Hi
My mum has just been diagnosed with IBC and we’re due to talk to Onocologist this week, she’s waiting for CT scan as well, so there’s a lot we don’t know yet but after getting over the initial shock i’m looking for suggestions / advice on what to expect and if there are any things i can help to make this as managable as possible for her as this is my 1st experience of cancer in someone close to me, and i don’t really know what to expect. If there are some small (or big) things i can do to make her life easier while she goes through this it’d be great, Thanks for any advice xxxx
Dear botty
Welcome to the forum.
While you are waiting for some replies I thought I would also suggest that you give our Helpline a call for information and support. They are open from 9-5 on weekdays and 10-2 on Saturdays The number is 0808 800 6000
Very best wishes
Janet
BCC Moderator
After going throught bc for the last four months the biggest and the smallest thing my mom has done for me is to be there for me all the way through it. she has held my hand and we are have cried and laughed together. Together we are getting through it, and so will you and your mom.
Lots of hugs Carol
good advice
but also please dont be offended if you mum would like some alone time ,
my husband was so upset when i just needed some space to think everything through (im very black and white )and mine was an emergency for a rare form of cancer .
lizzy c
Hi,
Good advice from the above two posts - my Mum was dignosed last year and it was all such a total shock and I had never felt so helpless.
All I did was be there for her, I know it sounds like a cliche but looking back it was a powerful support for my Mum, I attended appointments with her (at her request) and went through it all as her shadow when she needed me.
I tried to be practical too and helped with the day to day chores but always trying to be mindful of not ‘taking over’ which I can have a tendency to do.
Don;t forget to look after yourself too and I am sure your Mum knows just how much you care.
Esbee x
Just you being there for her, how lovely - its me who has the cancer and my mum disowned me and my kids when my dad died over 2 yrs ago now! I am 53 and we all need each other no matter what we get served up - take care of each other x
Thank you so much for all your replys, it helps to know we’re not alone . . it’s the onocolgist today so i’m hoping to have a plan of attack and a bit more of an idea of what the future will hold - i’m telling myself it’s a good thing but i’ve woken this morning with a heavy dread sitting on top of me which i can’t shake. . . i just want this part over so we can get on and actually be doing something . . . .i’m not very good at doing nothing as you may of guessed - Thank you reading these this morninh have really helped xx
Hi botty,
Hope today has been ok for you and your Mum and that knowing what the next step is makes things a little easier for you both, I can empathise with ‘the heavy heart’ feeling as being in this situation is not pleasant at all, but maybe you can see a way forward after todays meeting?
Thinking of you both and wishing you well
Esbee x
P.S.nearly forgot to say - if you have any questions then the lovely people on here are great with knowledge and support.
Hi Botty sorry about your mums recent DX with IBC, I am 18 months down the road from her, By now you may have your treatment plan, depending on the results of scans etc…
It is normal to have chemo first then surgery and lastly Rads, also if she is her2 + she will have Herceptin.
I am stage 4 , that is I had secondaries in my Lungs, now the metastesis have completly gone and I am currently showing no evidence of disease (NED)
It’s a scarey time for all of you and all you can do is be there for your mum, listen to what she wants , once treatment starts its like a roller coaster ride, ups and downs , and you’ll want to get off !! It will get better , Pm me if you need any thing.
Jean
Hi Botty, I am sorry to hear about your mum’s diagnosis, but she is so lucky to have you by her side. I was diagnosed in January and I am closer to my mum now than I ever was before. It has been the best of this experience by far.
Some things that my mum has done for me (during diagnosis, surgery, chemo, rads and now hormonetherapy) that maybe you can do for yours are:
- As suggested, going with her to appointments.
- Keeping an agenda yourself with all her doctor appointments, as at times it might be busy.
- Getting familiar with the medication she’ll have to take and the secondary effects of each thing.
- Going with her to the drugstore or pharmacists to get new skin products (some treatments can make her skin sensitive and dry so she might need new shower gel, shampoo, make up, etc.)
- When you cook, cook for you and for her. My mum has brought us lots of the meals that she cooked for her and my dad. This would save me and my OH lots of time and energy that I didn’t have during treatment.
- Find het a local support group. They are so useful as they might offer emotional support, opportunities to socialise, practical advise on some of the secondary effects she migt face…
- If not given one by the hospital, find a good manual about BC, how to treat it and the secondary effetcs and give it to read to her or read it yourself, so that you know what’s going on and what she’s going through.
- Be patient if she is not always kind. Everybody tries to help but sometimes it gets overwhelming. Sometimes the best way of helping her will be to be in the same room in silence.
- Help her feel pretty. Our body can change dramatically during treatment and it takes a toll on our self esteem. A new flattering blouse or simple shiny lip gloss that makes us feel temporarily good about ourselves can go a long way.
- Make her drink LOTS of water during treatment. It will be good for her for so many reasons.
- Take things one day at a time and celebrate with her every little victory. Every scary appointment, every treatment completed. You both deserve it.
I hope this was useful and not overwhelming. Please ask any specific questions or PM us as you go along the way if you need it. I’m wishing you both the best!!
Carmy xxx
Thank you for the support and all the ideas (good list Carmy), i think we’re in a bit of a lull at the moment, she’s been diagnosed met all her doctors / nurses and know what is coming but as she’s got a heart mumur we’re waiting for a heart scan to ensure she can take the chemo or if they’ll need to change the drugs they’re planning on using so at the moment we’re just kinda of hanging around, which is kinda frustrating although it’s nice to have a moment just to be us and remember what life was life before it all becomes about hospital treatments and side effects . . .but the bigger part of me wants to get started -surely the sooner the better?
Mum’s been sent an appointment with the hospital hair / wig clinic and she’s a bit nervous about going, she’s booked her self into her own hair dresser (same one for 40 yrs ) this week and is planning on going short and get a colour / rinse in at the same time - she wants to go in feeling good and i get that, i usually don’t bother with make up day to day but i’m guessing hosiptal days the full face will be on, it’s my armour .
Again thank you and i wish you all well in your own journeys, please free feel to message me or reply on her anytime,
xxxxxxxxxxx
My Aunt is having chemo and herceptin for her cncer and her hands and feet are getting very sensitive. She hs lost one toenail and its loking like her fingernail are going the same way! Ha anyone heard of ‘black nail polish’ that can help in any way?
Hi,Botty. I was diaognosed IBCin December. My daughter and I are really close. I found it really helps when she comes to stay for the weekend, just the company and we go for girls days out shopping or just out for a coffee or stay at home and watch a chick flick, its so relaxing knowing I can just be myself. We are also on the phone to each other each day, if I’m not up to talking she understands. Just knowing she is there whenever I need her is the biggest help.