@how are you feeling? I keep thinking about you and how you are coping with two little ones. Mine are 11 and 13 so much less hard work physically. We’re you ok after your injection? Good that you have lots of support. I am trying really hard to accept offers of help. It’s usually the other way round so it feels quite alien. My friends have made a rota to drive me to chemo and some have batch cooked things to go in the freezer for the family.
Hope you are ok x
Also a quick one as just getting my daughter ready for a school camp.
I got a fringe from here:
they sew real hair onto a very soft band x
Quick reply for now - do you have any loratidine antihistamines? Take one a couple of hours before your injection. Some good evidence it helps with bone pain etc x
Thanks for your reply Amy, I am still 50/50 as to whether to give it a go, but for all the reasons you mentioned I’m wondering whether it’s worth the extra time and discomfort……I have really thick hair and it’s already starting to shed more than usual due to the stress of last few months!!
HMLL….can I ask you where did you get fringe pieces from? Glad to hear you have some help with your children from sis in law and friends, to take some of the pressure away from you. Hopefully side effects from injection with be minimal for you, keeping everything crossed!
Hugs to all x
@amy46 Thanks for checking in. First 24 hours just felt like the worlds worst hangover. Background nausea like early pregnancy, headache that wouldn’t shift and brain fog. Went for a moderate paced 5km walk and felt better for it.
My LO are 5 & 3 I’m a single parent but am lucky my s-in-law is staying first few days of each cycle and have good friends to support me.
Didn’t cold cap either, I’m embracing the hair loss and have a wig and a couple of fringe pieces for beanies. The thought of spending any more time in the day unit was enough to put me off and also the headaches.
Have just injected the GCSF so now anxious about the side effects of that and also as not feeling so bad is the worst yet to come? I did the fast mimicking diet for 4 days before chemo so am hoping maybe I’ve mitigated the side effects but the uncertainty isn’t fun.
How’s everyone else doing?
How are you feeling? Hope the first 24 hours were ok for you. How old are your little ones? Sorry if You have already said and I missed this before.
I felt pretty normal yesterday. I did quite a lot and am wondering if I overdid it. So hard to know! Trial and error I guess.
Hope everyone is managing to find something nice and happy somewhere in their lives this weekend x
i decided not to try the cold cap. I was already 90% certain before I saw my oncologist but she said i was welcome to try it but with EC it was unlikely to work for me. My reasons were these: I have really thick hair and I didn’t want thin hair
i like to exercise and I didn’t like the idea of only washing my hair a couple of times a week
i wanted to reduce any extra anxiety- will it work ? Is it working? Is my hair coming out? When will it come out? How much?
I wanted my experience in the hospital to be as pleasant as possible - this week they gave me a heated pad and a blanket abd I snuggled down for a sleep whilst I had the Paclitaxol infusion
i wanted to minimise my time in the hospital
I think it’s different for everyone though and I know of people who used it successfully
I have got an amazing wig and although I’m really anxious about the big shave next week at least I feel like I’m taking control x
1st day of Epirubicin and Cyclophosphamide yesterday afternoon. From the time of cannula to leaving was only 90mins. Feel like my tongue is like cotton wool but tingling and my head is like the worst hangover. No clarity of thought, slightly dazed. No nausea, not feeling hypomanic from the steroids either. All in all not shocking but the dread of what will hit at 24hrs post is making me feel anxious. Off for a walk with a friend to get some daylight and air, kids off with my lovely sis in law. Hope everyone’s doing ok x
Amy…..Great to hear second round of treatment went well yesterday. Can I ask have you tried cold cap?
Best wishes to all xx
Quick update from me, had my second Paclitaxol today. All went fine. No steroids or aprepitent for me this week as apparently the Paclitaxol alone isn’t likely to make me feel sick. Much quicker today. In and out 3.5 hours.
Main worry is some odd little stabbing pains in fingers but my oncologist said too early for neuropathy so maybe me being a bit paranoid! Xx
Hi . I feel exactly the same . . It’s lovely to chat on this thread to know we all can support each other
@Magenta59 I am so sorry you are having such a horrendous time. None of this is easy even when it is more straightforward so I can’t begin to imagine how awful it is for you. I won’t offer platitudes. Just know that I am thinking of you and understand in some small way what you are going through. Xxx
still no date for the biospy. Why there is no sense of urgency when you are dealing with someone with metastatic cancer, I don't know. They would not want to be in my place for sure! Spoke to BCN yesterday about all my worries. Theyare going to chase it up! Had ECG today, and yet more blood taken for pre-biopsy clotting tests. I am told to still attend the 3 scheduled pre-assessment appointments so that we are up and running when the biospy results come back. I reckon this will set me back a month! Waiting for the biopsy itself, then another week for the result; plus I am informed I will have to do nothing strenuous fro 2-3 days, and it will take a fortnight to heal! Unbelievable! I am fed up of being an invalid and if I feel up to doing something I will. Within reason Of course. I am not sitting around wasting another 2 weeks of my life doing nothing! Spending time with my horse is the only thing that gives me a break from all this! The discomfort from the cording and scar tissue never lets you forget for one moment what is happening to you!
