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Dear Norberte,
Thanks for this, I think it clarifies things very nicely and I’m with you on your suggestions of what the thread may be used for. To be honest, I’m more likely to use the other threads since I tend to post now if I’ve got a specific question / point about treatments or symptoms. I will watch this thread with interest though and will join in when I can. Your comment about civil partnership strikes a cord though - partner and me have been together for 22 years now. We did the civil partnership primarily to avoid any of the issues about me not being officially her next of kin. Not the most romantic of reasons but we feel much more secure that our wishes will be taken into account when needed for either of us (which I hope will not be for a long time yet!). I was also interested in your comment about taking time off work to support partner. I’ve been very lucky to work in a place where I have felt very supported both by the organisation and by my colleagues. If this had not been the case the added stress would have been appalling.
Sharon x
Hi Norberte,
Just a quick one to bump the thread and hopefully getv some notice.
How are you doing at the mo. have you had follow-up appt after op yet?Staging, planning etc? Hope you’re coping ok.
Love Julie x
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Hi Norberte,
Great news! Glad you won’t need rads or chemo, they’re do-able but
obviously not welcome so glad you don’t need them.
Sorry to hear about the rest of it though but I’m afraid all these nasties seem to go with the whole cancer experience! Watch that infected wound though, have they given you antibiotics? After my primary op I was really poorly and had to be readmitted and spent 10 days on IV antibiotics and anti-bacterials so just keep an eye on yourself and if the temperature doesn’t settle get some more help.
Hope all goes well. Yes ok re threads, hope some others start posting more soon as nice to chat. Take care,
Julie x
Hi
I have been treated with DCIS including chemo, mastectomy and radiotherapy. My partner (of ten years) has attended most of my consultations with me. Firstly to support me and secondly to remember between us the questions we want to raise and the information given. I have been disappointed by the number of times when the consultants and nursing staff have subsequently referred to her as my ‘friend’ both in speaking with us and in written reports to other departments and my GP. It is as if there is some invisible barrier to their being able to take this on board. Perhaps we have to be camp or wear a logo on a t-shirt to be able to have our relationship acknowledged!
I have been taking Femara and have had a few side effects. Worst of all urticaria which erupts at all times of day or night on different parts of my body which makes me incredibly itchy - mostly at night a couple of hours after I have taken it. I take anti-histamine when it gets ferocious. I also get headaches and nausea/vomiting. I started taking it at night so that I would not be so badly affected in the daytime. They say things should settle down after a couple of months, but so far this has not been the case. My consultant is suggesting I might try Arimidex which may have less serious side effects. Does anyone have any experience of this?
So glad to have this thread.
Harebell
Hi everyone, and welcome Harebell,
firstly just to say thanks to Norberte for your continuing good work in keeping this thread up and running. Also lovely to log on and find the rest of you out there too, very lovely feeling.
Nothing much to report from me; finished my rads a few weeks ago and have started part time work again. I went back for a replacement prosthesis cos the first one I had was really uncomfortable only to discover I had been wearing it at 90 degree angle to the way i was meant to be!!! Still changed to the lighter version and am well pleased.
Harebell - I only got the “friend” comment once out of the 72 health professionals I’ve met since diagnosis in feb 2010 - not bad eh but I didn’t let him get away with it - but its too tiring to challenge the whole time and esp when you are feeling emotionally vulnerable. Luckily for me my partner works in the department where I was treated so to lots of people we weren’t news which really helped. Yes and by the way isn’t it amazing -72 health professionals in 8 months, and I had really good Dr continuity. I’m telling everyone cos I think it makes them realise how tiring and demanding being a patient is.
warm regards everyone, Nicola
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Norberte,
I hope your infection is clearing up! I was interested to hear you don’t have to have rads. I went as far as getting the tattoos and then opted not have the actual rads as the sentinel node was clear and the tumour small and the picture of possible side effects painted by the oncologist was so terrifying. It felt like a sledgehammer to crack a nut. My surgeon raised his eyebrows but I didn’t get lectured.
I have attended all hosp appointments by myself but only that oncologist made some remark hinting at lack of a ‘supportive’ partner. It just didn’t occur to her that I chose to come alone and would have found it quite stressful to have the (male) spouse of 44 or so years tagging along as well. (I don’t attend his hosp appointments with him either.)
