Thank you MBJ !!
You seem a great bunch - though took a while to catch up on all the posts and everyone seems to know each other so well already.
Yes it certainly is the group I never wanted to join ! Xx
Yes I can see your post. Welcome to the Feb girls group. You will find loads of support advice and sometimes tears laughter and anger here. You are right the only way to post is to reply to someone but we can all see it. It is s bit strange. Also the newest posts come first so if you want continuity of conversations you need to scroll down the pages. Good luck posting .it can be a bit temperamental at times and posts disappear. But welcome to the group none of us really wants to need.
Hi - not sure if I’m replying to just you Mai7 or the whole page.
Hoping to join the February 2019 chemo starters group if it’s not too late ??
I started chemo on February 7th and only recently found this group.
I’m on weekly Taxol for 12 weeks and herceptin every 3rd.
Hope it’s not too late to join in - but I’m on an iPhone and not sure what or where I’m posting or who can read this ! Xx
I’m hoping that with some good rehab post lumpectomy I can get back into archery. Wanted to do it for years. We joined a club for short while back in England and made the investment in some kit.
Im very conscious of my surgeon telling me that post op I have to do a minimum I’d 30 minutes excercise a day. Had my first chemo on 21st and It’s only in the last two days that my energy levels have been consistently up.
Today, decided to brave going back to one of the village craft groups that I joined. Hadn’t been since the beginning of January .They were so worried about me that two of the women came around last week to see if the group had done anything to upset me.Bless them. Can’t speak for the whole of France but in my village and surrounding ones , relationships are super important. I was touched at their concern.
Following the advice of the oncologist that I saw before chemo I opened up and told them about all this ‘stuff’. They were so supportive. Claude , one of the women who runs the group asked me if I wanted her to tell anyone in the group. We agreed that she’d just tell Joseline runs the group with her.I was confident that Claude would be true to her word but the other woman I wasn’t so sure of.
I decided to wear a head wrap today. Bizarrely a couple of days after chemo my dreadlocks were in great condition,couldn’t understand it. Now they’re flat ,lifeless and very dry so I’m guessing the inevitable will happen. My oncology nurse said if it’s going to happen hair fall will happen between days 14-18 post chemo. When he first saw me in it , I could see that it was a bit of a struggle for my other half.
My instincts were right about the other woman who came with Claude. When I went back to the group today,from the kisses and hugs I was getting it was clear that all of them knew. Which means, as everyone knows everyone round here, that people in my little village will know too. The wife of my immediate neighbour is a very prickly but gossipy women. You never know what mood she’s going to be in and I can guarantee that next time she sees me there’ll be lots of fake friendliness just so she can find out my business.
I keep telling myself not to be upset , I haven’t got the plague. I guess at the core of it what I don’t want to see in the faces of who know is pity. Its draining and doesn’t help me. I’m trying my best to deal in the positive .
I want to be looked at as me not a diagnosis. Ive always fought for other people to have right. In all of that time while I’ve been looking out for others ,I’d lost sight of just how strongly I feel about that right for me.
Implausible, you give me hope. I was a right little gym bunny before all this. I can just about get to the loo and back today. I really hope I’ll get back there and regain the same fitness levels as I used to have. X
I've been thinking about Sissy too. I'm hoping she is just enjoying some time away from the forum, lapping up the sunshine (at least until today) and not thinking about cancer/chemo/all that jazz for a while.
As for me I've had another good day. Found out that a short comic I'm half way through drawing is going to be included in an actual book published by an actual publisher, which is exciting! Although it does mean I need to hurry up and finish it 🙂 so I did some work on that today.
And I also managed to hit my fitbit steps goal for the first time since chemo started. Shattered now, mind, and tucked up in bed already at 8.30pm 🙂
pop in...yes, how is Sissy60 ? This Monday I just had my portacache inserted. Before the operation, I remembered Sissy60 post, I warned them in advance. Being a normal than normal girl, I would cry when was in unexpected situation or unknown situation that made me scare. Just like my teenage daughter and some of her classmates cried just before having vaccine. Besides I am a needle phobia. Finally I screamed so loud even the people at end of corridor could hear me when the nurse tried to do the IV on me . Probably due to my high pitch (the girl part of Phantom of Opera), oh mann, the boy nurse missed it and re-done two times. Ouh Ouh .......cry and sream is girl's right. he nodded his head. My day....
