Ladies
I have asked a couple of the ladies from the chemo monthly thread to pop over and see if they can give you some advise and support so hopefully you should hear something from them soon.
Helena xxx
Hello team April surgery, I completely understand the anxiety and low feelings about anticipating chemotherapy. As some of you know, I had chemo before surgery - 8 cycles of accelerated EC-T - perhaps I can share some thoughts that might help?
I was immensely apprehensive about starting and really didn’t know if I would end up an incapacitated heap for months. I didn’t! I worked all through my chemo, although I am fortunate to have a job that could be done from home (I am a Professor in a Medical School/University) as well as on site. It really wasn’t as frightening or debilitating as I had feared. Although I did have some rough and testing days, they passed and I drew hugely on the support of my fellow chemo starters (the November thread) to get me through those as well as friends and family.
I don’t know what type of chemo you will be having, but there are probably some common experiences/suggestions which might help. In practical terms, I drank tonnes of water before, during and after and everyone seems to agree that is useful. I took all the anti-emetics given to me religiously and, when I struggled with nausea a bit, I told the oncologists who added in additional medication/reviewed dose and I felt better. You never need to cope with side effects alone. Always speak up and there will almost certainly be something that can be tried. I exercised and walked throughout even when I didn’t want to bother. I always felt better for even a small bit of activity and for getting out, despite it being the depths of winter for most of my treatment. When I had side effects e.g. muscular/bone pain from the treatment, I was never brave. I took the medication prescribed/offered and it helped lots. I also tried hard to be as kind to myself as I would like to be to others - there is no ‘right’ way to be during chemo and some days will be tougher than others, so try to be gentle and understanding of yourself. Appetite and taste buds can be all over the place, but I just ate what I could as and when I felt like it. I had lots of weird cravings that would pass as suddenly as they came, but I went with the flow and mostly they were healthy - I also had reserves to live on!
In terms of the emotional impact, I did have days when the chemo monster was in town and I was a grump. My family began to understand that it was always a dip following the steroids stopping around days 4-6 and we were able to manage the monster, although they had to be quite forgiving sometimes. I was often a bit teary then too, but found that letting out my emotions enabled me to be resilient and stronger. It was only by allowing myself to feel and express emotion that I could be authentic and move on. This is a tough road we are walking and it comes with many complex emotions - allow yourself to feel them and, if needed, talk to your BCN, a close friend or come to the forum. I did all three and always felt stronger and calmer for doing so.
I have gone on and on, so will shut up now, but do feel free to ask anything. I am listening. xx
Hi ladies - ladybowler has asked for people to visit your thread x
I am from October chemo thread and like you all I was anxious in fact I was more than anxious I was terrified
Chemo wasn’t a barrell of laughs but it was totally doable and the fear was worse than the reality
The main things are speak to your team they are very very good if you talk to them and drink lots of fluid
If you feel sick or are sick they will give you extra meds they have meds for pretty much anything
When I had to take the steroids I was buzzing and awake all night but got sleeping pills just for steroid days which helped
In all honesty nothing I or anyone else says will help your anxiety however know that so many of us have been there before you and are now survivors
We are a with you in spirit and available on the forum (also if anyone wants to private message me that’s fine too)
One of the other important things I found was keep talking (I did most of mine on here as I didn’t want to worry family and friends) a problem shared and all that
So from here I will say I am sending you all love and hugs ?
And will pop back to see if I can help in anyway
Sue ? xx
Thank you Helena. Anna and sue thank you so much for your comments. I have read them but will come back later and read again and take it in. Keep telling myself I am going to be fine and that I have to be fine as I have my daughters wedding to plan. I am finding it difficult at the moment to talk about how I feel and that for sure is not good because normally I can talk for England. I think this is because everybody say “you will be fine” and yes I have even said it myself when my daughter was poorly. Those words!!! I keep telling myself to stop looking ahead and the what ifs and have even told newly diagnosed just that and here I am. Huh I need a slap!! I think as so many have said it’s the waiting game but these physicians have to do what they have to do. Oh I am rambling again but it does help. I am now ready, dressed, make up on and off for some retail therapy and time out with my daughter. Thank you so much ladies and will be back later hopefully feeling a tad better. Jem these ladies are amazing don’t you think. And it is doable. Just one thing and you know what it’s not so much the chemo but vanity and possible hair loss and looking dreadful. Sue, Anna how did you cope with that, that’s if you had hair loss of course. Thank you again. X.
Thank you ladies for the chemo info. To say that’s the bit I dread most would be an understatement. it’s not the hair loss cos I know I can totally rock the bald look 
but more just feeling unwell cos I don’t cope with illness. Happily I’m generally hardly ever unwell. Ive not been told anything about it yet just that I’ll need it so I have no idea when and what. I’ve read up a bit and saw something about having a port or something left in place for the whole duration of treatment. My initial, and still, reaction, is no, I’m not having that.
