Im 36 and had a wide local excision and sentinal node biopsy, but they found cells had spread to my sentinal nodes so had to have my lymph nodes removed as well.
I have a little boy who is a little terror but keeps me going during my darkest days.
Currently receiving FEC T Chemo at home (started 16/6) so feel really isoltated and would really appreciate someone to talk to to keep me going.
So far my 1st session wasnt too bad felt really sick in the evening and took about a week to feel human. Does anyone get really bad headaches. Is so what can you take???
i am 36 and a lot lost! I was diagnosed in march, have had wle and snb, margins and nodes both clear. I have had 3 fec chemo and about to have first of three taxotere chemo on thursday. I have 2 little boys aged 5 and 2, 2 year old can be a terror, 5 year old usually a little easier.I havent suffered headaches yet, can you not take paracetamol for them? Or does that not shift it? I am crap for about 10 days then feel pretty much back to normal for 10 days. I am terrified a lot of the time about the chemo not working or me getting a rceurrence. I am scared about the new chemo on tursday. I am scared that my oncologist hasn’t give me strong enough treatment. I have felt v sick with fec and foggy head. The hormonal side effects have knocked me for six too.
Would love to be your friend through this. Where are you in the country? I am in Manchester.
Weclome to the Breast Cancer Care discussion forums. As well as he support you receive from the other forum users you may be interested in some of the other support service BCC offer.
The first is Breast Cancer Care’s peer support service. The telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. They are ready to listen, offer skilled emotional support and share their experiences and understanding.
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Thanks for everyones replies it really helps. My little boy pulled my hair earlier and a big clump of hair came away in his hand so Im feeling realy sorry for myself. And no wine in the house to drown my sorrows,Im expecting it all to come out in the next days.
Vicki thanks for your post, Im just outside Cardiff. I used to work with a company in Wilmslow and used to love coming to Manchester. My little boy is turning 2 in August and he’s going through te terrible 2’s. How do you cope with 2 when your feeling so ill???
I took paracetamol for the headaches but they didnt really make much difference
I’m now a week after my 4th FEC and had the worst headache (and fever) ever. I took paracetamol, too. But like you said, it doesn’t make that much difference. It comes and goes, works for a few hours and then come back again. I finally feel a bit human now, althou still very tired.
My onc did say if it lasts for 2-3 days, he wouldn’t be worried about it. But it seems to have gone on too long this time, so I’ll mention it to him again at the next appt. We’ve discussed a reduced dose before but never put it into practice. Seems like it’s now going to be put back on the table.
I don’t have children, so that must have helped a little.
its partly hard dealing with my boys but wierdly partly positive at the same time. Quite a few times, i have heard or seen them do something dangerous whilst i have been sitting in my chemo hole, and it has jerked me out of it instantly and i have found energy to run up the stairs to grab my 2 year old before he jumps over the banister, or to stop my 5 year old trying to cut his own apple up with a knie. The mummy intincts just kick in! But i depend heavily on my mum and sisters for help when i feel ill. I am very fortunate that they live within 5 mins drive and my mum basically comes in and takes over my usual life for me to keep the show on the road. My husband has his own company and works very long hours so without my family it wuld be so much harder. I have also learnt that it is best all round if they stay away on the saturady night after my chemo as this gives both me and my husband chance of a good sleep and lie in. This weekend is looking dodgy though as everyone seems to be doing something.
I used the cold cap for my fist fec but it drove me mad waiting to see if my hair fell out everyday and when it got to the tugging out clumps stage, i got my friend to shave it off. To be honest, my hair has only upset me about 5 per cent on the scale of upset, its the thought of never being well again , going through this again or dying that upsets me ( probably no room for fussing about my hair in my head with all the other stuff going on!). I felt tons better after shaving it, though now i am nearly on fourth chemo i still have fair sprinkling of hair so suspect i was a little hasty shaving it off.
My 2year old will be 3 in august. He is physically hard work to deal with as he has relentless energy and climbs everything and runs extremely fast. I was potty training him when i was diagnosed so that went pear shaped but we are doing it again now and he is fantastic at weeing in public outside now, just keeps taking his pants down and weeing a huge arc of wee, is v embarrassing. He did it in front of the whole school and parents at the school summer bbq on friday, not good!
