Starting Chemo soon and I'm scared

[riversidedawn]

Rafi my kids are 9 and 12 and we sat them down and told them the week before my mastectomy. The 12 year old asked a few questions but the 9 year old took it in her stride. They have to know why you're in hospital and what chemotherapy is so they know you are getting better but also understand when you're tired or upset. School have also been brilliant. All their teachers know, again they can support the kids if we're having a bad week.

I've been good capping, and although my hair is thin if you didn't know me you wouldn't guess I've had 10 doses of Chemo since October. Its worth asking about it.

[Pod-1]

Hi Tracey 

I was diagnosed in Sept 2013.  I had 6 sessions of chemo before surgery (3 Fec & 3 Taxadocel).  I wasn't too bad on the FEC but suffered a bit from constipation and haemorrhoids.But I think that was a result of the steroids (Ondanestron especially).

The hospital can give you some stuff to some stuff to help combat that. 

My hair fell out approx 3 weeks after my first chemo.  Altho I wasn't looking forward to the prospect of losing my hair, I excited in a weird sort of way in wearing different wigs as I'd always fancied the thought of a new hair colour but was never brave enough to go thru with it!  I'm not trying to belittle the issue cos it is a difficult time and hair is a very personal thing and it's one thing that helps define you.  Seeing yourself for the first time without hair is a shock but you sort of get used to it.  

However - please don't worry too much.  It will grow back in time and mine came back curly too. ...,.also something I wanted (even though I had to go thru chemo to get it !). Anyway - I got a pretty good wig on the NHS.  They are quite good but make sure cut/trimmed/style to suit. 

Anyway- I digress. Sorry. 

The second lot of chemo (the Taxadocel) was a different ball game.  I was told to expect aches and pains and boy did it hit hard.  Felt like my muscles were spasming.  I was confined to the sofa/my bed for a good week or so after treatment.  One piece of good advice I was given by the Breast Care nurse was to ask for extended steroids but taper them off.  This seemed to work and after I had my 2nd lot of Tax the aches and pains had massively reduced and was manageable. 

I also lost my taste buds whilst on treatment - so everything tasted like cardboard! But they did come back. 

Taking steroids was a new thing to me & they kept me awake massively - so be prepared for that as well. 

Sorry - not trying to tell you any horror stories - Just trying to tell it like it is,  so you know what to expect.  

The hospital were great with me & did everything they could to help.  I have a bit of a needle phobia - which isn't great when faced with IV chemo! ! But the complimentary therapies team helped me thru that& helped me overcome my phobia. I still hate needles - but I'm more accustomed to them ! 

Tap into the Breast Care nurses wherever and whenever possible.  They are there to help & they do. 

Good luck with your treatment.  X

[Janet_BCC]

Hi Tracy68,

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[kay73]

Hi everyone,
Just wanted to pop in and say there is always hope and a light at the end of that long tunnel !
I was diagnosed in september 2013, finished my six rounds of horrible chemo with two overnight stops and one week in hospital with nuetropenia, had two ops as i had lymph node involvement and 4.5 weeks of radiotherapy that finised in september. My surgeon declared me ok a week before christmas and my next visit for a check up is june ! Yes it was horrible, i was sick and had all of the yucky side effects but chemo is the worst bit and it does honestly get better 🙂 my chemo was worth it my lump went from 4.5cm to 1.0 cm so it did its job ! I had beautiful bottom length hair before i started, was only bald for six months and i now have a thick head of different colour curly hair:) Im 41 now, i wont be able to have children l, im on tamoxifen for the next 10 years but im here and alive and starting to feel well again . I followed everything the hospital said, had a great diet, watched lots of funny films and tried to stay postiive through it, it feels surreal already and time has flown.
Hang in there ladies, have a count down for each part of your journey, celebrate at the end of each bit, be positive, dont be too hard on yourselves you can get through it 🙂
Best of luck and lovely wishes to you all
Kay x

[Tracy68]

Hi Sheila How do you PM?