To be honest I’m still very angry that complete balls ups leading to massively delayed diagnosis has meant I’m having to have treatment I may not have required otherwise. I think I’m still rebelling against it and giving **bleep** to anyone treating me. Sick of sympathetic voices giving me platitudes about how it shouldn’t have happened etc. Makes me want to slap someone.
Hi ladies I have popped over with Sue from the October chemo thread. I had surgery in August then the onco test which came back at 31 so just in the high risk category so I started chemo in October. I didn’t think I would need chemo so when they told me I must admit I cried but as Sue has said while it’s not a barrel of laughs it’s totally doable and any side effects are manageable with various medications. Also it’s worth saying there are good days and weeks within each cycle when you can still manage a scaled back version of your social life. I felt ok the week before each chemo so planned most of my activities in this week. I was lucky as well in that I didn’t feel or be sick at all through all 6 cycles which shows how good the anti sickness meds are. If one doesn’t work for you tell them and they will try another. I know it’s a lot to get your head around so if you have any questions pop over to our thread or send me a message and we will do our best to help and advise you. Xx
Just hopefully to make you laugh as well, when I was diagnosed I called my tumour Mr Blobby, from Noels House Party I think it was, and I told people that Mr Blobby would soon be out of my body and the radiotherapy etc was the belts and braces of the treatment just in case he decided to leave any spots when he left. It caused a lot of hilarity and have to say some “sad” TV memories of those days
I had my first post op mammogram, 18 months since that day, and got the all clear.
Helena xx
Hello again Sally and Gill,
You’re allowed to feel furious, Sally. I found in my boxing-based exercise classes that I was punching with a fierceness that even frightened me when I was approaching chemo (and often during it too).
In terms of hair loss, I was very lucky in that my husband paid for me to have a handmade human hair wig which was matched to my colour and style before I lost my hair. It was such a generous gift that has allowed me to function at work and socially without missing a beat. It is just like my actual hair in terms of texture, style, tone etc and although I am open about it being pretend hair, so many people thought I had been really fortunate with the cold cap, including my oncologist. I did find it emotional when my hair started coming out, even though I had the wig on standby and I cried when a hairdresser friend finally helped me get rid of the remaining hair, but I adapted and much more quickly than I would have anticipated. The Look Good, Feel Better course was great for giving me ideas/tips for when my eyelashes and eyebrows started to go too, although they never vanished completely.
Sally, the portacath sounds really scary and alien, I know, but I had one fitted after my first two cycles and again, it turned out to be a) nowhere near as bad as I feared in terms of fitting and b) actually darn useful because it saved a wuss like me who hates needles from being cannulated for the rest of my treatment. It sits under the skin and honestly, I never knew it was there. It is your choice though and you don’t need to make any decisions now. As Helena says, take it at your own pace. There are other options too which different people here will be able to tell you more about like Hickman and PICC lines, but there’s lots of time to explore this more when you’re ready.
Another thing I did was talk to a woman before I started chemo via the Someone Like Me service which was reassuring, practical and supportive. I found my fellow starters on the November chemo thread to be a brilliant support team who got it whenever I had a wobble. It is still the thread I visit most often on the forum. When you know your start dates, do head over to the chemo treatment section. As well as your ‘own’ thread with people starting at the same time, you will get the benefit of those who have gone before you. I spent some time with the fabulous women on the October thread before and during chemo and they were always able to respond to questions, boost me when low/worried/fed up and help me see light at the end of the chemo tunnel.
Keep asking anything that occurs to you and feel free to ‘think aloud’ about chemo. We’re listening. xx
Hi ladies
I had a Hickman line and yes was uncomfortable when it was fitted but how great not to be a pin cushion some people also have a picc line
I took control of the hair loss me and my sister braved the shave
My sister had long hair so donated it to little princesses and between us we raised £1750 for
Macmillan by taking control I felt totally empowered
Don’t forget you can cold cap too … it wasn’t for me but lots of ladies do
Last Monday I met up with runnerbean and we both have the same haircut though runnerbean has longer hair (she was slightly ahead of me on chemo)
And now I have lived through being bald and it’s growing back I feel I will have short hair for evermore as it’s so easy to wash and go
You have every right to be angry and I went through a variety of what ifs
Eg what if I wasn’t over weight
What if I never drink alcohol
What if I never used to smoke
It is easy to try and blame yourself but you know what it’s just ? bad luck and these thoughts didn’t do me any good
I put a post on fb and it’s said
Look for something positive in every day even if some days you have to look a little harder
I am facebook out so to speak and if anyone wants to find me and read some of my treatment related posts just private message and I will tell you my full name to find me xxx. There are also bald head pics and wig pics xx
Hi ladies. I’m also from the October thread. I had chemo first 6xFEC-T mastectomy and radiotherapy. I was terrified when I heard I was having chemo. It was no where near as bad as I thought it would be. Everyone is different in what side effects they get and how they manage them. For me I just made sure I rested when I felt tired, took the drugs I was given, and didn’t do too much. Take one day at a time. I finished chemo on 19th Jan 2018, surgery was 7th Feb and I finished radiotherapy on 24th April. You’ve got this ladies. You can do it. I did it and so I’ve so many others. You’ll find great support in each other and from ladies who have already gone through it. Feel free to post any questions on the Oct thread or pm me and if I can help I will.
