Hi all - New perspective on it all. I’m Paul.
We live in Brackley Northants
My good lady Lucie has joined your club.
We found a lump about 8 weeks ago, had two WLE’s and then a Mastectomy, now heading for Chemo - appointment with the ONC on thursday, 6 lots of FEC every 3 weeks.
Obviosly read the “First Chemo” thread, and most of the others.
Lou is really positive about it all, we have just got over four years of M.E, we did a thing called the lightning process which taught you to turn all of the negatives into a positive, a form of NLP, should help with the downside of chemo I hope.
Very emotional rollercoaster, but will get off at the end.
4 kids and a rambling internet thing going on tonight, would like to contact any partners nearby and anyone being treated in Banbury.
Drinking too much and smoking too much and very worried about my lovely lady
P
Hi Paul
nice to see a man on here for a change - although sorry you’ve had to join us.
I’m 6 weeks into 6xFEC and the time really is zipping by. Chemo is the pits but it is doable and the time does go by quite quickly. Looking forward to Christmas, though. I’m in Hampshire so not close to you, unfortunately.
If you follow our threads - a couple going with those of us going through FEC at the moment, you’ll see we are all fairly positive and upbeat in our side-effect free weeks and then go into moan and groan mode in the week following chemo - posting on here helps to get things in perspective and there are some good tips on how to deal with it all.
One recommendation from me - if you wife wants to keep her hair, definitely try the cold cap, particularly if they have a Paxman cold cap system. It’s worked for me so far!
Good luck with it all
Helen.
Hi Paul
just wanted to say hello and wish you and Lucie well. This is not a club you would look to join, but there is priceless support to be had here.
As Helen says, a few of us are into FEC and talking thro’ our treatments, side effects, feelings about all this, families etc. The whole thing does pass and it is doable.
I’m in the north east and am married to a guy who is a great support to me but a complete technophobe (he plays the drums lol)so won’t be much help!
Mainly wanted to say that this is such a tough weird time that you shouldn’t be beating yourself up for drinking and smoking! You and L supporting each other and getting yourselves and your family thro this is the priority
take care, and be kind to yourselves
monica
Thanks guys, we see the onc on thursday, then I spose its into chemo next week. Were lucky the kids are at school, but I do have to work long hours, but we have lots of friends to help out.
Am I right in thinking its about a week of feeling horrid, a week of not so bad and then back to normal before they hit you again?
Hi Joe
Poor lucie all that surgery in such a short time. Sounds like she is bearing up - your lightening process will really help you both through the treatment and all its wondrous effects on your lives and well being. Recognising and then turning negative thoughts around is a marvellous thing to be able to do. I hope you get some support from other men on here, try posting under a new title - ‘Men needed’ or something. The BCC helpline is there for us all to talk any worries through.
I hope we hear from you and Lucie again soon to let us know how you are both doing - there is support in abundance on this site, and understanding of what Lucie is going through. Hugs Lynb x
Hi Paul,
Only just saw your message now. Sorry you and your wife had to join us here, but it is a great place to learn and really helps you to feel you are not alone.
Partners seem to be few and far between here, but the ladies are still very welcoming and helpful even though we are affected in a different way.
We got our diagnosis in June, and my wife had a mastectomy on July 14th. She will receive the fourth dose of 3 weekly EC next Tuesday (all being well). She has handled the chemo really well so far; some ill effects but nothing really bad. All her hair is gone, but she doesn’t seem to mind (as long as it comes back).
It has been a real shock when something like this happens that you thought only happened to other people, so it has been an incredibly steep learning curve, helped by everything that is now available on the internet, including this site. My wife doesn’t want to look too closely, and doesn’t come to this site much, but I think she is glad that I am doing the research, etc.
I have been blogging since the beginning - just a diary for myself really, but maybe some things in there could be helpful. (See my profile if you want to look.)
I do hope your wife is OK with the chemo. Please ask if you have any questions. The people here have a vast wealth of knowledge.
Hi
I live in Brackley too. I had all my treatment (surgery and radiotherapy) at the Churchill in Oxford and see the oncologist there. I didn’t need chemo so I guess the chemo sessions will be offered at the Horton for ease rather than having to go into Oxford.
I am lucky that my two children are older and can fend for themselves to an extent but I really feel for you having four children to cope with on top of everything else. Do you have family in the area to help you?
Hey Paul/lucie sorry youve had to join the club.
In terms of kids-i have a 1 and 2 yr old and i coped reasoably well until cycle 5 where i have fallen apart and needed a lot of help.