Having awful trouble sleeping due to the whole rotten situation. All they say is "can your GP help with that?" I DO NOT want sleeping pills! The cause of the insomnia is the lack of progress with my treatment! Get on with it and I will be a whole lot less anxious! When I got the dates through 2 weeks ago, I was able to relax knowing it was about to start and was sleeping much better; now I am back where I was. Can they not see this? It's purgatory waiting for them to decide what they are going to do. In the meantime all the stress takes it's toll, mentally and physically. My head is in a whirl and I feel exhausted. Where does it end. Can't see me getting back to work in the New Year as planned-at this rate the new financial year is more likely. Self-employed and business on hold for another 6 months-that willbe 9 in total. Think I will be bankrupt before long=help from DWP is minimal, not to say unreliable. Still on the assessment rate after 2 months on ESA. I should be receiving more money by now, but clearly they don't like to rush anything through, despite the fact cancer patients should be fast-tracked. I depair!
Anyway, rant over. It all stinks!
Do take care and hope it continues to be manageable for you.
That's great news re your histology, and you seem to be recovering well from your surgery. So glad you don't need ANC-that is where all my problems have arisen! Seroma for weeks and now tethering and massive cording, despite doing the exercises religiously! It's so uncomfortable and pain shoots down to my elbow when I stretch! Seeing a physio Monday-hope they can help. This and the delay to my chemo is getting me down!
Take care now. Onwards with the treatment!
Glad you are feeling well, Amy. I start tomorrow with ec chemo. I am going to shave my hair on Saturday, I feel I have come to terms with it now. I know it needs to come off. My sister will do it or me. I'm hoping to send it to the little princess trust.
thanks for your reply. Change of plans for me, one of the kids tested positive for COVID so everything put back a couple of weeks.
Hope everyone goes along ok with treatments, I will check in to see how everyone’s doing.
Finally got my results today. Grade 2 tumour 35mm with a tiny 4mm hanger on. Clear margins and all 3 lymph nodes clear! 😊 Scar is looking good. I have good movement in my arm & shoulder.
Oncologist appointment on the 22/9 so I may not start my chemo until October. I'm having EC and PIX but not sure how many, as oncologist will confirm. Also having Herceptin alongside as I'm ER and HER2 +.
Dreading it but also want to get on with it and then it will be over quicker. The surgeons have been amazing. I'm so grateful to them all
@Magenta59 how are you doing? Keep thinking about you and hoping you are ok. Did you hear anything today about your biopsy? Xx
Wishing you lots of luck for this week. I think you’ll feel better once you get started. Everyone was so lovely to me at my first session x
@Lu_B glad you are able to enjoy things still. The pancakes sound yummy 😋
I have been pretty good today. It’s all relative and I definitely don’t feel my usual full of energy well self but I have to keep reminding myself I was am lucky to be as I am and not yet feeling sick or anything else. I’m sticking with my 2.5litres water and I had some acupuncture today too. My wig arrived so now I just have to decide when to bite the bullet and have my hair shaved 😳 Bit nervous about this to be honest. Kind of feels like it’s the nail on the coffin in terms of actually accepting that this is happening to me. Hope you are all ok xx
Hi there, I think the best way is to cross bridges as they appear on your way....enjoy the rest ignore the summer whilst you can. I even went swimming with especial suit and a “knitted knocker” before Chemo and gave myself trips to nice spots. My friends have been kind and hand around when they can. The Chemo phase is a new challenge, so enjoy the time after recovery from surgery. Had a lovely pancake breakfast out with family before first cycle as well.
Lost of love,
I am having my chemo talk tomorrow, bloods on Wednesday, Picc line Thursday and 1st chemo Friday. Feels surreal. I have recovered well from mastectomy and feel like I have been sitting waiting for dates as the summer has passed by. I feel life is on hold and at the moment, can’t see beyond now.