X
Thank you everyone for the helpful posts, I don’t now get results until next Friday, but feel like your messages, concerns and hints and tips are answering the worry beads in my head before I even have chance to have them given I’m a little behind most of you! You all sound amazing how you are remaining positive and upbeat despite the inevitable down days. thank you all for the support xx
Thank you all you lovely ladies for popping over to this April surgery section to share your stories - you have made me cry but not because I’m upset but because you are giving me courage that I can and will do this chemo rubbish one day at a time. I have achieved so much so far to get this horrid thing gone, facing each step in small tiny footsteps and thank you as I will do it again to keep ‘it’ gone. I had focussed on my Oncotype result being low - it was 5 but due to multiple small tumours completely irrelevant now.
My next small step is to start to write a list of questions for the oncologist for when I get appointment. When I was facing mastectomy I had a list and then ordered them of everything that terrified me- some big ones for me I was able to take control of whilst others could do nothing about- need to do the same I think.
Sally -we will get through this and be the ones posting to support others, for now the courage, holding of hands of these wonderful ladies will help us.
Gill- did you do the lunch with family? The waiting game is awful and the horrid anxiety, thinking of you
Xx
I had a PICC line fitted before my first chemo. It only takes about 15 minutes to fit and I honestly didn’t feel a thing when they put it in but I did keep my eyes closed the whole time! It makes things so much easier and within a couple of days I mainly forgot it was there. It does need to be flushed once a week by the district nurse or in my case I went to the local heath centre to get it done and again you don’t feel them doing it just get an odd taste in your mouth for a few seconds. The various types of lines you can get are also used to take blood when required so just makes life that bit easier while having treatment x
Well here I am bringing up the rear. In for the dmx and recon tomorrow. You’re all the front line. Feeling OK at the moment, bags checked and double checked. Dogs in kennels, I cried when they left, as my emotions seem to be very close to the surface.
I know I’m going to be terrified tomorrow and walking into that hospital will be the hardest steps I’ve had to take yet, but I’ve put on those big girl pants you sent me about 4 months ago, Helena and there going to stay on all week. Ooh! What a thought. I will probably take them off for a wash
Cancer has given me another gift today, though. I’ve talked briefly to a lady at the gym and she found out I’d frozen my membership until I am allowed to start again. She asked me why (I hadn’t told her - I’d tried to keep the gym a cancer free zone), so I told her. Today at my last class, she brought me a lovely bag full of things to pamper myself when I’m recovering. We’ve swopped numbers and she is coming to visit when I am home and hgas insisted she wants to do something to help when she does come. The bag of goodies isn’t the gift I received though. The gift is that of another new friend and getting to know someone and build a new relationship. Yeh!!
Will let you know how I get on in a couple of days. xxx
FairyDust we are all with you and sending big hugs for tonight and especially tomorrow. Big girl pants certainly help! It is a big step but one you can do with everyone here for you.
Your new friend sounds amazing?, what an lovely thing she did. My friends have all been amazing and so important. Each one has been there in little and big ways, often reducing me to tears.
A quick quote from Winnie the Pooh that has helped me each step
you are braver than you believe, stronger thank you seem, smarter than you think and loved more than you know’
Take care xx
Positive vibes Fairy Dust. Not long now and you will be through the other side.
Hang in there, you will soon be on the road to recovery.
Hugs xx
Morning Fairydust and all.
Hopefully you’ve gone down early so you’ve not had too much early morning thinking time. see you on the other side when you’re done and dusted and relieved it’s over.
Sally
Hi fairy dust. Will be thinking of you tomorrow. We’ll all be there supporting you in the pockets of your big girl pants from Helena. We’ve all had those pants they work wonders.
I had a single mx no recon in Feb. Probably the easiest part of treatment for me. The nurses will be fantastic with you and put you at ease. You’ll be back home before you know it wondering what all the fuss was about.
Take care x
Fairy Dust
Big gentle hugs to you for today, look forward to hearing from you soon xxx
Thinking of you today Fairy Dust … xhugx