[Amanda10]

Hi everyone
I'm new to this thread but popped on to wish you all well with chemo. I'm half way through treatment at the moment having 4 fec and 4 t. Mrsrichy I was also dx with tn in October 14 and due to have my 3rd docetaxol on 13th March , i will have surgery after followed by rads, my treatment is at North staffs hospital in Stoke. xx

[Hazelr]

Hi the red face is from the steroids I presume you are taking and goes away when you stop taking them, I have them for about 3days and they make me really hungry as well. The best thing for constipation I have found is natural liquorice called panda which is very gentle on the tummy and I have one or two bars just for a day or two and it helps. My chemo now gives me diarrhoea so I have the opposite problem. My blood count has been great so far so don't worry it may be fine all the way through. It took me a week to get over feeling rubbish, was very emotional as well as being physically low so now I just give in to it and do nothing if I don't feel like it, rest up and you will wake up one day and feel human again and off you go until the next time. Your body will tell you what you can and can't do and also eat whatever you fancy as this changes as you go through chemo cycles. Try and write down your symptoms as your oncologist will be able to give you different drugs to help with the side effects as you go on. Hope this helps xx

[Mrsrichy]

Hi Tracy I'm also from coventry, I was diagnosed August 2014 with stage 2 grade 3 triple negative breast cancer. I'm 3/4 of the way through chemo 2 to go! I take it you are attending university hospital, walsgrave. They are fantastic. I have 4 fec and 2 docetaxol so far and can say I have had few side effects, but everyone's different. On the fec I felt a bit nauseous but was never sick, and body ached for a few days and I got tired more, but that was all in the first week after that I was fine. You need to drink plenty of water to keep hydrated. I have got the hospital on Wednesday to just to see oncologist mine is *************( he is great) who is yours? Then I will have my chemo on Friday 13th. I'm sure you will be fine on Wednesday the nurses are all really nice and will take good care of you. If you want you can pm me for a chat. Good luck and take care. Sheila x

[newey47]

Hi Janey, glad you got your first bit out of the way.  Blimey constipated already, dont take long does it - I am sure it is a worry about infection too - I am still reading up on everything - perhaps a bit too much. Just keep an eye on yourself, temp etc - I cannot comment on anything else cos I dont know about it yet.  

My surgery is now 4 days away and I am really nervous I can tell you.  mostly worrying about the pain afterwards - which might not even be too bad who knows.  Got two wigs yesterday in readiness which are great, one brunette bob and one short blond which I am now as I had it all cut off last week.  A little premature I know cos chemo wont be for weeks yet, but thought it would be easier after Op too to take care of. OH will have a choice of a baldie wifee, brunettem blonde/grey or one of the other dressing up wigs i have already lol.

Take care and keep posting, I am listening and thinking of you.

Try to have a good weekend, I am busy with B and B guests, which will stop me from dwelling on it.

love and hugs to you  - Val xxxxx

[Tracy68]

Hi My name is Tracy and i'm having my first FEC chemo session next Wednesday 11th, I'm on a rollercoaster of emotions!  I'm from Coventry, is anyone else in a similar position to me?  Can anyone help me to prepare for my first session?  Am I worrying too much? Many thanx

[Herewego]

Hi Janey, unfortunately red face goes with EC 😞
On my first cycle I took senakot for constipation, actually overdosed on it to get things moving and for this cycle got gp to prescribe me something else - it has orange flavour and it tad better than lactalose.
Hope you keep well x

[janeyf4]

Hi Hazelr, I'm having 4 ec and 4 tax before I have my surgery.  I was ok having the chemo but as it was going in I got a headache and sinus pain which lasted the rest of the day.  My face has also been really flushed and red today, is this normal do you know? I am also a bit constipated now so I took lactulose and was immediately sick after it, it was just the taste of it made me feel really ill so I will have to find an alternative for the constipation. Apart from that I'm not feeling too bad, just scared about when my bloods drop in case I get an infection.  Janey xxxx

