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Newbie looking for some help!

8 REPLIES 8
gemmy83
Member

Re: Newbie looking for some help!

Hi Ash, 

 

Just wondering how you are finding the chemo. I was diagnosed on Thursday and will be having the same chemo as yourself. Also have you tried the cool cap as this is something I am hoping to use as well. 

 

Did you attend the event in Bristol? Also are you based in Bristol, i work near the centre and if so, it would be fab to meet and discuss things with someone who is going through it, if your up for that? 

 

Sorry for all all the questions, still trying to get my head around it all. 

 

Gemma

Kip
Community Champion
Community Champion

Re: Newbie looking for some help!

Glad to help, if only to be able to pass on tips for getting through chemo!   Once you get started you will be able to deal with it so much better, just take it slowly one day at a time til then.   I had my long hair cut to a pixie cut before chemo (didn't cold cap though) and it was less stressful when it did come out.   Hopefully that won't happen to you but if it does, you'll deal with that too, we all have and actually a great many of us found that once it was gone, you just move on to the next thing..and it comes back..in my case thicker and curly and grey!! 

Once you start chemo.. remember to never be afraid to ask questions, right them down if needs be, I took a notebook with me all the time.   Never be afraid to ring the chemo  hotline if you are worried, they are great in dealing with things quickly and can change medications for you if you need them to.   Drink lots of water the day before chemo, the day of and the date after, helps flush it through.   Take your temperature regularly and just go with how you feel.. hopefully you will be like a lot of us and probably have a few days of feeling a bit off but you bounce back again and can still get out and do things and enjoy being with the family.   Don't push yourself though, let others help you whenever they can, it helps you and I found it helped them feel useful too. 

Take care

Good luck for next week.

Kip

xx

Ashleen86
Member

Re: Newbie looking for some help!

Thank you all so much for your kind words and advice 🙂  it’s so lovely to see how supportive everyone is on this forum! 

 

I feel a whole lot better too knowing my treatment plan mirrors others too, as I kept thinking for ages that the route I was going down was completely unnecessary but it’s good to know the consultants really do know what they’re talking about and that this is all preventive to ensure I have a long happy life ahead of me. 

 

I’ve been reading the chemo threads and they’re really useful so will definitely post on there once my chemo starts. I’ve just received my timetable and my first cycle is next Thursday! Ahhhhhh!!! I think I will cut my hair shorter before then, just to ease the hair loss if the cold cap doesn’t work. 

 

I’m glad to hear you can live a normal life around chemo too. That’s the one thing I want from this - to be able to still get out and about and spend time with my friends and family, I might just have to slow down a bit and take it easy as I’m usually 100mph in the fast lane at work and at weekends 😉 

 

Thanks again for taking the time to reply, really does mean a lot. Will keep you posted on how things go after cycle 1 next week. 

 

Ash xx

Kip
Community Champion
Community Champion

Re: Newbie looking for some help!

Hi Ash,

 

Welcome to the forum.  Sorry you have found yourself having to have chemo, its such a shock hey.  I was diagnosed in April 2018 and initially was told it was Grade 1 and the lymph nodes looked clear.  By MRI we decided to do a Mastectomy and would have radiotherapy and Tamoxifen for 10 years as oestrogen +.  After surgery they discovered it in my lymph nodes and so chemo came along.  I was, like you, terrified of what was to come.  But as others on here have said, the thought was way worse than the deed.   Yes, some days I was tired, a little nauseous and fed up.  But for the most part I was able to go out, I continued working (from home) throughout and managed just fine.   The build up to the first chemo is a nightmare as you don't know what to expect but just remember to ask lots of questions, write anything down beforehand.  You will find the chemo nurses are great and explain everything.  I didn't cold cap, so did lose my hair, its was hard but 8 months after finished chemo I have a thick head of wavy/curly hair and have had 2 haircuts already.   When you have a start date find the corresponding "Going through chemo thread" for that month and you will meet lots of others all starting with you and can help each other through.   We'll all drop in an offer any tips we have gleaned along the way.

