Hi all you lovely brave ladies.
Hope you have managed to enjoy the long weekend, despite the wintry weather. I managed a little walk between snow flurries on Sunday. Unfortunately my husband couldn’t join me because he had stubbed his little toe during the night, on way to bathroom! ?broken, or just badly sprained, not sure, but it’s painful and swollen, bless him! We had to laugh about it.
Thanks for info re first chemo session. I’m trying not to think about it too much. Some friends have offered to do the driving, so that’s a help. We would have to use public transport otherwise, as we don’t have a car.
I’m still waiting to hear from oncologist. I hope there will be a letter in the post this week. My wound could do with a couple more weeks, though. Still have fluid building up, so need to get that drained again, I expect.
I felt tired this morning so went back under the duvet for a couple of hours. I need to make up for lost sleep!
What do we do about buying a wig? No-one has said anything about it to me yet. So much to think about!
I felt very weepy on Good Friday, So many things to worry about, and missing not being at work. Feeling lonely really.
I snapped out of it during the evening and made a chocolate cake for a friend who is having a difficult time. I’m better if I don’t dwell on myself for too long! The shorter time the better, in fact.
Paula, it must be hard with two young children. Hope you get lots of practical support, and make contact with someone in same situation so that you can get emotional support, too. That would help.
Be kind to yourselves. hopefully the weather will improve soon. God bless, Ann ((((hugs)))) to you all.
Hello all
I’m sorry to have been so long in replying. I felt rubbish last wednesday, so went to hospital for a check up, and ended up staying there until yesterday! No white blood cells (again), an infection and a fever. Easter came and went… and my chemo has been delayed a week to allow me to get some strength back before No4. Something to do with unusually sensitive bone marrow, but it is blood tests on Thursday, together with a meeting with the specialist to establish the prescription for No 4., now due on Monday 31st.
Home now, and very happy to be so, but with so many drugs it really is a bit daunting to know that that many chemicals are required for one’s ongoing health!. Here’s one that normally takes 2 or 3 ibroprofen a year! The changes in me since dx in January are really quite astonishing. I had done really well in keeping up with work, but since this has all blown up I am out for another couple of weeks.
Sarah, I’m glad you got out to the van, but sorry it was so cold! We now intend to have 19th April as our first outing… all things allowing. Good to hear that Wanda is doing well. When it is not noticed, then you can go out as and when you like.
Welcome Paula. This is a very exclusive club. Joining conditions are rubbish, but once you are in, the friendship and support to be experienced is second to none!Each of is on a slightly different regime, so between us we can give our experiences and support when we can.
Ann, I think the waiting to start chemo was worse than just getting on with it. I was only 3 weeks between the second surgery and the start of chemo - each is individual, and you will be well advised. In many ways, when I had the first session, it was then a case of getting through the process, and that was less scary that the ‘what will happen’ beforehand.
It’s that same with hair loss. I was really bothered before it happened, but you find your own way of coping. I had mine cut very short, but stylish enough for a number of complements, which lasted about 3 weeks. I could not put a wig on my head for anything! I now am managing with turbans and scarves, and am happy at home completely bare.
Louise, when is your next? I think you are due a week of feeling good first aren’t you?
Hope all are well and happy. We are all making progress!
Much love
Ann
Hi Ladies
Wooppee I have broad band!!! Nephew been round tonight to set it up so I am a fast cat now!! Can I cope with the speed? Sorry you have not been too well Ann MC, I hope you are ok for next week. I have been to ONC today at one hospital he prescribed something for all the “wind” so whether it will stop the belching and … who knows!!! I had to wait half hour for the prescription then I had to drive about 30 miles to the other hospital to have my bloods done I am now nicely punctured as once more they could not get the vein, 2 nurse 4 attempts in the end I said do it in the other arm the one they are not supposed to so they did!!! Bingo. Well I presume my bloods are ok so I am dreading tomorrow with the veins.
Anna you mentioned wigs well I did not have to pay for mine the ONC ordered one for me and I had to pick it out of a book, when I went for my pre chemo visit, I think all hospitals are different, mine came within 3. I had about a 3 week wait from op to onc but again all hospitals are different it seems, it also seems to vary from where you live and the speed they get things done. I know what you mean about missing work I have not worked since Dec, I get really bored some days and people who work are so busy!!! Ann you take care about going into work you were doing really well. Do you think that is where you got your infection from? I should take it easy for a few weeks.
