I’ve now had 13/15 radiotherapy doses and am having a few “lower” throat issues, it is a known side effect and should clear in a couple of weeks. I think it’s probably my oesophagus, started as my actual throat feeling a bit like it had a lump in it on Monday, and by last night the pain was a bit lower and it’s sore swallowing but I can still eat and drink. I’m just using paracetamol to keep the edge off it. I spoke to them when I went in this morning, and they just said to keep popping the paracetamol every 4 hours but shout if it gets worse. I just thought I’d mention it for those of you still to start radiotherapy, so if you feel anything similar you don’t panic
I think my nails are ok, I have been keeping them painted, and I know the top half of my finger nails is very yellow but so far they’re hanging in there and I haven’t had any major signs of peeling or breaking (I think 2 have split since August, I can live with that). Oh the6 do have white spots on but its’s in the yellow section which I think is the chemo bit growing out.
Taste is fine now, though I haven’t braved my lemon squash yet, I was so upset when that started tasting funny
@pips12 I hope hubby is doing ok, I had shingles as a teenager (apparently not that common , but I don’t believe that as my daughter, sister and niece all had it as teenagers too ) and it’s not pleasant.
Woohoo that’s my radiotherapy finished . So I like to think the physical work is now done - I know the tablets will take some getting used to, but as the lovely nurse said to me this morning I can think of them as vitamins . But no more regular jaunts to the hospital feels good! I have a video call next Thursday to discuss abemaciclib (and letrozole too I presume), and a phonecall on the 5th as a radiotherapy follow up to check how I’m recovering. I also believe abemaciclib involves monthly bloods but what’s that compared to what we’ve been through?!
Anyway I am on a high and really looking forward to getting my life back xx
@bramble1 Aww I’m so happy you’re done with the more physical treatments! And thanks for the heads up around the throat stuff with radiotherapy, I’m starting mine on 10th Feb so that’s really good to know that may happen.
I think I actually may end up on Letrzole, I’ve been prescribed Tamoxifen just now but my bloods have shown I’m post menopausal & have an appointment in a couple of weeks I’m assuming to discuss that.
It must feel so nice to be at the end of it all, I’ll be finished my active stuff in March and it’s nice being able to start to look forward!
I attended a younger women with breast cancer support group near me a couple of weeks ago, and one of the women there shared an analogy she heard from a moving on course and I wanted to share it here as it really resonated with me.
When we find out we have breast cancer, we’re at the base of this massive, daunting mountain. There’s no way we can get up it alone and we need help, so we have this team of experts to guide us to get us to the peak. When we reach the peak however, they need to go back down and help other women up who are starting at the base so we’re left alone and we have to navigate our way down the other side. We don’t know what’s on the other side, there may be poor visibility, we don’t know the correct path down to base camp and actually, the base camp we were at before doesn’t even really exist on this side of the mountain so it can be a very scary place to be. So we have to navigate down on our own, and we may have to stop and start several times, we may have to come back up paths we went down which were wrong, we may stumble, we may feel a little lost at points. But with time, we’ll navigate it, we’ll grow, we’ll trust ourselves again and eventually find ourselves at a new perhaps even better base camp than before.
I really like that, and it resonated with me and I hope it will with some of you. I think as I’m reaching the “top of the mountain” that while I do have some nerves about how I’m going to be coming down the other side, there’s also a lot of excitement about it
@louise15 I spoke to a radiographer on Thursday and apparently the oesophagus is very sensitive to radiation, and it is often “caught” as the machine moves around. But it should be fine in a week or so, but she’ll check I’m ok when she phones me on the 5th. In the meantime paracetamol, and apparently peptabismol (if I spelled that right) is good too as it coats the oesophagus and helps with swallowing issues
Ending treatments is quite the release and I had a moment of elation knowing I was done with the regular trips to the hospital. I am tentatively stepping back into life but I am so very tired a lot of the time.
As @louise15 excellent analogy suggests its a scary and lonely place, most people around us have moved on as you are now “through treatment and back to normal”.
We all know we have to learn to trust our bodies, recover physically and mentally from what we’ve been through and I don’t know about you all but I am deconditioned after 11 months of a different life. I need to potter on and try my best, even if I’m in bed early every night after managing to simulate a normal day.
@louise15 That analogy is a really good explanation of moving on after treatment. I’ve been feeling rather lost and a little scared since finishing my treatment. My last chemo was on 23rd Dec, so initially I had the excitement of finishing wrapped up with Christmas fun. But when that was all done with, I started to feel lost and alone. I hated my weekly trips to the hospital, but I’ve now realised I felt safe knowing I had medical professionals looking after me and that safety net has now gone.
