Oh dear… I can see your problem clearer now Fiona.
I can’t see how any true friendship can run with an ultimatum such as she is suggesting either. This is such a difficult situation to be placed in. It isn’t like “not discussing a disliked boyfriend/hubby/etc.” This is banning discussion of your feelings and your life.
Maybe you would do well to let her be, and concentrate on looking after your own needs right now. She seems to have a lot on her plate to sort out, and I am not sure you are in a position to help her.
I really do feel for you - losing a close friend in this manner can’t be easy. People do react to the news of a loved one with cancer in many different ways. Don’t feel this is your fault in any way.
Fiona508 - what a horrible situation. I don’t see how you can live with an ultimatum like that either. I wonder how she would feel if the roles were reversed? YOu certainly don’t need to be caretaking her feelings like that and it sounds like you’ve done the best you could do in the situation and told her you can’t just pretend that you don’t have cancer or any SEs. It’s hard enough without that sort of pressure. Friends really should be there for you through good and bad, regardless of what else has happened. Sorry you are having to deal with this. I hope the counselling can help you.
Nicola x
Fiona508, I do feel for you, this is not what you need right now, that is so hurtful. I can’t believe someone can do that you need them behind you one hundred per cent. Apart from family I have 4 really good friends who have been amazing, I am very lucky, 3 girls and 1 fella, they all text me and phone and visit and they are all different and offered different kinds of support, maybe you can focus on another friend that may be more willing to help you get through this, regardless of what has happened in your friend’s life we have to be there for each other in our time of need, I can’t help but feel she is just being rather selfish. I really hope your counselling helps and try to focus your attention on some different friends, ultimately she will be the one who loses out because she will lose your friendship.
Hi to all this is my first time using a forum so be gentle with me lol I was diagnosed on 23rd May this year 4 days before my 30th birthday ( great pressie!!) Luckily enough I had a holiday to go to several days after to distract me of the initial shock. I had my lumpectomy several days after, the results were that it was a grade 3 HR2 positve cancer and it looks like it hasnt spread anywhere which i’m very thankful for.xxx The docs decided to put me on an 18 week course of the FEC-T chemo, 3 weeks radio, Herceptin for 1 year and tamoxafen for 5 years I have just finished the FEC part of my treatment which I am ashamed to admit but nearly broke me as I have never felt so ill in my life!!! I have just started my cycle of docetaxel and herceptin and fingers so cross it has been so much nicer than I felt on the FEC treatment. I felt I needed to come on here at this point of my treatment as I feel i’m starting to struggle to keep my emotions contained around everyone. I am lucky that I have some great friends around me but it is hard for them to understand truely how I feel as they only get to see me on my good days. I know how extremely lucky I am compared to some peoples prognosis on hear and I do not mean to offend anyone by my moaning but am starting to feel fedup of having hot flushes, no hair, having a weeping picc line and walking like an 80 year old because of chronic back pain, I feel and look like an old woman and should be in my prime as a 30 year old!!! I’m annoyed for moaning about it as generally in life i’m a strong person
Hi Sian29, Welcome to our little gang. You’re right about other people not always understanding about how you feel and why would they if they haven’t been through similar. It’s surprising what you find out about certain people when we get flung into this situation.
It sounds like you’ve had a rough time with your FEC treatment, I’m having my 2nd next Tuesday out of 6, you have slightly scared me! Did you find you got worse over the entire treatment or was it up and down over the cycle? I’m sorry you are feeling low and that things are a struggle right now, I’m 49 and I feel I have aged considerably over the last 5 months since I ws diagnosed back in May.
I’m sure there will be others along shortly to empathise with you. Why not join out Facebook page, we are trying to keep it lighthearted and positive and keep the more serious discussions for here. X
Hi Sian. Welcome to the September group. Sorry to hear you found your FEC so difficult - but I’m pleased to hear that, for you, the T part is easier. I have been dreading it. Just goes to show how everyone’s experience is different. I’ve only had two treatments so far, and my onc told me the SEs would build up as it went on. Early days yet, but my second cycle has been much easier than the first. I really do feel for you having this blow at such a young age. I got my bad news (first time round) five days before my 32nd birthday - then my GP went off on his Christmas holidays! It’s so isolating haviing to deal with something like this when everyone else is getting on with their lives without such worries - and some of them cut you off to protect themselves. It does get better. And in the meantime, this forum is very supportive.