❤️Hang onto each other 👭 snd step by step you will get each other through with love understanding kindness snd 🤣 through the 😳 wobbled the 😢 where am I, remember look deep into your eyes when you look in the mirror, you are still there and still you always remember that ❤️it will try and take your joy, don’t let it ❤️ focus on the bell that you can ring the heck out of if your units have one. I told that bell each treatment I’d be ringing it soon, was something to focus on. At the trust I was at when the bell got rung everyone having treatments clapped and celebrated with them ❤️💕💕✨✨Shi xx
glad you're not feeling too bad. Some of the side effects sound dire, and someone told me that his father, who had chemo, said the first one is sometimes not too bad, but then the second cycle knocks you out. Fingers crossed you stay as you are! I hate being an invalid. Not used to sitting about doing nothing!
Still no news on my kiver biopsy. I just want it over with and to get a definite result for once. Sick of not knowing and feeling totally helpless. It's like we have absolutely no control of the rotten situation we are in, at the mercy of the doctors who can't decide what to do! I feel all this time elapsing since surgery will do me harm in the long run, as it has the potential to spread unchecked at present. Thus life expectancy becomes threateningly short. Have they any idea what we are experiencing? While they pontificate and order yet another scan etc, we are going slowly round the bend! Nothing pro-active being done, when I feel we should have started the treatment weeks ago. I can't sleep due to pain and worry. It stinks!
Take care and stay well.
I had my hair cut short some months back in prep for neo-adjuvant chemo which never happened. Chemo has been delayed by ongoing scans etc, to the point I have had to get it cut again. Still waiting-now for a liver biopsy! God knows when I will get my treatment. We are just spinning our wheels waiting yet again. I sent 6 pigtails about 9"long to Little Princesses. Thought they could make better use of my hair than I. A very worthy cause.
Its great that you did that. I wish I had but I had my long hair cut to my chin in a bit of a hurry. What other positives have you found? I’ve met some amazing people already. Xx
@Lu_B Sounds like you are doing well. It probably doesn’t matter what you eat as long as you get some calories in when you can. I’ve been making smoothies quite a lot when I can’t face eating solid foods. I put in frozen fruit, a banana, handful of kale and some oat milk and yoghurt. You can’t taste the kale I promise! X
Yes I’m trying to write down how I feel. I’m really anxious about some pain I have in my left little finger so didn’t sleep well last night. I’m concerned it might already be the start of neuropathy which was my biggest fear as it could be something that would prevent me from doing my job again. I had that horrible thing where fear becomes enormous in the middle of the night.
Got up to take my daughter to a party and managed a very short run which felt nice to do, just being outside doing what I usually do albeit slowly. Just been back to bed for a nap though!
this is my chemo schedule and type as well. I am on day 6 of first cycle. Now I know I will be tired for a few days and need to pace myself. But already started eating more(need to rush and eat when I feel hungry). I am eating a lot of white bread and butter but has noodles yesterday.
Hi, I am trying to keep a dairy. Today is my 6th day after EC chemo and feeling super tired....
not much nausea and foggy brain....
Sounds like you’ve had it really tough. It may well be something ends in your liver. It looked like I had a second tumour behind my first one but it turned out to be something called a radial scar. It’s the not knowing that creates the most anxiety- I really feel for you.
So, day two has been ok. Did a 5.5km dog walk this morning and family friends have been for the day which was lovely. They brought all the food and cooked so I didn’t have to. No specific symptoms as such although I occasionally feel a bit of a pain in my fingers or toes but I’m not sure if I’m imagining that. Just feel slightly odd, a bit disconnected or slightly spaced out. And a bit lacking in my normal energy levels. I had the second injection of filgrastim today. I took loratidine antihistamine a few hours before which is meant to reduce the bone pains associated with this and so far I seem ok.
I only took half the dexamethasone steroid today as my oncologist says that would be ok as long as I don’t feel sick.
So, take home message from
me tonight is that so far it hasn’t been as bad as I expected! Amy x
❤️HR25 it does help because you decide what happens to hair and when ❤️ and it helps so very much little Princs trust ❤️ lots of us have done over the years and others have had friends and family who did brave the shave donate theirs in support too ❤️💕💕✨✨Shi xx
A brilliant idea and I decided to do it after realising that I wanted to take control of my hair loss before it started.