On tamoxifen I suffered very bad leg and foot cramps and after three months got a temporary artery blockage behind one eye. After another load of hosp appointments and tests I’ve now been on arimidex for 3 months and holding the geriatric stiffness at bay with glucosamine & chondroitin. I can’t see myself completing 5 years of it.
Cheers all
I just wanted to say a huge thank you to Norbert for bringing this subject to the fore.
Before having BC myself, I never thought for one minute about the difficulties than any minority might face or their particular needs, be it being lesbian or gay, being a different race, or disability, and I’m glad that Ive learnt more and can therefore be more understanding. I wonder if gay men have such a hard ride with mens cancers?
I live in a small, pretty backward looking country village and we honestly dont ever get to see the wider picture of life (mores the pity) apart from the usual token indian,black or chinese picture in the pamphlets handed out at the hospital, where are the photos of happy lesbian or gay couples I wonder?
I sincerely hope that anyones sexuality hasnt made their already tough journey more difficult, that would make our so called understanding society a complete sham, all the best gals x
SS
Hope you are feeling better Norberte, love the noncompetitive comment - I look forward to hearing how many your professional total becomes! Stillstanding, welcome and wow, what a great online name!
I am off to celebrate being 50 this weekend, feel pretty emotional about it all, the past and the future, the loss of carefree me but the gain of a wiseness at such a perfect time in my life. 25 lesbains in a castle in Cumbria, should be fun.
Nicola
Hi Nicola
Hope you have a great birthday weekend in Cumbria with all the girls – sounds wonderful!
Marilyn xx
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HI ALL
JUST TO SAY WHAT A BRILLIANT SECTION. I was diag June 08 and have had chemo, op (lumpectomy Jan 09) and radio till April 10. Came back to say hello to my old chemo supporters.
Nicola hope you had a great time in Cumbria, we were there in Aug for a week, fantastic walks although needed more energy than I really had. Harebell am on Arimidex for 5 years (well another 3.5 now) and my legs ache especially first thing in the morning, stiff but gets better with usage!!! Am always tired aswell but that could be age (54) or just all the treatements, I will never know, unless after the 5 years of Arimidex I suddenly become a @thirty@ something again… I live in hope. Have been with my partner for 3 years but have known her for 30, she is a nurse so very helpful !!! Hope to ‘chat’ again soon, best wishes to all, Chris x
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Hi everyone, doesnt time fly by. It seems to be work work and sometimes work!!! Cos I am a shift worker (support adults with learning difficulties) I seem to be going to work or coming back from work. Walking my old lurcher or cleaning the guinea pigs out!!!
Yes Norberte having a nurse as partner was really helpful if not a bit bossy!!! YOU HAVE TO EAT SOMETHING… DAYS AFTER CHEMO NOT LIKELY. (made up for it since tho) . Am going for a scan next tuesday as at my last 6 monthly check up the surgeon said he thought he could feel hardening of the glands under my ‘good’ arm whatever that means so here we go again… oh a a mamo thrown in for good measure. Have to go half way through work tho and that day I am supporting someone to go horseriding, oh joy I will probably smell of horse … never mind I will have to take a very large can of deo !!!
love to all
Chris xx
Hello everyone (8 of us at last count!) I nearly named you all in my greeting but got cold feet in case I missed someone, and then also thought it might be a bit exclusive to anyone new joining the thread…
Three updates from me-
-25 lesbians in a castle in cumbria was wonderful, and 4 days recovery with just my other half also in cumbria was even better! Seem to have lost my knack on the pool table tho.
-on the most helpful wife topic my other half is actually an oncologist, but luckily doesn’t know a thing about breast cancer otherwise it would have been too wierd. What is really strange now tho is meeting her colleagues who say things like " yeh the patients always bla bla bla" or “yes everyone on the holiday seemed to have had cancer and I wanted to get away from it all”. Very irritating - I know its a defence mechanism guys but we too are people just like you…shame, they used to be a good laugh to go out with.
-have lots of follow up appointments this week - why can’t they combine them for goodness sake. Anyway makes me feel like a patient again which is nasty.
I hope all your trials and tribulations are lessening out there dear friends…best Nicola
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