Hey girls, sorry not been on to update you, had a rough couple of days. My hair started falling out on Friday, so my bf shaved it off last night. My wig is lovely and I know I’ve done it all before but found it a wee bit harder this time. Anyway it’s done now and came in to work and everyone loves my new do.
Thurs was ok. The surgeon has ruled out implants as they don’t do them big enough ?. I didn’t want implants anyway. He’s explained how they would use fat and muscle from my stomach and how it would be best to get them both done at same time as if they just do 1, they would have to discard the extra stuff removed from my stomach, and then they would have to take it from somewhere else which I don’t want. Then he threw a spanner in the works and said I could just have a lumpectomy this year and have a mastectomy in the future. But my cancer grew within the 3 months I was visiting the oncologist as part of a trial, and I’m not doing that now, so I would be scared another cancer grew again. So I’m almost certain I’m going for the double in July. I have an appt with plastic surgeon on 5 March so need to decide then so she can put me on waiting list and she will go over the “free flaps” recon that I will be getting. The good thing is they are letting me delay the op as I should be getting it in June, but my son has exams and my daughter will have so much going on with last few weeks of primary school. Also looks like I’ll get to Fuerteventura, but op could potentially be day after I get home.
Anyhoo I’m feeling much better physically, until Fri at least when I have round 2. Haven’t had any word of getting PICC line in so like they’ll have a battle for veins again.
Unicorngirl you are so organised pre chemo, I’m not as good as that. The kids have been off but we didn’t get up to much as I’m skint. Had to fork out loadsa cash to school for Jens school camp and school photos and leavers hoodies. It’s never ending. Taught her how to make pancakes so we’ve had loads last week. She was making them for breakfast.
Dellwelly, those sunrises/sunsets sound amazing. I get a good sunset over the Forth towards Fife, but once it goes low I can’t see it for houses.
Hope you are both doing ok, hope chemo no 4 isn’t too hard on you ? girl.
Speak soon, big hugs. Susan xx
Hi girls ?
Oh, so sorry about your hair Susan ? As much as you prepare yourself it’s still upsetting. Even more so when you’ve done it before.
Ah, how lovely your daughter making pancakes ?? yummy!! Don’t be too impressed, it was my good week last week &!I feel so guilty that I’m putting my family through this again. I know it’s not a choice. I can’t help but worry about if was to come back & if I wasn’t here for her. I’d hate her memories to be of me being ill all the time (with dodgy chemo hair & not many eyelashes ??). My son is 23 so we’ve done all the fun stuff. He doesn’t really do emotions either! I just feel that while I feel well I need to do some special things with her. Side effects really lingering for me this week & I feel awful. She had tears at school yesterday as I wasn’t well enough to take her to school. She really panics if I’m not 100%. They took bloods when I had my picc flush earlier.
I didn’t realise there was just so much involved in reconstruction ?
As Delly says, no harm ringing LGFB. Mine was meant to be a few weeks ago but they cancelled it last minute. They said they’d call when they have a date for the next one. I was also meant to do the moving forward course last year after the first time, that was cancelled too due to lack of interest!!
Good luck for Friday, annoying you couldn’t get your picc in time for your pre chemo bloods.
Hope you are ok Delly?
Lots of love xxx
Hey Unicorngirlmummy, stop feeling guilty, this isn’t your fault, we are just more than unlucky. How old is your daughter again? I know it’s hard but we are going through this to stay around for our kids. I’m going a bit mad and have organised a wee party in the house for my daughters 12 birthday and 5 of her friends this Friday, when I know I’ll be feeling crap, but we just get on with it for our kids don’t we.
Was there for 8 hours again on Friday, they hadn’t ordered my chemo until the could check a spot on my face I mentioned when they phoned me the day before to check how I was. I told them it was just a yellow pimple but what a drama it caused. I got there at 10.15 and didnt actually start the doxetaxal until after 2. Luckily my brother was on hand to pick me up and feed me a McDonalds. Also have an appt for Tuesday morning to be assessed for PICC line so hopefully get that in place soon.
My proudest moment was today when my district nurse didn’t turn up so I had to do my filgrastin jag myself. Was such a big thing for me as I hate needles and yes I cried after it. Think it was tears of relief tho. Just don’t know if I can do it every day but we’ll see.
Hope your ok, you’ll be feeling pretty rotten now won’t you. I’ve been ok but it’s about day 5 or 6 it kicks in. And how are you Delly? Hope your doing ok too.
Much hugs. Susan xx
Hi Susan,
Oh what a long day ? Is that number 2?
My daughter has just turned 10. That’s what we did for her birthday a few weeks ago funnily enough, 5 friends, bowling, McDonald’s & a sleepover! Hope it goes well!!
Well done doing the injection ?
I feel not too bad the last few days. It always starts almost straight away for me. This was number 4 & by far the worst one, the side effects really lingered this time. My legs & arms are still very achey but I do feel more human now!
Good luck with your picc tomorrow, rotten timing just after chemo bless you. It’s not too bad, remember to ask for a prescription for the plastic sleeve.