Yes Louise it is my last FEC but then I have 3 TAX so it is not over wish it was. I think I remember Matt Lucas.
Any way Love to all
I expect I will be absent for a few days whilst I battle with the Gremlins and pop pills and feel sorry for myself!!!
Take Care all
Love Sarah X
Hello there friends
Hope you all have had a good easter. Same S**T but different day here, could’nt really do much as it was too cold and my kids are house plants when its windy!!
Nevermind, I did my mumsy thing and baked some cakes and made some lasagne’s etc to stock the freezer ready for my combat with chemo. Knowing there’s food in the freezer is a good start as my hubbie can eat for England. Born and bread into farming stock and living in the country sorts that out!!
My kids made easter though even if the weather did’nt. We spent time planting seeds in pots, painting and drawing and cuddling in bed not having to get up and rush around as normal! We even went out for a meal and a game of ten-pin bowling.
I start my chemo on April 3rd but have to have a heart scan first, I think I’m coming round to the idea - it will be difficult be I know it has to be done. We’ll do it together!!
Had to cancel my holiday today to Majorca, upset a bit but know its for the right reasons’ it would’nt have been fair on my family if I had to spend the duration in our hotel room - so will sort something out after all of this. A friend has suggested a girlie weekend at a health spar near Hexham - its about an hour from home.
Well that about it for now, keep your chins up,
Speak soon
love
Paula xxx
Hi Paula
Sorry about your hol, guess it was best to cancel. Good luck for next week.
I had my 3rd FEC got a vein after 2 attempts much to my relief I was whisked in and out fastest yet 40 mins!!!
I feel ok but am just kinda sitting waiting for something to happen! It’s weird isn’t it?
I’ve been to Hexham it’s nice there, so we have a Notherner, a Southerner and a Midlander, we cover the country, we only need Wales and Scotland now, well I have a caravan in Wales does that count?
Not sure where 2 of you are from???
How are the rest of you doing?
Love Sarah x
Hello girls
Actually we have two Northerners, Paula and me- as I am a Yorkshire lass!
Sarah, I was thinking about you yesterday, especially re the VEINS, so I am relieved to hear that you weren’t there long, I bet you just wanted to run when they said “that’s it we have finished” So how are you feeling today? Has it hit yet? Hope you’re not feeling too icky, just take it really easy and remember that it will only last a few days, I am 6 days behind you in treatment terms so mine is next Tuesday.
Hi again Paula Your Easter sounds very cosy. When is your scan? You say your chemo is next Thursday, good luck with it and we will be cheering you all the way. What a shame about your hol, now you must start to plan another one for when your treatment is done. I am about to book one for October, just arranged the travel insurance today, got a special policy with Aberdeen which will even cover BC for a small extra fee.
Ann Mc Sorry to hear you have been in hosp- you poor love! That is the one thing I am dreading above all, having to stay in! However I am a right pessimist cos several weeks ago I packed a sports type bag with hospital stuff just in case. I did have to go back 10 days post op when my wound burst (literally, like Alien) and it was so awful in there without any stuff (was admitted from A and E) so I decided to have a bag ready for another time. Good luck with your tests today and hopefully you can go ahead next Monday, fingers crossed. Yes I am feeling good at the moment and even went to work yesterday and am due the day after you, April 1st
AnnaG How you feeling? You would be proud of me cos I have actually made some plans for the garden, my OH does most of the work though (hehe) You’re right, it IS hard getting used to not being at work, life seems to come to a standstill. I saw a counsellor yesterday which was really helpful. Is your husband’s foot better? We had our new shed delivered yesterday and my OH is delighted and keeps looking out the window, I may suggest he moves in…bless him.
Love to you all
Louise
Hi Louise
Well amazingly enough I am feeling ok!!! I am waiting for the crash but so far no sickness or nausea or indigestion I was prescribed some thing for that by ONC. I did not sleep last night but never do first night I had two naps and woke up both times drenched in sweat not sure if that is the menopause!!! Have been asleep this afternoon but have eaten quite well which is a shame as I was relying on my fasting days to lose the 4 pounds I have put on!!!
So I will wait and see, am having trouble with runny eyes but have been prescribed drops for that too.
