Breast Cancer Now Forum

Big thank you, Jaybro Wonky & Lucy51.  You really understand how I feel.   I didn’t intend any criticism of my friends.  They have been a lifeline during treatment.  But they have their troubles and I do my best to be a good friend.   Everyone tells me how well I look and it’s only those like you, who have been through this particular ordeal, who understand how the effects of breast cancer go on far longer than people imagine.  I think I was trying to convince myself to cut myself some slack and stop pretending everything’s fine.   You’ve cheered me up with your posts.  I hope that this (long) recovery goes well for you. It has taken me ages even to start posting again - I wanted to put a horrible year behind me.  So thank you for hearing and responding. ... View more

Sometimes feels like cancer never lets go!  I’m so sorry you have had this development and I hope things go well.  Must be devastating to be going through yet more treatment (and its aftermath).   I hope people are sympathetic.  With some, you’d think cancer was like a stubbed toe - painful at the time but all over now isn’t it?   Hugs ... View more

I found the programme item interesting mainly because of the tone, which I recognised as the way I feel too.  People always ask me now if I’ve “had the all clear”.  I wish.  It’s not like that; so much of what happens after cancer treatment is not what people imagine.   You’re still getting the runaround, Christine, regarding the echo and your herceptin treatment.  Must be very wearing, especially when you get contradictory information. I felt the same about jaw problems (bone necrosis!) and the acid infusions but was persuaded it would be worthwhile.   I was also persuaded to take part in a trial.  After three months of complete silence, I rang the hospital about it.  I found out that, because of an administrative problem (forgetting my existence?) it is now too long after the end of my radiotherapy for me to take part, so goodbye to all the advantages which were promised as an inducement.  I think the oncologist’s secretary expected me to be angry but I’ve gone beyond that to a weary cynicism.   I hope it’s good news, Michelle, when you get your results back next week.  You must be so fed up with the needles.  Hope your year check is ok, Fiona.  My fingers are crossed for Friday.   Saw daffodils on my walk today.  Won’t be winter forever.                     ... View more

I wondered if anyone heard From our Home Correspondent on radio 4 last weekend.  There was a thoughtful (and thought-provoking) item by Carly Appleby on her breast cancer treatment.   Hope everyone is ok. ... View more

One year is quite a milestone, Gygi.  Mine was the 18th December but I didn’t think about it much on the anniversary day.  I was numb with fear at the time of diagnosis; there seemed to be a thick wall of glass between me and the rest of the world.  Although I spent this Christmas in bed with a chest infection, nothing could be as bad as last Christmas.  The surgeon did the 6-month check yesterday & it was ok.     I’ve bought a bullet journal for 2019, which will be entirely devoted to making the most of my time (it won’t be about housework).  I’m trying to get used to saying “I’ve had cancer,” instead of “I have cancer”.  My wig and all the head coverings have been washed and put away.  Bikini summer sounds great.   Hope  your house has warmed up, Michelle.  Slovenia is a beautiful place and spending Christmas there must have been wonderful.   May 2019 be a fabulous year for all of us.  Think we’ve earned it. x   ... View more

So glad you didn’t have to have that injection, Gygi.  I’m hoping 2019 will be a big improvement on the year that’s nearly gone and for all of us. ... View more

At last, I have something positive to post about instead of ranting!  I had an end of treatment session today and it was wonderful.  The kind nurse running it turned out to be my newly-assigned breast-care nurse.  I was given the time to voice my fears and worries and left with a clear account of the follow up I will have.  My biggest fear - that I was having zoledronic acid to delay inevitable bone cancer - turned out to be wrong and based on something a doctor had said which I had probably misinterpreted.   When I finished my treatment without any plan about what came next, my imagination went into overdrive.  I built disaster scenarios out of scraps of conversation during hospital treatment sessions.  I thought the situation was: you’ve had your treatment, now go away and stop bothering us.   The relief is indescribable.  I wanted to cry and do a little dance at the same time. ... View more

Hi Christine   Sorry it’s been such a miserable week.  Not self-absorbed and not going on - this is where it’s ok to voice things when those who haven’t gone through this particular mill might not understand.   I had face-to-face counselling and found it really helpful.  My most pressing problem was that someone I know socially is part of the counselling team.  I don’t much like this person and had to make sure that absolutely nothing from my sessions ever got to her.  Once that was sorted, the counselling was quite demanding but it helped me a lot.  I found myself opening up about things I’ve never told anyone.  Four sessions were enough for me because I didn’t want to go any deeper.   Hope that helps.  Trusting another person with private stuff feels very risky and only you can know if it’s worth the risk.  Everything depends on who you get. ... View more

Thanks for your post, Michelle.  Now that treatment has ended, I vary between feeling euphoric that it’s over and terrified of recurrence.  Yes, I feel emotional too.  It feels as though I’ve crossed some divide and there is no way back.  I’m glad you were able to get counselling.  I had 4 sessions which eased me through a dreadful period of meltdowns that happened because I couldn’t cope.   I hope you have a lovely Christmas away.  Hope, too, that for all of us 2019 is an improvement on the year we’ve just endured. ... View more

