If you do go the complaints route Cdc, don’t expect quick answers. Mine, which is classed as a very serious incident, has been ongoing since January without me having received any sort of meaningful answers.
Hi Everyone, firstly let me just say I did feel a bit wary about posting my news yesterday as I am aware that some of you are still in the throws of chemo and all the other problems going on… please forgive me if it seemed crass but I’m rooting for you all, and will be waiting for you all in the rads department to compare tattoos!
CDC - good for you making a complaint… without people like you making a stand these things will continue and it never ever should happen! I am sure it won’t affect how they treat you at the hospital, if you had been listened to and treated correctly in the first place you wouldn’t have had to make a complaint. I’m glad the chap on the phone was sympathetic and shocked to hear your story, just goes to prove that what has happened to you was horrendous! Be strong, you are doing this not only for yourself but for all those women out there who are facing the same challenges! I hadn’t heard of Tamoxifen reducing the breast density but I will efinately mention my concerns it when I come to have a mammogram and will make a nuisance of myself until they do an U/S if I feel I need one!
CDC - hope chemo goes ok and the tingles don’t get worse.
Knicker Magnets - hmmm, I’m not sure I believe they can do anything, but if I get to a point when I think I need one I might try it! I wonder if you would set of the alarms in an airport? Could be embarrassing. I had a massive hot flush last night and haven’t even got the Tamoxifen yet!
Seroma - my nurse checked me over and it is going down so she didn’t want to risk an infection by draining it, Just said to start exercising more to get the movement back before scar tissue sets in. I’ve got to get my arms up and behind my head for rads so must work on that.
On a different note - whilst with my Surgeon and nurse yesterday we were chatting about donating blood and my Surgeon confessed that she can’t stand the sight of blood!!! Crikey talk about the wrong profession…she said she donated blood and when she saw it she fainted!! The nurse then said she is needle phobic and can’t ever donate blood as can’t stand the thought of a needle! What a pair! Like to see them getting through chemo then!
take care all
Kip
Kip glad you got good results. I am awaiting a HER2 test result although it was negative after the biopsy. I have my oncology appointment on the 26th so I guess it will drag on until January.
Anyway I just wanted to ask everyone how long to do the exercises for as I stopped after 2 weeks after my SLNB?
I have booked a hair appointment for later today to see if I need a trim to encourage my hair to grow back in a style. It’s 9 weeks after chemo ended now but it grew back during the last 4 cycles. I saw a nice style on the local news yesterday as I quite like my hair short and peeps have said it looks nice short.
Every cloud and all that!
Take care,
Linda
Hi,
if you’ve had a node clearance you have to do the exercises forever as the scarring tightens as it gets older.
Chased up my complaint again this morning. Waiting to hear back, not that they are going to get able to give me a satisfactory answer as there really are no excuses for the mistakes made.
Oh thanks for the heads up on the exercises, makes sense I guess… mental note to self… do the exercises!
Hope you get some answers regarding the complaint.
Kip,
I found it interesting that your team had been similar to mine about the seroma business…
I was told that I would likely have a seroma, but that I shouldn’t worry, because the nurses or the surgeon would drain it after the surgery. My particular surgeon does not even use a drain on anyone, but I was reassured when they told me they would drain anything that popped up.
So I called and made an appointment for this with BC nurse when a swelling began, and she said she could not drain much, and to wait to see the surgeon, which I did, and then he said that it would disappear on its own over time, and that he did not want to introduce another opportunity for infection by draining it. So I never had anything drained, and this was in June! I think it may have reduced slightly, but I’m not sure it’s going to go away completely. The affected breast is now at least 2 cup sizes bigger than the other side! My op was a full node clearance plus lumpectomy. I know we are all different, but has anyone else had this?
