Hi Sam, next time you see the surgeon/oncologist maybe you can ask why they don’t do the CT, MRI and bone scan for your piece of mind… or you can ask the BC nurse… last time I was worried about the spreading and the BC nurse explain and reassured me over the phone. You can call them anytime during office hour and they normally very good… xx
I just don’t understand why everyone who has affected lymph nodes are having scans ect but I’m not? Xx
And there’s no breast care nurses for me to talk to till Monday…I’m so scared again everything going through my mind x
Sam, I know it’s difficult, but I’m sure they have reason why they don’t think you need scans. Or maybe they just haven’t inform you yet and will give you information later on. Normally the hospital is the one who call you to arrange scans etc, and you can also ask the BC nurse to inform you what to expect. Yes BC nurse only work Monday-Friday. My MRI were 2 weeks after I met the surgeon, so yours maybe coming soon. Just write down all questions you have in mind and ask them on Monday. Try not to worry too much, You are in a good hand. NHS has cancer procedure/rule that they must follow. Take care xx
Hi dam I had auktra sound and was told no lymph involvement after first op they tested removed lymph nodes and csncer was in 4 of 5 it was only because of this I had ct scan. When you have your surgery they should remove lymph nodes for testing and then if necessary they will request additional scans x
Sorry typos
Hi Sam even and ultra sound x
Thanks once I saw sergeon yesterday came out feeling positive then today I just can’t stop crying,I feel so scared thinking it’s spread and how they can say Stage 1 from an mammogram and ultrasound and biopsy last? When it’s in a lymph node x
Hi Sam
Whilst waiting for ct scan results I woke at 2 am with pain in my toe so of course I was totally irrational and convinced it had spread everywhere from my breast to my toe. It hadn’t but our mind plays tricks on us. You need to try and trust and believe in your team and know that they will do everything they need to if and when necessary x sending you s big hug xx
Thanks SueW it’s such worrying time and overthinking is my worse x
Hello
I’m glad I’m the only one- i.e. now that the chemo side effects are less prominent we have more time to dwell on the bigger picture around treatment , scans etc.
I had my mastectomy first but otherwise will have the same treatment combo Sam. They have also suggested ovarian removal which I’ll be up for (might as well take anything I don’t need out - I no longer trust my body).
Before surgery, I had a MRI and CT scans as had around 20 tumours in the breast, The CT showed tiny lung nodules of doubtful significance, but also some bone irregularities so then I needed a PET scan which thought bones were OK. I was told lung nodules would need following up. Waiting for scan results was horrific.
After the mastectomy,although I still had lots of tumours, one clump was considered all part of one seven cm tumour and grade 3 rather than the grade 1 found on biopsy. I think if they’d known the size and grade I would have had chemo first like some of you.
Thanks for the advice re clexane Geordie- that is helping. I’ve had some bad nights waking short of breath but seem to be getting a bit better. I’m now worrying about the fact that that my lung nodules were not seen on the CT scan for the PE this week . If chemo has made them disappear, could they have been secondaries after all? I don’t get to see my oncologist til Thurs.
This thing is such a roller coaster. I want to get off!
Sorry to hear some of the kids have colds etc- I guess inevitable but so hard not to be able to cuddle and care for them. We picked the wrong season to be going into chemo. I think starting in Feb would be better. As if you ever get a choice!
We have my 5 year old’s party tomorrow (technically today- I’m not sleeping). Although I’m better, I still don’t feel well enough to run the party. His godmother is coming to help so I may disappear for some of it to reduce infection risk. Not often you get a valid excuse to opt out of running a kid party! We have ordered a bouncy castle so hopefully they won’t need much additional entertaining.
Its been good to hear all the positive stories of people feeling better. I am much better but in honesty was expecting to be brighter than I am. I guess I’d like to see myself as a strong women who can deal with chemo. But I am so not…
My hair is still in and husband has bought me some Aldi clippers (it would feel a bit odd to use the dog’s , as much as I love her) . My debate now is should I shave it now in my ‘good’ week whilst I feel a bit physically and emotionally stronger or do I wait as long as possible. My wigs have not arrived yet.
Sorry for such a long post. I’m now just waiting for the zopiclone to kick in so I can have few hours of not worrying. I’m stil in my 'chemo sanctuary ’ on the top floor so as not to disturb my husband . Think he is enjoying having our bed all to himself. I haven’t been the best bed partner for several weeks.
love to all on this journey.
Good morning How
You are right, this rollercoaster is one we all don’t want and wish that when we wake up its a dream…but it isn’t and we need to go through what treatment they give us not to just mend us but to give us a better quality of life in the future.