Keep you chin up.. we'll  help you along..

Kip

xx

Joemic
Member

Re: Newbie looking for some help!

Hi Ash

 

Your diagnosis and subsequent regime practically mirrors my own - 9mm IDC, grade 3 node negative, I was under the illusion that I would have surgery and radio but alas the results of the onco test was 40 so I'm undergoing chemo at the moment. It is very difficult and scary getting your head around the initial prognosis only to be floored when the results of the onco test return and chemo is added to your treatment plan.

 

The chemo is no where near as bad as I thought it would be in fact I have had very minimal side effects just a bit of tiredness at times. I live my life go out with my kids all over, although I do avoid crowded areas and public transport when I am more at risk of infection around day 7 - 14, I have had 2 cycles so far and due my 3rd this friday and have not had any infections, so please don't assume you will be poorly you might just well be like me and sail through (although I can only talk for 2 cycles) and I'm a fair bit older than you. I didn't use cold cap but I haven't lost all my hair either - it's well thinned out but I've still got a covering so you never know how you will react - I have heard that you must make sure the cold cap is fitted securely for it to have the best chance of working, although please note that it isn't 100% guaranteed, lots of ladies have used it successfully.

 

Have a read through the threads and ask questions whenever you need, people on here will support you through your journey.

 

Joemic x 

PeggyCat
Community Champion

Re: Newbie looking for some help!

Hi Ash, 

 

So sorry you have had to join the forum but you've come to a great place for support and to discover that what you are going through is pretty normal.

 

I was like you at the start and thought it would just be surgery and rads but after discovering I had one node involved and was still "young" according to my medical team (I was 51 at the time) chemo was suggested to me too. It's terrifying at first but it really wasn't such a dreadful experience. Chemo was in no way as horrific as I imagined it would be. I was never sick, just tired at certain points and I had the odd irritating issue like a brief dose of folliculitis on my back when my hair started to fall out (honestly, I never realised my back was hairy Smiley Happy ) but that was cleared up in a few days with antibiotics. The drugs these days to help counteract the side effects are very effective with dealing with the worst of it all.

 

Losing your hair is devastating to some but it wasn't the hardest part for me. I realise now how much better I look with shorter hair and I'm weirdly grateful to have been forced into trying something new.

 

I'm just coming up to my four year anniversary of diagnosis. When I look back at where I was this time in 2015 I would never of imagined then how happy and healthy I'd feel now. The truth is I appreciate my life so much more and find something to enjoy every day. 

 

You will get through this. You are young and have so much life ahead of you that this is just a blip on your journey. And just because you are having treatment doesn't mean you can't enjoy life. I went to a wedding, the cinema, theatre and out for meals regularly during treatment. Maybe there will be days when you need to slow down but life does not have to stop.

 

I hope this is helpful and that you stick around on this forum because there are so many lovely people here who will always be around to support you.

 

Let us know how you get on.

 

Ruth

ann-m
Community Champion

Re: Newbie looking for some help!

Hi Ash,

A warm welcome to the forum, even though it's not where you'd want to be.

Getting diagnosed is a huge shock, but you're not alone with this & between us on the forum we've been through everything that bc can throw at us. It is a huge amount to get your head around. 

If you haven't already, do look at 'chemotherapy' in the 'going through treatment' part of the forum, also there are the monthly chemo threads where you will be able to chat & get support from others where you are now & further down the line.

Sending hugs

ann x

monicanatura
Member

Re: Newbie looking for some help!

Hi Ashleen 

Welcome to the forum, I know this is the one place you really don’t want be in, however the forum is a fantastic resource, and you will find many women like you on here. 

I was diagnosed last May 18, I had IDC grade 2, I had chemo, surgery and radiotherapy. 