Well done for going to work I hope they treated you kindly? Can’t remember if you have said this but are you getting yourself signed of and on? I am just signed off and cannot seem to find a way to be able to work despite several attempts still I am still on full pay so have decided to worry about that when I go on half pay!!! Have decided to enjoy myself in Wales now van is open!!! I am hoping to go back next Tues till the 14th April if all goes well. Glad the counsellor helped too, and congrats on being a Northener!! Hope next Tues goes ok will be thinking about you and Ann on MON and Paula next Thurs what a busy week!!! I have been doing my Garden too but actually doing it!!! plugs in greenhouse ready for pots! I thought of you today I was watching FIFI and The Flower Tots sad I know!!! and Slugsy was wearing a buff!!! LOL
Love Sarah x
Just to say Hi to everyone on this thread, I’ve been without a phone line or internet since Easter Saturday when a falling tree took a telegraph pole down. Things move quickly on here but not so quickly getting a new pole up!
Have been on some other threads but to update I’m 51, had mast/DIEP recon on 1 March, 3cm Grade 2 invasive tumour, 2/27 lymph nodes microscopically positive, ER+, HER2-, advised chemo followed by rads and tamoxifen. Met the oncologist last Saturday and meeting the chemo nurses and viewing the chemo suite tomorrow - today, sorry, Friday pm. Been asked to have a Hickman line inserted next week and chemo starting the week after, 6 weeks post-op. Offered FEC/Taxotere over 4 1/2 months or Epi-CMF over 7 months, advised latter would suit me better. Youngest daughter has GCSEs next term and trying to minimise disruption for her. Really worried about hair loss, and fatigue! Lyn xx
HI Lynn
Sorry you have had to join us on here, but I am sure you will get a lot of support on here and other threads. Have you looked at Kelly’s top tips for chemo after you have go shopping lots of them work and are good. You sound very together about the chemo. You will cope with the hair loss somehow, I cried thinking about it but since it happened I have been okish still have a covering after 3 FECs and wear Wanda the Wig to go out and buffs in the house when there are people about, the fatigue is something else you just have to go with it I am afraid if your body wants sleep let it!!! hope it all goes well for you.
Sarah X
Hello Lyn
We have all started chemo this year - Paula is the most recent who starts next week. You are very welcome, even if it is a club you did not want to join! Do look at the top tips thread, as that has some great ideas. As for coping with hair loss, it is the build up that is the worst. When it happens, it is just the next thing to cope with. Each does it different. I loved hearing about Sarah’s Wanda, as it made me chuckle! I have not got a wig and do not want one. i manage with scrves and turbans. Everyone is different.
Any questions, do ask. At least of us looks at this most days, and will get back to you as soon as we can.
all the best
Ann
Hello everyone
We have a growing club and that is good, even though the reason for it is…baaaaaad. We will all help each other through. Welcome Lyn, we are all here for you and don’t be too worried, you will get through with some support, everyone is different as to how the chemo affects them (as I am sure you know from reading this and other threads). It is really hard when you have kids to consider (my 13 year old was horrified at me going bald) but they cope better than you would think.
Sarah Oh how brill that you have been feeling Ok…ish. Those night sweats are the worst aren’t they? I had a similar night and kept waking up very damp. My dreams were: a. I had to walk through a sandstorm with my kids, b. My handbag and all cashcards were stolen and c. I was thrown into prison for a crime I didn’t commit and I was married to an MP(!) who wouldn’t come and visit me for fear of the political implications. Hope we both get a better night tonight!
Damn, I was hoping no-one would spot my moonlighting TV role as Slugsy lol, I told you I was one!!! I am doing two weeks off, one week on at work. In the second week off sick I can do some bits from home, like planning work and then go in for the third week. It went fine on Wednesday but today one of my meetings was cancelled, I had to make an unplanned trip to the bank to sort some expenses for one of my girls and then the hot water tank started to leak at a rate of knots! We got the water turned off and the landlord is arranging a repair over the weekend but I’ m out the picture for a while now anyway.
Ann Good luck for Monday, are you “ready”?
AnnaG and Paula How you both doing?
Love Louise
Hi Friends
Good to hear from you, welcome Lyn! (in the nicest possible way)
Good Luck Ann for Monday, we will be thinking about you.