I’m sure you are strong but just don’t feel it right now as the does make our mind wander and it’s with us 24/7! Strong is built up as we go along and just by reading your post you are doing extremely well just by writing your post. Some can’t event talk about illness. Have you been to Maggie’s Centre?
As with rhe weather we just need to take the right precautions as you are doing and asking someone else to take over the kiddies party, again you will feel guilty but your little one hasn’t missed out, the party goes on!
Mum lives in Hong Kong and it is so hot there I can’t imagine being treated there. It’s humid and stuffy and very crowded. When mum has apps at the hospital she said there are 100s of people waiting to be treated! Parking is difficult. We have not bad weather considering, just need to wrap up and hats is good for this weather so we don’t feel uncomfortable wearing a hat all of the time. Here we can drive to wherever we need and straight home but over there it’s apts and difficult to park. I’ve also lived in HK and don’t realised how convenient everything is here for for us going through treatment. We have the best service here for what we have and not have to worry about paying thousands of pounds to get quicker treatment like they do over there. That’s me a over and over finding things to make myself feel better!
Have you booked your flu jab?
Regarding your hair, I had mine cut in stages and now it’s a number 2 with clipper.chemo nurse said shaving can cut and we are more risk for infection so cutting very short is good enough. It will be easier to cope with shorter hair falling out and if you are worried waking up to hair on pillow then invest in a satin/silk nightcap which protects your scalp and gathers the hair.
Sleeping separately from hubby is a good idea as you don’t need to worry about waking him, he will need his sleep to focus on things to help you and also you don’t need to worry about waking him.
It sounds like you are doing well Jow, chin up! We all have our up and down days and take one day at a time. Rest is what we need and a clear mind to help us recover. It is hard but we will do it!
I hope the party goes well, you may feel a bit down today because you can’t do what you usualk y can but feel good that you have good people around you to help so you can sit back…and that is coming from a single mother who has brought up my 20 year old soon to go to Uni again, Ive run my business for 18 years single handed and needed to be very strong and independent! I am now taking a back seat and letting all my friends run around for me and giving my staff more responsibilities.
Let us know how the party goes! I will be going into work for a few hours today as its my good week.xxx
Joe all I can do is send positive thoughts and a hug as ck has responded to your post so well x ck you are so articulate and manage to put into words what the rest of us are thinking thank you for speaking from the heart much love x
Hi jow,
Regarding the hair loss, I decided the shave mine as soon as the shedding started. I’ve found it much harder than I thought I would with no hair. I am so self conscious- don’t like to be seen bald, even self conscious in scarves and hats. The only way I can go out is with wig or heathers hair band and a baker boy cap! Hot itchy head and headache yesterday and today. Don’t know if it’s best to keep your hair as long as possible or do it while you are strong!
I’m sure it will get better with time. You will no doubt cope much better than me! Good luck and keep strong. You are doing so well,
Cathx
Cathysid me and my sister are doing brave the shave on 9th October before I start chemo x I decided to take back a little bit of control and we are up to £1200 in sponsorship too ?
Hi everyone. Urg nosebleeds today and really sore eyes…anyone had this??..whats that about. Hair falling a little today from all sorts of place…omg lol. Gonna get it shaved tomorrow as there is a hairdresser locally who will do it for free. Trying to get up the energy to clean the house. I know ill feel better when its done. Might just have a kip first…
Just wanted to add…as ive just reread my post…its the hair on my HEAD getting shaved?
Big hugs to you all especially Jow and CK for your heartfelt posts. Someone said to me at a Haven support group the other day that it puts pressure on us all when people tell us we’re strong and it really made me think. There’s an expectation that we should all be superwomen through our cancer journey but that isn’t the reality for us on this rollercoaster that we can’t get off. Maybe that’s what many of us are starting to feel now we’re well and truly into our chemo journey. All we can do is the best we can and it’s ok to sometimes take refuge and not be perfect. I think, deep down, those around us don’t really expect us to be perfect and it might do them good to see the real vulnerable human beings behind all of our strong women masks!
Unjoya - I have had itchy sore eyes for the past week and think, in my case, that it is my allergies coming back as my immune system kicks back in. Chemo can also dry your eyes out and some normal eyedrops have helped me. With regards to the nosebleeds, this is one to tell your BCN about tomorrow as it could be related to your platelets and they might be able to give you something for it.
Unjoya - I have had daily nose bleeds from about day 7 till day 16 after chemo. It’s on my list of side effects from the drug combo I’m having. They seem to have stopped now, thank goodness!
I just want to send love to everybody… and hope we will get over it soon and all the cancer in our body disappear forever. Keep strong xxxx
Sending everyone a hug! So many strong women here - although i know we dont always feel it. I am off to the dentist in the morning and then my first ever flu jab! Its all Rock n Roll xxx