When I started chemo, like you I had long thick hair, I did a lot of soul searching, had a heart to heart with my hubby, and decided to cut my hair short. I went from a bob, to a pixie, to bald, when the chemo kicked in. 

It may not happen to you, there are many women on here, who have had chemo and their hair did not fall out. 

My last active treatment , Radiotherapy was in February, by the time I finished Radio, my hair started to grow back. 

Now my hair is thicker then before, with curls and waves, I took care of myself throughout treatments, and I can very confidently say, I’m all clear. 

Take care of you, do everything you need to stay healthy. You are young and one day you will be in my place, giving someone else advice. 

 

Ashleen86
Member

Newbie looking for some help!

Hi Everyone

 

I'm Ashleen, I'm 32 years old and I live in Southampton with my hubby and our little black pug puppy called Benji. 

 

I was diagnosed with Grade 3 Invasive Ductal Breast Cancer in February after finding a lump in my breast. It's been a whirlwind few months. Firstly they thought it was a cyst, drained it then it came back. Then they did a biopsy to then find out it was in fact cancer. Not the kind of news I was expecting to hear a few weeks before my wedding! I then had surgery in April to remove the tumour (lumpectomy/local wide incision) which went really well. They confirmed it was Stage 1A and that I had caught it really early. No lymph node clearance was required either as it thankfully hadn't spread to my lymph nodes. They also got a really good clear margin of tissue around the tumour, so as far as they were concerned, the cancer was gone! Hoorah - the wedding day went ahead, I was feeling well following surgery and the day was perfect. We had to cancel our honeymoon to America as I was unable to fly due to the risk of clotting etc, so we took the Eurostar to Paris for a few nights instead and it was just as amazing!

 

Fast forward to today and I've just finished having IVF/fertility treatment to remove my eggs/create embryos with my husband Dan and I'm about to start FEC-T chemo next week. Hmm you're probably wondering why I need all this considering everything was going so well before?! But it turns out the surgeon sent my tumour off to America for an oncotype DX breast recurrence score test and yep, the score came back high (40+) meaning my cancer is highly likely to come back. Maybe not today, but certainly in the future. That's the blow I'm struggling to get my head around right now. 

 

So the plan for me right now is fertility treatment, which I've just completed. Then 6 cycles of FEC-T chemotherapy, followed by 3 weeks of radiotherapy and then potentially hormone drugs for the next 10 years - all in the aid of preventing my cancer from coming back. I find it hard to believe I really need all this, given that the surgery went so well. I thought a lumpectomy goes hand in hand with radiotherapy and that would be it. My receptor tests also came back marginally positive for oestrogen, meaning that the hormone therapy may or may not be effective. 

 

It's a lot to get my head around at the moment. The fertility side of things was bad enough having to inject myself every morning for 12 days, dealing with all the hormones, nausea and everything else. But now that's over, I have to start chemo next week and I have no idea what I'm walking into. I'm usually quite a positive/confident person, I love life, my friends and having fun, but I feel really tearful and low at the moment and everyone around me is trying their best to make me feel better but all I can see is doom and gloom ahead and nothing else. 

 

I'd really appreciate some tips on how to deal with everything next. Particularly the FEC-T chemo part. I'm well aware of all the side affects and to be completely honest, I'm coming to terms with the fact my hair is likely to fall out along with my lashes and brows, but it's the feeling of not being my fun loving self or able to do things with my family and friends at weekends that scares me the most. I'm going to try the cold cap just to see whether it works. My hair is long, thick and blonde and it may or may not work, but I need to try. I was wondering whether cutting my hair shorter (i.e. a long bob) would help with the cap, as my hair is so thick and heavy that I'm worried the cap won't be able to work effectively on my scalp if I have so much thick hair?!

 

Sorry for the essay.... I'm planning to attend the Younger Women Together event in Bristol in July so if anyone else is going, it would be great to meet beforehand. I just can't quite comprehend this is happening to me, so to know I'm not alone would be a massive help in getting me through the next 6 months 🙂

 

Ash xx