It was a lumpectomy and sentinel node biopsy. Thanks for your compliments about my writing, cheers me up to know I can still do something. The ward staff were awful. I couldn’t wee after i came round for nearly 24 hours. The same happened after childbirth when anaesthetic knocked my bowel and bladder off line for a while.
I couldn’t go home til I had a wee and they threatened me with a catheter and made me have a bath. The bath was assisted by a student nurse who didn’t know why I was there, commented when I left my bra on, and gave me helpful comments about 1 in 5 women get breast cancer. i had to strip naked ( except for my bra), sit on a plastic chair hoist, be hoisted into a raised bath, then she opened sachets of shower gel to wash me and i told her not to. She watched while i splashed water to try and get myself to wee, then got me out when i asked her to ( by the white plastic chair hoist) and stayed in while i tried to wee, and i failed miserably again! So not my finest hour, totally felt degraded, like a lump of meat, piece of rubbish and unimportant. I finally had a bluey/green coloured wee which was off the scale on the wee measuring chart, and they let me go home. Was very upset by it all but think am working my way through it now and starting to see the funny side of it, though am still of course plotting my revenge.
That is awful. I’d go to PALS to register your concerns about the standards of care, if I were you. Like you, I had lumpectomy, but as my nodes looked malignant on ultrasound, he whipped them out as well. Turned out it was in one, but at least I didn’t need another surgery. So you’ve now got the wait about the lymph nodes. I know some hosps can test them whilst you are having lumpectomy, but obviously not yours. Have they given you any idea of what treatment you may have next?
I came home on Friday after my April 1st operation and so glad to be out of the hospital, too! Maybe worse on a bank holiday weekend but I was left for 5 hours in the post-op recovery room as there were no beds free and with no after care and visitors not allowed. Awful. I was ridiculously wide awake as well which didn’t help but was just ignored.
Have been unable to sleep more than an hour or so since then, very up and down moods, fears etc. Supposed to have district nurse visiting to change wound dressing and bottles but no one has showed up yet. But I so don’t want to go back to the hospital today. Feel (and look) steamrollered. Spent an hour and a half on the loo with constipation and now have very sore piles, too. And feel like I have a size 0 metal breast plate on my chest…
Not feeling like having visitors at all while like this - people seem to find it hard when I am not all ‘positive’ and ‘brave’.
You are doing well, Tors, to be going to the cinema and things! Hope you are feeling okay today.
Thats even worse than my hospital stay, you must be feeling really traumatised from your treatment by the hospital. At least i got to see my husband for a while afterwards, that calmed me a bit. How dare they be so poor when you are going through such a horrific ordeal? I totally understand why you are feeling so demoralised and down now. Thats definitely what was mostly wrong with me and my very very low mood this week. Also think I underestimated the effects of a general anaesthetic and getting that out of your system, so maybe thats still going through you?
I have started to rationalise and move past how rubbish they were in hospital now, so now am just getting back to the normal low mood and terror instead of the supercharged version of the low mood. Have just had a chat with my mum ( well a sob with my mum) and told her everything on my mind, as have been trying to protect her. I feel better for it, though am starting to feel guilty for offloading already. I am going to ask if i can have access to a counsellor to speak to who is not connected to my treatment as i think that may help.
I have also found it very hard seeing people other than my immediate family, and have felt worse after seeing or speaking to them so have avoided it too. Then thats made me feel guilty. You can’t win! I phoned the breast cancer care line and they said that people who love you have so much invested in you that its hard for them to see anything else.Is a horrible feeling isn’t it? But at least you are out of rubbish hospital now and sleep will come. Then again, i was in the spare bed at 3 am as couldn’t sleep and was just overthinking so had to read a magazine to divert the thoughts.
Its hard to see any joy in anything isn’t it? My mum says i will feel like me again and wont always be like this, so fingers crossed.
I think you should go easier on yourself and get the district nurse phoned, vent some emotion chasing them!
Yes, that guilt keeps creeping in, doesn’t it? And the overthinking…I’m hoping my grasshopper runaway scary thoughts will settle down as all the drugs eventually find their way out of the system and some sleep drops by.
I am taking it VERY easy this afternoon now. But it is hard not to want something just vaguely normal again in life! I keep wondering where it all went, like being stripped of your identity and given a new and strange one that you didn’t ask for and don’t know yet how to deal with or even what is in store. When do you get your results? The wait is hard, isn’t it? Mine are April 16th.
