Dawn
How are you doing now?
Karen
Hi Caroline
I hope that today went well and you are feeling ok. It is such a relief to get the first one out of the way. Luckily I am still feeling good. District nurse is coming in from day 4 for 7 days to give me injection to increase white cells, not sure why given to me, guess blood test showed count was on the low side, will ask doctor at next appt. So far this has not been so scary as I thought it may be. Do really hope that you are feeling as well as I have been. Am waiting for my wig to be delivered was meant to be here before 1.30 today, obviously got caught up in the Black Friday deliveries!
I havent been along to headstrong, what products did they recommend?
Love and hugs Dawn xx
Ok, I now have some dates
Portacath being fitted next wednesday 10th December (under general anaesthetic) then chemo the day after on Thursday 11th. It will be 4 weeks after my op and two weeks from seeing oncologist. Seems like forever but guess it isnt really...
Feel better for having a definite time.
Maggie x
Hi Caroline
Thank you for your good wishes. First chemo yesterday so one down and only five to go. Wasnt to bad at all felt a bit nauseous and was sick once in the evening felt a bit under par . So far today feeling fine, although not been up long! Think the most daunting thing about all of this is that you really have no idea how it will effect you as everyone seems to be different. Had my blond bob cut short on Thursday and will admit to shedding a tear or two but am loving my new "on trend" pixie cut! Have decided against the cold cap therapy as suffer badly with sinustis so decided not for me. Have a collection of winter hats at the ready, waiting for my wig and soft caps to arrive and am giving the Talika eye brow and eyelash serums ago as read that they can help with potential loss of eyebrows and eyelashes - worth a go.
All we can do is take this journey a day at a time it is amazing what we can deal with when we have to. Please try not to worry about Monday I was in and out of the hospital within an 1.5 hrs and spent a few hours with my daughters before heading home to my sofa!
Sending love and hugs to you and will be thinking of you on Monday. Please let me know how you get on x
Updated my post again to include no constipation or upset tummy, another positive i forgot 😉
Deelush x x
Thank you Caroline for your reply. Saw my lovely surgeon today and so she's given me the go ahead for tomorrow and not looking forward to it. But had a long chat with her about the implications of my diagnosis (I was not prepared to ask questions earlier, but having read through all the threads on this site I went armed with questions today!), she reassured me that we've done the best procedure, and following the right treatment, but yes it was a big tumour and I'm 1 in 4 out of 100 patients that she's got her eye one - in good hands, but scary. Also pick up my wig tomorrow night and ordered some soft beanie hats and treated myself to a nice Fat Face beanie today for the cold days ahead!
Keep positive out there, over and out for a few days of nausea!
D x
Hi Ladies
Reeling here from meeting with Oncologist today.
Treatment is 4 x EC (every 3 weeks) then 12 x Taxol (weekly) so 24 weeks in total as long as I can go straight through without a break.
Need to have a Portacath fitted hopefully next week then chemo the week after.
Anyone had this combination?
Need to let it all sink in.
Maggie x
Hi Deleesh
Have just read your your post and have to say it is truly inspiring and uplifting. Have my first chemo on Friday and although a little apprehensive want to get on with it now. Good to read the positives of the treatment and hope that I deal with it well as you seem to have done. Hope you are now nearing the end of this stage of your journey. Dawn x
oooops last paragpaph ment to say Karen. x
Hi Everyone, I'm right there with you all sending big hugs!
Heck Dawn what a tough time you've had and I hope your feeling a little better. Thanks advice re cold cap, I think I will give it a go and add add extra layers to my list for Tuesday. My hair is now quite short so keeping my fingers crossed but I know deep down it's going to fall out. I read on another thread about a women who wore a weave rather than a wig following/during her treatment from www.heathershair.co.uk. They are a charity and the weaves are free. They just ask for postage and a dontation if your able to give.Mine arrived today & It looks ok I think.... What are the NHS wigs like? OMG I just cannot imagine wearing one or the weave but like everyone, I am relieved to be prepared. Re the driving I was given the same advice about contacting my insurer about when to start (Sheila's Wheels) and they told me to follow doctor's orders. I still haven't driven but mainly because I haven't needed to. One positive thing about this experience is that my son, who has recently passed his driving test, is getting to use the car.