Georgie x
Hi Georgie
I had a WLE with full node clearance on the 3 Sept. I developed a seroma and was told that it would resolve itself and they didn’t want to drain it because of the infection risk. The seroma grew to 9cm long, 7cm deep and 7cm wide. At this point they tried to drain it using ultrasound guidance. It was honestly the most painful thing I’ve ever experienced and they only managed to draw 75mls of fluid. Since then the seroma has completely resolved but the pressure forced open my scar which has still not closed. I think they always prefer to leave things alone to resolve naturally but surely you shouldn’t still have swelling five months along? I was told that gentle pressure would push the liquid out of the tissues, a rolled up sock or cushion under the arm was suggested but TBH after the attempt at drainage it was so painful I couldn’t stand anything touching it. As I said it’s all fine now just waiting for the scar to close so I can have more chemo.
I hope you get some relief soon.
Jacq x
Hi Kip, Shi asked me to pop on here and let you know about the magnets. I’ve been wearing mine for months and I don’t think it makes any difference but I’m still wearing it in case it’s making even a tiny bit of difference ? I do find I sometimes get stuck to metal things if I’m not careful (like my work pass or handbag) ? I tried acupuncture first but that didn’t do anything either and I’m now taking sage tablets to no avail. That’s not to say that none of those things would work for you. The best things I have to deal with the flushes are foldable fans (I have a few in different bags) and the cool pillow and they were also the cheapest ?
Good luck with the rads, they’re nowhere near as bad as the chemo ?
Have faith Georgie, at one point I thought the seroma would never go but it has now. Keep squishing! X
Hi Ladies, sorry for not replying over the weekend, had Mum to stay as OH and step dad took a boys holiday for the weekend. Been very busy.
Georgia Gee - hmm your seroma problems sound like mine, I am getting movement back in arm and the seroma is definately going down but its still there and tight around the joining bit from armpit to breast (or what was my breast). Its not painful but tight and still feels like a lump when I put my arm down. I guess I’ll keep on with the exercises and see what happens. I keep my heart cushion pressed under there most of the time and that helps too. Just hope my arm movement is enough for the CT scan tomorrow.
JacB - good to hear that your seroma went eventually, although not great about the scar reopening. Nothing is ever straight forward is it.
Meesh73 - your post made me smile… I imagined sticking to the fridges in the supermarket with my knicker magnet… I haven’t read any very convincing posts about it helping but worth a try sometimes I guess. I haven’t got the Tamoxifen yet as need to get to GPs to pick it up. Do you take yours in the morning or evening? Any ideas for whats best?
CDC - how did the chemo go, hope you are fairing ok this time round.
KTK - how are the rads going?
I’ve got CT scan tomorrow and rads planning, looking foward to getting this bit started, but actually after the euphoria of gettting good news on Thursday I’ve felt a bit down really, it seems its up and downs all the way doesn’t it? Just now feels like another huge hill to climb and then the unknown after that?
RedRose - how are the nails? I’m going to remove my nail varnish and see whats what with mine, they keep breaking very short so not exactly attractive at the moment!
Kip
xx
Hi,
I have been sick yesterday and today but not sure if it is due to the prawns I had on Saturday a bug or the chemo as I have felt sick on and off from before surgery. I rang the helpline and they said stay off work so you are 48 hours clear of being sick as there are alot of bugs around now. The bad taste I have they say is due to chemo. My Mum has felt sick and been off her food unlike me. Has anyone else been suffered like me? (finished chemo nearly 10 weeks ago and surgery was 3 weeks ago but this is the 1st time I have actually been sick). Thanks. x
Oh Linda Thst sounds horrible. How are you doing now? Very wise to stay off work. Could the sickness still be a SE of chemo even though you finished some time ago? I’ve defintely got some issues with taste. Bizarrely everything tastes great when I start eating but as the meal progresses I get a horrible taste in my mouth or I can’t taste anything at all. My OH likened it to when you go into a place that smells strongly of something eg cats Yoi get used to the smell then can’t smell it at all. I think my tastebuds get used to the taste of things then switch off - it’s very disconcerting. I was told to be careful of prawns whilst on chemo so they might be the problem. Or indeed a bug. Just look after yourself and take care. Clare Ps meant to say how are you doing physically following the surgery? I got a call to say the Marsden have accepted my transfer of care. I’m relieved!! See them in a couple of weeks to start planning what steps to take next.