Both boys have been great since my diagnosis, basically they are happy as long their lives are on an even keel. We had a sticky moment a few days ago when my 5 year old blew a dandelion clock and wished that mummy would die. I don’t know where it came from with him, but i just burst into tears, he saw and then he burst into tears, then he was sobbing he didnt mean it and how could he get his wish back before a fairy made it come true, then i spent half an hour making up some rubbish about how fairies only make good wishes come true, not bad ones, then he said but what about bad fairies…in the end a bribe from the sweet cupbaord diverted him!
So are you having chemo at home? How does that happen?never heard of it, or have i got the wrong end of the stick? I think in any event being young and diagnosed is isolating in itself as there are not many of us about in each area.
Hi Happy
I’m 37, but not too lost at the moment. I was about to say, if you’re just outside Cardiff you’ll be having your treatment at Velindre, but if you’re having at home I guess that is private health care? I’m in Monmouth, so not too far away and had my treatment at Nevill Hall in Abergavenny and at Velindre in Whitchurch and couldn’t really have asked for better treatment.
I don’t know if it will help at all, but if you go to my profile there is a link to my blog which may give you an idea of what is to come. I don’t have children, but can imagine trying to look after them while not feeling fab is very tricky. But then again, I also think it is good to have someone else to worry about and try and keep your mind off all of this and feel normal once in a while.
My chemo is a home as my company has a health care insurance with Bupa. When i had my surgery I spent every other day back and fore to either the Heath, Llandough or Spire (Pentwyn) as my drain didnt work and kept getting blocked so instead I had to have the fluid drained with a syringe instead. After a 30 - 40 mile round trip i was exhausted and was looking forward to not having to drag my little boy and parents to yet another hospital but at the moment Im not seeing anyone and feeling really cut off.
I had my little boy in Neville Hall so I think ive been to most hospitals in South Wales.
I realise that losing my hair is probably the least of my worries but at the moment after having long hair for the last 30 years its seems like the biggest thing in the world. Hormones kicking too me thinks. Although Im third generation to have BC it never realy occured to me that it would happen to me. Denial or what???
Vickie give you boys a big hug from me. I know exactly what you mean when you say the mummy in you just kicks in. Luckily my LO is more concerned with car washes, bin men and choccy to take too much notice of whats happening to mummy.
although it must be good in a lot of ways to have chemo at home, it must take you out of the loop a bit support wise too. Do you still have a breast care nurse like on the nhs? What chemo are you having?
just re-read your first post, fec t, is that fec and then tax? I am havung that, my first tax is tmrw, gulp! Can bupa arrange a counsellor for you to speak to as i would have thought it better to deal with the isolation issues now perhaps and even a counsellor is a link so you don’t feel alone. I have been referred to counselling but they gave me an appt with a consultant psychiatrist which was totally ott, so now am waiting to see a counsellor/psychologist instead.
Don’t be lost alone - there are plenty of us here! I’m 38 with a two-year-old and 18 weeks pregnant, with a recurrence in my lymph nodes after 5.5yrs. I’ve just had a mastect and lymph node clearance on Monday and I’ll be starting chemotherapy in about a month
I think that being treated at home might not help with the isolation issue, in some ways. But with the internet, you’re never alone. I used this forum a lot when I was first diagnosed and it was my life-line. At the time I found it really hard to talk to friends or family about having cancer and when I was with them, just wanted to be normal. This time I’m trying to be more open because I can see how vital it is to have support from as many places as possible.
Our daughter is staying with my sister and parents this week while I recover from the surgery, but I’m really worried about how I’ll manage when the chemo starts. I’m most worried about the headaches. Sounds grim, and I suffer from headaches anyway.
Have you had your hair cut short yet? I’m wondering what to do about that - mine’s long at the moment and I’m thinking perhaps a bob, then a crop, then get the clippers out! Usually I only go to the hairdresser about once a year!! xxxxx
im a bit further down the line and a bit older than you as i had BC at 37 and then a new primary last year at 40… but im nearly 42 now… and im a gene mutation carrier.