I needed a haircut so had a short one and had my hair cut off as a plait and then sent it in. It’s a small personal symbol of my approach to breast cancer, I’ll find the positives to help deal with the negatives xx
❤️Do please consider little Princess trust for hair donation if you have enough length ❤️helps make a wig for kid ❤️ turns Negative of loosing locks into positive as goes to help a child ❤️ hairs not wasted then ❤️💕💕✨✨Shi xx
Hi Amy, Shi and everyone here,
I have had a referral for counselling and will see someone next Thursday. I think it will bw very helpful. They work out of the Magnolia Centre at York Hospital, who are treating me, so will at least know my case beforehand, and will of course be used to Talking to others like me. I just can't get any peace of mind at present. No news on the biopsy-sooner rather than later would be good! Went to see friend yesterday who are my support network. One whose husband had bowel cancer totally gets where I am coming from, and it's very useful to share his experiences. He totally gets it! We had a good discussion about the latest developments. Back on June 10th I had bloods taken in readiness for my surgery. These came back with an elevated LFT and low Vit D levels. Was on Vit D high stregth supplement for 9 weeks. Recent blood test is now showing everything is normal. I also had a full week of flucloxacillin for a post surgery tissue infection. We are trying to explain all this and are thinking I perhaps had, earlier in the spring, a inor liver infection, maybe eve a small abscess-the lesion is only 17mm-which caused no symptoms, but showed up on the June blood test. Maybe it is scar tissue theyare seeing and not a liver met? It can't still be an ongoing abscess as the LFT would be showing raised levels of white cells, etc. This conversation with my bestie has given me hooe that they have actually got it wrong, and maybe it is not cancer after all! 3 scans have not given then a definitive result. Don't really want this biopsy but hopefully it will finally give us answers and I can get on with chemo at last. The chemo may even change to a less harsh regime. Who knows? I will just have to keep waiting a while longer, and hope and pray it is not what we fear it to be.
So trying to view things from a different perspective now. Been doing some meditation and adding yoga exercises to my post surgery stretching. I want to be as fit as I can before it all starts, and have a bit more time to go and ride. My pony is being such an angel, she seems to know all is not well with me. Her whope personality has changed. From being a bolshy and impatient mare, who never wanted a lot of fuss, she is so calm, loving and kind now. They say animals have a sixth sense about illness like this and I totally think it's true. My equine therapy and pals at the yard are keeping me sane! Well, almost! Thought I was losing it Thursday! Funny how you feel all these emotions and they change on a daily basis!
Hoping the counselling helps with the anxiety, and perhaps puts me in contact with a group of people like myself-there is a Cancer Care Centre right next door which I am going to investigate.
Good luck to all of you. Amy I hope you are not feeling too ill from your chemo. I am dreading it, yet can't wait to get started with it!
Take good care of yourselves, Jane.x
So pleased to hear things went better than you were imagining, ( nice touch with the goody bag!)…hope you slept well and continue to feel ok.
HMLL….sounds like you are getting yourself well organised for next week, I went crazy and cut a chunk off the length of my hair, I feel by going to my hairdresser it makes it all too real ( ridiculous I know, but that’s were my mind is at the mo )….wishing you well for next week, will be thinking of you.
hugs to all xx
Thanks for the update. I’m doing Epirubicin and Cyclophosphamide on Thursday. Starting to brick it now, about to get real keeping myself busy organising so I don’t sit and think about it.
Had my pre chemo crop done yesterday and enjoying rocking some funky hair. Finally managed to get the old gels off my nails & used the cuticle eraser stuff last night, by massaging it in it avoided using traumatic methods to push the cuticle down risking introducing infection.
It’s the fear of the unknown that’s doing for me right now, 4 fortnightly cycles of dose dense EC with GCSF. Single parent of 3 & 5 year old and 6th birthday to sort day 3 of second cycle. Just whether or not I’ll be able to function anywhere near normal level is giving me the fear. But I’ll only know when I know!
Hi, so quick run down of my day.
it wasn’t nearly as bad as I expected! In fact I had quite a nice time.
my nurses were lovely, I was given a big bag of goodies from a lovely local charity when I arrived: hand knitted blanket, nail polish, face mask, mouth wash, bubble bath, lip salve, a fan - you name it it was there!
I had both Paclitaxol and Carboplatin today. Both went in fine. It was a bit sore when they accessed the port but I think that’s because it’s still a bit bruised.
I was there about 6 hours but that’s only because I had to take an oral med for my stomach 2 hours before the chemo and next week they’ve given me some to take at home.
When I got home I went for a short walk with the dog and had supper. I feel ever so slightly odd but I can’t work out if it’s just because I am tired. The only symptom I have is some odd little pains all over my body that feel like an occasional pin prick.
I drank loads and loads of fluids today so hopefully that will help.
