Member
Posts: 123
Registered: ‎17-06-2018

Re: First Few Weeks After Ringing That Bell

Afternoon Chris glad the boobs feeling bit better. Im going to leave those polypem off for day or two my nipple looks worse so im going to let it dry a bit. I know what u mean about tshirt and leggings ive lived in them too lol.
Im glad to be free of that place tho grateful for treatment but jez couldnt wait t fin and ysday just fin me off. I feel like the whole experience happened to someone else its strange.
Hope your feeling better emotionally its a rollercoaster for sure.
I didnt know at the time ysday but as i was sat in rad centre my sister was admitted t aintree with heart trouble..mt family tjought best not t tell me whilst i was sat next door to hospital..jesus what an afternoon. Shes ok thankfully but got t go back for scans etc....rock and roll life! Xxx
Community Champion
Posts: 1,762
Registered: ‎19-08-2016

Re: First Few Weeks After Ringing That Bell

Hi Ladies
I hope you don't mind me popping in....
After rads I too had very sore nipple. The nurses gave me Medi honey and it worked really well. I believe you can get this on amazon. Would highly recommend.
Sue xx
Member
Posts: 167
Registered: ‎12-05-2018

Re: First Few Weeks After Ringing That Bell

Morning ladies hope you are all well and feeling a little better each day. Pleased to say nipple not so sore can actually bear to have clothes next to skin so progress.
Sue hope you are okay after yesterday and that you were able to finally relax last night knowing that you haven't got that awful long trek to do today. Weather is really grim here today so I think I'm go to have a sort through my wardrobe, lived in leggings and baggy tops for weeks easily taken off for Rads.!! Time I stopped looking like a bag lady xxx
Member
Posts: 142
Registered: ‎11-05-2018

Re: First Few Weeks After Ringing That Bell

Gill 

 

I know - totally daft thing to do, but with the excuse of finding a nice ‘oil smell removing’ fabric conditioner to treat my jeans and polo to, I went round Tesco’s trying out the brands by smell-test, good excuse for hand and arm exercise with twisting tops off...!, - also Mrs Google says bicarb works wonders, so clothes have been duly bicarbed and have to report it worked well...one small mercy for my favourite jeans ! 

 

I hope your BCN gets back to you, I feel a right pest bothering mine as I had a couple of issues with a very pink breast, uncomfortable stitches and possible Lymphoedema after my TM op, and felt I was being a nuisance. I actually got more help, info and reassurance from the Rads nurse who reviewed my treatment, she said pinkness after TMs can go on for at least six months, got some stitches out for me, and I got help with the Lympho, which was confirmed as being there, (mild, thank goodness) when the BCN said it wasn’t...

 

Got my Rads treatment completion letter today, (the one that goes to the GP) and it says there, in confirmation of what others have said here, that ‘side effects will continue and reach their peak after 10-14 days..’, bit different to what the oncologist told me initially, that it would be at its worst 2-4 days after ! 😳

 

Had to look up ‘erythema’ as mentioned on the letter, (knew about fibrosis, the hardening, but erythema just means redness) ..I’d say mine was the one described as ‘bright’ ! There is also a mention in my Rads booklet, that I’d not noticed previously, says rads can make the arm weak, -  it’s down to nerve damage again, however that is not a common SE and is described as a late effect.

 

Cheers, Helen xx 

 

 

Member
Posts: 293
Registered: ‎30-03-2018

Re: First Few Weeks After Ringing That Bell

Hi Helen

 

Sorry bout the oil spillage!!.   What you like?   We will get there all of us I am sure and good to have this little thread going as it is helping me and like you say confirms we are not alone in our aches and pains.  I think we really have to just give it time.  I have also asked my BCN about councelling or mindfulness course etc.  Dont want things to get worse of which they may not but then again they  might so not going to wait for it to get worse if you know what I mean.     They haven't rang yet so must be pretty busy but she usually reads all her mails at the end of the day.          

 

 

Member
Posts: 142
Registered: ‎11-05-2018

Re: First Few Weeks After Ringing That Bell

Thank you so much for the replies, Chris and Gill, really encouraging to know I’m not alone..I am ringing a contact number today to see if I can sort out some counselling or CBT, whatever, to help. It really hits me hard sometimes and makes me feel life, good life, is over, you know ? Awful. I’ve had depression in the past and it’s not nice.

Been doing the arm and shoulder exercises, but sometimes only once a day, I admit..and having a physio for a sister is very handy, Chris, even if she sounds a taskmaster ! 😄 -  I will try the jar-opening exercises, that’s a great tip.

 

Drinking water and putting on the cream.. yes...