Well since my visit to onc, I’ve now got a date for a heart scan on tuesday and start my chemo Thursday, I’ve had a bad day today worrying over chemo and how it will effect my life and that of my hubbie and kids, just hope I can muddle through somehow. I think I’ll feel better when am one cycle down.
My girlie friends have organised a weekend away in November for 6 of use - a sort of pick-up, session at a lovely hotel and retreat, really looking forward to it. Went shopping to Newcastle yesterday with my mum, sister and kids and had a bit of therapy!! I’ve also had my long hair cut into a bob today (beckham stay), so I suppose that’s a step closer!! My hairdresser was in tears though as it has taken me two years to get it shoulder length.
Hey, Louise your moonlighting as slugsy will do you proud, my daughter loves fifi and the flower tots!!
Ann Mc, so sorry you’ve not been to good, hope your on the mend now.
Ann - i’ve been doing a little bit of potting up too, I’ve been putting my begonias in pots!!
Well that’s about all my crack for now, take everyone xxxx
Love Paula
Thank you all, visited chemo suite today, got more info about the central port which goes in my chest next week, had a blood test done so gently I didn’t feel it (first time ever that I haven’t squeaked!), and really liked the nurses. They advise getting my long hair cut at least to shoulder length so the loss is less dramatic, and I think I’m going to try the cold cap. My daughter found a website where you upload a head and shoulders photo and can transpose hundreds of different hair styles and colours onto it - some based on celebrities - great fun and I have a better idea of what may be bearable as a first step from long hair. I’ve only had it shorter years ago during a phase of clinical depression and do associate short hair with feeling ‘low’ because of that. Considering a wig, but how do you turn a buff into a hat? We use them as neck warmers but do you clip or knot the opening to make it into a kind of beanie? I’ve only ever worn the odd baseball hat but told my youngest (16) that I’m having a tattoo up my scalp and getting facial piercings, it’s a mid-life crisis. Love, Lyn xxx
Hi Lynn
You can do all sorts of hats with a buff, there should be some instructions or some shops have a video you can watch, my nephew aged 15 made about 10 out of mine he was an expert so I am sure your 16 year old will also be one too!!!
So you have been spotted Louise, fame at last!!! I’ts amazing how day time TV grows on you YUK!!! I want my brain back and my mind I have just been talking to someone from work they have still not got any body in to cover me so by the time they do I will probably be back!!! It will be like starting a new job as nothing has been done since I went off sick in DEC!!! And Yes I am still feeling okish went out this pm for 2 hours with Wanda!! to one of those cheap shops spent a fortune on things did not need bought some stuff for garden, including a Mickey Mouse Solar light to keep Minnie company who I bought last year!!! (We were going to take the Kids to Disney again this Summer Paris so I am still thinking of it but will not book until all is over.) I am going to get some more plugs tomorrow and plant then too in green house.
I am waiting for the crash and the egg to hatch!!! Nothing doing there yet despite beans and seeds!!!
So good luck to you all next week and hope it is as easy for you famous last words I know!!!
Good for you Paula getting hair cut it will help I have already got short hair but I hade it cut even shorter, and it did help.
Love Sarah x
Hello everyone
Firstly I have looked at Slugsy and I can see the resemblance lol.
Lyn, go to www.buffwear.co.uk and click on the movie camera on the right hand side, it has videos of different ways of doing buffs, I used the “original buff” video, BUT I have to say that when he does the style where he lets a long French Foriegn Legion flap hang down at the back, I tuck the flap inside at the back so it is all snug and there’s nothing hanging down.
Sarah How you feeling? have you laid the egg? I have got some senna for this time round. Yes it will be good for youto look forward to a hol, and you have breaks at the van in the meantime. We booked yesterday, to go late October to Malta, yipee! Got a fab insurance deal through Aberdeen too.
Ann Let us know how you get on tomorrow. Number 4, you are getting there! It’s me for number three on Tuesday, providing the sniffle I have got today doesnt come to anything major, fingers crossed.
AnnaG How you doing? I have been out in the garden and even did a bit of sorting out for my husband, who then had to spend two hours tidying the shed stuff and putting some log roll edging along the grass (I was indoors ordering some holiday clothes from my catalogue by this time!)
