Thanks, Claire - that is a really encouraging post.
Thank you, everyone, for your kind words about my friend. You encapsulated what I was feeling - that in this random world, we have to count our blessings.
I am shedding a lot of hair now - whenever I touch it, more comes away. I thought I was going to be fine with it but have actually been finding it very distressing - and I still look normal! Perhaps I should have cold-capped after all… It really helps, knowing we are all going through this together and sharing these very strong emotional reactions. Going to the hairdresser tomorrow to get wig trimmed - perhaps I’ll feel better then.
I have so much admiration for those of you with children and wish you lots of extra strength to deal with everything. I am ‘working’ but my work is part time and not stressful, so not that hard. I value the normality of everyday life. But I also quite like hibernating and don’t mind using the excuse of being low immunity to stay indoors and be cosy!
Hope today has gone as well as possible for people and good luck to all those starting tomorrow.
Stefr my very best wishes to you and I have fingers toes and everything crossed.
Robin and Ali the hair is coming out in handfuls. I am having it cut tomorrow just to take back control as it were! So little gamin cut here we come for a few days anyway until it all goes.
Gearing up for next Tuesdays 2nd chemo. Oncology appointment tomorrow, blood test Monday. And in between that some fun time with the grandchildren ( 4 and 2) if everyone is well. Haven’t seen them since Christmas as they live 2 1/4hrs away. I am used to doing child care every other week so really miss them. Fingers and toes crossed no one gets any bugs!
Hugs to all.
Mooneyxx
i am now on day 6 and my appetite is slowly starting to return, although Lou i also feel like i am in a bubble!
Ali, i totally get the hair thing! Had shower this morning and felt like more coming away than usual, did try the cold cap for my first FEC but still expect to loose my hair. Almost want to get it cut short now and be done with it, but will keep my bob for now. Have got wig appointment next week so hopefully will be prepared for when it happens!
A very good friend of mine went through this same journey last year and she is now out the otherside and looks amazing and is living life to the full. She said you have to take each step day by day and you will reach the end of this journey and look back and see that you survived. By Easter/springtime we will all be well on our way to completing this journey, so say strong and big hugs to everyone.
Hi everyone,
I hope you’re all doing well. Stefr - I hope all went well for you - I’ve been thinking about you a lot and keeping everything crossed.
It’s now a week since my 2nd chemo (EC) and I’m feeling completely fine!! I had a slight bit of nausea and more tired than last time but have taken no anti sickness pills since Tuesday. My biggest complaint is a pulled muscle from coughing so much as my cold from round 1 lingered for so long but even that has nearly gone. Oh and an afternoon nap every day - which has actually been quite nice.
My mum came to stay this wk to help out which has been great but I’m so happy to say I’m doing fine. I’ve stayed home all week though as really don’t want to pick up any germs after getting the cold from hell last time. I just wanted to let you all know as a reassurance. I know we’re all different but I hope it will put your minds at rest.
My tumour feels noticeably smaller too - it was over 10cm when I started and crudely using my daughter’s ruler, I reckon it’s about 7cm now so that is making me feel much more positive.
Re hair loss - it’s taken me since Saturday to get more comfortable looking at my bald head in the mirror and I will only let my husband see so far but with every day I get better with it and tell myself it’s only hair etc. I’m going to work next week for a day as had bought a wig but now I’m thinking a scarf might do. I don’t like looking like “a cancer patient” but I’m slowly getting more comfortable with it. I recommend getting a soft bamboo sleep hat to wear in bed - I found one for £7 online and it helps keep me warm.
Ali1961 - I found it really hard to touch my head at first with no hair, how have you found it? I was almost scared putting it under the shower for the first time!
Good luck everyone and thanks Claire for your message re life on the other side. I can’t wait to get there!!
Good afternoon ladies from a very wet, cold and wild Spain.
Isn’t it funny how our emotions are all different in the way we handle our cancer?
I’m old compared to most of you- I’m 64.
When my cancer was confirmed I immediately said I wanted MX - at my age what do I need a breast for?
I’m not planning on breast feeding any time soon.
Nor did I want a reconstruction- similar thoughts and they don’t do them along with the MX.
So I got my head around that.
The next issue was - follow on treatment
I’d had short, very wilful hair all my life- no GHDS in my youth.
When I was 59 I decided to grow it long and for the past 5 years I’ve loved it.
So I was sure I wouldn’t cope with the loss of hair that would come with chemo.
When I had 10 out of 15 nodes positive, I just accepted I’d lose my hair.
At that point I decided I wanted to be in control of something - not the cancer, so I had a pixie cut 2 weeks ago, and I love it… I’ve accepted it’s going to fall out very soon, and I can’t wait to start wearing my 2 new wigs.