Dawn I hope you get your start date tomorrow and can get on with it. You sound positive and it's helping me to be get my head around things too and I lets not forget that this is our treatment to fight this disease so bring it on and keep supporting each other. Take care everyone.
Love Caroline xxx
Hi Ladies, I was diagnosed out of the blue at the beginning of September, had a mastecomy within 3 weeks. A 8x7cm tumour plus a 2cm tumour and 26/27 lymph nodes - and I didn't know anything about it. I had a reconstruction at the same time. I've had a port cath fitted for the chemo. First chemo 31st October with cold cap, terrible nausea for 5 days and headache, very tired. Hair loss from week 2 coinciding with infection - wound opening, IV antibiotics plus oral antibiotics. Chemo has been postponed for a week to let me recover so waiting confirmation for this Friday 28th.
I wish I'd found this forum earlier, I feel like the old girl, but only gone through one session so far. Really not lookiing forward to the next round.
I've tried on wigs, waiiting fo the final fitting as they didn't have the right combination of colours and styles I dont think I'm a scard kind of persoh.
Good luck to all. x
Hi everyone,
Soooo good we all here to support each other and have a place to vent.
Sarahjane, I know what you mean about not driving. I still haven't attempted it yet but planning to try next week but still have tightness in my arm an op area and it's my left side. I was advised that it's ok to drive 2 weeks after surgery when you feel like you can do an emergency stop. Errrm...not very helpful.
Like you, I cannot imagine loosing my hair but I know I will so I've booked myself in with Headstrong (nxt Fri) to get some advice. Details are on this site and looks like they kindly provide the service in most areas.
Keepmumsafe, agree getting stopped in our tracks really makes us realise how much we juggle and run around doesn't it. I think us working mums are the cogs that keep the wheels turning. The wheels maybe turning a bit slow at the moment but the are still turning. Hope goes well tomorrow.
Take care December girls. Love C x
Hi ladies im so glad that my post is helping some of you feel less worried about starting your chemo, i wish i had found this site prior to all my treatment it helps wih lots of worries and queries and to know your not alone,
thought of another positive i forgot to lists ( ive added it onto my original post now)
No periods 🙂
Deelush x x
katherine62 perhaps you could edit your post reply to include the above "no periods" for me thanks .
Thanks deelush and Wp, , thats soooooo helpful. probably joining you ladies, attack plan tomorrow hopefully...unless they send me for other tests... o the endless dragging clock hands!
Hi waiting, this is the place I come to howl at the moon too. Xxx the brave face is exhausting, but our families need it. Its so crazy to go from being 'the boss of me ' to having no control over anything. Women are so used to juggling everyone and everything this random meteor just wrecks us. Its amazing how sharing the load, even this one, helps strengthen us all.,
Xxxx sending love
Can i add my thanks to Deelush for THE most inspiring and comforting post? Really really helps to read
@deelush wrote:Hi ladies, thought i would just post about my experience with chemo because i can truely relate to how scared you are all feeling about the unknown. It really isnt as bad as you think its going to be, and trust me i was ready to run out the escape door when i was told that chemo was on the cards, even after the appointment with the oncologist and his advise i was still like err no i dont want this, but my husband said it needed to be done and gave me strength to go ahead, i was so worried i cried when i went for the talk with the chemo nurse a few days before my treatment started, such a wuss. But i did it. I'll list my negative and positive points so you see it wasnt that bad, and once youve got the first one over you know what to expect, but youll be sitting there thinking whats going to happen when the drugs start going in but nothing happens so dont worry i actually sat eating my sandwhiches during treatment and even managed to fall asleep through one as its such a relaxing atmoshere, honest
Negative points for me were; lost my hair (didnt want to cold cap) so that was expected but i kept most of it until week before my third treatment then i had it shaved off so i did well compared to most.
