Hello, I was hoping to get in contact with anyone who will be commencing chemo towards the end of July and if they will be having treatments at university college hosp.
It has been four weeks since I had a double mastectomy, I have been told I have a very aggressive tumour that spread to my nodes and am er+ so I will be having fec-docetaxel and herceptin. I am just waiting for my appointment to come through so that this whole process can start, I am a 35 year old mother of two girls a 3 year old and one year old. I am feeling very deflated and afraid. I’m scared of the chemo, scared I’m going to leave my kids and husband. I know with this disease there are good and bad days but now ive seen in black and white the seriousness of it all I cant snap out of thinking the worst. I need some positive news from women who have come through this as I am so afraid of this returning after treatment. Since this all began I haven’t left my home other than to go to my hospital appts. I don’t want to see anyone so wont take my child to school or any play groups.
I will be looking for tips for when chemo starts like is it worth having the cold cap or is it just such an unpleasant experience that your just prolonging the agony because all the hair falls out eventually. Can anyone recommend a good wig/headscarf place etc. Id just really like to be able to chat to someone going through this with a young family as well.
Many thanks in advance to anyone who responds
Hi there everythingisrosie
Sorry you haven’t had any replies as yet but I’m sure others will be along soon with support and information.
In the meantime, you might find some support by calling our Helpline. They’re open 9-5 weekdays and 10-2 on Saturday. They’re a great source of information and support or can just offer a listening ear if you need to offload.
Best wishes.
Louise
Facilitator
Hi
I’m a bit older than you and my kids have grown up but I have been through the treatment, 3 fec and 3 tax. I was terrified of the chemo and delayed it as long as I dared.
Best advice I can give to you is go with the flow, if you feel tired then rest, I didn’t tell anyone about my cancer or treatment, only very close family knew.
I am from the northwest and recieved a lovely wig for free from the hospital here, I found sites online for scarves and hats. Annabandana does lovely scarves and skull caps, I had some really funky ones from there.
Just remember that life is for living, we all know there is a risk of recurrence but what a waste of time it is worring that it will come back, that bridge will be crossed if or when it arrives, enjoy your kids, please go out and live your life as normally as you can.
I stayed at home at first and then I thought b****r this for a game of soldiers and then started to get back to as normal a life as I could.
Best wishes to you and good luck. M
Hi Everythingisrosie. I’m a survivor from last year! I was different from applestreet, in that I told everybody, and set up a Caring Bridge website (specially for situations like this) where I could post updates (with as much or little information as I wanted) and friends could keep up to date without me having to tell everyone a million times. They left me messages of support, and I found that a good way of omanaging communications. You can have different levels of privacy, ranging from “the world” to only those you invite and give a password to (I think) (I chose something in the middle)
My kids are young adults, so I’m in a very different place from you, but they were the age of yours when I had my first liump. It turned out to be a cyst, but I remember that whilst I chose to think positive, sometimes I would suddenly wonder how the children were going to manage without me, and start planning my funeral! Seems quite normal… and I found it helpful to have a few folk I could be “real” with…
Regarding help - is there a July Chemo thread? if so, I recommend you join it and travel with others - it’s so helpful. or gate-crash the August one. If there aren’t either, start one, and others WILL come and join you! You might also find some helpful friendships in the “younger womens” bit of the site. (edit: I’ve just notcied there’s a “starting chemo in August” thread - I joined the May thread last year, even though I started end April, cause the April one didn’t quite happen/gel)
There is a thread called “survival tips for chemo” or something similar, and that’s really helpful. I bought loads of scarves (BCC run something called Headstrong in many areas with tips and help) and I bought a bandana from the site mentioned above. Personally, I ended up wearing my wig most, cause I felt the scarves shouted “I have cancer” more than the bald head in some ways… and my NHS wig was excellent. In the heat, I sometimes was brave and went “naked”. BUFFS are really useful. comfortable, fold up small, easy… I slept in one every night when it wasn’t hot. You might find a towel over your pillow helpful i this weather, cause hair seems to absorb perspiration (or not, if you haven’t got any!)
Book yourself treats for your “good week” (third week)… this is a horrible path to have to be on, so it’s important to build in NICE things…
Finally, talk to your GP and or Breast Care Nurse if you have ANY questions/concerns. There is no such thing as a daft question. And talk to us on here. PM me if you want to.
Hope someone else comes along with their tuppenceworth soon. You WILL get through this.
Jane