The point of all this is, I think, that as each new situation arises with our cancer, we ALWAYS rise to the challenge.
We truly are stronger and braver than we thought.
There is no other way.
Love and hugs to all.
Hello everyone. Jackie you’re right - we do all rise to these many challenges and are stronger than we realise.
The hair thing shocked me. I honestly thought I wasn’t going to mind. But it was such a shock when I started holding handfuls of it. I actually cried. And I haven’t cried much on this journey. So I went straight to hairdressers this morning, explained the situation fighting back tears , and they did me a short pixie cut then and there. So, chemo buddy, we are pixie haircut buddies as well! First time in my life I’ve had short hair. And I like it. I know it will still fall out but no more distressing long handfuls in the shower.
I’m due second dose of fec on Jan 25th, bloods all being fine on 23rd.
Hope you’re all having a good day. I’m loving reading all your stories. I was telling my husband about this forum the other night and he said rather sadly that he couldn’t imagine blokes supporting each other in the same way. R x
Hi I totally get the hair thing, I also really didn’t think losing my hair would be an issue but it is and I’ve got short hair!! My hair hasn’t started to fall out yet but I don’t think it will be long before it does as my scalp has started tingling. I think once it does start to fall out I’ll just shave it all off.
My next treatment is due on the 26th if bloods are ok on the 24th.
Hi all. Lots of really good and thought provoking posts. It’s funny how we almost find it easier to let go, once the hair thing hits us.
It got me thinking about my emotions as much as my hair. Mine was long and very thick, about halfway down my upper arms. I wear (wore) it up, sometimes in a beehive, sometimes just piled on top. On day 9 I cut it into a choppy bob. Always wanted to have a go and thought why not. It looked pretty good and I was very upbeat. Then I waited and waited. On Tuesday, day 16, it started coming out by the handful. So I’ve got a grade two buzz cut. It feels really nice, and I keep on touching it, but I’m only bald on the sides! The top has coverage, though about half of the follicles have given up. I don’t think I was as traumatised as I expected. I didn’t cry. But I was snappy that evening. Luckily mostly with the cats, since Chris was out. But I’m pretty sure I will be more upset when/if my eyelashes go. Which, to be honest is going to make me look awful because my eyes swell up when I cry.
I’m not sure that I know how I really feel about any of this. I’ve majored so far in being funny with friends and family. Jokey posts on FB, telling people that I’m drinking my way through our champagne stores, because “I’m not leaving it behind” etc. I’ve been open with Chris and guardedly honest with our grown up children. No need to stress them about prognosis while I’m still going through staging. But I’m pretty numb inside. Because mine is HER+ I went straight into chemo. I think Scotty is in the same position and maybe others? That’s great in one way, not much hanging around, but it does make it feel a bit helter skelter.
I’m thinking about taking up the opportunity of having some sessions with a counsellor. Not because I’m very anxious, more because I feel strangely emotionless… I don’t want this to come back and affect my mental well being after I’ve got through treatment. On the other hand, I have a bit of fear around letting go while juggling work, family responsibilities and buying a new house etc.
Sorry about the brain dump, but I guess the mental stuff is as much a part of chemo as the physical side effects.
I’m really glad this forum exists, and very glad to have all of you around on this thread. Ok, so Robin I’m also having round two on the 25th as well. Hopefully I’ll get an idea about my nodes when I have the clinic on the 23rd.
Ali
I’m whacked at the moment- felt better so ended up doing too much- but do go to counselling.
I’ll explain in more detail tomorrow, but I’ve been in therapy for two years now and it’s the best money I’ve ever spent.
Have a good evening everyone.
If you’re feeling poorly, it will pass.
Am also HER2+ as well as ER+ 8/8 but on a different path to you in terms of sequence - >letrozole -> surgery -> chemo so far. I suppose we have to trust our team to make the right decision on each case’s individual merits.
Just thought I’d pop on to say I’ve recently completed counselling for PTSD. It was free through GP referral and was more CBT (called Talking Therapies). Feel free to message if you want more info. Think about what you want it for and that it is thr right sort for what you need. Counselling often brings you down before you start to climb back up so just be aware of that.
For those of us in FEC-T before surgery (can’t remember posh term) has anyone else noticed a change in their lump??!! Don’t know if it’s because mine was huge to begin with or it being Her2+ but it has definitely shrunk and not as rock hard. It could be my mind playing tricks on me I suppose.