Hi Christine   I hope things have got a bit better since yesterday.  The confusion and fear must have been awful.  It sounds as though the details of your treatment are just not being joined up by the medics involved.   How is the letrozole going?  I was supposed to have this but the oncologist decided on exemestane instead - same sort of drug.  So far, the effects have not been bad at all, so I hope you have the same experience with letrozole.   I’ve got an end-of-treatment appointment next week with the breast care nurse team - but still no assigned nurse.   ... View more

Oh Gigi, this must have been terrifying.  Thank goodness there’s no clot.  I hope you are having a good rest this weekend with lots of tlc.   ... View more

Thanks for this, Christine.  I’m not saying it’s reassuring that you went through the same thing - horrible for both of us.  Does make me feel less of a grumpy person, though.  Letter confirming surgeon’s 6-month check (at 10 months) arrived today.     What was reassuring was to know that joint pain seems to be a side effect of what we’ve been through and that gives me hope that this is a side effect which will go.  I feel as though I should have a sign saying ”Sorry, I’m a bit slow” stuck to the back of my head when I am going up or down stairs, one at a time like a toddler.     Herceptin side effects do not sound good.  A friend recommended sachets of root ginger & turmeric for making a hot drink.  It’s supposed to help reduce inflammation but even if it doesn’t, it tastes nice. ... View more

Hi Gigi, good to hear how things are going for you.  It sounds as though you are recovering, despite the exhaustion.   I’ve just discovered how a person can slip through the cracks of the system.  Treatment ended a couple of months ago and then - nothing.  I finally rang the breast care nurse line yesterday and explained that I didn’t have an assigned nurse but was worried that I had been abandoned (do I have to get stage 4 bone cancer before anyone checks?).  As if by miracle, an appointment with the surgeon was arranged for this month.  I was booked into an end-of-treatment clinic (who knew such a thing existed? no one told me).  I was assured I would get an appointment for my yearly mammogram.  What a lot of target boxes finally got ticked!   What concerns me is that I doubt I’m the only person to whom this has happened.  Because I had no assigned nurse, it was no one’s job to look at my file.  If I had the early stages of dementia or didn’t want to make a fuss, zilch would have changed.   ... View more

I’m so sorry, Michelle, that you are having a hard time with the effects of radiotherapy on your skin.  Those blisters must be very painful.  I hope the gel eventually works.   Hi Euby, hope the chemo has gone ok this week.  Is your skin getting any better now?   ... View more

It’s good not to have to know. I’m having zoledronic acid at 6-month intervals to discourage osteoporosis & bone cancer (hope I don’t get that!).  Just have to accept what the medics tell me is needed.  Know exactly what you mean by those tubes.  Only 2 more rads - way to go!  Hope you have the most minimal side effects possible. ... View more

That sounds really grim for you, Linda.  I was wondering if the effects of the anaesthetic are part of your sickness, even this long after surgery.   Do hope you are able to enjoy Christmas, Michelle, after daily radiotherapy - you’re right about this bringing home the enormity of what has happened.  My moment of this came when I was having a zoledronic acid infusion post-chemo but in the chemo ward.  Hated going back there and felt so sorry for the woman next to me because I recognised the chemo she was having and knew she was almost certainly about to have a bad time.   ... View more

Hi Michelle I had my last radiotherapy towards the end of September and was quite tired for a couple of weeks afterwards but, compared with the tiredness of chemo, this was nowhere near as bad.  I think, though, that there is a lot of individual variation.  The area treated is still visibly affected and, for about three weeks my nipple was sore.  This soreness has gone now. I hope it all goes well for you when your radiotherapy starts.  ... View more

I was 8/8 oestrogen & advised to be on exemestane for at least 10 years, which encourages me to think that maybe I’m expected to survive for quite a while. ... View more

It’s already a long day, then, Gigi.  I hope the painkillers have worked on your achy legs.  Things I was told by oncology medics, like “pins and needles” and achy joints”, sound so innocuous but the reality is very hard to bear. The effort involved in simply getting about is exhausting.  I hope your day goes well.   Thick eyelashes (not yet very long) are a consolation.  They’ve never been this good.  Hair on top is still only babyfuzz but at least it’s there and growing.  Got to find something to enjoy.   I’m grateful for all the posts about neuropathy.  It sounds as though everyone who had the same chemo is still having pins and needles, so I need to be a bit more patient.  I get furious with myself when I keep dropping things.   I’ve just had an NHS survey to fill in.  It asks if the long-term effects of treatment were explained to me.  Probably they were but in the horrible fog of hospital visits and treatment regimes most of what was said to me is a blank.   Maybe I’ll get an eyelash curler. x             ... View more