I recognise so much of my own experience in all of the postings, the luck of the draw as to whether you get a lazy nurse or a good one in the hospital. Before chemo I needed an ECG and a lazy sister told me she had no idea where they did them in the hospital, refused to phone or find out and basically we had to go and search ourselves and found it and had it done so as not to delay planned Herceptin course. She couldn’t care less. Tors, your sentinel node procedure sounds awful mine was actually very good if that is the right word, all done in same room with one lovely radiographer who talked me through it and her own very succesful battle with cancer 15 years ago. She was so supportive and understanding, a simple smile and a willingness to try and help means so much to us doesn’t it. I felt rushed by both the surgeon before the mastectomy and the nurses afterwards one telling me off(!) for wanting to have a wash. She didn’t want to help and told me to wait until I got home. I had the same horrible times for about 4 weeks thereafter feeling physically and emotionally wrecked. One District Nurse who came just ripped the plaster off the wound when she removed the drain causing one area to bleed creating a possible site for infection. I too have rehearsed all of the words I would say to my family and visualised me in a hospice and then watched my own funeral. I couldn’t see or discuss the cancer with anyone outside my family and still find it hard. I feel vulnerable and lost out in the wider world of the shops and for the first time today 3 months after diagnosis we are visiting friends for a cup of tea but I am scared!I have no confidence and like the safety of my family. Our friends are lovely but at the moment it only takes an unintended wrong comment to break me.
I had to phone the emegency chemo line at the hospital last night as my knee was swollen and painful and the book says to do so in case of blood clots. The nurse couldn’t speak or understand English very well and I just broke down afterwards. A doctor did call back and I was reassured but it just brings it all home doesn’t it, we don’t want all of this we just want our lives back.
I had similar problems with nurses during the 2nd chemo, scruffy nurse, no sense of urgency at all,disappeared for a coffee even though I had sat there waiting for two hours in the chair just wanting it over and done with and to be at home. Mine was the first appointment of the day so I felt really sorry for the many people waiting outside when I left. One coordinator, you know the type wamders around the hospital in civvies with seemingly nothing to do, asked me if I thought there should be a plasma tv in the waiting area, I just said forget the tv get another nurse and encourage timeliness for the emotional sake of the patients.
Thank goodness for our families they seem to know what is needed and our friends who don’t push but send cards and messages regularly, one just said " A Big Hug for you today" That’s what I send all of you.
Sorry everyone but have just reread postings, akfilm- ask for Magnesium Hydroxide for constipation, tastes horrible but works. Buy Nelsons haemorrhoid cream for piles and always use moist toilet tissues after dry loo paper. Try and drink 2 litres of water a day. I was dreading constipation and only had it once after the op. Even through chemo I am regular. Hope this helps.
Well it’s been a while since I posted here as I’ve not spent as much time online since my Mx and ANC last week - using the computer made my arm ache too much!
Tors - I’m sorry you had such a miserable time in hospital but glad that you are beginning to get past it and that the surgery went ok.
I was very lucky as I was well looked after in hospital (was in from tueday to saturday) but even so I had some down moments and a strange feeling of abandonment if I hadn’t seen been visited by a nurse for a couple of hours, I can only imagine how horrendous it must have felt for those of you who had poor levels of care.
My surgery went well, I was taken to theatre at 2.30 and back in room at 6pm feeling very drowsy but otherwise ok. Has a fairly comfortable night but unable to get up due to drips and drains so had to face the horrors of the bedpan! By the morning I was deperate to get up so begged the nurse to detach me from the drip so I could go to the loo, she was great and when she couldn’t get hold of the doc for permission to take the drip out she agreed to disconnect it for long enough for me to have a wee and a wash - I’ll love her forever for that! Drips were finally removed permanently at midday so I was able to get up and about and look after myself from then on. The drains came out on saturday morning and I was home by lunchtime.
I’ve had some stiffness and swelling and the area around the wound and the back of my arm are numb but it’s not too uncomfortable and I’ve been a good girl and done my exercises so have pretty good movement in my shoulder. The wound is healing well and I’m going back to have the stitches out on friday.
The best news though is that I saw my surgeon this afternoon for the pathology results and it showed that they removed 16 nodes and they were all tumour free! This is especially great as when I was diagnosed at least 4 nodes were affected so it means the chemo worked really well for me and, as the surgeon said, gave me the “best possible chance for the future”. I’m feeling very happy tonight as for the first time in 5 months I feel that there’s a real chance that I’m currently cancer free, still a long road to travel with more chemo and rads but it doesn’t feel like quite such an uphill struggle now.
The boys are doing great, they are very accepting of the fact I now have only one breast and can’t lift or cuddle them so easily at the moment. We told them that Mummy had to have an operation to make her sore booby better and that the doctor would take it away to fix it and might give me a new one one day. My 5 yr old is fascinated by my “pretend booby” and loves to poke it. I’m glad it’s the Easter holidays so hopefully he’ll have lost interest by the time he goes back to school and there’s less danger of him wanting to take it in for “show and tell”!
that is such such great news, well done, you must feel very relieved. That chemo seems to have done a fantastic job for you.
I got my results yesterday. Lymph node clear, which is good news. The grade was actually found to be a 3 rather than the 2 they had thought post biopsy, but they don’t seem overly concerned about that. I am now waiting for the mdt meeting to be held so i find out what the plan is, but think it will be chemo and rads.
I too feel much more positive today and as if this is beatable, which to be honest I havent really felt up til now.