Day 15 and the hair is hanging on. Feels tender so gearing up for my GI Jane moment. Coming back up from a dip I think. Son has had a crappy week. Found out he just missed out on getting into Cambridge and then broke his wrist! The upset is not about the prestige of Oxbridge but just I wanted something good to come his way and to see good things happening to good people! No one in our family has ever been anywhere close to Oxbridge so would have been great to see my little Geordie lad rocking up!!
We are all on the most challenging journey of our lives I would imagine and I know I have struggled emotionally with my diagnosis and am still struggling. I feel very lucky to have been able to use the services of Penny Brohn Cancer Care. The Penny Brohn Approach looks at the whole if you - it looks at not only your conventional treatment but at your mind body and spirit and the help and support I have received from them so far has really helped me on my cancer journey. I’m also very glad I found this forum.
I know that I have to take each stage a step at a time and that my next step is losing my hair and I will cry - Daisy, I also have my 2nd chemo on 26th and my hair is still in tact! I’m hoping I will continue to be lucky with my side effects and as my 18 yr old son says - it’s only temporary, it will grow back.
Thanks all. Lots to think about there and I’ll do some mulling.
Sorry about Cambridge, Scotty. And I understand the disappointment. Hope he gets some great offers from others though. I might PM you tomorrow.
Lindie, so sorry you’re down about it. I felt much better once I got my hair cut short, but it had started to fall. Thers a fine line between jumping too soon,it’s quite hard. Hope you feel ok about it soon.
Ah, Slowski, I’d forgotten you’re HER+ as well. It was chemo straight away for me though, because I’m ER- as well. (Unfortunately, as my surgeon so tactfully put it).
i just wanted to say to Lindieloo, I went to visit the “wig lady” last week and she was telling me that I will know when the moment is right to cut or shave my hair. She said that she has seen many ladies over the years who were persuaded to go to her by well meaning family members or just thought they should be sensible and get it done. She said she refuses to do it if they are too upset or unsure. Inevitably they do come back within a few days but then they are ready and it is a different experience.
I have been reading all your posts avidly. I am seeing the surgeon again tomorrow to see if I am ready to start chemo on Monday, it has been a long time coming.
In my experience of the surgery, i found that you have to be careful not to do too much too soon like lifting, pulling etc. it caught me out a few times when I was too impatient to wait for OH to move something for me.
Lou: I’m totally with you - the two physical features that I liked (sounds lame to say it like that but I hope you know what I mean) were my hair and boobs. My best friend always said I was good at hugs with this maternal thing of the boobs and long thick hair. They made me feel feminine too and no I have no hair and will lose at least one boob.
I’ve not had my surgery yet. I’m her2-, ER4, PR- but have a large aggressive tumour and lymph node involvement so couldn’t risk waiting until after surgery for chemo (oncologist’s words). I’ve also been told that I am looking at a radical mastectomy so we don’t delay radiotherapy and don’t risk leaving the skin as it has also been inflamed.
I know I just want to live, to be here for my daughter and husband, but i can’t help feeling sad about it.
Scotty - for round 1 my lump shrunk in wk 2 but started growing again in wk 3 which my oncologist said can happen. Overall size had decreased by about 1cm (10%). It has def shrunk again in round 2 but I’m not going to get too excited in case it starts growing again. We’re increasing my EC dose for round 3. It feels less hard and angry - more spongy. How about you?
Morning everyone.
Really inspiring reading all your posts and seeing how we are all managing to cope with bxxxxy disease. All the different challenges we all face and we seem to find the strength to cope - not all the time, sometimes we need a duvet day and a cry, but we pick ourselves up and get on with it.
After a few tears and the hair coming out in handfuls my lovely hairdresser and I talked, and I too Ali have had a number 3. I couldn’t cope with it coming out in handfuls and felt ready to do it yesterday. I wore my wig out last night to the pub and felt OK. it’s my different wig, auburn rather than blonde and changes me which is quite nice occasionally. Keep soldiering on everyone, thinking of you all, and how amazing you all are.
Mooneyxxxxxxxx
PS
Just seen my little pile of my hair beautify ers mousse hairdryer hairspray!!! All to go away I think, to be brought out again when I see what the new hair growth later in the year brings me! Curly or straight!!!
It’s one week since my first chemo and it wasn’t as bad as I thought it would be.
I have, it needs to be said, spent much of that time either asleep or prone, and for some reason I feel guilty about that.
However I’m retired and so I can afford to do that.
Anyway, I have a question.
Despite my temperature being normal, the last two nights I’ve woken at around 3am completely soaked by sweat- even my pillow and duvet were damp.
I’m not taking any cancer medications like steroids.
Has anyone else had this?
Love and hugs to all.
xxx