 

I had an awful fright yesterday too, I stupidly upended half a bottle of hydraulic oil all over myself, on my bad side too...! - while helping to do a mechanical job on the boat. (Concentration is not good at the mo and I can’t use chemo brain as an excuse, but that’s what it felt like!) I forgot completely that there was no bottom on this plastic bottle, (it was upended to drain the oil into the steering, can’t explain better, sorry) and when finished, I just turned it right way up...stupidly...Oil everywhere...boat is in a right mess, and I was worse! 

Had to rush down to the shower block- thank goodness there’s a shower ! - and wash off the oil that was all over arm, clothes, bra and boob... I was convinced it was stinging the skin on my hand, and was imagining the arm visibly swelling with Lympho ..Other people must’ve thought I was nuts racing down marina with a towel and shower gel while clad (braless) in husband’s spare trackies and sweatshirt ! 

 

Good grief. Well it made me momentarily forget the aches and pains I’ve been getting ! 

 

How to get rid of oil smell on good jeans 🤔😄 ?  (I’ll stick to housework and trying to get the garden less like a jungle, safer than messing about in boats at the mo...) 

 

Regards, and thanks again, ladies ! 

 

Helen (Thistle) xxx

 

 

Member
Posts: 293
Registered: ‎30-03-2018

Re: First Few Weeks After Ringing That Bell

Hi thistledown. 10/14 days after I’m afraid. 😟. My emotions are all over the place 9 weeks on along with more discomfort that the last 4 month. Have mailed my bcn this morning just for a bit of re assurance. I am sure she will ring me later so will let you all know what she says. I am sure it is all part of the healing process and all the nerves settling down. Will be back when she has rang me.
Member
Posts: 167
Registered: ‎12-05-2018

Re: First Few Weeks After Ringing That Bell

Thistledown. I have been having trouble with the grip on my effected side Fortunately my sister is a physio and reassures me it's down to the nerves etc reconnecting following the surgery she is a bit of a tyrant when it comes to me doing my exercises but has told me to practice taking the tops of bottles several times a day to improve grip. It does hurt but she tells me that's good. Her mantra no pain no gain!!
Member
Posts: 142
Registered: ‎11-05-2018

Re: First Few Weeks After Ringing That Bell

Hello Zippet

 

I finished rads on Friday last, been fairly ok, - but  today I felt dreadfully weak in the arm and shoulder, with a really sore area of skin on upper chest (with lots of little bumps, you know how it’s like when you’ve had a bit too much sun? - sometimes they turn to small blisters) and emotionally low..You mentioned you got similarly hit by sore skin, weakness and low mood 13 days after treatment end? 😬 -  I was told the worst should peak round about now, 3 or 4 days after, and then gradually improve, so here’s hoping it will..

 

Anyone else had their arm and hand feeling weak, - I can’t use left hand to turn taps on or anything lately ! Just not sure if it isn’t down to Lympho, which I have unfortunately developed, although it’s mild at present..

Yuck.

 

Thistle xx 

Member
Posts: 5
Registered: ‎18-08-2018

Re: First Few Weeks After Ringing That Bell

Hi I am new to the forum 

 

I rang the bell at the end of July i wished i joined alot earlier looking back now i see what i was feeling was what everyone one else was going through.

 

Thank you 

Member
Posts: 167
Registered: ‎12-05-2018

Re: First Few Weeks After Ringing That Bell

Gill. I have really missed having the grandsons stay over while I have been having treatment. We have alway had them staying at least once a week since they were really little my daughter has one little boy age 6 and my son has 3 boys 9,7 and 18 months old. The boys think I have had an operation on my shoulder and that's why they haven't been able to stay but I'm really hoping that they will be able to stay in the next few weeks. Like you say what goes on at nana and grandads is our secret. We have fab movie nights with popcorn or play monopoly and stay up till at least 8.30!!. But mum and dad don't know that!. Enjoy your midnight feast when it happens. Happy time's ahead xx
Member
Posts: 138
Registered: ‎10-08-2018

Re: First Few Weeks After Ringing That Bell

Love the Lego story Chris, brilliant.

 

Everyone seems to be being busy, and I'm starting to feel a bit inadequate!!  I do my walking in the park virtually every day, feeding the wildlife, getting recognised by crows and moorhens, lol.  We have a jackdaw who comes to our window sill in kitchen for 3 years now, since he was a scrawny youngster, with legs he had to grow into.  Quite amazing that he still turns up for some mealworms and a few croissant crumbs!!

 

Around here, it seems to have become a popular things for youngsters to decorate/paint/find pebbles, and leave them part-hidden in the parks and other places  for others to find, photo, and then maybe leave somewhere else - so I've found myself a lovely smooth large pebble, and I'm giving a lot of thought to this first effort  -  my sister is the artist of the family and leaves some fab ones around, but mine are going to be a bit more basic lol.  It's piddling down in London . . . 

