I knew I would have to crash at some point!! The Queen of sleep has lost her sleepy head this wkend too! I was doing really well keeping a positive head, feeling strong & getting enough sleep until my meeting with surgeon on Friday (2 weeks after initial lumpectomy) didn’t get clear margins so I"m booked for 2 op to get clear margins 12 Oct. 1of 3 lymph nodes from biopsy were affected so have been told will also need full lymph node clearance on 12 Oct. I’m HER2 positive grade 3 invasive ductal carcinoma in situ. Will have chemo, then Rads & Herceptin. The information that I need full node clearance has totally floored me! I felt the surgeon was ‘skinny’ with providing me with information & I just sat there signing consent form for next op! Am I over worrying about having all lymph nodes removed? Will I regain full arm movement? Really stressing about risk of Lymphoedema as I am really clumsy & burn myself on the oven regularly.
Really worried about healing and recovery after 2nd op and 2nd under arm incision.
I’m going to try and write down all my questions and ring BC nurse on Monday. The not been able to sleep this wkend is not helping. Feeling overwhelmed and tearful.
Scooter
So sorry to hear you are struggl8ng scooter but i think we always have these days processing results and its always worse when they’ve been given on a Friday andxwe cant contact our BCN.
I had a cavity shave to achieve clear margins when i had DCIS last year
It was a quick and simple operation but it didnt include any lymph stuff.
I think as you say, the best thing is to write all of your worries and questions down to discuss with your BCN. They will reassure you that everything that is planned for you is to achieve the best possible long term tesults and rid you of the cancet. You can do it Scooter, although i know the road seems long. Keep going. Sending you a hug xc
Hi Scooter,
It’s always such a downer when things turn out to be more complicated that expected, as Ali says, it does take time to process it all & readjust so of course, you will feel
as you do at the mo.
At least you now know what needs to be done to get it dealt with, which it will be.
sending hugs
ann x
Scooter
Yep it is a good idea to write down all the questions that you have down for when you ring your bcn, she is there to help you, that way you will not forget them and I always find writing things down gets them out of my head helps to aid sleep as i have the comfort of knowing that I wont forget. It is a lot of information to process in only a few days since you received it, so just give yourself the space to take it all in and work on small milestones, try not to think too far ahead.
You are right all the worry and not being able to sleep because of it will be causing your feeling of being overwhelmed, the anxiety monster takes over in the wee small hours and all rational thought goes out the window, but you will get there, your team are working on the best treatment plan for yo.
Sending you a pair of the tough pants to help get you through.
Remember we are always here for you whenever you need us.
Helena xxx
Hi Scooter,
I know where you are coming from. I too was floored when I was told I had one node affected and might need clearance. I’d been so convinced that the pre-surgery biopsy and scan that showed no involvement would mean I’d be okay so was gutted about this when told, especially because of the lymphodema risk, 18 months post-clearance and I’m fine. I’m really careful about my dodgy arm wearing long sleeves to do the gardening and applying copious amounts of repellent when on holiday (mosquitos love me). As for cooking, I found a long oven gauntlet which goes practically to the elbow which is great. Got it from Lakeland I think. I’ve had no problems so far and have full movement back.
It’s rubbish when the treatment plan changes and throws you off course but you will get there in the end, I promise.
Ruth xxxx
Hi scooter
Sorry to read that your results are not what you hoped. Any change of plan is upsetting and it takes a while to adjust.
Its so hard to take everything in and will naturally feel overwhelming. Try to focus on one treatment at a time. Think about and ask questions on the surgery only, then you will have recovery time and be able consider the next step.
Sending a hug
Sue xx
Hi Scooter
i didn’t have lymph nodes done but have had three operations for margins so four ops in total. Ifound a really good youtube video of a uk ot doing arm exercises to stop lymphodema. Also tere are some usa videos on clearing the lymphatic system. There are some specialist breast cancer massage people about too. There is a brilliant one near Worthing, if you happen to be near there.
the margin thingy is pretty easy but be kind to your self. After my fourth op, even though lymph nodes weren’t touched, she’d obviously had a good rummage around so my arm was more grumpy again, particularly around four weeks after when I went back to work. I wore a tubigrip compression thingy on my upper arm which really helped.
Thanks to all you lovely ladies for your supportive messages & sharing your experiences. It is a massive help. The YouTube video on arm exercises to stop lymphodema is a good idea.
My hubby said this morning that we must order new oven gloves & garden gloves etc…so will look in Lakeland.
Peggycat I felt just like you…been so convinced that the pre-surgery scan showed no involvement would mean I’d be okay.
I will be kind to myself & give myself time to process the new information.
Thanks Ladybowler for the tough pants!! I have used my Headspace meditation App this afternoon to try get me back where I need to be.
Time for a nap before a date night out this evening! Nanna & Grandad stepping in to help with the kids.
Scooter x
Well I’m not wearing a 1950’s dress this evening or Tough pants ;-), …but I am wearing a new dress & plan to go for a pre dinner cocktail if that sounds the ticket! X
All the best for your PET scan Jencat. It’s very easy to go through. I’ve had so many scans now I got to the point where I actually didn’t care what the results were i just wanted them to start some treatment to get rid of it. Here i am 4 days into chemo 1. I looked at it like it was so the doctors knew exactly what they needed to treat. I stopped getting myself bogged down with technical jargon that actually meant very little to me. All I wanted to know is that they knew and what they were going to do about it.
Will be thinking of you tomorrow
Cassie x
Good luck tomorrow Jencat .
Yes I think it’s 8 hours after you are still radioactive. I didn’t glow in the dark that time either. Gutted.
Thinking of you today Jencat.Had some better nights sleep then reverted to 3am wake up call …?
Whytefawn
What a great way of coping! I realised that Im very similar. If I have a problem, then solve it! As long as we can prepare which helps recovery.xx
Jencat
Best wishes for todays results. Lots of live and you have Helenas (Lady Bowlers)big pants and we are all holding hands.xxx
Jencat
Just checking yo see how you are my dear. Just got in from work xxxx
Glad you have got it over with Jencat -could have kept you company at 2.30 …
Oh no Jencat you got strapped in! I just got told to hold my hands above my head and grip a strap but I wasn’t secured down or anything. They also told me that they would be able to hear me through the intercom if I needed them. It makes such a big difference when the staff give you all the information and tell you exactly what’s going to happen. Sorry to hear you had a bad experience.
Big hugs
Cassie x
Not easy at all these scans - they leave you alone with your thoughts …
Hi Jencat,
Sorry to hear it was a bit of a difficult experience, but at least it’s another step along the way.
ann x
I’ve got my positive head back!!! The windy weather today has blown away my doom & gloom & I met up with a friend of a friend today who is 12 months forward from a double mastectomy. So I feel fortunate to so far only be dealing with a lumpectomy. We also talked about coping with risks of Lymphoedema, & feel reassured that I can manage this.
I’ve read a little today about HER2 + & Herceptin, so yes I’m thankful & feel fortunate that Herceptin is now available in 2017!
Planning on going for a Pixie hair cut in a couple of weeks …mainly to help prepare my little boy to how Mummy appearance will change. I haven’t told him yet that Mummy might loose her hair. He knows I have to go into hospital again next week for my ‘lump’ …but don’t feel ready to tell him anymore.
I’ve got my lovely Pukka night time tea bag for after a bubble bath.
Hope all you ladies have a restful evening & a peaceful sleep. X
Scooter