Breast Cancer Now Forum

Hi, Clare, the Hickman as I understand it, is a line into your arm that has a bit on the outside which is there All the time. A portocath is inserted under the skin in your chest just under your collar bone. So theres nothing on the outside. I didn't fancy something on the outside all the time, I was worried about it catching on something or getting infected. Which can still happen with a portocath ! But you can leave a portocath in for years, so hope to have it for whole of treatment, including recon in 18 months. It makes such a difference. Simone, the crisps thing made me laugh! Gnomeo and Juliet?? Can it be worse than the Real Housewives of Orange County which is what I got hooked on in the weeks after the mx Hope everyone's doing ok today. Much love Alison xxx ... View more

Hi Sanditoes,,good idea about the paracetamol, I actually had the hot blanket at thehospital but still got very cold so taking a hot water bottle next time as well. I wash my hair about every 3 days but I dont rub at all, in fact it's more like stroking shampoo through and then conditoner. I don't seem to be losing any yet....fingers crossed. But not looking forward to next session! Alison ... View more

Hi babem, I agree, it was much worse than the original mx! I was at my lowest point when I went back into hospital for the third time and was told it had to come out - after two months of struggling to keep it in. I haven't really got used to the lop sidedness and dont think I ever will, so may look into having another tissue expander after rads. Although the thought of yet another op really puts me off. And it will be more time off work, and I've had lots! I'm currently having chemo - had my first 2 weeks ago today and actually it wasn 't too bad. I've been lucky with the side effects, just tired for the first week really. My theory is that I had a horrible time before chemo so I should have an easier time with chemo- it's only fair! In fact I feel so well that I'm going to prague for a few days next week. Hurrah. I'll finish chemo, if there are no more delays, in February .then I'll have a month off anything, then rads every day for three or four weeks. So in theory I should be finished in April. I too wondered if I'd done something wrong, but I don't think it's anything to do with it, I think some people's bodies just don't accept them. How are you feeling now? I hope you're ok. I felt a lot better once I'd embarked on the chemo, at least it felt like i was back on track to get everything over with. Good idea to get your hair done! Alison xx ... View more

Hi I found it difficult to think I'd be off for so long, by the end of my treatment which should be in April I'll have been off work for ten months. I may be able to do a bit from home in the coming months, but there's no pressure I'm very lucky.but I'm so glad I haven't hd to work, some weeks I feel fine, but the week of chemo is a wipe out, and having any kind of treatment is very hard physically and mentally. So would take the time you can and don't beat yourself up about it! X alison ... View more

Thanks very much everyone, every now and then a sl ight worry crosses my mind about being away from the nhs then I think, lot of other people have done it and I'm only a 2 hour flight away, but I hadn't even thought of possible delays because of weather! Xx ... View more

Hi everyone, How are you all? I've been feeling almost normal this week, still a bit tired, but not every day. And Soooo excited about going to Prague next week - must sort out travel insurance today. How are you coping naz and deed. Alison xx ... View more

Hi everyone, I'm trying the cold cap too. Hd my first session twelve days ago, the cold cap was HORRIBLE. I mean really horrible. It made me feel dizzy and sick for about half an hour, I thought for a time I would ask them to take it off I hated it so much but persevered - luckily a woman had told me that the first 15 minutes were the worst and that it gets better. And it did although I got very cold - more clothes next time and a hot water bottle! It was extremely tight - they have only two sizes - very small and very large! So I went for the tight one - apparently where they don't have contact with the follicles is where you lose your hair. I too will have grey roots as it grows but and I'll use scarves, but hopefully I'll have a little bit of fringe and side bits. But so far I don't seem to be losing much yet. Although just realised that ladygarden, as I keep seeing it referred to and I like, is starting to fall out. Which will be a bit weird! Anyway it's daly days, so may well start to lose more on my head soon. Xxxx ... View more

