Breast Cancer Now Forum

Hi all   glad eveyone seems to be doing ok. Although I was lucky with the usual side effects I'm still bleeding and its really getting me down. After the complete unhelpfulness of oncology during the week  I went to my GP on Friday as I felt so low and tired.  She was absolutely fantastic. Even though theres a strict 10 minute appointment policy I was in there for 30 minutes. She tried to do an internal examination but when she saw how much blood I was losing she ordered immediate blood tests including one for blood clotting. The results should be back on Monday. But as I'm due my pre-chemo blood tests on 27th and seeing oncologist on 28th I can only think that my next chemo will be delayed due to low blood count....unless I miraculously stop bleeding tomorrow...fingers crossed!   Hairwise I still haven't lost any, which is a miracle when you combine the chemo with heavy blood loss. That said though my hair has gone weird and lank. That combined with the fact I'm now translucently pale  but with red eyes...yummy! If anyone said I look like dealth warmed up I 'd take it as a compliment!!! Gotta love chemo!!! xxx ... View more

Wow Wahini - the level of support in scotland sounds great!   I'm based in England and in my county the oncology building is on a different site to the breast care/surgery site. During my initial diagnosis and surgery I had the support of breast care nurses, but although I had a named nurse it would always be a different nurse at each appointment. Also if you call them its an ansaphone and someone calls you back within 24 hours. I've had no contact from them since moving over to oncology although there is always the option to still call them.   Within oncology I have a named oncologist but not a named nurse, it'll be a different one each time I go as far as I'm aware. My GP has been great and very supportive since my diagnosis though and has said I'm always welcome to go in and see her and keep her updated on progress. I don't if anyone else based in England has better support services.   I hope you are doing well with side effects now xxx ... View more

Hi reddi   Thank you so much for your response. You've put my mind at rest as to why nothing is being done now and it makes sense. You're right though - the communication of my oncology unit has been terrrible. I've now raised the worry of my blood loss to 2 oncologists and 2 nurses and no one has given me any explanations or reassurances. I will definately raise this with my oncologist when I see him.     And yes you're right that it is the weirdest thing to hope you're ok for a canulla and chemo! But from your experiences I can see that all sorts can happen and I would be lucky to have all 6 of mine as scheduled.   This forum is brilliant. Thank you again. You really have put my mind at rest, well as much as it can be when you're going through chemo!   I'll go and relax a bit and do some christmas shopping!   I hope you are doing well now after your chemo.   Take care xxxxx       ... View more

Hi Drummerswidow   I eventually got some sleep of sorts thanks. Its still whirling round my head though...yday the oncologist said that come 27th if I'm anemic I would more than likely need a transfusion and that would delay chemo. Yet I had presented at hospital losing blood and with signs of being anemic and they weren't willing to look  into it. Surely logic would dictate that its dealt with straight away to stop it getting worse and to ensure chemo goes ahead without delay. I don't know ...I just don't get it. I did think about calling my gp this morning to see if they'll do a blood test but I've not got much fight or faith left in me today! I'm going to do a bit of Christmas shopping and have a duvet day!   From what I've read within these forums I think most women have postive experiences with their oncology teams and rapid response number. But there are bound to be a couple that aren't so great...I think its Marykamille and myself who have drawn the short straw with this in the december ladies!   xxx ... View more