My cancer was also Grade 3. I did discuss that with my oncologist and although that’s not great as it means it’s more aggressive he also felt that that may have contributed to the chemo being so effective. This was on the basis that the faster growing and more abnormally dividing the cells the greater effect the chemo would have on disrupting that cell division and killing the cancer cells. So bad news in one respect but good in another - given the FEC chemo did such a magnificent job in my case I’m happy to take the good with the bad in this instance. Since my tumour was triple negative chemo is the only treatment available to me so it’s great to know it worked!
My little fella’s birthday was on saturday but we decided to hold off celebrating as I was still in hospital that morning. We’ve told him that it’s this coming saturday instead so he hasn’t ‘had’ his birthday yet. Grandma is baking a cake as we speak and all his grandparents and godparents are coming over on saturday to celebrate. We’re all looking forward to it and my good news makes it all even more enjoyable.
I’m glad your results were reassuring. It must be a relief. Hope you are feeling a lot better by now. I had my last drain and bottle removed today which feels much easier, though I have quite a bit of swelling under my armpit which is painful. And I was given a spongey boob to play around with in my mastectomy bra! Not that I’ll be wearing it for a week or two yet, but I’m going to wear a loose top and go out for lunch tomorrow as it’s my birthday! The sunshine is a real bonus as well as a good shot of Vitamin D.
Hoping to hospital-free until results day next Friday.
Hope you have a wonderful birthday. I’m glad the last drain came out in time, it feels so much better with them gone!
I had my stitches out yesterday and although the wound still looks like something off of frankensteins monster at least I feel I’m healing up. I’m having fluid drained off every 2 or 3 days at the moment, it doesn’t feel particularly uncomfortable when it’s collected under the skin but definitely feels easier after it’s drained,just hope it doesn’t carry on too long as it’s a bit of a hassle going back and forwards to the hospital - especially as I can’t drive myself!
I’m finding my ‘softie’ boob quite comfortable to wear though it does tend to move upwards gradually (no weight to hold the bra down) so have to keep yanking it back intp place. My BCN said not to bother with a mastectomy bra yet as I might not need one so I’ve been using my old nursing bras which have been fine and are nice and soft so very comfortable - wasn’t expecting to need them again but glad I hung on to them! I’ll be glad to get a proper silicone prosthesis though as I’m hoping it’ll stay in place better but have to heal up first, BCN says she’ll arrange a fitting in about 6 weeks.
Well I’m off to make loads of sandwiches as we’re having a load of people round to celebrate my little lad’s birthday.
Hope all you ladies have a lovely day and get to enjoy some spring sunshine.
Thank you - I had a lovely afternoon in Whitstable in the sun yesterday and friends came round for tea today as well. Feeling quite tired now and the swelling where the tubes were is a bit worrying. I might have to go in like you have and get them drained. I didn’t have stitches, just strips. Can you wear your bra already then?
Glad you’ve had a good weekend, Annette. It’s great to have a bit of ‘normal’ going on isn’t it? We had a lovely day yesterday with lots of friends and family round - the birthday boy thoroughly enjoyed himself. Today we went out to a chinese cafe for lunch which was great though like you I’m feeling a little tired this evening.
I’m back to the hospital tomorrow evening to have more fluid drained off. It’s built up quite a bit since the last draining on friday and looks quite alarming but it’s not painful just a little uncomfortable. Most of the build up is where my breast used to be so it’s almost like I’m growing a new boob - just rather more sloshy!
My wound is healing well and is well above where the band of my bra goes around so I have no problem wearing one. I also don’t have any pain or inflammation around the wound (haven’t needed painkillers for the last 2 days) and the area close to the incision is numb anyway so the bra doesn’t cause me any discomfort. I guess I’m lucky that way as it certainly makes me feel more comfortable to have the appearance of 2 breasts even if one of them is fake.
My main discomfort now is around the back of my arm and my shoulder where some areas are very sensitive to touch with tingling and burning sensations in the skin. I know it’s just due to nerve damage and things healing themselves but it can be quite unpleasant at times.
My next thing to look forward to is a meal out with hubby tomorrow night. My mother-in-law is looking after the boys when I go to have the seroma drained so we’re taking advantage and goint out to eat after it’s done!
Am so sorry to hear about some of the hospital experiences, really some nurses are so nice they’d make you cry and then you have the witchy ones that you just want to smack or let them go through the bedpan process! Still great to hear Tors and Linda your results are clear! Here’s hoping the same will be for you Annette!
I just wanted to say that I hope you are starting to feel a bit better physically and that your draining sounds like it’s doing well - I remembered how I’d always be touching it and then felt so much better off getting rid of the wobbly stuff!
Linda, I wonder if a tub of E45 will help your tingling and burning sensations - I know I used that for my radiation sessions for that burning feeling but also so that my skin didn’t dry out and it wasn’t a quick fix but lashings of it put on me I saw an improvement slowly.
Here’s thinking of you all and that you can enjoy a bit of sun on your face at the moment.