Great idea Moijan,
and thanks so much for that, as if sons can not get i will try this as get so tounge tied when on my own.
not been on here much as so stressed at moment ,but hopefully will work through it ,i always read the posts .
... Hello everyone....so sorry that a lot of you feel unable to chat to onc...totally understand...it must be the onc's lack of rapport, tho you say that fear can play a part and I do agree..I missed out on full feedback last time as I was too scared to hear it! .I feel very fortunate....with my onc, but not every doctor has those skills.
however, this is what I always try and do.... See if it appeals to you to try...
i type all all my questions out on my iPad and then hand it over to the onc, who goes through it....(I mean, what else can he do? When I've done that!)
if my iPad is out of service I write the questions down and hand that over)
I give a paper and pen to my advocate( other half, or a good friend and ask him/her to take notes on the answers and anything else I'm told.
Some people have taped the session on their phone so they can refer to it later...but I think a lot of doctors would find that threatening.
3/ you could ask the bcn/ a clinic nurse to be present ....quite acceptable...she will remember stuff for you
4/ you could write down 'I'm a bit too shell shocked to ask the questions I want to ask/ stuff in depth, please help me' at the top of the list
i hope that doesn't sound too 'clever clogs' , sorry apols if it. does.
i once had to use my friend as a mouthpiece as I had lost my voice and she spoke up for me. another time, I came out convinced the tumour was 16 centimetres when it was only 16 millimetres and she had written it down and was able to reassure me!
love and hugs,
Me too. I thought it was just my ancient computer playing up. Been happening for a couple of days now.
Now I know it isn't just me, maybe there are others, and perhaps BCC can sort it? Thanks for highlighting this. x
Is it just me being an IT incompetent or isn't this forum working properly. When I've been trying to look back at members' previous posts I've been taken right back to 2010
I'm sorry it's all been piling on top of you and making you feel so low. Hope you get some good counselling. You know you can come on here whenever you like and we will know how you are feeling.
Hugs Bon xx
Usually I can discuss things with oncologist. She has n ever been in a hurry. She will answer hubby too. I was just angry when she said the CT was compared to the xray from 4 weeks ago. I thought it should have been compared to previous CT. I would now have liked to ask more questions about my lungs but had been more concerned with my back at the time. Oh well, Feb isn't that far away. Thanks ladies.
Any suggestions for these ulcers in my mouth?
just read your mail and i have never heard of hubby not being able to ask questions,i would try and find out if it is hospital policy .
i dont have my hubby any more but sons come with me and they do ask questions and get the answers,but when first diagnosed i was asked if i was happy for oncologist and b c n to answer sons questions,they still dont ask everything of course as always come out and remember something that they were going to ask ,also my Mcmillan nurse asked if she could share with sons ,do try and find out as two lots of ears are better than one .
all the best
Hi ff, I'm glad to know you are staying on e/e which means it's working. I have alternate mri/cts because they told me when it's in your bones it is clearer with mri. So good you are having one.
I agree when seeing onc I come out with no clue as to what she has said, a comlete block. My husband comes and then I ask him what was said and he tells me afterwards. Only thing is he can't ask qu's in there because they just look at me and don't answer, disconcerting but it must be hospital policy.
love to all, try and have a relaxed weekend.
Carolyn, I'm feeling quite jealous about your babies!
How frustrating FF, we’ve all been been there. My oncologist has has she’s not going to bother doing any more. How on earth will she know when there’s No Evidence of Disease ha ha ha 🤶🎅🏻🎅🏻?
Happy birthday Jeanette🎉🎂🍾
Carolyn, it’s quite quite normal twins to be in put into incubators. You just need to be able to quish and quash them. Mummy and daddy are going to need quite a bit of help. Xx
I'm with you on back pain, it takes over your life (not mine at the moment thank goodness). I think an MRI will show more detail if there's any more detail to show (hope there isn't) so you can be more sure where you are . I usually come away from consultations feeling dissatisfied. I wish I could 'chat to my oncologist' as Moijan seems to be able to do. It's not a scenario I recognise. Should prepare better I suppose, my preparation usually consists of getting in a state.
Good wishes for your next scans.
Hugs Bon xx
Thank you Bon and Carolyn.Well they say I'm stable and get a scan in a Feb and appt on the 15th. There were a few changes in the lungs but they balanced each other out.
They said they see nothing new with back. I wasn't pleased that they compared the CT to the Cray from a few weeks ago. I thought that they would compare it to my CT from August. Apples to apples. She told me the other day she would send me for a bone scan next. Today she gave me a script for an MRI. She said next we would do a bone scan. All I know is I hurt and we found nothing out! I have broke out in more ulcers since this morning. This girl is going to take a nap! Frustrated FF!!!!!
Had my first Kadcyla on Friday. Had a dry mouth for a few days and fatigue for a day and a half, so not too bad, I just hope it’s working.
Funnyface, good luck with scan results.