Hi Marykamille Unfortunately I had a very similar response from my rapid response number to the one you've had. Briefly ...I took tamoxifen for 2 weeks in Nov until it was found out I needed chemo. During this time I started bleeding. It wasn't a lot but it has been every day ever since and enough to have to wear protection. I told my oncologist this when he said I would need chemo, as I was worried about the cumalative effect of losing blood everyday but he just more or less shrugged. Anyhow fast forward to Sunday and I started losing a lot more blood. I phoned the rapid response number and got a very similar 'bored' response to you  from the nurse who answered. She didn't seem to like that my problem wasn't on her checklist. She said she'd speak to a doctor and call me back. Whilst waiting for the call I realised that although I'd been bleeding everyday for several weeks this was around the time that my period would actually start. When she called back she said the only thing they could recommend was that I went to A&E, but I said I wouldn't as I'd worked out it was my period. I said I was concerned though about how much blood I will have lost within the month and whether it would affect my chemo but she just cut me short so I left it.   Anyhow by yesterday I was still losing large amounts of blood and blood clots. I could tell I was becoming anemic as I was getting short of breath and having palpitations. My main concern was that come 27th Dec when I have my blood tests for my next chemo, the chemo would be delayed if I was anemic. I had an appt at MacMillan yesterday morning, which is next door to the chemo suite, so I thought I would also call into the chemo suite rather than call them on the number again. That way if they needed me to do a blood test I would already be there. Made sense to me but no...BIG MISTAKE!!! I asked at reception if I could speak with the nurse who had the emergency phone that day, I explained the situation. It didn't go down well. I was repeatedly told I should have phoned and was then kept waiting for an hour and a half. I reasoned with them that to speak in person would only take the same amount as speaking on the phone and that  I could have sat in the waiting room and phoned the emergency number from there and they would have had to respond within half an hour....they agreed that was the case but still weren't happy that I was there.  I then said that maybe I should go home, phone the number and then if they needed to do a blood test just come all the way back again ....thinking they would see how ridiculous that would be...but no, they agreed that I should really do that! I eventually saw the nurse who was on emergency phone duty. She acted like I was being a complete inconvenience. I was referred to an on call oncologist who also wasn't really interested. I had my blood pressure and temperature taken and he just said that my chemo may be delayed if they find out from my blood test on 27th Dec that I'm anemic!! I said (yet again) that was the reason why I'd come in that day so that they could get on top of the situation before it got to that but he didn't seem to want to take responsibility for anything so in the end I just had to admit defeat and go home.   After the fiasco of being left waiting for 3 hours for my first chemo and then my experiences this week I feel completely disheartened. To the point that its 2.30 in the morning and I've got up and made a cup of tea and written this, in the hope that getting down in writing will help me get to sleep. I've got some strong iron tablets left from when I was previously anaemic so I'm just going to take those and eat lots of iron rich food and try to deal with it myself. I was told at my pre-chemo meeting that I should get in touch with them anytime I have any concerns at all. But unless I fit their tick box of problems my feeling is I'm on my own, What we're all going through is potentially the scariest thing that we'll ever go through and we should feel supported and cared for but unfortunately I don't with the oncology team I have and it sounds like its similar for you marykamille. I do agree with you Shi in that I will continue to phone the contact number for any further problems but I don't know that they'll be dealt with....I really hope I'm proved wrong and my experience so far is just a blip...but I will be so p'eed off if my chemo's delayed when its something that could have ben got on top of this week..grrrh!!    Now thats off of my chest...and my tea's gone cold...I'm going back to bed!! xxx    ... View more

Hi Wahini   Sorry to hear you've been so sick. I hope you're starting to feel better now. I had 3 days of sickness meds with FEC and have been ok (touch wood) but very tired. Its crazy how differently it affects us all. I hope you're starting to feel better   Take care xx ... View more

Hi marykamille   How are you doing now? I hope you're out of pain and feeling better xx ... View more

Hi all   Well I'm a week on from first FEC. Been ok but very tired due to chemo combined with world's heaviest period starting on Saturday...just what I needed!! Only other issue has been constipation. I was eating healthily, drinking plenty of water and taking dulcolax and senna but nothing was moving! I got prescription from GP for Laxido and that sorted it.   I see there are a few ladies yet to start and if you're having FEC I'd say get a prescription for laxative beforehand if you can. You've then got it there ready just in case.   KC72 - I was the same as you. I'd started Tamoxifen and then found out about chemo. Its hard to readjust after you think you've got off fairly lightly!    Delph - you're not self pitying at all. I think we all have a sense of 'why me?' I'm 52 and didn't have children. I had fertility tests in my 30's and had 'unexplained infertility' as in everything was functioning but nothing happening! I decided against fertility treatment at the time. My breast cancer consultant told me that not having children, along with periods thats start young and finish late, can be a risk factor. So I was left thinking 'great - I couldn't have kids and as an unexpected bonus of that I now have breast cancer...lucky me!!' There is a sense of unfairness about all of this but its good that we have this forum to share.   Catlady37 - this is a great place for moral support. I'm generally not into social media but I've found strength in this forum, as its only other women going through the same thing who truly know how you feel.  Good luck for 21st.   Nellie McNelly - I think the build up is the worst. Once you know its happening and get round to accepting it you just want it over with. The actual process of having the chemo really wasn't bad at all for me ....and I'm completely cannula phobic! Good luck for Friday   Rapunzel - good luck for 21st and I hope you're feeling better by then   Good luck to all starting this week and next.  And to all those who have already started I hope you're bearing up. We'll get through this! xxx     ... View more