For all those in need of a treat.
I love this tea company and my Christmas online order normally lasts me till June. I think the way I am going I will have to stock up again by the end of March.
Favourite flavours : Winter tea ( cinnamon based) , Liquorice and Peppermint ( the liquorice content is 70% and the peppermint 30%. Tesco’s copy is liquorice 30% and peppermint 70% cheaper but horrible- I was duped), Rooibos Caramel and Jelly and Ice Cream ( fruity). As I am not drinking any alcohol this tea is a must.
Differences in gremlin as you put it! My nipple is just mangled it looks like a Rolo 😝 hoping the chemo clears my lymph nodes and it all settles down 🤞
That post just have been early on as I’m chemo first! I’m triple negative so straight in with the drugs. And I’m the usual 6 FEC-T.
So we are the same but different - I think everyone is like that. We are all experiencing the same differently and all in it together 🤗
I’m on day 11 not seen any differences yet though.
Funnily enough we were talking about chemo and cold capping last night and my husband suddenly realised that if ever he was in a similar situation (God forbid that it would ever happen), he could lose his beloved moustache, which I have hated in the 43 years I have known him. I think the penny has finally dropped.
Just noticed Sissy60 hasn't posted anything for a while. Hope she's ok. Just wondering how she's been coping with BUPA and and the problem with putting in a line etc.
MJB, I sincerely hope you intend to contact PALS, or their equivalent in Wales, to get advice about making a complaint. You could even write to your local MP. When I was working for the Dept for Work and Pensions and all the other names it has had over the years, we occasionally had letters from MPs to explain ourselves when things had gone wrong and a constituent complained. The hospital wouldn't be able to dodge that one. Anyway hope you get better soon❤.
I'm due my second chemo sesssion tomorrow and am feeling pretty relaxed about it, bet I'll feel differently in the morning when I start to remember the fatigue😴😴🛌🏾 and other side effects. Oh well, onwards and upwards.
Susie B , snap!
When I found the first clump of fallen out hair on my pillow the other day I was a bit upset, but when I told him hoping for sympathy, all I got was a point to his head, a shrug and a "welcome to my world!"
Maybe I don't want to be in his world 🙂 I can't grow a cool beard to balance it out like he can!
surreal it most certainly is.
I walked into school today ( it’s about a 45 minute walk- so I thought that ticks off the exercise box - to have lunch with some of my colleagues and to see my class) in the town centre an old lady infront of suddenly went down like a felled tree and smacked her face in. I was on my mobile calling 999, 2 other members of the public were down beside her talking to her. She had a nose bleed. It all ended well and we got her up and sitting on a chair. Another lady got the wet wipes out and cleaned her up. She decided that she didn’t need the ambulance ( she spoke to them directly via my phone). I ended up walking with her to her bus stop and telling the bus driver .
She asked me what I did and I said SEN teacher currently on sick leave.
She used to be a physiotherapist before she retired. She felt very stupid for falling like that.
I told her to stop ‘beating herself up’.
It was a relief to get to school and have lunch. I had forgotten how noisy school is. It was good to see my class ( they are all boys) and they were pleased to see me.
I am back at home now, flopped on my bed.
Enough for today,
You've just wonderfully described my husband's reaction to losing his hair since he was in his early twenties.I love the expression of rocking the boiled egg look😆. Mind you he was trying to be funny a few weeks and it back fired horribly. I was bemoaning the fact that even with cold-capping I could still lose my hair. He just pointed to his almost bald head and said 'And? What's the problem?' My reaction was rather hostile, to say the least, but this was during that awful time when it's all tests and results, with nothing being done to actually sort the problem. I can laugh about it now😀.