Member
Posts: 293
Registered: ‎30-03-2018

Re: First Few Weeks After Ringing That Bell

Brilliant Chris. Love it. Off out with my two grand daughters tomorrow, special times with nana and grandad. They are also on sleep count down to a sleep over next weekend with the promised bike ride 😳. And midnight feast (at 8:00) lol. What happens at nana,s stays at nana,s Can’t wait happy and crazy times.
Member
Posts: 167
Registered: ‎12-05-2018

Re: First Few Weeks After Ringing That Bell

Lilacmoon - Thank you for replying I knew I had seen a post about sore nipple but could not find it Been to Boots and got cream and nipple pads hopefully I will get some relief...
Also thought I would share today's experience and hopefully make you smile

Took my grandsons to a lego event at the exhibition centre in Liverpool earlier today. Part of the exhibition is a model of the new cancer hospital they are hoping to build funded by selling lego bricks for £1.00 each. So we bought some bricks and the boys are adding them to the model,I turn around and who is standing next to me but one of the radiographers who had been treating me up to last week. Hi he said and then gave me a massive bear hug. How are you doing.you look really well. I'm great I say. Can't really stand surrounded by kids and say "actually my nipple is on fire and I'm knackered." Anyway my husband shakes him by the hand and says in a really loud voice thank you for looking after my wife although im suprised you recognised her with her clothes on. We did get a couple of strange looks from the people standing nearby!!
Community Champion
Posts: 9,803
Registered: ‎16-11-2016

Re: First Few Weeks After Ringing That Bell

Gill

 

Its a pleasure glad I can be of help x

 

Wow bridesmaids dresses that is something special.  Yep it is pouring down here, I am sitting doing a cross stitch baby sampler for my friend who is due in November, thought I ought to get my act together and a good excuse as there is nothing I can do outside.  Thank goodness I actually managed to get my lawns cut yesterday xxx

Member
Posts: 293
Registered: ‎30-03-2018

Re: First Few Weeks After Ringing That Bell

Thank you helana your an angel. It is all about over doing it I think as you say the aches and pains kick in and this is me. Busy dressmaking today as it’s raining. Little ones bridesmaid dresses. Exciting and it’s quite chilling also so I am relaxing in a fashion!! Thank you again for your kind and always re assuring words.
Community Champion
Posts: 9,803
Registered: ‎16-11-2016

Re: First Few Weeks After Ringing That Bell

Gill

 

Think you might well be running before you can walk.  It does take some time to recover from rads, I was told although it does get better as times goes on it can take up to a year before things settle down.  Occasionally, especially if I have overdone it in the garden, I will get some aches and pains.

 

I am sure that your bcn will not think that you are wasting their time, she will reassure you that everything is ok and that what you are feeling is normal.  I know mine did when I asked her the same thing a few months after rads when I was having some stabbing pains.

 

Have a lovely Sunday despite the flipping rain xxx

Member
Posts: 293
Registered: ‎30-03-2018

Re: First Few Weeks After Ringing That Bell

Morning all. Well almost 8 weeks on now and feeling ok. All se,s have now settled other than slight discomfort near snb scar and nipple. Trouble is I keep prodding and poking and checking just in case which I suppose isn’t helping. Might give bcn a quick mail see what she says. Don’t you just hate wasting their time with something that you know is fine and all part of the healing process . Maybe re assurance is what is needed. Also note to others with big boobs “don’t run lol”. Ran out from the rain on Friday and ouch pretty painful just like after the op when sat in the car and went over a pebble!! I suppose I have to accept that my boob nerves are still very much settling down. Am I trying to run before I can walk? This new norm is taking some getting used to. Have a good Sunday all and hope all going well for you.
Member
Posts: 143
Registered: ‎09-05-2018

Re: First Few Weeks After Ringing That Bell

Meant *It wasn't a pretty sight*!!
Member
Posts: 143
Registered: ‎09-05-2018

Re: First Few Weeks After Ringing That Bell

Hi Chris, I've posted about my nip in other threads, so apologies to anyone who's read my take on it already!!!
Scroll on if you have 😂😂😂
My skin did great, no issues at all but my nip didn't fair so well. It was very itchy and swollen and so so sore to touch. It was almost like a blister around it and although there was no blood or skin breakdown, it was a pretty sight.
Never forget the look of horror on my boyfriends face when i gave him a flash 🤢
I went to Boots and got a tube of Lanolin cream "Lansinoh" tiny little purple tube and a box of breast pads. After using it for a week my skin dried out and once the scab feel off it was lovely new skin underneath. Sorry for the graphics!! Boob and nip now fully recovered but i have more or less a full box of breast pads...........
🌼🌼