Hi maryKamille   So sorry to hear you had problems.Hopefully they can be more prepared for that for your next session. I hope you are feeling better now. Well done for going for a walk and doing some ironing. I think its good to get on with some normal things when we can. I had a quiet day today other than a couple of short walks. All being well I'm hoping to do a few bits around the house ...and get out for a longer walk tomorrow   Take care xx ... View more

Hi all   Started my Fec yesterday. As always with me it wasn't straight forward! The drugs hadn't been orderd from pharmacy and then pharmacy had to send for them. So from having an appointment at 1.15 I finally had chemo at 4.15. It wasn't nice waiting around for that long. But it went well when it started and at least I'm one down down! I tried cold cap but because I was already quite distressed from cannula (the cannulla  went fine ..I'm just such a wimp!) I took it off after 10 minutes.. so hoping my wig from MacMillan is ready soon! feeling sad though now that losing hair is a reality.   So far so good though after chemo - taking my meds and no sickness or nausea.  I hope you're doing well marykamille. My next chemo is new years eve like you as apparently I should be in the monday group but they couldnt fit me in this time round.   Hi Pastasmissus - I have peripheral neuropathy in my feet from a previous illness. Thats why they put me on FEC. Also, although I didn't sleep great last night I haven't had any problems with the steroids. I had one lot at hospital yesterday and then I'm on them for 3 days. I drank loads of water from day before chemo - about 2.5 - 3 litres and I'm continuing to do so. I'm thinking thats helped with how well chemo went and how well I've been feeling up until now...fingers crossed!   xx  ... View more

ps I think there will be a few of us doing festive chemo... drummerswidow on Christmas Eve, marykamille on New Years Eve and mine should fall on New Years day..although I don't know yet if chemo suite will be open then! The positive I'm taking from it is that for future christmas holidays we can look back and think how far we've come!   xxx ... View more

Hi all   Wow marykamille! I'm amazed to hear from you today! You're giving me hope for tomorrow as I'm so scared! I'm pleased it went well for you. I hope you continue to feel ok. xx   Rapunzel2018 - don't feel bad... it is good to find that others feel as scared of chemo as you do... its such a lonely experience and it helps to find others in the same situation who are feeling the same as you.  Its bad enough being told you need chemo but when you're told you won't need it and then find out later you do its hard to adjust again. I'm on 6 FEC as well starting tomorrow. I have to say that right now I'm petrified! But reading marykamille's comments after she had her first chemo today is making me feel stronger.  I was going to try eating less today. Its my birthday and I cancelled my birthday meal  but by this evening I was feeling miserable and hungry and we ended up having fish and chips....hope I don't regret it tomorrow! xx   ... View more

Hi Chaffinch17   I've read that a lot of ladies have got on well with Emend. I'll definately ask for it. I've been taking manuka honey and will continue throughout treatment. You're right its so expensive though. Can't believe I'm spending £30+ on a jar of honey! I'll look out for that mouthwash if I have ulcers. I was hoping manuka honey woud help with those though. I'm starting my first of six FEC on tuesday. Just want it to be over! Glad to hear you're nearing the end of treatment. Its a long haul for you.    Hi blueash   Thanks for info. For the first one I'm going to take my chances and just going to restrict my eating tomorrow and hope for the best with the nausea meds. If its bad this time I'll fast next time. My birthdays going to be miserable enough tomorrow without adding fasting as well! If I have a bad time though I'll no doubt be asking you for more info!!    xx ... View more

Hi marykamille   I had my chemo talk today. With a group of older men! I then had 10 minutes 1-2-1 with chemo nurse. After speaking with her I've tentatively decided to give cold cap a try. I already have thin, fine hair and I know I may still lose a lot, especially on top and would need to wear a wig or top hair piece thingy. But I'm thinking that at least when I have a hat on I could have my own hair hanging down at the sides still. I'll see how it goes, if its too awful I'm not bothering. The thought of a cannula and chemo are bad enough on their own!   hi gocat - have you spoken with Macmillan to see if theres any help you can get at home after your daughter leaves. May be worth a try. Its frustrating that it can't get started before your daughter leaves. Could you try speaking to hospital again? I hope you manage to start sooner.   Good luck to everyone starting this week. I think a few of you are Monday and I'm Tuesday. Although I'm dreading it I'll be glad to get the first one out of the way!   xx ... View more