Firstly a belated reply and a thank you, for the post you sent when I put a plea out for anybody who was having chemo, followed by surgery. At the time I seemed to be the only one in the February group having chemo first😢. I think there's three of us now☺. Deano is the other one. As for me I had my first chemo session on 8th Feb (FEC) and due my second, with cold cap, tomorrow 1st March. I'm on the ROSCO trial which means I've been randomised to have just 4 rounds of FEC, rather than 6 rounds of FEC +T. The thinking is that some elements within HER2 respond better with FEC and others with CT. Watch this space. If you saw my earlier post you'll see that after my first chemo session Gremlim has been wounded🎯. Hopefully you may notice things happening to your own gremlin☺. Keep in touch xx
Great news Daisydi,
MBJ I hope things improve quickly.
Stargazer ive has my second chemo session yesterday with the cold cap, and seem to be loosing lots of hair, but one of the nurses said it would be lots more with the cap.
Just had a phone call to tell me my nuclear med bone scan didnt show anything to worry about. Phew another big tick!
Hi Nettienoo, the anti sickness drugs are key to all of this. I have had so many and felt ok so far that and drinking water. Make sure you get some more. Chemo should be tolerable and your team should be making it so for you. Ask for Emend anti sickness, expensive but very good. Good luck xx
Implausible, no you weren’t hallucinating. Where the bloody hell did it go? Can’t repeat it all yet. Will do another ASAP when feel a bit less dire. Thanks for giving the girls a temporary update. Xxxx
Yes! Just call me sinade!! Lol.....it actually looks ok....but it will be another story fist thing in the morning....oh by eck...xxxx
Hi implausible, no I didn't see nettienoo post....I too suffered horribly day after infusion, ended up in hospital, really need to get meds sorted for next week, can't bear the thought of going through that again! I do hope she manages to get it sorted...xxx
Marlyn, or should I say Sinead? you really have a way with words. That made me laugh!
Well done you on the shave. If I end up too patchy I shall ask my other half to do the same to me. He will probably quite enjoy that, he started losing his hair in his twenties and has reluctantly rocked the boiled egg look ever since.
Nice flowers Edinbird!
There was a long update post from Nettienoo there after the flowers post before, but now it has disappeared! Did anyone else see it or was I hallucinating? 🙂
Anyway, she said that she survived first infusion yesterday but is now really struggling to keep the nausea at bay, and is waiting for a call back from the GP to see if he can prescribe better anti nausea meds
Hello to all you beautiful women, mbj, what an experience! One never to be repeated, I really felt for you ref the bed pan...xxx
Today I feel mentally strong ( bodily knackered though) and so my lovely husband shaved my hair, it's a number 2 and I now look like I " ride the other bus" The whole thing was quite liberating really, it was probably nerves but I giggled singing " nothing compares to you" ..it may hit me later but for now I feel ok....
Now...remember I love the bones of every lady on here....what a surreal world we are living in...xxxxx
Hi my lovely ladies. Survived the first FEC yesterday afternoon. Had a few tears when I first got there but didn’t last long. . Didn’t feel too bad at first but then went rather downhill. The combo antisickness of Emend and Ondesatron I had there wore off about 10pm so took the Motillium (domperidone) which took the edge of for a couple of hours. Ended up ringing emergency line early hours recorded message so had to ring another line
to find out when I could next have some and was told another 4 hours so had some at 6. Not working very well. Not been sick just sat gulping air constantly. The chemo unit said to ring the main hosp which is about 40 mins away and they’d probably want to see me, better to ring my own gp. Rang my doc and there is a doc ringing at 2pm so hopefully get something better. Unit suggest asking for combo. Head thumping, feel veryweak but temp ok. Just had a quick shower and crawled back to bed. Steroids have stayed in. So hopefully may help. Start the wbc injections tomorrow. All good fun eh girls.
MBJ I’m so glad you are feeling a little bit better today. I’ve been so worried about you. Give them what for! How dare they treat one of my gorgeous ladies so badly.
Trixielady thank you for thinking of me. I’ll get through this as we all will. Hopefully my next post will be less “moany”.
Love and hugs to you all.
My pooping went from one diarrhoea to nothing to normal and now I’m kinda somewhere in the middle... what lovely things we have to talk about!