Kip glad to hear the exercises are making some difference. Hope the CT scan goes ok and it doesn’t cause you pain. I was talking to someone who has been on tamoxifen for a while. She went to her GP having been on it for a couple of weeks. He asked how she was and when she said she felt fine he remarked it was good because normally any problems manifest themselves within a few days. My Mum has no issues at all whilst on it so I hope I’m as lucky although I fear not- I’m having horrible hot sweats on chemo!
Sally sorry you’re still waiting to hear back with regards to your complaint- I’m compartmentalising mine and not getting my hopes up that I’ll ever receive an explanation of what’s gone wrong or indeed an apology. I’ll keep you posted. X
My chemo went ahead on Friday. I’ve to keep off my feet as much as possible. Oncologist wants me to get another two cycles under my belt which would be equivalent to 3 Docetaxel (I was due to have 4). The surgeon I saw initially has said she would expect me to have rads too but it will be interesting to see what the Marsden say
Hugs to all xxx
Clare I feel fine now apart from the horrid taste ta. I am fine physically thanks after the surgery. I felt well enough to go to work today until I was ill yesterday.
I am glad that you have arranged to move your surgery to the Marsden. Will you have radiotherapy at the Marsden too if you need it? I have an oncolgy appointment on the 26th at my local hospital which I managed to get abit sooner as I said that I didn’t mind seeing a different oncologist as the one I saw when having chemo is not seeing anyone in November.
Hopefully I won’t be sick tomorrow fingers crossed. x
Had a reply to my email query of the other day saying the report for my complaint t was finalised and signed off by the CCG last month.
Nobody bothered to send it to me though. Just waiting for my copy to come through now. How they can sign it off without my input is a it baffling.
Hello, just back from Rads planning session. All painless, tattoos in place and only took about 10 minutes. I saw a lovely nurse and when I burst into tears (been very emotional recently) she was very kind and talked me through my diagnosis and treatment adn explained its all normal to feel this way at Rads as its another treatment but also the light at the end of the tunnel. They got me to fill out a form to say how I was feeling and will offer me some therapies and counselling should I want it. Annoyingly before I could start the planning scan she said they hadn’t got my results from the ANC (panic moment as thought I had been given someone elses last week) so she had to see the ONC as they had written I needed Rads to middle of chest. ONC told her the nodes were clear so I don’t need the rads to the middle of the chest after all! Good job she checked. Wish they would talk to each other. Now going to start Rads on 29th November for 3 weeks. Still haven’t got the Tamoxifen as the GP hasn’t sorted it yet. I hope I do as well as your Mum does CDC, can’t decide whether to take them last think at night or first thing in morning?
Kip
xx
Hi,
Dunno about anyone else but always take medication with possible side effects at night so that hopefully I sleep through the worst of it.
Received the emailed 13 page report for my complaint which was signed off and sent to the CCG nearly a month ago. I hadn’t been sent a copy until I asked for it despite my emailed complaint in May triggering the investigation in the first place. It’s full of inaccuracies and misinformation so at the weekend I’ll go through it and send my reply which I don’t think they’ll be expecting especially when I send it to the CCG as well. I was told an investigation was being done when I was diagnosed in January but it seems not. I was also told my cancer was a new one and not a recurrence of my previous one at diagnosis. In the report it talk about it being a recurrence. Someone has lied to me. I’m like a dog with a bone. I’m not prepared to let it go.
Sally you must be infuriated, being lied to is appalling. I admire your tenacity. ?
Thanks CDC, I think i am going to try for nightime first off, if thats a problem I’ll switch to morning, its got to be taken whatever so sleeping through it might be the best. Seems crazy to be worrying so much about a pill when we’ve had chemo, operations etc doesn’t it.
Sally - What a mare! How on earth does this sort of thing happen… keep on at them!!
Kip
x
Hi,
I could cry. Nearly 4 weeks past chemo and one week on letrozole and I’m losing so much hair it’s unreal.