Happy is there a maggies centre or other cancer support centre near you… we have a maggies and i go to a support group for younger women who have had cancer once a month… the age range is from about 23 to late 40s and we can discuss anything that we want to… there is no set agenda and i have found it really helpful although not everybody likes these kind of things.
there is also a group of girls off here who meet up regularly and have very long (often liquid) lunches every month it started with just 3 of us a year ago and now there are about 14 although we usually only have about 8 or 10 at any one time… perhaps you could put a post on the ‘in your area’ section of the ‘talk to others in a similar situation’ forum. our maggies centre also runs look good feel better workshops and i would recommend that to any woman having cancer treatment. they also do other classes like stress management and art therapy amongst other things.
Jane
i had long hair down my back and when i was diagnosed the first time it got in a tangle in the shower so i chopped it off into a bob because they said id be getting chemo… turned out it wasnt as aggressive as they expected. 2nd time around they told me i would be getting chemo anyway so agin i chopped it into a bob, then cropped it after chemo as it was sore just before it was starting to fall out… then my sis gave me a number 6 all over and then when it was patchy and coming out in clumps she shaved it all off.
like tors loosing my hair really wasnt much of an issue to me… infact mine probably was about 1% on the scale of upset was more the scale of pain that the hair was an issue… not everybody gets pains in their head though.
its now over a year since i started treatment and over 6 months since my last chemo and im back to work and my hair has grown in and has been cut twice… and having never had short hair im really liking it short for the summer!
Jane, did you not have chemo last time? I have had 4 sessions and yes it is hard, but it is also very doable and its great that you, like me, have supportive family around to help you. My boys stay away the weekend after chemo which is best for us and them, tho am desperate to see them when they come home!
My hair hurt a bit before i shaved it off, was part of the reason i did! But if you use the cold cap it might stay in enough to still look ok.
Jane - I had my hair cut to a short bob and used the cold cap on my first chemo session but the shower was really clogged with hair this morning so I think its time to have it cut short. Like tors my head is quite sore today too. Try the cold cap, if may work for you, you just look a bit silly thats all.
Lulu- Ive not heard of maggies but have booked myself onto a BCC course in Sept so I hope to meet a few people there.
Hi Sarah are u thinking of going to the Newcastle forum? Was considering it tho depends where up to on treatment. Sorry about the hair but Is intriguing to see what I look like with no hair.
Hi, I am 37 and have one son who is 10. It must be hard work keeping up with younger children. My son was fantastic on my worst days after my chemo. He played games with me that mean’t I could stay sat down whilst he moved all the pieces around etc. The downside to him being older is that he worries about me more. He doesn’t talk about the cancer much but does ask me questions sometimes so I know that he isn’t bottling it all up.
I was really upset when I lost my hair. I used a cold cap but it didn’t work for me. I remember crying buckets the first time I lost a brushful of hair. I went to a lovely lady near me, Stone, for a wig and felt loads better with that. My hair is now growing back really well (I was dreading it being grey) and I am looking forward to it being long enough to go out without the wig.
happy, you will find this forum great if you are feeling isolated, it helps knowing that you are not alone.
Interesting to hear all your comments about hair! sounds ridiculous but I’m more worried about losing my lashes!! I’ll look like a rabbit! Oh well, I see losing the hair like losing the breast - pretty low down my list of priorities. I don’t think I’ll go for the cold cap after reading all your comments - seems both Vickie and Sarah that you gave up after one go. Also I’m worried there might be some little bastards hiding in my brain.
Vickie -
I didn’t have any adjuvant therapy last time. I know it’s unusual, but they told me chemo would mean going through the menopause and my partner and I had just started talking about having a baby. Plus the benefit of chemo, tamox and radiotherapy were less than 1% combined. They agree now that chemo probably wouldn’t have done anything because the cells were dormant, radiotherapy woudln’t have worked because the recurrence is in my pit, so only if we’d decided no family and I’d taken the tamoxifen could I have been saved this again (possibly). I don’t regret it for a moment, I couldn’t possibly think of un-doing our daughter.
I really hope I can get on with the chemotherapy soon so that I can join you girls for a while at least!
