Thanks for your kind reply. Yes we are at the mercy of the experts and put our trust in them and hope for the best. Seems like it is a long haul to get well and then never ending treatment to hopefully stay well. I never imagined 4 months ago what was in store. Feel my life has been on hold since May 6th! The endless waiting between appointments, scans, results, consultations is what really grinds you down. The fact that you have this aggressive disease gnawing away at you and yet nothing is being done to stop it, can drive you crazy. I know they have to get it right, and it can be a lengthy process, but hell it is demoralising. They know so much about it from the initial biopsies but it has taken 4 months to get the chemo I should have had at the beginning of June! Just because of 1 inconclusive result. You wonder why they couldn't just treat me for what was conclusive. I just wanted to get on with it. Now facing a lifetime of treatment-it might have been different. Who knows. Life will certainly never be the same again! I have had another sleepless night and this is all I can think about! Not sure how I will cope financially if I can't get back to at least part-tie work. DWP drag their heels with ESA which is all I can seem to get. Have been on it almost 2 months, and still only on the basic payment of £74.70 a week! I used to earn over £300 a week. Where do they think a piffling amount like this gets us? All they do is hassle me constantly for fit notes, even though they know my situation and should not be doing this. I have more than enough stress as it is! There is no safety net regarding sick pay if you are self employed. Yet we pay our taxes and NI like everyone else! Okay rant over! It's all so frustrating. Hope your results come back soon and it's good news. It's hard trying not to look ahead, and I am sure I tend to overthink things. It can't be helped. You can never forget it for long! I try to keep busy to distract myself and going to my horse is about the only thing that gets me away from it for a while. Once I am on treatment, I expect this will probably not be possible to any great degree. I am expecting the worst, and hoping for the best re.side effects! I am not expecting it to be a breeze.xx
@Magenta59 You see to have been messed about something shocking. We put our trust (and lives) into the medical team don't we, what hope do we have if they can't get it right.
I face continued treatment too as I'm HER2 +, reading about side effects doesn't fill me with hope but there are odd women who persevere and the side effects don't appear too bad. Also different brands of tamoxifen seem to have different side effects.
Ive learnt to not think too far ahead. I'm waiting for lumpectomy results and a plan for chemo. After that is radiotherapy but I'm not thinking that far.
My colleagues will all return to school next week but I'll be stuck at home with a diary full of hospital appointments no doubt.
I thought I'd be back teaching by the end of January but I have a feeling it may be more April.
Please keep posting
Will hopefully start my chemo 8th September. Docetaxel with Phesgo for 4-6 cycles dependent on how it works. Then 3 weekly Phesgo with Letrozole for life or "until it stops working" as my oncologist put it. It has been a rough few months since my B.C. was confirmed in early May. Neoadjuvant treatment to shrink my fairly large tumour was cancelled as they couldn't decide on whether it was HER2+ or not, even though we knew it was invasive, and Er/Pr+. My surgeon only found out from speaking to my BCN after she called me to find out how the oncologist appointment had gone, that the chemo was now off. Pretty annoyed that they hadn't informed her. We had been expecting a treatment plan. I went home dazed and confused and our weekend away was ruined. She did insist the MRI she had booked went ahead, which showed my tumour to be around 30mm, not the 40mm that the ultrasound had picked up. So we just jumped right in with the surgery. Therapeutic mammoplasty with ANC. This went well and the results are quite satisfactory even if my new perky breast is a full cup size smaller. I was promised a reduction to the other to make me symmetrical. Complications with a seroma, large dodge of scar tissue in my axilla and now cording, coupled with the fact that various biopsies scans show I now have liver Mets, makes me wonder if that second breast surgery is something I should just forget about. Treatment and getting well again is more important. I can just stuff my bra with extra padding! What gets to me most is that they have now decided after more tests on histology samples that my cancer is actually HER2+ after all, so my upfront chemo would have been appropriate after all! It would perhaps have shrunk my tumour down so I would perhaps only needed lumpectomy and maybe I wouldn't be facing secondary B.C. in my liver. I just can't help thinking my outcome would be different. But nothing can change things now. Treatment sounds evil, just like the disease, but I just have to roll with it. It dismayed me that I will need treatment for life and it may mean more chemo in the future. The side effects will never end for me and I wonder what quality of life I will have; going on other ladies' experiences it sounds like it is debilitating. I was a fit and active woman, running my own cleaning business, and tending to my horse twice a day and riding her about 5 days a week. Not to mention running the house and caring for my family. I feel okay at present and am back to doing some of my normal things, riding gardening etc but not back to work as appointments make it impossible to cope at present. In a few weeks I will no doubt be knocked out by treatment I can't even see the end of. No idea when I will get back to work as it is very physical and tiring. I will need to pace myself I think. I have wonderful clients who are supporting me but that can't go on indefinitely. What looked like 6 months off is more likely to be at least 9. The whole process is now getting me down. I was positive at first but it is becoming more difficult to stay so. I have nothing but anxiety and can't sleep due to nerve pain from the ANC. Where does it all end? Hard to see light at the end of this tunnel......
I read your blog, thanks for sharing it. So good to read people who have experienced this and come out the other side.
Hello, I am new on here and this sounded just the same as my situation - Licap in June, expecting radiotherapy in August and back to normal by September with few people ever needing to know - until the lymph node tested positive and now six weeks off has become 8 months or more of disruption to life. i start chemo tomorrow morning, so it's good to see the thread of comments here from all of you. Thanks. I am have spent three really busy weeks trying to get work done and jobs handed over to other people and home and garden in a place where I can do less for a while. There is so much to get done, but I hope I can be in a place where I can leave things in order while I focus on the treatment and dealing with it well. best wishes to everyone else on here.