Hi Sian29, you are so young! It really is unfair to have to face all this stuff at any age but it seems even tougher when it impacts fertility and all the normal things 30-somethings do. I too was diagnosed in May and I’m Her2+ as well but I’m 40 - and that feels young, so goodness knows how you feel. I’m going to have herceptin after the T so interesting they are giving yours together - I heard they do this in some places and there are some studies to suggest it’s more effective like that, but again it seems to be a postcode thing. I’ve also been offered a trial where a computer decides if I get the full 12 months of herceptin cycles or just 6. Have you been offered this? I don’t think I’m going to take them up on this as I’d rather decide for myself than let a computer toss a coin.
Chemo 2 Day 7 - I’ve had a good day so far. OH has taken some time off work and we’ve been to Greenwich with the inlaws. Interesting exhibition at the Observatory about longitude - made me want to read up more about English clockmaker John Harrison - a lot of it tied in with a Thomas Pynchon novel I’ve been trying to read - maybe the chemo fog is lifting enough to give me enough concentration for it again!
Hiya Everyone
and waving madly back at you, Meg - so near, and yet so far arent we?
Sian - you can moan as much as you need to on here - that’s part of the magic lol - and everyone will continue to support you and moan as much as they need to as well.
I try, try, try to make myself feel more positive by comparing my situation to others who are in waaaay worse situations … and … well, it just doesnt work for me, end of. I wish it did, so I keep trying it anyway
To be honest, when I was reading your post, I was just thinking: OMG you have had a really tough few months to get through already - I hope you also feel proud of yourself because you should - it sounds as if you are being incredibly strong as well to me.
Starkhia - snap! same date for 1st FEC, same treatment regime
Im still relieved to be finding things much easier than I feared (day 10, first FEC)
Tonight Im going to get to know my friends’ hair clippers though. I havent noticed any change in my hair yet, but he’s away for a couple of weeks from tomorrow and there are not many people that you like to ask to support you with this are there - so we’re going for it in an hour or so. Deeeeep breath, lots of not knowing if Im laughing or crying or both and that sort of stuff … If I discover this week’s winning lottery numbers have been engraved on my scalp all these years, then I will definately be straight here to share them lol.
Tippy x
p.s. anyone else just type as they think and then get paranoid that it may well not make any sense at all to anyone else??
wow these forums do work I feel better already. A huge apology to Niknak321 my intentions was not to scare anyone in terms of the FEC treatment. If there is any consolation it did get slightly better each cycle rather than worse. I think for me I had such a horrendous first cycle which invoved being in and out of hospital for nausea and an infection, that I worked myself up for the following cycles.
sdfmeg you mention you were 32 your first time round does that mean it has come back for you?? If so I am sorry to hear this. Did they reccomend you to be tested for the gene? I had my test several weeks ago and should be hearing any day the results.
Keyfeature I am amazed that they have suggested that a computer decides your treatment for you!! I have not been given this option I have been told I will have it every 3 weeks for 12 months. It is a shock for someone my age but in one way I do feel lucky as I do not have children to look after and my onc said that due to my age they are doing everything possible to reduce the risk of ot coming back. My heart truely goes out to people who have to deal with this and have children to think of xx
My onc gave me a couple of minutes to decide what I wanted to do regarding my fertility!!As you can tell I’m not a fan of my oncologist lol He said to me that due to it being an oestrogen fed cancer that I would be silly to delay my treatment to freeze eggs so in the end I went for the Zolodex injections which have put me in a ‘clinical menapausal state’ …atleast I wont freak
out when I do have the real menapause
I hope all are in fine spirits! I’m back on track for my second Chemo now on Monday 8th - blood test yesterday white cell levels are up. Bit disappointed because this has knocked my schedule out by a week and I really wanted my chemo to be over by the end of December I’m praying that there wouldn’t be anymore hick-ups going forward…there are so much I want to do
Thanks Fiona508 and keyfeatures for the heads up…keyfeatures, I’m not having any injections in aiding the repoduction of the white blood cells …am not sure this is something they will be recommending. The 3rd day after my chemo I felt that I was eating for King and country - I was cavering for things I wouldn’t normally eat or should I say I’d cut out of my diet (Bread/Pizza/Chinese). But I for some reason or another can not get back to eating my health diet greens/salads which is frusturating. I do need to try the other milks to see which one I could stomach I’m so used to semi skinned milk!!! I’d stop eating red meat gosh over 20 yrs and finally stop smoking nearly 3 yrs. plus I guessed lived a active life (gym/carnivals). My oncologist havevn’t recommended anything to me about my diet however, I’ve seen a nurtritionist which was good basically giving me the heads up.
Today, was nice in the sense I was home alone, even though I love the company of my friends and family I do enjoy my quiet moments (maybe because the age gap between my sibblings 10 and 12yrs…am 43 next wk with no children). Unfortunately, our mother died of breast cancer 20 yrs ago…I wouldn’t depress you with how young she was!!
