Hello all, hope everyone is doing as well as can be expected. I was wondering if anyone would like to share their story about pain management after surgery? I guess we all expected pain when we got the big bad news, right? Someone’s going to cut you open! But did you find the doctors and their teams were prepared and willing to deal with it? Or do they just treat you like a scaredy cat or a boring complainer?
I feel like I really want to criticise my team and particularly my BCN, naming no names. 1. I expected pain after the op, but when I tried 6 weeks on to reduce meds, it was terrible. I was creeping around like a crippled bat, so I went back on the meds and called my BCN. To be fair, she did offer to take a look at my scar etc and the oedema in the breast. But she decided that I was just being a pain in the arse . ‘It’ll go, she said. You’ll be on just Paracetamol by next week.’ This was not the case. It turns out I have had an allergic reaction to the surgery itself, and this has caused an inflammation reaction called costochondritis. 2. I’ve never taken serious painkillers before, and didn’t know they can cause horrible constipation. Did it occur to any of the team to mention it? No. [I was chucked out of the hospital within hours, which meant I had no access to general medical advice]. Now, it turns out my hospital has a (very good) physio service, as well as a complementary therapies service. Did she tell me that? No. Neither did the oncologist I spoke to at length about the inexplicable levels of pain. BTW, if anyone needs to know, CC is massively helped by physiotherapy. Just love to know if anyone else thinks this is, not to put too fine a point on it, crap!
I don’t know how things work in the UK but here in Belgium it is recommended to go to officially recognised breast cancer clinics as there are other ones not officially recognised and also offer treatments but it had been discovered that the survival rates were lower in those ones. I halos had costochondritis. My tumour was 5 cm big and I think I had around 20 stitches, almost from side to side and deep hole (mastectomy). It was a big operation and ribs are near the breast area so I can see the logic about the pain. Yet please verify if your clinic is an officially recognised one.
Best wishes!
Sorry to hear this and I hope your pain is manageable now and hopefully goqnqe altogether soon. I had surgery (mastectomy) in November and still have pain like an electric shock/sharp stabbing pain in the wound area…and ‘ghost pain’…as in pain in the boob thats no longer there? Strange. Mybfamily say I have titty tourettes as I jump when the electric shock happens! Ii haven’t mentioned it to anyone (medical) as Im sure i read its expected. I just hope it doesn’t last too long! Good luck going forward 
x
I had a second surgery on Monday and was asked to take part in some research looking at patients who have day surgery.
It involves looking at pain and emotional well being. I have to complete a comprehensive questionnaire about pain experienced, painkillers taken and the effects (prescribed and over the counter), emotional state etc on day 1, 5 and 7 and followup at 3 months. Anyone still experiencing ongoing problems will be followed up. Hopefully this will flag up these sorts of problems and something done about it.
Hope you find something that helps soon. x
Hi Mandz1,
I too have the shock / sharp pains, i spoke to a BCN and she said it was the nerves healing. they will ease but for some people they don’t go. 
Hope that puts your mind at rest a little.
Sending Hugs
Thanks so much, Holly. That sounds like a great idea. May I ask which hospital or Trust/whatever is doing this survey? I hope you are doing well after your surgery. What a business, eh?
Huggs to you too. Hope the pain is better.
Thank you mummyknapp…I had read that ans have my fingers 
…appreciate your response xxx
I had surgery last June and I had the flap where they cut open my tummy and took fat out to put in my boob. And had 11 lymph nods removed under arm and tbh under my arm hurt more than my tummy and boob I couldn’t move my arm or anything it was hard as I had just had a baby aswell in the October. The pain with my tummy was ok it just felt strange sitting up and had to lay in my back for least 2 weeks after. I heald pretty well tbh. Good luck x
It’s a national study run by Plymouth University so lots of hospitals are taking part. The downside is that it is only for those having day surgery so probably doesn’t cover more complex cases.
http://www.uk-plan.net/POPPY
Hi alright? In Sept-Nov 2021 I needed 3 wide local excisions plus underarm and then, after starting tamoxifen 3 weeks after the last op, I felt as if a knife was stabbing my breast the whole time day and night … I could not sleep except a little on my back - everything else was impossible etc. I’m afraid I waited it out for whatever reason. (I wish I’d found the website sooner). The pain continued unabated until May 2023, and there has been some reduction in pain since then - in stages. Not great at writing this but I’m just saying in case it helps anything … I feel you are more confident to say something if you know it is a condition?
hi sky surfer
Pain is what you make it. the nasty beast or the beast you are going to beat.