Hope the side effects are kind to you & good luck for Friday too, what a week for you! ??
Hope you’re doing ok Delly?
Lots of love xxx
Hi girls hope you are doing ok, things not great here, chemo is flooring me. I made the decision to go for the double mastectomy and was allowed to wait until after my holiday in July, but my bf has decided that he no longer wants to be with me, that we have lost our ‘spark’ and has gone off with someone else.
So now don’t know if I can got through with the mastectomy, if I do if I can bring it forward as the kids will be away with their dad so will be easier being in hospital if they are not here, or just having a lumpectomy and thinking about the mastectomy later.
Not in a good place right now. On the positive front the tumour has shrunk from 21mm to 13mm after 3 chemos, I’m a week after chemo no 4 and feeling awful, but oncologist talking about lowering my next 2 doses which should help.
Morning ladies,
Oh Susan, so sorry to read you’re in such a bad place ? Good news that the chemo is working though. As Delly says, if your gut reaction was to have gone with the mastectomies & that it can be done whilst your kids are with their dad, that was always a big concern for you. You have to do what’s best for you so that you can move forward. Such rubbish timing ?
How are you Delly?
I finished chemo 8 weeks ago, they decided after 4 that as the lung nodule hadn’t changed I’d stop at 4. After the Easter weekend I noticed a small purple protruding lump about 2 inches below my scar. I’ve got an appointment in breast clinic on Tuesday. I feel sick with worry. It came back quickly last time, it’s metaplastic TN & whatever I read isn’t positive. All of my eyelashes have gone in my bottom eyelids. I’ve been back at work 4 weeks & exhausted. It now feels like it’s all been for nothing. Sorry to be so miserable!
Susan, I hope you start to feel better soon from your chemo. I know that cancer is tough in relationships, to have gone off with someone else though, shame on her too! ? Big hugs xx
Thinking of you today Unicornlass, hopefully you get some positive news. You must be so worried.
I’m going to speak to my BCN to see what my options are regarding the mastectomy. Both my surgeon and oncologist have suggested in the past that I could just have the lumpectomy after chemo and then think about the mastectomy next year and part of me wants to do that, as the thought of going through it just now seems scary, but at the same time I think I should just go for it now and get it over and done with and move on. It’s a daunting thought trying to meet someone new, I think that’s at the back of my mind too.
Most importantly tho I need to think of the kids, and the risk of it coming back if I don’t go for it. At the end of the day they need me more than ever now.
I managed back to work 2 days last week and then luckily had a few days hols to take. I’m on sick pay now, things just keep getting worse. Have applied for PIP just waiting to see if I get it.
Hugs to you girls xx
H ladies
I’m 43 with 2 small children (7&4) and had TN in 2016 HAD chemo WLE (R) and rads and feeling fab! Yesterday following mammo US and biopsy confirmed new tumour in left breast which is now ER+! 5cm tumour and just waiting to see if it’s contained or spread! Devastated to say the least but don’t know anything about ER+ welcome any advice
TIA
So sorry you have found yourself back here Warcol .Generally ER plus tumours are less aggressive than TN and you have the added " bonus " of being able to take Tamoxifen to help prevent re-occurrence .It also means that your tumour growth is fueled by oestrogen and so other things may be offered to reduce the levels of oestrogen being produced in your body e.g. Zoladex injections that shut down your ovaries while you are in the medication .? for good news from your scans .Jill x
Hi Warcol, So sorry to see you back here on the wrong side of the fence , what rotten luck.
ER + is mostly less aggressive than TN and doesn’t always involve quite so aggressive treatment plus as Jill says you have the extra protection of taking Tamoxifen for 10 years after to help prevent reacurrance.
I can imagine how devastated you must be feeling, once is more than enough for anyone to deal with but as you know only too well that you have to face it and deal with what needs to be done , that doesn’t mean you can’t feel bloody well furious at having to do it again though!
Xx Jo
Hey girls, sorry not been on a while, I’ve been in a pretty dark place recently, 5th Chemo was a bitch, but I’ve lost 2stone so they going to lower last dose next fri for final chemo. My right breast (where the original TN cancer was) has been tender so getting scans on Fri, hoping it’s nothing. I’m def having the double mastectomy and recon, just waiting on a date. I have spoke to a few male friends who assure me a decent man won’t be put off, so feeling a bit more positive. Unfortunately I’m going through the ‘missing him’ stage which I hate myself for, cos he is a d**k for cheating and giving up on me.
Anyway my problems are small. Unicorngirlmummy I’m so sorry. What are they saying? What treatment are they planning. Wishing I could give you a big hug. Cancer really really is a biatch. It is so unfair.