Headed out the door for scan results!! Over the last couple days I broke out with some nasty mouth ulcers. Thankful for magic mouth wash. The biggest one is along the side of my tongue. Hits my teeth every time I even try to talk. I feel like an old cow that needs taken out to pasture and shot! On the other hand a lot of activity going on this weekend with friends. Can't wait to have some fun. Comedy night and dinner Friday night. Sat night basket bingo with my oldest son. The profit from it is being given to the non profit my son works for. He has to attend. Sunday out to breakfast for SIL's birthday. I will let you know results when I get home. FF
Ahhh, carolyn........little teenies. They will be safe in incubators, but of course a little worry until they are a bit bigger. They'll be fine. There's two of them after all. i imagine them holding hands! I'm so glad you are seeing them so soon. i saw little Anna that evening. On the phone my son firmly told me that 'by the way, we're not going PINK!!'. No stereotyping. Well, that's gone out the window. She has pink genes. A little princess. And you have one of each! i'm so envious.
Yes, still got hair, although it is brushing out a lot. I won't give it the chop until it looks bad. Then a buzz cut! For now nobody else would notice. Next treatment tomorrow, then sleeping for England again!
Carolyn.........what wonderful news!! Twins! As a little girl myself I had twin baby dolls and always wanted them myself. Definitely a drain on the £££ but who cares! When you meet them please give them a little squeeze from me. Babies are what's best in the world. What it's all about.
Your scan. I would say 'no news is good news' as you have heard nothing. But I think the 29th is a long time to wait. Everybody likes confirmation. But I have a good feeling.
Take care, and congratulations. Aren't you clever? Twins!
mo xxxxxxxx (Some of those are for you-know-who.)
Congratulations Carolyn, 2 lovely new grandchildren to spoil 🙂 Hoping that Mum and babies are doing well and you get to see them soon.
Lovely news Carolyn, so pleased for you. The little ones have the ability to take your mind off cancer when nothing else does.
hi carolyn .
i am not too bad as finished radio and have chem tablets two weeks out of three then herceptin once every three weeks ,i have to have a ct scan to see if chemo is working ,i dont think it is but hopefully i am wrong ,have not had appointment through yet for scan,i am just so so tired carolyn ,it can not be normal,though i do have a few good days .
just hoping for some good news .
oh carolyn ,
how lovely for you and plenty to keep you occupied,i have two grandsons 25 and 22 and two granddaughters age 25 and 22 ,none married as yet but the oldes grandson is looking at next year and his partener has two small boys 2 and 4 from a previous relationship,but they are wonderful little kids and love my grandson to bits ,the oldest one has just been with aaron and he said to me i dont have a daddy i have an aaron?,how do you answer that carolyn ,very difficult;
hi carolyn ,
i am delighted for you ,and hope mum and babies are all doing well ,now you will never have any spare cash believe me
take care and lots of hugs for everyone
yes, it does put you at risk if you add your email address.....also people won't want to email, in case you happened to not be who you appear to be...we get lots of people on here who try to find out who WE are and some who just want to use the forum to pressure sell, sadly.
my gut feeling is that you are a genuine user who really needs some advice and help, and I see some of use have responded....you can also ask the moderators to enable your private messaging then you can chat privately with anyone you choose.
so sorry to hear about mum....it's harder in some ways to be a helper/carer and have to watch than go through it ourselves. My guess is mums onc is being very thorough...try not to second guess/crystal ball as it just feels so much worse then. Also googling won't help either. Try and keep an open mind...they might just want a closer look at how mums cells are developing...to rule out stuff.
you can chat on the helpline above or ring Macmillan `they are excellent.
best of luck, much love and hugs, Moijan💚💚💚
Lauren, I’ve got cancer in my bone marrow(and about everywhere else ha ha) but the effect of it in the bone marrow is that your calcium levels are great,y altered (take Adcal with vit d for this) it also effects the blood cells being produced. I’m under an integrative oncology charity (www.canceroptions.com) which help with the right type of supplements. My main effect is haemoglobin levels which fall every seven weeks which which means I have two units of blood in that time period. I keep my white cells and platelet levels within the normal range (sometimes exceeding) with a supplement available from Amazon, Mico-Sol, Agarius Blazei musherooms. There was a study in Spain and Italy which treated stage4 breast cancer patients with this. The results were remarkable and they have been with me. My oncologist wanted all of the details as she wanted to share. They are about 50-54£ a month. I started off with two and am now on 3 a day, following advice. There are always ways to move forward. Good luck, and loads of hugs and kisses B x
Lauren, I'm not sure which hospital you're at but it won't hurt to keep phoning about your next appointment until you get one. Not sure why they're looking at bone marrow but you'll find out.write down your questions before you next go in. Try not to worry they will get her on treatment and then hopefully she will pick up. I have cancer in nearly every bone in my body but I expect to live for years(maybe I'm being overoptimistic) but there you go.i'm 60.it's good newsthat her other organs are free.being misdiagnosed is really annoying and would no doubt not help your mum to feel better.i was misdiagnosed for 4 years and lost a vocal cord to cancer because of that but it is important to keep looking forward. Stay on thissite because the people on here are lovely and will help you a lot.