[Hazelr]

Hope chemo was ok for you and you don't feel too bad. What is the name of your chemo drug? Let me know if you have any weird side effects, I may be able to help you with dealing with them. Rest up xx

[janeyf4]

Thank you Rafi for your support. I'm feeling quite calm about it now. Thanks for the tip about the sweets I will get some on the way to the hospital.  Hugs, Janey xxx

[Rafi]

Janey

Will be with you tomorrow with lots of positive thoughts for you. Soemone suggested taking gum or a sucky sweets with you. No idea if that is helpful but I thought I'd pass it on.

Keep positive and let the battle commence. You can do it. Lots of love xxxxxxx

[janeyf4]

Hi Val, thank you for remembering. Dreading tomorrow but at least I will have started the treatment at last. When is your surgery, is it the 10th? If so not long for you either.  Love and Hugs to you. Janey xxx

[newey47]

Janey good luck for tomorrow with you chemo - I will be thinking about you

Val xxxx

[Hazelr]

I bet you are worrying more about telling them than anything else, i hope you tell them soon so you can get that one more thing dealt with, I know it's hard but you need to not stress if you can help it. The lady's name is Tracey so that should let you know if you know her or not. please contact her, is your hair still there or not? I had a lovely day yesterday feeling so much better than last week. It takes longer to get over each chemo now but at least this week will be a good one. Hugs to you x

[Rafi]

Thank you. I think     I know her. I am a Groombridge lady so we are very close to each other. I agree. I can't remember a time when I just feel free of all this. Glad your wig looks great. I have heard great things about her.

I will tell my other 2 boys. Just not quite yet.

Hope you have a good day and thanks for the support. xx

[Hazelr]

Hi I live in Wadhurst and I got my amazing wig from a great lady in crowborough, I saw her at her house or she will come to you. My wig is synthetic but looks so amazing people who don't know think I hav been to the hairdressers, she fitted it and cut it for me. She also cut my hair off to about an inch as it was falling out in handfuls which was really distressing and I felt a weight had been lifted. If you want her name I can let you have it, not sure if I'm supposed to put it on general message. My son was very quiet when I told him and he went straight on to the Internet to look up information, he sent me a link to a lady who was having the same chemo drugs as me and had written a diary which was a great help as I had an idea of what to expect. They will look up all sorts of scary things so I was very matter of fact and tried to be as positive as possible, kids are all so different as we all are. A friend asked me today if I ever forget I have cancer and I thought I cant remember what it is like to not think about it. I have another so who is 22 and the two of them are talking more now than they have ever done so I think telling all of your boys is better so they can help each other and talk together. By the way my wig was £130 so not loads of money. Yes you are right once in the chemo cycles start you get on with it, we have no choice so each one is one more down until the end. Lots of love to you, let me know about wig lady. Xx

[June_BCC]

Hi Rafi

If a user PM's you it will show in the top right hand corner of the forums where the little message envelope is. It will show how many messages you have.

Best wishes

June

[Rach46]

My hair is synthetic but looks so incredibly real, my own hair never looked as good!! It's hard to imagine not thinking about this 100% of the time but it does ease off. I found that once the chemo started I got into a pattern of the cycle and had days and sometimes a whole week where I felt more 'normal' and did 'normal' things like socialise! I'm less frightened now as almost at the end of the chemo bit but I have started to worry a little more about the long term. I think this is a natural response in processing the enormity of what's happened as it's felt like a whirlwind so far. It's hard at times to remember life before all this....don't know if that's the same for you? There's lots of invaluable advice and info regarding coping with chemo on this forum but it's so different for everyone it may not be helpful to give you a list of things that helped me but if you want to ask anything along your journey please don't hesitate. Rachel xxx

[Rafi]

Thank you June.

Also how do I know when someone has replied to me? I dipped in and out on Saturday of variuos threads and not sure I remember all the ones I replied to. I am sure I am being stupid!