Paula good luck for your scan, as you say, you will feel better having done one lot, at least then you will know what you’re dealing with, the first time, it feels like going into battle against Braveheart, armed only with a squashed banana!
love to all
Louise
Louise I will never watch that programme again without thinking of you!!! Hope you all doing ok? I had to go to DR yesterday my vein was rather sore and swollen so I am on antibiotics as a precautiionary measure in case!!! Of infection also got some stuff for mouth which has flared up and some stuff for bowels, came away with quite a cocktail!!! Must say mouth stuff was brill, so have had to delay going to Wales for another day have felt very tired this time round. When any one says now they feel tired I just laugh and think if only you knew what tired was!!!
The egg hatched last night!!! Think it was a Dragon’s Egg
Have been in greenhouse planting plugs for my life so hopefully something will grow in there can’t have plants in house as kittens eat them now, so all fuschias are in green house with geraniums so we will see.
Hope you all survive this next batch smoothly I keep telling myself it is only for 1 week, that you feel really rough. As someone said to me well if you have to sleep till July at least it will be over by then and you can enjoy your summer hols!!! LOL X
Love SARAH
hello Sarah and all
Oooh that sounds nasty with your infection (s), glad you got the meds though as you can really suffer if these things drag on. What is the mouth stuff called? Glad you laid the egg. I have heard from other ladies that number three can be more tiring, no logic to that but seems to happen.
I have had my number three, bit of trouble with my veins this time (ow!) but sorted in the end. Feel very “other wordly” just now, cos of the steroids. Will be taking my senna to start brewing the egg.I agree with you re the tired thing, sometimes I just keel over sideways and have to have a quick power nap.
How you doing Ann? Good luck with Thursday Paula. Hope AnnaG and Lyn are well too?
Love to all Slugsy (aka Louise)
Hi all, thanks for the advice re buffs, of course it’s so obvious when you see someone else do something creative! Tentatively thinking about wigs, will talk to salon in town next week, where there is a specialist in dealing with chemo ladies, cutting and ‘wigging’ them. Went to hospital for physio on cording today and in the ‘ladies’, someone about my age, I think, was adjusting her wig… I wasn’t brave enough to say anything - maybe brave isn’t the word - in a way I wish I had, but I don’t know if I’d be furious and humiliated if someone with long hair mentioned mine when it’s all gone… what would you do? Portacath going in tomorrow, just had a blissful bath before being stuck with another dressing. Sarah, is the mouth stuff for ulcers? I get them lots anyway so anticipate more during chemo. Paula, good luck Thurs, I may not get on here tomorrow, depends if still floating around from IV sedation! Louise, naps are VITAL, power or otherwise. I have had only 2 days since surgery without a nap. Zzzzzzzz
Lyn xxx
Hello all
No. 4 went quite well. The dose reduction has made a significant difference, I don’t feel half as ‘spaced’ as I have done. That is the last AC, next time it is Taxol, so I need to investigate the side effects, which I am told are different.
Went back to work this morning. I feel better when I concentrate on things other than myself - even though I get tired, I am sure, for me it is worth it. Going to try to do mornings until the next cycle… we’ll see, last time it was rubbish, and only managed 2 days! My ‘power nap’ is a couple of hours in the afternoon - then a lack at night! There is no way to win on sleep that I have found yet.
Sarah, sorry to hear about your mouth ulcers, they are a real nuisance, aren’t they? I’m glad you have been given some bowel help… I take Movicol from the chemo day until I stop the steroids, and that keeps me under control. I was given them to counter cocodamol after the ops, and the onc recomended that I use them again. You can buy them over the counter if you need.
Louise, 3 down, how many more, I’ve forgotten? It seems as though the ‘process’ is getting on for all of us.
Paula, good luck for tomorrow, hope all goes well.
Lyn, hope the line went in ok, I understand it makes each time easier - not something I was offered. Each hospital seems to do things so differently.
Love to all
Ann
Glad you’re Ok Ann, just see how it goes with work, these things are never predicatable, as we well know! I have 3 more chemo to go, the same as I have been having so far, it will be interesting how Taxol differs for you.
Paula thinking of you for tomorrow
Lyn How did the hosp session go? is the line in Ok? At least you won’t have all the trouble with veins, I know Sarah has had some trouble and it was a bit hit and miss for me yesterday too.
Sarah How’s your mouth? My senna worked this morning! Am going to continue to take it for a couple more days. When do you go to the van?
AnnaG Hope you are doing nice things before chemo!
love to all
Louise