Heart burn
fatigue
loss of taste
night sweats
And numb finger tips (but not until last chemo)
Positive points (oh yes there were positives)
being looked after by a fabulous bunch of nurses
having the oncologist at the end of the phone if i needed advise
having a quick pass into A&E if needed ( used it twice but nothing to worry about)
Having an emergency number on hand 24/7
not suffering from any form of sickness or nausea what so ever, ( i still took the tablets though because prevention is better than cure)
having lovely skin, yes all over from head to toe my skin was lovely clear and oh so smooth
having lovely finger nails they grew fast strong and nice and white
all the aches and pains i had in my body prior to treatment dissapeared
The heart burn was sorted easily with lansoprazole
the loss of taste only lasted a week lots of cold drinks helped
The fatigue always got better
i finished chemo on 3 september and my hair is already an inch long all over and it isnt all grey and curly like i i was told it would be and it started to grow back before my chemo had finished.
not having to shave my arm pits and legs at all
so ladies as you can see its doable and my positives far outweighed the negatives and even they were minamul (probably didnt feel like it at the time but they really were)
please take care and really try not to worry
deelush x x
and REREAD and REREAD that post. Sending you all much love,
XXXXXXXXX
Hi deelush,
I love your post. It's very comforting to know that you are at the other side and positive. Ive been having a bit of a week before starting chemo emotional day. Reading your post has help loads so so thank you so much. Take care everyone.
Caroline x
Thank you Deelush - reading your of your experience has really encouraged me and I'm sure it will the other ladies about to start Chemo.
You hear so many negatives that the fact that your positives outweigh them makes me feel much better about what is to come.
Maggie x
Hi ladies, thought i would just post about my experience with chemo because i can truely relate to how scared you are all feeling about the unknown. It really isnt as bad as you think its going to be, and trust me i was ready to run out the escape door when i was told that chemo was on the cards, even after the appointment with the oncologist and his advise i was still like err no i dont want this, but my husband said it needed to be done and gave me strength to go ahead, i was so worried i cried when i went for the talk with the chemo nurse a few days before my treatment started, such a wuss. But i did it. I'll list my negative and positive points so you see it wasnt that bad, and once youve got the first one over you know what to expect, but youll be sitting there thinking whats going to happen when the drugs start going in but nothing happens so dont worry i actually sat eating my sandwhiches during treatment and even managed to fall asleep through one as its such a relaxing atmoshere, honest
Negative points for me were; lost my hair (didnt want to cold cap) so that was expected but i kept most of it until week before my third treatment then i had it shaved off so i did well compared to most.
Heart burn
fatigue
loss of taste
night sweats
And numb finger tips (but not until last chemo)
Positive points (oh yes there were positives)
being looked after by a fabulous bunch of nurses
having the oncologist at the end of the phone if i needed advise
having a quick pass into A&E if needed ( used it twice but nothing to worry about)
Having an emergency number on hand 24/7
not suffering from any form of sickness or nausea what so ever, ( i still took the tablets though because prevention is better than cure)
having lovely skin, yes all over from head to toe my skin was lovely clear and oh so smooth
having lovely finger nails they grew fast strong and nice and white
all the aches and pains i had in my body prior to treatment dissapeared
The heart burn was sorted easily with lansoprazole
the loss of taste only lasted a week lots of cold drinks helped
The fatigue always got better
i finished chemo on 3 september and my hair is already an inch long all over and it isnt all grey and curly like i i was told it would be and it started to grow back before my chemo had finished.
not having to shave my arm pits and legs at all
no periods
no constipation or upset tummy
so ladies as you can see its doable and my positives far outweighed the negatives and even they were minamul (probably didnt feel like it at the time but they really were)
please take care and really try not to worry
deelush x x
Hi everyone, Just bit of light housework and a walk in the sunshine today but frankly I'm quite knackered this evening. Five weeks ago I was a regular gym person. flipping heck........