[Rafi]

I'm in Kent. Haven't seen the oncologist yet. Will ask re vouchers when I do. Thank you for that.Is your wig human hair or synthetic?

Yes, my son crying whilst out walking with me on a rare Sunday afternoon alone ( rugby family) broke my heart.

My middle one is 12 and the worrier and my little one 9 who doesn't need to know yet. I'm going to go with my gut and definitely will tell them both but know it's not necessarily today. Do you ever get a moment when you stop thinking about all of this? xxx

[Rach46]

Not sure where you are Rafi but in my area I got contact details and a voucher for an NHS wig as soon as I saw the oncologist (after my surgery). The organisation were absolutely fantastic and it's an extremely good quality wig. In fact everyone who knows me can't believe its a wig. I've bought a couple over the Internet since....... HUGE mistake, they don't fit properly and nowhere near the quality of my NHS wig which was individually cut and styled to my face by the supplier. I'm sorry you had the difficult task of telling your son, my 19yr old son was very tearful when I told him, so difficult to see your adult son in tears. He's adjusted now and coping really well with the journey as I'm sure your son will too in his own time. You know your children best and know when and how much information to give. You're doing great! Hugs xxx

[Rafi]

Thank you so much for your kind words.

I like your angle of attack- getting past the word. You are right. I hope I can take a leaf out of your book. Been for a walk in the sunshine today and need to book my first oncology appointmet but have been given a coupole of days to consider whether I want to go for auxilliary clearance too prior to chemo..........it's so draining isn't it......

Hugs and love back xxxx

[June_BCC]

Hello Rafi

You could use our Private Message (PM) system to pass information onto other users without it showing on the forums.

To use the PM system you can do it two ways.   Firstly by clicking on the messages tab at the top right of this page (near the sign out button) this takes you to your private message area where you can search for the user you are looking for - using their username.  Alternatively, if you click on the icon of the user you want to send a private message to (within a thread)  this will take you into their profile and then there's a link from there for you to send a private message.

Best Wishes

June, moderator

[Rafi]

hi there
Where do I message you my email? Sorry to be thick. I suspect I will be a March starter so that will be great support. xxx

[Rafi]

Hi there
I had the left reconstructed using my tummy Nov 13. That was a 10.5 hour op but the result is phenomenal. The DCIS was contained so I needed no further treatment.
The right surgery was on 13th Feb. I had no option this time but an implant. I was home less than 24 hours after surgery ( with drains) and yes I was uncomfortable but did it all on paracetamol and ibuprofen. 2 weeks on and I'm up and about and whilst a little sore and swollen you'd never know I'd had it done.
Ask me any question you like and I will try to help. Don't look at the Internet! Some images are scary. My boobs aren't! You'll grow to love your new one I promise. Sending love xxx

[Rafi]

Thanks Janey. Good luck with the first session. I have done the surgery but not the chemo. I expect I will be a couple of weeks behind you. We can help each other. Big hug. xxxx

[Rafi]

HI all

Thank you so much for responding. I have not yet sussed out what I am doing on these forums and I hadn't realised anyone has repiled.

I feel very tearful reading all your lovely words of encouragment and I know you really understand how I feel

I am a very lucky lady who has the most incerdible network of friends and they have already started a rota for my mates to be on call should I feel alone or sick. They also want monthly nights out but no one can attend unless they wear a wig!

I am relieved to hear that family life can remian stable. That's what I need. My big boy took the news terribly yeterday ( I was upbeat and positive) but I am so close to him. He wasn't scared of the baldness but saddened that I have to do this. I decided not to tell the others just yet.

I still haven't slept and once I do I wake up in a panic worrying aobut the next few months. I suppose once I'm on the chemo train it may become easier? Any help for wig suppliers too? There are so many to chose from.