Hi Warcol, I’m also 43, with a 12 and 16 year old. Sorry your having to go through this again. I don’t know much about your cancer, I didn’t ask too much 2nd time, it’s not TN this time and is Herceptin positive so I’ll be getting Herceptin jags until Jan. my last chemo is next fri. All I can say is I’m trying to stay as positive as possible for the kids, we only had a 6 month break from end of last treatment but they were used to seeing me tired so nothing new for them this time. I won’t be getting tamoxifen tho. Youll get a few tests before they decide on treatment, those for me were the scariest bit luckily it hadn’t spread. We’ll be here for you if need to let off steam.
My fingers are really bad now, can’t do buttons or chop onions. Also been having terrible nightmares so been put on sleeping tablets. They don’t work. I know a lot of this is to do with the break up but I’m turning into a nervous wreck. I’ll even admit I had a tiny thought that it would be easier if I wasn’t here. But that didn’t last long. I’ve come too far and would never ever do that to my kids. It’s a horrible place to be. It was after I filled my PIP form in, have been persuaded to apply for it after going on sick pay and it’s a horrible form to fill in. Makes you face up to your illness.
Enough from me, hope all you other ladies are doing fine. Delly how are you doing? Big hugs to everyone xxx
Sending you understanding hugs SnoozySuz re PIP form - soul destroying experience listing what you can’t do and focussing on the negatives!!
Thanks Jill, It really is, dreading the interview stage if I get that far. I had a lovely woman from Macmillan fill the form in for me. She said be honest and imagine yourself at your worst. It was 5 days after chemo, I couldn’t get any worse lol. What we have to go through for a little help!
The interview is as soul destroying as the form I’m afraid - and yes you really need to tell them you on at your worst . I looked at this site for some tips - it helped a bit .
turn2us.org.uk/Benefit-guides/Claiming-Personal-Independence-Payment-(PIP)/Get-ready-for-PIP-medical-assessment#guide-content
Thanks for all the comments ladies! I’m still nervously waiting for the MRI - I chased hospital yesterday and I’m hoping I hear today or tomorrow! I’ve booked an appt for my coil removal so go that to look forward to tomorrow! I’ve also started the pip process as I didn’t claim last time when I should have!
Love and luck to everyone xxx
Warcol - Hope your coil removal wasn’t too uncomfortable. I wasn’t supposed to get an MRI scan but my liver scan was inconclusive so I got one on the end. Was a bit of a relief actually as I was so scared it had spread but I was lucky. I started chemo just over 3 weeks from my 2nd diagnosis, I can’t fault my cancer team really. My only complaint is I asked for my right boob to be checked again and it kept getting missed, my boobs are out of sync with scans but going on Fri finally. I’m just paranoid that after the 2nd diagnosis something might be lurking.
I also never applied for PIP last time but thought I deserve it this time. Got a txt back today that they have my form, now the decision as to the dreaded interview. You would think cancer would be automatic.
Hope your hear about your MRI soon xx
Well had my scan, still not the right boob!! Have requested again just for peace of mind. On the plus side the tumour in left boob is now 5mm down from 13mm on 6 April. I just don’t understand, they say they don’t want to scan right breast too often yet left breast been scanned 5 times this year alone.
Anyway hope everyone is doing ok. Delly you’ve been very quiet, hope you’re doing ok xxx
Hey Susan, how are you getting on?
Warcol, how are things with you? Big hugs xx
Hi girls, good to hear from you Delly, hope you’re doing ok, Warcol how are you doing? And Unicorngirllass what’s the news with you? Are you getting more treatment?
I had my final chemo yesterday, it was supposed to be last Fri but for the 1st time it was postponed as my red blood count was low, which explains why I’ve been feeling so tired. The downside is it’s bumped my Herceptin schedule which is every 3 saturdays until Jan, so I’ll miss my chemo buddies that I’ve made.
Saw my surgeon and plastic surgeon on Mon. He is trying to book a theatre for a 10-14 hour op in the next 4 weeks for the double mastectomy. But it might not be in the hospital I’ve had all my treatment which I’m upset about, it’s further out and I’m worried I won’t get visitors. If he can’t he just wants to do the one boob and the other in a few months which I don’t want. I need to get back to work I’m skint, I want it all over and done with. So he’s given me another option, instead of the flaps op from my back, he’ll put expanders in which get inflated every month until I’m happy with them. There is a 1 in 3 chance of failure tho due to radiotherapy last year. I’m also now getting to keep my nipples but there will be no sensation which is fine, but at least they will be there.
So still more decisions to make. Honestly chemo is the easy part. At least with the expanders I’ll have less recover and no scars on my back, and if they do fail we can then do the flaps surgery as a back up.
Hope you girls are all doing ok, looking forward to hearing your news. Big hugs to you all xx
Evening ladies, how is everyone? Have you had your surgery yet Susan? I hope you’re feeling stronger?
I’ve been back at work 4 weeks. Found another lump after 2 weeks, they think it’s an internal stitch or scar tissue, the ultrasound doesn’t show anything so they’ll just monitor it. It’s nice to be back at work as it makes me feel like me. Typically my next CT & oncology appointment fall on days I have courses on, sometimes feels like as hard as I try to move forward, the obstacles keep coming my way!!
Hope you’re all ok xx