Its true about 1 week bad but after 4 days or so i normally feel fine and function normally but like i said it fell apart after 5 cycles so i guess is accumulative.
In terms of husbands- mine is drinking loads and is certainly more tearful and he hates that i am ill and the decisions we are having to face. He has been bloody excellent but he looks terrified and tells me he loves me a lot and he thoght i was sexy with a bald head! All good stuff. Hard for him to watch me and he wishes it was him.
I hope you find someone good to talk to- male or female. I agree start a husband/partner thread and see where that goes.
Chemo is doable. Get as much help as possible and with practical stuff like cooked meals and washing clothes etc as this goes to pot.
PS i was on FEC- last one tomorrow.
Good luck
S
Hey all thanks for your kind words:
Small World Cathy!!!
Made Lucie cry with my strange sense of humour by suggesting that the after effects of Chemo sound like having been on a 3 day bender, having a really dodgy Prawn curry and waking up to find out your mates have shaved your head and eyebrows off. (oddly enough I have experienced that all and it wasn’t nice);=)
Am I too far off the mark or is it worse?
Then bloody “Secret Millionaire” on channel 4 made me get something in my eyes so they watered a bit.
Jansman - read a bit of your blog at work and had to stop - sure you understand why - interested about the infection control at the door - My kids must be mixing with a total of 2000 other kids and we’ve got to keep the Lurgy out - did this work for you?
I think the Flu, be it swine or otherwise is actually more scary than the Chemo during this period.
Lou is taking her hair into her own hands and shaving it soon, me too (Don’t see why, I’m not poorly!! ;=) , she had a number 2 dyed bright red when I met her anyway, thats part of the Lightning process thing too - “take control of the situation”
Rambling now due to wine, but have a read of this little ditty which we framed and keep in our bedroom - it says a lot.
desideratacard.com/
just wanted to say you are spot on with the chemo/bender analogy! I work with young offenders and have a bit of a laugh with some of the lads comparing whose eyebrows are growing back the quickest, and i win hands down on the best skin-head!!!
Also quite interested in the idea of positive thinking, a friend of mine who is a drugs and alcohol counsellor pointed me in the direction of the Silva method. I’d never rely on this type of thing as a ‘cure’ but using it alonside conventional treatment to help deal with the side effects has gotta be worth a try!
I’m halfway through chemo and have coped pretty well so far i think - no stays in the hospital despite my son having a chest infection and side effects have been manageable.
Best wishes to you and your wife - if she’s the unconventional type take a look at wigs on ebay - i had bum length dreads before the chemo and have been having loads of fun with various coloured wigs as a replacement!
Hi Paul/Lucie,
Sorry the blog was a bit upsetting at first. Some of the early posts were from when we didn’t have the results from the pathology on the mastectomy and ANC. Those were black times, but have turned out to be not quite as bad once we saw the report.
The infection control thing is really just “catch it, bin it, kill it” and several hand gel dispensers around the place. It is important, though. You can get the gel from various shops; the ones with aloe vera are better as well (don’t dry the hands out so much). Actually, we pretty much all have got a cold and sore throat over the past week, except Janet! Maybe the “infection control” has helped with that. I just hope she doesn’t catch anything before next Tuesday’s chemo, though, as they might cancel. That is the biggest worry for her.
My wife is not bothered about the hair thing either. I gave her a no.1 myself with a beard trimmer once it started coming out.
Hope you and Lucie are coping OK.
Hi I’m new here and I find this site interesting. Its really important for us woman to be aware of breast cancer. This site is really informative. We should all support each other.
Lol Paul, that idea about a three day bender is so true - unfortunately I thought I’d put such student behaviour long behind me, and now I’ve got to do it four more times. Never again might be a good phrase to use at the end of it…
And I’ll never be able to sit in a recliner chair again without thinking ‘chemo drugs…’
So i’m quite near the mark then?
To be honest the only way I can deal with all this poop is poor humour.
We saw the Onc doc, was 40 minutes late. Bad enough having to be there in the first place, but hey - WE turned up on time.
She made quite light of the FEC, reccomended Lou had the cold cap, said it kept the hair for about 80% of the girls.
To be honest I was looking foward to Lou getting a “Cheryl Cole”, but hey, the Gail Porter look does it for me too!
The thing that made us a bit cross is there is no rush to get into this. Therefore the chemo won’t start for a couple of weeks, which frankly is torture for Lou, you can’t see the light at the end of the tunnel when your not even in the bloody tunnel yet!!!