Hi everyone, I havent posted or even come onto the site for a few days, I think because I've been feeling almost normal so wanted a break from thinking about it! Clare - so sorry you've been having such an awful time. It sounds grim and well done you for coping. Dizzy, sorry to you too about the seroma. Like I said before, I do know how frustrating and upsetting it is to have to wait for things to clear up before you can get on with treatment, it's really hard. When it happened to me it was my worst point since dx. I fact I found it harder to cope with than the original dx, I think it was when it really hit home that I was I'll and not in control. Very upsetting. Sorry not to be able to remember everyone's name - some of you are brilliant at it - have you been doing those memory exercises or something! To all those who are considering getting hick mans or Picc lines, I had a portocath fitted - and it's absolutely brilliant apArt from the second time they tried to access it and it had turned on it's side . But I strongly recommend them. I had a hideous tine with canulas when I was in and out of hospital so had a portocath. Apparently not everyone offers them, and I get the feeling that you have to ask even in places a do do them. But it meant that having the chemo was really easy - it was the cold cap that was horrible. I've felt so much better this week.in fact I felt ok really last week the first after my first chemo. Just a bit nauseous for the first couple of days at times, and then tired for thet rest of the week. But touch wood, ok. In fact so ok that I've booked to go to prague for three days next week...back the night before my second chemo. Told the hospital and they said officially they have to say I should nt go, but I should be fine. Hope I'm not Tempting fate! But sooooo excited. Simone - you sound back on form which is great - hope it continues to be ok now you've changed your me. Love to everyone and good luck to those having chemo this week Alison xxxxx I never had the tingling downstairs when I had my first FEC,I was almost looking forward to it! ... View more

Hi babem I had an mx in July and a tissue expand put in. Two weeks later developed an infection and a seroma and after a two month struggle had the expander taken out because it wasn't healing. My chemo was delayed for two months, just started a week ago.there is a thread called time to try the implant again, and there are a few of us who've had horrible experiences with them! I'm really sorry you're having such a time with it, it's frightnening and unpleasant isn't it - I got very down whe I was back in hospitl for the third time with it all. But its got better and I can still have reconstruction eventually - I have to have rads after chemo so itll be a year after that before theyll consider recon. Are you coping? Alison X ... View more

H small, I used the cold cap for my first treatment a week ago and I have to say it was really horrible! I was prepared because a woman in the unit had told me that it's really horrible for the first ten to fifteen mintues and then it gets better. But its a real shock to the system. Also take a scarf you can put around you, some arm socks and take the warm blanket they bring one. But it would be good to have a hot water bottle as well- I'm taking one next time. I got realy cold and had a hot shower when I got back to warm me up. But I haven't lost any hair yet - but it is only a week ago! Good luck and best wishes X ... View more

Hi everyone, Clare - so sorry you're having a really awful time. I moaned like *******ery when I was Ill so please, feel free to moan as much as you like. You sound remarkably cheerful in the circumstances. Injections every day! Oh that's really tough. Simone - so glad your're back, I thought something must have happened because you went to quiet and I was worried. I think you had another session five days ago? Sorry you're so tired, but at least you're not feeling as sick as you did last time, or are you? I've not felt sick really, but am still feeling tired a week after the session. Going to bed in the afternoons, and not much energy but trying to do a couple of things a day. Haven't lost my appetite and today I had a chip butty for lunch and a take away curry for tea so haven't eaten particularly well today! My hair is staying put so far, although it's only a week since my first session and I did use the cold cap. And I'm not brushing it very much! Love to all X ... View more

Just come across this thread, thanks everyone. I hadn't thought about a new prosthesis, I've only got a softie. So I'll be back on the phone today to get an appointment! Alison ... View more

Hi everyone, Dizzy, i posted a long post in response to your post about your daughter dizzy, but it got lost somehow. It was really a moan about how awful lots of my friends kids are so it's probably not a loss! I don't have children so I have a fairly mary poplins approach - they should behave themselves and rudeness should not be tolerated! Poor you, perhaps if she went with you to appointments and saw what it's like for you, she may have more compassion? And how horrible for you to have your seroma burst, I had the same thing but the seroma ws in my breast which is why I had to have the tissue expand out eventually. It's really horrible isn't it? Finally after the tissue expander was removed and so everything healed and I could start chemo, but it was delayed for two months which was very frustrating. Ive felt very tired for the last few days - had my first FEC last Friday. Not really felt sick though thank goodness. Had the cold cap and not really lost any hair yet I don't think, but about to wash it for the second time and I don't really brush it much. It's not looking it's best I must say! Clare, how horrible to be manhandled, literally, by a creepy man! As if you don't have to put up with enough. There are some people that you just don't want them to touch you don't you? Simone - are you ok? You've gone very quiet, I hope you 're not feeling too lousy, Much love to you all Alison ... View more

Hi Thanks Bobtail. I'll check out my bank and see what they say but try Natwest if no luck! Alison ... View more