Jane, that sounds awful I’m not surprised you are having trouble coping with the anxiety. Do you have something like Maggie’s centre where you could find a professional to talk to? I am having some counselling starting in a few weeks. The other thing I found really helpful is a book called mindfulness for health. It might not be your bag, but I found some of the concepts if it useful to help me cope with acute anxiety xxx
❤️❤️magenta 👭👭 please do try the someone like me service Breast Cancer Now offers and also use the number to speak to a nurse ❤️❤️ do go to your Pals office too and explain what’s happening with delays snd the waiting, they will investigate. Keep talking and reaching out on here too, others will be along with 👭 and any words of advise soon too ❤️ 💕💕✨✨Shi xx
Hi Amy and all the september group, I may have jumped the gun joining the September thread, even though all my appointments were scheduled to start next Friday. I had a liver MRI last Friday to check out the lesion that they believe is secondary BC. Result has come back inconclusive yet again. I am getting used to hearing this now: every scan has ben the same-"there is something there but we can't decide what it is". So PET/CT and MRI have given no definitive answer. Medic who interprets scan says he thinks it could be an ABSCESS!!! How is this when a LFT has come back completely normal? I have not got and have never had any symptoms of liver trouble. But I now need a liver biopsy to rule this out, when I clearly have no abscess. Blood test would not be normal if there was an issue with my liver would it? My team think this is incorrect but have had to postpone my chemo until I have had this biopsy and the results are in. Plus I need time to heal from that also. So I am looking at 3-4 week delay. Just losing it here. The stress is finally breaking me. I have an unusual and aggressive fast growing cancer and no-one is stopping it doing as it pleases. So scared. By the time I get my chemo, 3 months will have passed from my surgery. I know they need to get it right, but this seems an awfully long time to be left in limbo. Has anyone else had this happen with inconclusive tests and scans? So I am no wiser as to what is in my liver and now have to have an invasive procedure I could well do without.I am enough discomfort with scar tissue and cording issues after ANC. But they just expect us to accept everything they throw at us joyfully. This is not a trip I wished to embark on, and I feel like jumping off the boat at times. Will need a shrink before chemo starts at this rate! Trying to keep a sense of humour but really struggling now.xx
Can totally understand the jittery tummy…..I’ve got it already just thinking about what lies ahead! Will admit to feeling totally petrified about the whole thing….fear of the unknown is a horrible thing……I’m imagining getting every possible side effect, can’t switch off from it.
Wishing you well for today Amy
hugs to all xx
I am quite similar to you. Clear lymph’s, oncotype intermediate, preventative chemo. My scheme is Epirrubicine+ Cyclophosphamide.
I am happy that letrozole is out for a bit though :).
I am on day 3 after chemo and a few symptoms ( nausea( never vomited), but tired, but woozy...). Headache only on first day.
I hope your chemo is mild.
Lots of hugs!
@amy46 Good luck today.
I have an appointment with my oncologist on the 22nd September so I'm presuming chemo will start some time afterwards. It could start in October and by then you ladies will be experts.
I too knew I'd be having chemo from the start so I've been able to read, plan and mentally prepare myself for it.
I thought 2020 was rubbish but 2021 has really topped it.
Hi to both of you. I’m up early today with a jittery tummy about my first chemo dose. Did they recommend you both mastectomy rather than wide local excision?
lauren, how are you finding it being on the other side of the fence? I’m finding it so strange. In some ways it’s good as I don’t get freaked out by hospitals etc and I think it really helped understanding what was happening and being familiar with the environment when I had my port put in, but other times it has been awful because I think I understand implications of things that maybe I’d think about differently if I was a non medical person.
It feels so strange to think that in a few hours I’ll be home again and waiting to see what effects I will get. Anyway, I’m off for a cuppa now and I’ll fill you in later about how I get on. I expect it won’t be nearly as bad as I expect! Amy x
Hi! I am basically the same. I had a mastectomy last week with good margins and cleared the nodes. I also am going to do chemo. I was told this from the get go so I have had time to digest everything and get my mind right. I had a good friend tell me (breast ca survivor 20yrs) that even if you don’t think you need it you can’t go back on that decision once it’s too late. It’s words I take to heart when I want to argue the fact. (I’m also an ICU nurse so I’m prone to that 😁) much love to everyone going through this
Hello to all on this thread,
I was advised preventative chemo after high oncotype result…..already had mastectomy 7weeks ago, surgery was successful in so much as clear lymph nodes and margins so was expecting to go straight to letrazole, so chemo a bit of a shock add on. Will be up to 12 weeks paclitaxel starting in a couple of weeks. Anyone else on same?
Sending good wishes to all x