you,wishing you all the best 
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Hi Squinky,my wife had similar issues though can’t remember it being bottle vacuuming.Please don’t be afraid to ask for more pain meds.We got Oramorph and it does help,why suffer the pain when there is something to help you through an already traumatic experience.Paracetamol doesn’t touch what you’re going through,don’t be too brave love,sending best wishes ️
Hello Paull! Thank you for your reply. Squiinky was my old school friends name for me lol! When you set up a profile, it says don’t use your name ♀️Whilst I am going through this part of my journey,with the drains , I was thinking to myself, should it be this painful 
because I’m usually a tough one! Hence my curiosity post. So to receive a response was somewhat comforting to know that im not the only one that has experienced such a crap time , although I wish your wife well and hope she is on the road to recovery 
and thank you for the advice. Best wishes ️