HI everyone. Well today I feel almost normal. I've been very tired since chemo - particularly in the afternoons, do haven't been online, but that's about it. Not really been feeling sick, a bit iffy but nothing to write home about. And been meticulous in taking those anti sickness tablets - really hate being sick. So I think I've come through the first session OK. Hurrah. Naz - I think even when Deed gets her hot new set of bosoms we'll still be hanging in there waiting together- so we can still be implant buddies! Its going to be a long old haul for me - six months before I can even consider getting a new implant and then a year after that to recon. Oh well hey ho. I Still hate what's left too Deed, its' just so ugly isn't it? But I've decided to go away for a couple of days - there are some fairly cheap deals to Prague adn if I go just before my next session I should be fine. Just posted asking anyone if they'd been away during chemo as the hospital doesn't recommend it - and immediately got an answer from someone who had. We're a bit broke at the moment but I don't care - a few days in a foreign city makes me so excited so I think it has to be done. Hope you're all well and thanks for all the kind thoughts, it's much appreciated Alison ... View more

Hurrah and thanks Sadie! Just what I needed to hear. I'm going to book right now. And I'll check out miaonline - that was my next question. I have insurance through my bank account but suspect it won't cover current circs although will give them a ring. The thought of going away is so exciting though. Thanks and best wishes ALison ... View more

Hi everyone, Well touching wood and all that, I seem to be getting off quite lightly on the se's front, which I think is only fair and just payback for having such a horrible time up until now! The worst part of chemo was th cold cap which rally hurt for the first fifteen mints or so and them made me light headed and VERY cold! Got used to it after an hour,and I'll persevere and see if it works. Simone - fab that you've found some anti sickness that works! Hurrah! shepherds pie - yum.But sorry to hear about possibe delays, yout just don't want that do you? Good luck and much love to everyone Alison xxx ... View more

Hi everyone, Well fingers crossed, touching wood and all of those things but so far I seem to be getting off pretty lightly on the se's from chemo front. Felt rather tired and groggy yesterday afternoon started to feel slightly sick, took an anti sickness tablet And it worked, who'd have thought it? woke up this morning and feel ok, although weirdly woke and my period started, the first one for months. I used to be regular as clockwork despite being 50, but a course of tamoxifen before mx stopped them, then I had one the day after coming off tamoxifen, then nothing til now. The worst part by far was the cold cap, which really hurt for the first ten minutes and made me light headed for about the first hour. And I got so cold! Apparently my lips went a bit blue so will wear more clothes next time. We'll see, if I lose lots of hair anyway then I'll abandon it. Nicky, poor you not healing. That's so depressing.have they any idea why it's not? I'm sure they'd have said I know. Is there anyone else in the medical world who specialises in healing wounds outside of the cancer field? You'd think that someone might have made that their specialism? I don't even know how you'd find them but is it worth asking your surgeon? Lots of people seem to get second opinions about their surgery so presumably you could ask for a referral to a wound specialist, if such a thing exists? Pam - I was very worried that I wouldn't be able to have recon when my expander removed and was assured by the surgeon that I could have something. Someone on this forum told me theyd been to a conference about recon and saw some truly remarkable things that are being done. I don't know how they got on the conference, but it did make me think that if I'm given limited options by my surgeon when the time comes, then ill look at what else is going on. My surgeon is supposed to be very good, and I do like him, but im determined that I'll get a good set of boobs at the end of this! Deed - did you go down the Nile or to a resort? We ve both thought about going to Egypt before and it sounds lovely? Dd you need special injections to go? If chemo continue to be ok then I'd love to go away for a few days . Naz - it seems like a long time to wait doesn't it? But time seems to be whizzing by for me at the moment so I hope it does for you too. And at least you have the beginnings of a plan. Much love to you all, I'm staying in bed for a while - one of the advantages of not having children. Xxxxxx Alison ... View more

Hi everyone, Am about to go to first chemo session, hope to feel ok enough to write more later...yes I know .. Ever the optimist. Deed - so great you had a fab holiday - welcome back! Naz, hi . Hi pam and nicky, so sorry to hear you've had such a horrible time with the implants, it's just not fair is it? But I found tremendous support from naz and deed on this thread when I was having a really horrible time a couple of weeks ago. You feel so alone and despair that it will never end don't you? I don't know if youve read the start of the thread but all three of us had horrible problems with implants, seromas and infections and you have all our sympathy. Will get back later Much love to you all Alison xxx ... View more