The popping problem has now resolved with me I got advice from cancer nurse and I take sodium docusate a mild 2 a day and this keeps thing moving you can play around with them to suit you. Having my injections and starting to feel slightly more human again and less tired. I have headache every morning but it soon goes with tablets - think cold cap squeezed my head too tight lol
rest easy everyone and MJB - you tell em can’t believe your experience
I love you all and thanks for sharing it makes me get through the days xxx
Oh and as for the pooping . Or lack of 😄 I took 2 sennakot on the night of the 3rd day after chemo, just before bed, when I realised I hadn't gone since before. That was enough to get things moving again by the next morning and I've been back to normal schedule since 🙂
I know that poopy problems are a common side effect though. One way or the other! No happy medium.....
Oh MBJ that post about how you were treated at first makes horrid reading 😞 I'm so glad they are bucking up their ideas now but as you say that doesn't undo the rest! Hope you get home soon x
Stargazer, I'm already dreading my second infusion and it's still nearly 2 weeks away! I think that's natural, you're feeling well so the last thing you want to do is the thing that's going to make you feel like cack again 😞 but we've got to get through it. Ugh. Best of luck!
Daisydi you are doing so well, I hope you keep feeling good. If it does finally hit you, just know that there is an end to it. I was fine days 1 to 3 but then had a 4 day slump which was pretty nasty. But then that lifted as quickly as it arrived and now I feel absolutely fine again. Touch wood!
Everyone else. Hope you are bearing up!!!
I'm worried about the few peeps who used to chat on here but have disappeared. Hope they are ok.
I know it's difficult, but just hang on in there. I know you can do it☺. Compared to me you've already come through so much having had surgery prior to chemo. Take care xxxx
Morning everyone. Good luck for all today and rest of week. Dont give up on the cold cap. It doesnt save 100% of your hair but it should make a huge difference. Hope you are ok MBJ. Im now on day 4 feeling well as I have been all along. Just the poo problem but Im not stressing about that.
Love to all of you xxx
Oh yes I shall be complaining. Now I am in a cubicle it's like I actually exist. Pathetic really too little too late. Masks aprons want to make my bed, am I having a shower. Well yes but when I want to nobody cared yesterday. Maybe they know I have been complaining while here on the ward. My BC nurse is coming to see me today. And now I feel more alert I can be more self advocating.
’Just do it’
This clip takes you to an interview with an inspirational woman.
Best wishes for today.
Stargazer1, i think I'm getting 1 good week out of the 3 , taking it easy for the next 2 , WBC injections started yesterday was bad with number 6 but oncologist said i can take oxoycodone this time xx Think my hair hit me tge worst. Hopefully this cycle will be good for you hun, lovely that you've been able to spend time with your kids xx big hugs for today xx
Good luck. I hope your care is better than mine. Although my actual BC care has been fine. It's just the acute experience.
im getting ready to go to session 2 but sat crying 😢 funny enough it’s pouring with rain too. I don’t know why, I’ve had such a good 2 weeks and spent half term with my girls, I guess I just don’t want to be ill again. I’ve argued with my hubby over nothing really, I guess we are all just stressed.
Anyway enough about me, how are you?
MBJ I hope you are feeling a bit better this morning. I’m just down the road from you in The Royal Gwent in Newport.
Morning Susie B
thankyou for your reassurance about the cold cap.
i really don’t want to go this morning, my courage is deserting me 🙁
Morning and good luck to each and everyone on theses forums, its proving to be a very difficult journey for so many,, finger's crossed as you get to week 3 of your cycle hopefully its a good one xx I'm starting again on . Cycle 2, week 1 xxx
Morning MBJ, how are you feeling? I hope you slept well and get a good breakfast? can't believe what you have had to put up with, whereabouts are you? Hope you're going to complain when you're well enough, can you contact CQC ? Good luck can't what to hear how you're doing hunny xx big hugs
what to say ????
Focus on getting yourself out of there.
Are you able to sleep?
Can anyone bring you fresh juice to drink and nutritious soup?
Thinking of you as I look at Mother Mary here.