Now my energy levels is low - feeling tried quite a lot…but fighting it and trying to go to bed at my normal time. Been doing the house work today now that I’m not working anymore I feel I’ve no excuse. My scalp is extremely tender funny though I’d cut my hair really short at the beginning of the year (no.2) something I always wanted to do.I now have to really cut it off as it’s becoming patchy. My skin is very dry inparticularly my legs - I’ve been using black seed oil…doesn’t smell too great but does the business (LOL). I’d a clear out of my make-up today as well as shampoo/conditioners, cleansers/toners gosh the works - it’s really tough knowing which products are safe and not safe…I’m climbing the walls especially as I’m a black person and most of the products I tend to use are from the States arrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrggggggggggggggg.
I live in Ealing and was fortunate to be referred to West Middlesex University Hospital and so far I’m pleased with my the operation removing my lump but would need a bit of reconstruction after my treatment (2 in 1 I get a flat tummy!!!). I’ve a quick question regarding supplements whilst having chemo…I know that there haven’t been any conclusive research stating that paitents will benefit from taking supplements during their treatment. My chemo nurse and registrar were not in favour of me taking anything and was wondering if this had been the case for you.
Oh my, I didn’t realised how much I’ve written!!! I hope you have a lovely evening ladies!!!
Yibby x
Hi Yibby - re: supplements - My oncologist was okay with my supplements but said avoid herbal medicine type things and pro/ pre-biotics. Her registrar was more cautious and said avoid everything until I told him she’d said it was okay. He then told me that they often don’t really know because these things haven’t been trialled with chemo so tend to err on the side of caution but vitamins and minerals should be okay to take. He suggested calling the manufacturers to check - I’m not going to do that. I have found that the first few days after chemo I struggle to take my supplements because most of them are flipping huge, so I give them a miss then. After that I take chlorella, spirulina, omega fish oil, cranberry extract and a one-a-day multivit. I live in North London and am being treated at the North Middlesex. I’m getting most of my toiletries from Holland and Barrett now although I’ve never been one to moisturise my body, I’m trying to use handcream more often as heard they take a beating but can’t say I’ve noticed more dry skin yet.
Welcome to all the new ‘voices’ on this list, lovely to read new conversations, though I am sorry for the circumstances that place you here!
MOISTURISER - just to say, because I has some dry skin issues before BC, my Dr prescribed Hydromol ointment for me. It is for eczema, and other dry skin conditions, and is a kind of vaseline like substance. A 500g tub lasts ages. It has no fragrances or other additives, so it very safe to use all over. I use it on my hands every night, and even on my face around my eyes, as mine are watering lately and causing skin irritation where the tears sit. So, do ask about it at your next oncology meeting, and I am sure something similar can be provided. (There is also the E45 kind, but I don’t get on with that… I think it might contain perfume?)
Yibby - it is probably the steroids making you hungry. I too felt like I wanted to eat, eat, eat all kinds of odd food combinations! My steroids have been reduced now, and I crave a little less.
For milk - you might find the ALPRO drinks helpful. I drink the vanilla rice milk, chilled - tastes a bit like rice pudding! And I have just tried the Almond milk, and that is thicker, and rather nice. I found both of these helped with the thick feeling I had in my throat from the anti-acid drugs, and they were gentle when I had a sore throat.You can usually find the ALPRO stuff in the ‘Free From’ section of a supermarket, as people with food intollerances use them.
June, KeyFeatues & Nik Nak, thank you for words above. I think you are right - it’s not like avoiding a particular subject you disagree on. Its my whole life we are talking about, and the events of the least few days have really shown me that.
On WEdnesday I started to run a temperature and was admitted to the oncology ward having intravenous antibiotics and extra white blood cell boosters. I had lost all the skin in my mouth and the ABs gave me a thrush infection all the way down my throat. At first they couldn;t work out what was causing the infection but on Thursday night my wound from the SNLB had a little hole in in and pus was coming out.
Anyway, they finally got my temp back to normal and my white blood cell count as well. The booster injection I was given the day after chemo starts today and lasts a week, so I have been sent home with lots of tablets to take and instructions to keep on taking my temperature. My scar feels better already. I still can’t eat solid or hot food.
I spent the 2 days crying about losing K, when funny things happened that she would appreciate, I wanted to text her, when I was really down I wanted her to comfort me and I knew that if I had accepted the deal on continuing our friendship I would probably have had to say something like, I going away to visit relatives for a couple of days - no access to emails - sorreeee. then hi there, back in town, how was your week at the beach? So the extremeness of the situation really made things clear. Oh dear, I miss her so very much.