The other thing that annoyed ME, is that with all she’s been through already is the chemo only improves the 10 year prognosis by 7% and we are already backing a winner, but who wouldn’t take that dead cert?
It now sounds like I’ve got more chance of getting run over by a bus or hit by a metoerite.
But I guess to enjoy our retirement in Devon in 20 years time we’ve got to poison her for a bit.
Not Fair! - I asked the doc “how do we know the chemo zaps all of the bad guys?” and she said “We don’t” so I told her that was “shit.”
Surely theres gotta be a better way?
Thanks all of you for taking the time to reply to my drunken ramblings.
xx
Hi Joe im liking your sense of humour its a real asset to keep so positive.
Where can i find more about this Lightning Process thing, do you have to go to a group or what?
These are the guys we went to see. It was a 3 day course and quite expensive, but after nearly 4 years of M.E and to be cured after 3 days it was worth every penny.
It also cured my dog allergy!
Hi Paul and Lou,
Keep up with that humour!!
Oh and don’t get stressed by being kept waiting for appointments … you’ll get used to it 
Claire x
Oh - PM me if you want to know more about the Lightning process thing - no linkys allowed, thats why my post above now look like I typed it with my forehead.
Paul
definitely go for the cold cap, I’m six weeks in and still have my hair - ok so a bit thinner but still there. And I had to have it cut and styled on Sat - made me feel so much better. Slowly going bald pretty much everywhere else though! I tried on a Cheryl Cole wig and was pretty amazed at how good I could look. The Farrah Fawcett blousy blonde wasn’t so good. My wig’s still sitting in its box and part of me really wants to wear it!
Your prognosis calculator is the same as mine. I was given a benefit with adjuvant online of taking chemo to give 3% over 10 year mortality and 7% on recurrence. The consultant - surgeon and oncologist said they would not recommend chemo one way or the other and the choice was mine. Lots of sitting on the fence! I think they would not normally recommend it but have a hospital policy to offer chemo to everyone under 55 and the hospital has a very good success rate. I did loads of research on every chemo calculator on the net, practically stopped people on the street and asked their opinions and finally decided to go for it. I still don’t feel like it’s the right decision and I had to overrule my instinctive gut feeling which said don’t do it. But made the decision just to make damn sure I’m still here in 40 years - got more chance of getting hit by a bus than dying of breast cancer after this. Or at least I hope so! Everyone keeps asking ‘are you getting better?’ or ‘when will you know the chemo is working’ and are a bit shocked when my answer to the second is ‘I won’t’. Or at least I’ll only ever know if it didn’t work and I’d rather not go there. Get well soon cards aren’t really appropriate for chemo are they?
As for waiting for the onc, I wasted an hour of my onc’s time asking loads of questions and made the person after me in the queue very late for her appointment - fortunately I knew her from surgery and could apologise. My onc never complained or made me feel stupid or like I was wasting his time. Perhaps your onc was doing the same for the person before you. It’s this sort of service which makes the difference to feeling like you are a person behind this disease rather than just a number on the cancer conveyorbelt.
Just wishing it were all over - third session tomorrow if my bloods are good enough.
As for the waiting - make the most of the good times, I delayed my chemo to go on holiday and just enjoy myself. It makes little difference in the long run.
There will be a better way sometime in the future - a vaccine will be developed when they finally worked out what causes the cancer - not in our lifetimes, though.
Good luck
Helen.
Its a bit of a see-saw this thing… we’ve got the date for the first chemo, next thursday 29th, when Lou’s down I’m up, when she’s up i’m down - I’m down tonight.
Should we really be going through this at a young age? she’s 35 I’m 39!! WTF will it make us stronger… who knows?
Helen thanks for your kind words above^^^^^ get well cards p#ss me off as well, as do people asking “How u Doing?” Do they really expect the answer “I’m doing sh#te, my wifes got cancer, I’ve got 4 kids and bills to pay, how the f#ck do you think I’m doing!!”
actually reading that back made me lol. I usually just grin, put my shoulders back up again and say “Yup, fine chap”
Should I really get a blog to write down these ramblings? I would if I knew what one was, I’ll ask my eldest son what one of those is.
Helen as you said above, after all these years you would think the Onc’s would know how long an appointment may take by now, and would factor that in to thier schedule instead of making very apprehensive people wait well over thier time for thier appointment and then making them feel rushed, after all, it’s not every day you get to make a life changing descision about wether to poison yourself for 4 months.
.
Thanks for reading.
P