Thanks for replying. Means everything xxxxx

[Rach46]

Hi Rafi, my heart goes out to you as this experience is so scary and all thought consuming. I was diagnosed with DCIS last Sep. I had breast conserving surgery and I have just completed my 5th cycle of FEC. I have 1 more to go then radiotherapy and hormone treatment for 5 yrs. I have a husband and 2 children. Like you I considered myself as a very positive person but was terrified about how my kids would deal with this. My poor daughter's 18th birthday was the day before my surgery. Everyone's experience is different and every family is different but I thought sharing some of what we did may help or be of some comfort? I was very open with my children about all aspects of treatment, I offered the literature I'd been given if they wanted to read it (rather than access dubious information on the net!). We talked about the hair loss before it happened, joked about wigs together and tried to inject a lot of humour into this metamorphosis. The most important thing was getting past the word 'chemo' - seeing it for what it is, just a description of being treated with certain drugs. The emphasis was on the importance of these drugs working and naturally they would need to be harsh and therefore cause some nasty effects. Yes, I've felt nauseous, been tired and lost my hair but generally life at home has remained pretty stable and the kids are still caught up in their in their own stuff. This is a long journey as you have already experienced but you and your family WILL get through the chemo aspect in the same way you've clearly dealt with everything up to now. Hugs and lots of love to you xx

[JETS]

hi Raffi x there's lots of us scared x we have a march starters facebook too if u want to join just message me ur email and I'll send u the link x ( ditto to Janey )
Hazelr - I've had bilateral mx no recon x don't worry about the op it will be fine xx just listen to ur body and make sure u don't do too much - but like on the chemo that you've described !

[Hazelr]

Hi I have had 4 chemos now, 3 fec and into docetaxel and pertuzumab and herceptin for 3. I had my first one of this 10 days ago and am feeling really tired still, but that is probably because I'm not sleeping with night sweats ever two hours. Depends on what drugs you are having? Chemo is doable but hard on you physically as well as mentally, I found I was very emotional after a few days of feeling awful and although very supportive husband and son to look attend it is the days of being alone which hit hard. I decided you have to give into the side effects and know that in a few days you will feel better and feel human again. Let me know what drugs you will be on and if the same I can see you through thneside effects. I have to have mastectomy yet so you can help me with that as I am scared stiff of it. Your sons if they are like mine will look stuff up on Internet so may as well tell,them most of it anyway. Always remember you may not have the same as anyone else and hair loss may not happen to you, it has me but a wig and head gear has made that ok really. The other side effects will be manageable with help which you will need, theworstbthing is the extreme fatigue which accumulates with each chemo but there are times in the cycle when you can plan stuff to do and be normal for a week or so in between them. Hope this helps a bit but ask me whatever you like and I'll try and help. Have you had reconstruction at all? Best wishes to you xx

[janeyf4]

Hi Rafi, you will find lots of support on here from people going through the same thing, I was a complete wreck when diagnosed on 13th February and would not have got through the last few weeks without this forum.  I have got to have chemo and herceptin too. My cancer is also in my lymph nodes but ct scans show no spread elsewhere. I have four children and they have handled it quite well up to now but I still hate the thought of them seeing me go through chemo. I'm sure your children will be ok too, they seem to handle things better than us adults sometimes.

I am having my chemo first before surgery and start on 4th March. If you will be starting in March there is a 'starting chemo in march 2015' thread you can join to get more support.  You will not be going through this alone, we can do it together.  Hugs to you.  Janey xxx

[Rafi]

HI

I have just had a mestectomy to my right breast after DCIS diagnosis. I also had DCIS in the left breast Nov 13 so this has been a double blow.

My results came back this week and I cannot believe it but there was a 1cm tumour hiding in the centre. The sentinel node was diseased but the 2nd node wasn't.

I have been advised to have 6 doses of chemo and herceptin. I have 3 sons (16,12,9) and I am so worried about them. This will be a huge blow to them as the word 'chemo' is SO scary. I haven't yet told them the news.

Anyone out there that can hold my hand and give me the strength I need to get through this? I am 48 years old and a very positive character but am struggling to sleep or think straight.