Good luck tomorrow Jenny. Hope it goes as smoothly as possible. My oncologist said I’d be able to drive myself to and from my chemo appointments if I wanted to so hopefully you’ll feel ok tomorrow.
Hi everyone and hope you are ok. Here’s the usual post I put up to start the thread just to make sure you have all the info. It’s a scary time but gets less anxious once you’re past the first dose.
You can ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
If you’re new to the forum, here’s the “Getting Started” advice:
Your Macmillan’s at your units might have some pre loved wigs where you make a donation and if you have a luvyababes near you, they do amazing range of wigs and they let you try in privacy of changing room ❤️ Go for one where you still see you and what you feel comfortable with ❤️ Although you might go wig shopping crazy when on the steroids you have during chemo 😁 just a tip some of us ended up with tinsel ones for Christmas and coloured ones. Big ❤️💕💕✨✨Shi xx
Hi Dogslover , i'm waiting for my dates but should start end of august going into september with 6 cycles of epirubicin and cyclophosphamide, i'm also feeling very nervous of what's ahead ( stressing so much about the hair loss ) but i've also decided not to have the cold cap i'm going to try the chemo beanies and order them today i might also look into getting wig but really not sure about that one. Sending hugs to you x
@amy46 Totally get you regarding the dying/bald comment. It's just bizarre how we think isn't it.
Ill have the port or picc if it's offered, I hate cannulas, they catch on everything and are just a hassle, plus I've seen what the chemo drugs can do to the back of your hands/veins.
Good luck with it all.
The make up course sounds good, I’ll have a look thanks!
I’m not doing the cold cap either. I’d already pretty much decided as I didn’t like the thought of only washing my hair once or twice a week. I want to be in and out of hospital as quickly as I can too. I’ve ordered a wig. Hopefully it will arrive fairly soon as I was planning to go for the big shave - I don’t much like the idea of my hair coming out in bits and bobs. I have found the worry about going bald really strange, one minute I’d be worrying about dying and not seeing my kids grow up, get married etc the next I’d be worrying about be bald which felt really odd. Not explaining that very well but I think you might get what I mean.
I’m going for the chemo chat and bloods tomorrow then my port. I’m really nervous about having the port done under local anaesthetic. It’s easier for me on some ways as I work in operating theatres so they don’t scare me but in other ways it’s harder.
I hope you are all feeling ok. Amy x
I did the make up one on Wednesday. You get a bag of goodies which they say is worth £200.can't wait to get mine.
Welcome, I had the same operation, with the lilap and axillary node clearance. Originally I thought I was having the operation and just Radiotherapy. But now its chemotherapy. I think that as bothered me the most. I thought time wise. I would be back to normal, but obviously with the chemo, it's a longer timescale, plus losing our hair. I've signed onto some, online courses, "look good, feel better", they do skin and makeup lessons, how to draw eyebrows on, body image confidence etc. So looking forward to that. They are free to sign up.
@amy46 I've found this forum to be a wonderful place to share thoughts, feelings, progress and listen to people's own experiences. Everyone here just gets it.
Im still waiting to find out about my lumpectomy results and cancer regime. Good luck for next week
Morning, I would like to join this group if that’s ok? I’m due to start my chemo next Thursday 26th August. I’m starting with weekly Paclitaxol with Carboplatin thrown in every third week. 12 weeks total. Then, if I can tolerate it I’ll have four cycles of Epirubicin and Cyclophosphamide every other week. If it’s too tough it’ll be every three weeks. I had a wide local excision 6 weeks ago then a Licap flap 3 weeks ago. It’s been such a rollercoaster. Only a couple of months ago I thought I was fit and healthy, I ran three times a week and took my dog for long walks every day. I’m a doctor in my normal life and it’s been really strange being on the other side of the fence.
It has definitely been the worst couple of months of my life, but there have been some good things too. My family and friends are being amazing. I have met some truly fantastic people, from the wonderful woman who tattooed my eyebrows (who would only accept half the normal price) to the nurse who held my hand and got me through the biopsy when they had just told me the lump looked like cancer.
I feel very low and tearful sometimes but I am determined to find some positives here even if I have to hunt quite hard for them.
My oncologist told me that some people breeze through chemo. Maybe some of us, or even all of us, will be among them. I don’t know any of you but I’d really like to think that as a group we can help each other through these next months xx
@Dogslover I've decided not to do the cold cap either. I think you lose a lot of your hair anyway and seeing it thinning and falling out day after day would just be too distressing. Plus it's supposed to be really uncomfortable and can add 90+ minutes to your time in hospital.
I also worry that there could be cancer cells not killed lurking in my scalp, probably silly but I'm not going through all of this for the cancer to potentially come back in 5 years
Of course, everyone is different.
Hi, thanks for replying, I start on the 1st September. Yes, it seems very real now, and feel the same, just want to start. Nervous about the hair loss, but have decided not to have the cold cap. Have you? X
Hi,I am doing the exact same regime as you but I start this Monday 23 August.Everything is feeling to real now!The last few weeks have been horrendous waiting for appointments scan results etc.I know everyone has to go through this awful time.Now I’m just relieved to be finally getting the treatment started.I’ll keep in touch and let you know how Monday goes.Do you have an actual start date?
I go for my results on Friday after a lumpectomy on the 2nd August. I'm presuming chemo will start sometime during September as long as I don't need further surgery.
My BCN told me my drug regime would be TCH - Docetaxel (Taxoterel) Carboplatin & Herceptin (Trastuzumab) but not sure if this will change when I eventually meet my oncologist.
Hi I'm starting my chemo, with 3 cycles of Epirubicin and Cyclophosphamide, then 3 cycles of Nab-paclitaxel. Anyone else starting in September and on this cocktail? Would love to hear from you x