But either way its a message telling you to rest first then take whatever meds pain care works for you. Priot to breast cancer i had long term ulcers on my leg. They are extremely painful at the start. and My friend who has Klippel Feil syndrone thought her condition was bad until she now has ulcers.
I learnt to manage the pain, and that tip came from a paramed. rather than taking 2 tablets every 4 - 6 hours, take one every 3 hours. you can’t exceed the maximum 8 tablets in a day unless you dont sleep. the tablets paracetomol. They work on the pain without affecting your stomach or bowel. but you must adhere to the precautions mentioned in the leaflet. ie more than 8 in a day, could kill you. hence them being removed from first Aiders ‘back in the day’.
I found complimentary therapy - Reiki helped, listening to meditaion tapes that helped you relax and rest. Accupuncture - some GPs have in their practise.
Under your holistic representative you should be offered 8 free sessions of certain complimentary services. this depends on the way your team chooses to notify you of this. I learnt about it during chemotherapy, then was offered again during Radiotherapy. Look up you hospital Macmillan team and enquire.
I also found fresh air and walking, plus hugging your pets helped; and lastly close family or freinds who would make you laugh - the latter something to do with the hormones released.
But a key is you asking, reading the literature, asking and checking out this forum, not just the dates relevant to where you are in your treatment, but back to entries earlier and even beyond. Those who have been before you have , masses of information, and we are all here to support each other.
I spent yesterday mostly asleep. My dentist told me not to eat nuts, didin’t listen, mega pain. I’ve been waiting on tooth extraction for 5 months… holding up my infussions. but adhering to rest and para 1 every 3 hours, then extending has helped.
‘shit’ always seems tohappen at weekends. Christmas day 2022 two of my crowns fell out, i swallowed one, i cried when i couldn’t get through to the Christies Hotline. but the samaritans were on the end of a phone and helped me laugh.
Please keep in touch, you are not alone and thank you for expressing where you are at, i’m sure replies will flock to your rescue, love and light Moonsox xxx
@skysurfer Hi 
I had three surgeries the last one resulting in a masectomy. A year on next month i still experience pain as the nerves were cut. What I do is get some body lotion and massage the area it may hurt to start with but persevere. In addition, heat a warm flannel and don’t forget to do your exercises as often as you can. I was fortunate the breast care nurses were brilliant and everything i needed to know was explained. I could phone them and get advice. If you feel hard done with your treatment, make a complaint to PAL. Love and hugs 
coming your way.
Moonsox,
How incredibly kind you are to have given me all this detailed information. You have helped me feel less alone, and I’m sure lots of other women will be able to use all your tips on pain medication. This was a totally unknown country to me until all this happened! [And very few of my BC team, including my own GP, seem to have any knowledge of or interest in it]. It seems to me that nerve pain is almost always standard in BC - obviously, they’ve cut through one of the most nerve-sensitive bits of your body. Yet we are on a ‘pain ladder’ which we have to try ‘step by step’ even though it’s completely common sense that what we need after the initial heavy duty opioids is a nerve blocker like pregabalin, rather than just Paracetamol (which still has its place, obviously, as an anti-inflammatory). I just feel this enormous weight. You have to learn everything, in advance, so you can recognise bad treatment when you see it and tell the doctors what not to do. And in terms of pain, what to actually prescribe you! But thanks to all: everyone on this forum is so generous, and goodness knows I wish all of you some peace, joy and happiness, away from the cancer ‘thing’. Moonsox, I hope you are better, I hate to think about your bedsores, please God they have gone and that your dental treatment has gone forward. You are among the many on this forum who did indeed 'flock ’ to my rescue. Thanks for all your care. Love and light, and hugs, wherever you are. Skysurfer x