Hi Lottie   Just read the article. Your wigs look good! I'm starting chemo on Tuesday and have an appointment at the MacMillan wig place at the Infirmary on MOnday (I'm also Leicester based so I'm guessing you were at LRI Osborne for your chemo too?).    I called in at the MacMillan place on spec on Monday. And immediately started crying...and all I could say through my sobs was that the wigs looked horrible!! To be fair though she did point out a couple of wigs that looked better for me, which I shall try on Monday. I have highlighted dark blonde hair just above my shoulders. As its very fine I'm hoping to find a fairly fine wig. Most are quite thck hair. I also want one that has slightly darker roots and a nbatural hairline.   What kind of wigs did you find were the most natural looking? Any good places in Leicester? I'm thinking online will be cheaper?   Like you I'm thinking of getting a couple. One close to my natural hair and one with a blue-ish/silver hue. Although I still want it to look like its my hair. I always fancied trying a bluey silver dye so why not try a blue wig!!    xx     ... View more

Hi all   What a scary time this is! I think the waiting makes it worse!   I've started planning some nice things for when this is over... to get me through and have something positive to focus on .   I've been scouring the forums for advice for dealing with side effects and thought I'd share a couple of things that have cropped up a few times...   I've read that Manuka honey is really good for mouth sores. I've bought some with a 15 MGO rating. Bloody expensive so hoping it works! I've started taking a teaspoon a day already. I've also read that putting dark nail polish on fingers and toe nails is supposed to help save them. I'll be trying out a nice inky blue colour I've had for ages but never worn!!   I've also read that fasting can help with side effects. There are several threads about it on this forum and some information available on the interweb. Aparently fasting 48 hours pre and 24 hours post chemo can help with side effects especially sickness and nausea and its thought it can make the chemo more effective at attacking any cancer cells. (This is just what I've gleaned from quick research ..I'm obviously not a medical expert). I couldn't do 72 hours of fasting (you are allowed water, herbal tea, some steamed veg). But I've decided I'm going to eat less the day before my chemo (would have to be my birthday!!).  On the day of chemo and day after I don't think you eat much anyway.    Anyone got any other tips?? xx       ... View more

sorry..I meant Shi not Shri!! xx ... View more

Hi all   Thanks for posting in the December 2018 starters shri and whytefawn, and thanks for inviting us to ask any questions in the Oct 17 thread.    My chemo starts on Tuesday 11th Dec. Only found out last friday after 8 weeks of thinking only rads - so still getting my head around things. I'm having 6 lots of FEC. (Makes me think of Father Ted...I want to tell them all to FEC off!!)  I have a few questions ...any insights/advice really appreciated...   Did anyone try fasting before and after chemo day and what was the result on side effects..were they better? Did anyone have FEC and cold cap and how did it go?  Also I've read that some women  on FEC-T have found that they lost their hair on the FEC and it started growing again on the T...does this mean FEC is worse for hair loss?? (as i already have thin, fine hair I'm panicking) Did anyone try Manuka honey for mouth sores? I'm very phobic of canulas. I'm having one for 1st chemo due to lack of time and I'm considering PICC for 2nd. Did anyone have a PICC fitted and have positive expereinces to share?   Aaargh...so scared!! Trying to be positive though. Its my birthday on 10th (now have a wig trying session booked ...whoopee!!). I have decided that on my next birthday I will be in New Zealand and I will raise a glass to the me in December 2018. I'm also going to do as Shri, Wytefawn and others have done and post in a new starters thread to offer support and advice. I can't wait to be that post chemo me!! xx     ... View more

Hi gocat   I think your post must have come through as I was writing mine earlier. If you don't have somebody around permanently who can care for you if needed it makes things feel worse doesn't it. If we all knew exactly what side-effects we were going to get we could prepare more. Its the not knowing that makes things worse before you start. Sorry to hear your husband has COPD. My mum has it too. I hope he's doing ok.    Lots of love to you   Angela xx ... View more