Nutty its good to hear you are coping with your treatment and that it's not as bad as you thought it would be. I feel much calmer after reading your post..thank you. I think I will have a go with the cap and take tea with it. Has anyone seen Headstrong as thinking I will make an appointment with them. Maggie, good idea I will ask my son what he thinks about helping me to choose a wig. Although, this evening, he was watching tv with his back to me and he said, "Mum, I think Denise (this is my hairdresser) will be able to sort a wig out for you." He is obviously a bit worried about how I'm going to look. Bless him, he's 13 and a bit awkward at he moment. We also have an 18 year old boy. They are very perceptive and don't miss anything so decided to be completely honest with them both and it seems to be for the best........but its sad our children have to deal with this at all isn't it..
Flossie think we all would all agree that the waiting is the worst bit. Things happened very quickly for me which has left me in a state shock. I hope you feel better when you have a treatment plan.
Be kind and gentle with yourselves lovely people.
Caroline x
Hi Caroline
Just a suggestion but could you take your son to choose your wig with you?
Rather bizarrely I am taking my 20 year old son and my 85 year old Mum to choose mine.
Your son might actually find it quite fun and will then not be surprised to see his Mum in the wig that 'you' have chosen.
I am by no means an expert in these things but worth a thought?
M x
hi waiting
I was diagnosed a week ago and saw my consultant today, fully expecting to be given a start date - actually looking forward to having a start date so I can feel like I'm getting on with doing something! Instead I was given another appointment to see the oncologist next week, and told I will have to have an MRI before the chemo starts. So more waiting! Everyone in my life has been so supportive - but I am beginning to feel like they will get bored of seeing me waltzing around as normal! This experience is such a roller coaster 😞 I know what you mean about crumbling inside. I'm trying to put on a face for my son and my friends and work collegues but really I'm struggling with the feeling that I'm doing nothing! I'm sure once things get going I'll want it all to slow dawn again lol
Good luck with your treatment. I hope you feel more settled once you get going xx
Hi everyone,
Thanks for sharing with me girls. I am blessed with a very nurturing and supportive family and friends but I feel I need to 'be brave & get on with it' around my loved ones......I'm sure you know exactly what I mean. So it's helpful to be able to share with women who are going through the same emotional ride. I agree Scrumpy that this site really is a life line. I had another similar episode back in 2010 and found Haven to be such a massive support back them too. Highly recommend I went to the one in Leeds...
Thanks for your reassuring advice Wendy which I will follow. I'm still undecided about the cold cap. My 13 year old son asked me last night what I will look like in a wig? aaaagh...........I told him that I would probably prefer to wear a scarf and he told me that I really must surely want wear a wig. Oh dear what to do.................
Maggie, good luck with your scans today and it's reassuring to hear about your friend and let's hope we are the same. Like you I would like to work and try to get back some normality in life but been advised not to as I work out in the community and I am scared of not being able to bat off coughs and colds etc................
On a positive note it's a lovely sunny day and I've been for a walk to the hairdressers. I know my hair will fall out but I'm enjoying it while I can. Be kind and gentle with yourselves.
Love and Hugs to you all. Caroline xxx
Hi
Like you, I was diagnosed on 10 Oct with IBC, had my left breast removed on 22 Oct. I have a full body scan on Monday, see my oncologist Wednesday therefore I should be starting my chemo 1st week ot December.
All been a bit of a mad few weeks. Not looking forward to the chemo but have read alot of hints and tips so hope I am as prepared as I can be.
I look forward to us all sharing our experiences together. Reading all these forums has made me feel that I am not alone, that what I am feeling or going through is normal.
This site is keeping me grounded and sane, thank you.