Nice to get back on here and see how you are all doing. My Top Tip for the day - don’t get complacent about taking your temperature. I didn’t feel any worse than the usual chemo side effects, and my temp was 38.3.
Have a great weekend everyone!
Fiona508, I am so sorry to read you ended up in hospital! You really are going through unpleasant times.
I’m sad about your lost friendship too. It puzzles me that your friend loves you and fears losing you, but through her actions she has lost you already! I hope she sees what she is doing to herself and to you, and is able to realise some kind of acceptance that you are very much alive and need her support through your treatment to recovery, and that it is something she can face and give wholeheartedly. Perhaps she is depressed and grieving and not able to deal with life issues very well right now. I hope things change for both of you, and that she reaches out without conditions, and you can accept.
I check my temperature, morning, noon and night. I thought I was being too obsessive, but now - after your warning, I will continue to do so.
Nurses were concerned that I can feel a dull ache from my PICC tube across my chest and have a rash around the PICC dressing area, and I almost ended up in hospital, but now they are going to check it out next week at my regular appointment as everything else seemed to be okay. I have a horrible thought that they might decide to remove it… and I don’t want to be back to cannulas, as that hand vein is very sore now.
Hi June, thank you. She isn’t depressed, but she has recently lost too many people that she loved dearly and they all died slow painful deaths. I hope I get well and I intend to get well, but there’s a 25% chance that with TNBC I may not survive. I need my close friends to look me in the eye and say that they get that and that they will be there for me even if that’s the route my life takes. I know she is seeing a counsellor. I know she knows that this is irrational baggage that is damaging her life. While I was in hospital I realised that this might actually prod her into getting help. She is 56. Unless she starts replacing her entire friendship circle with healthy 20 year olds, she is going to see a lot of the people in her life get sick or frail, and lots of them will die before she does. Even if she says she is working on it I would take her back.
I too had started feeling a bit of a nerd taking my temperature so often. Even my GP said to me that I could relax, I would know if I felt ill. Thank goodness I did keep doing it. I have my fingers crossed that your PICC will work out OK. I had had my biopsy surgery cannula inserted in the “good” hand vein a week earlier, so they couldn’t get it to work on the day of chemo and had to give me my first chemo in the vein near the little finger. Even though that was nine days ago, the vein is inflamed and red and painful. Meanwhile I’ve had an IV cannula in the good vein for 3 days. 12 days to next chemo, and am hoping it will be useable again by then.
Hi ladies, I am new to the blog - I started chemo in September and am due my 3rd dose of FEC on 16 October. I am already dreading it but trying to keep occupied with other things in the meantime. I sympathise with you all, I have been going through similar situations. The nurses have had trouble finding my veins and as I they are unable to use my right arm, I end up with 3 attempts each time in my left hand. On both occasions I have been very sick for 24 hours, the first time the hospital forgot to give me my anti-sickness pills therefore it was a shock and the second time was just as bad - it may have been the steroids, I don’t really know. The only advantage is that I have lost 1/2 stone and now I’m eating everything - like most people my tastes have changed and I just had a bag of crisps which is naughty but mostly I am continuing to eat healthily. The treatment is back-up for me, I had bi-lateral surgery with reconstruction in June and have had complications regarding the reconstruction … that’s another story , if anyone else has had problems I would love to hear from you. This now means that I have to have further surgery on my right breast next year, after having endured 6 operations in total, I can’t complain - my breast surgeon saved my life and has been fantastic. The left breast in contrast looks amazing, almost like a normal breast but with no feeling. The right breast still feel numb and sore at times as well as my arm, next week I am being fitted with a prosthetic breast - I hope it’s light in weight as I cannot wear any bras at the moment, they are too unconfortable. One more thing, my hair has almost gone - I tried the cold cap twice but unfortunately my hair was all piled on top of my head so when I went to wash it, the hair was so matted that I had to get my 21 year old daughter to chop it off. Now I look like my mother did at 80 LOL! Oh happy days! All the best to you all.
Hi Sukiem, good luck with the FEC. I’m due my third dose next week. One word of caution with regard to the cold cap - I have lost almost all of my hair when I may have been able to keep a good bit of it with a little more after care from the hospital staff. I know they are extremely busy but unfortunately they piled my hair on top of my head and advised me not to wash it for a few days. By the time I washed it, it was so matted that my daughter had to cut the whole bunch of matted hair off and now I’m left with practically nothing. Also, I would advise you to bring your own hair conditioner. Good luck.