I was looking forward to feeling like my old self again, but I get so tired when I try to move back to my pre-treatment routines. I’m slowly realising that I’m actually becoming my new self and trying to concentrate on how good that will be. There’s no point just trying to move on from it all and leave it in the past. I have to learn to take things easy, be kind to myself and trust that what I’ve been through has set me up for a healthy future. I’m not there yet, but I am starting to see things in a new light and I’m hoping this will help me to feel less lost and scared.
Good to see how everyone is getting on and that surgery, chemo and radiotherapy is either under way or finished! I’ve had a very busy January - I’m 2 weeks into my 3 weeks of radiotherapy so will be glad to get that finished next week, and I’ve also been to see the Gynae consultant about having my ovaries removed. I’ll be having a hysterectomy on 18th Feb (weirdly my mastectomy was on 18th June, both a Wednesday!) after the consultant suggested it and we went through the pros and cons. So I’ve had to have a pre assessment and an iron infusion to get me surgery ready. I’ve started Exemestane and hopefully had my last Zoladex. Back to see oncologist early Feb to do consent for Ribociclib which will now be delayed until after my surgery. I’m really hoping my implant holds up with the radiotherapy as I do not want to have any more surgery once this is done. Is anyone else thinking of preventative gynae surgery?
Roscoe is keeping me very busy and completely distracted from everything so it’s been a pretty okay month.
@bramble1 good to know. My throat was starting to get a bit sore on Friday at the end of week 2, but is feeling better now. Hopefully it stays that way! xx
@louise15 It’s all still surreal for me to be honest. I had a meeting at the hospital where I had my chemotherapy and they were pleased with the results and how I am healing post surgery. Signed my paperwork for radiotherapy and they said I have to have the remainder of my phesgo injections, so another 12 (total 18) which will take me to autumn as they’ll follow the same as my chemo did so every 3 weeks. I have my radio planning meeting tomorrow and hopefully the dates. They said I’m probably menopausal but that they wouldn’t recommend hrt but they didn’t stay on the subject too long for me to ask a great deal. The analogy you posted is perfect thank you. One I think I’ll keep revisiting as this goes on.
Hi @pips12 I’m pretty much back to normal taste bud wise, although chocolate of any kind and yorkshire tea still don’t taste the same for me. Wondering if that’s here to stay. Is there anything specific that you can’t taste?
Hi @bramble1 thanks for the heads up about the sore throat, I noticed it on the radio paperwork I had to sign as a side affect. Glad your radiotherapy has finished, wonderful news. Are you painting your own nails or having them done. Im craving a salon visit as it’s been months, but wary! I hate the peptabismol advert (so damn catchy) but cringy to watch, Think I’ll get a precautionary bottle in!
Hi @toad the tiredness still is something else. I really feel it the day after a normalish day of usual activities with my sons. Busyish day yesterday and I’m bushed today. You’re right though, need to be kind to yourself and give it time. It will get easier, that’s what I’m telling myself.
Hi @sunshine-smile How is the radio going? Have you had any side affects like sore throat?m How are you feeling about your hysterectomy op? I’m waiting on genetic testing to be done to see what that says. Is yours preventative?
Hi @emma-jayne I’m very slowly starting to recover my taste, but I do find that tea still tastes really strange. I’ve had to try stronger tastes things like piccalilli and strong cheeses just to taste something. Obviously hoping its not permanent.
I contacted my breast nurse last week and she said 10 weeks is too long to wait to see the oncologist as they usually start radiotherapy within 12 weeks of chemo finishing, so she would contact the appointments team on my behalf. I’m hoping to hear back from them at some point.
Today Tuesday, I’m on my first outing on public transport since August, as I’m going to visit my son and family. Its feels really strange getting a bus and train and trying to avoid people at the same time, but also an achievement two weeks after final chemo.
Strange how it feels like an achievement to regain our taste isn’t it and how other people just don’t get it. I got to a stage towards the last two chemo sessions where even simple things like pasta and rice, I didn’t like the texture as well as the taste. Thankfully that went away quickly. Totally agree with the pickled food and anything with a stronger taste, although not so much chilly flakes which I tried in a bolognese sauce and then couldn’t eat it!
Good to hear your breast nurse is on it and will contact the team on your behalf. Hopefully you’ll hear back very soon.
How was the bus after? Such a lovely thing to go and visit your family and definitely an achievement. I hope you had a fab time.
Had a great time. Used my bus pass for the very first time so felt like a proper old person. Tap n’ go, weird not paying! Train journey not long as we all live in Essex. So lovely to get to do normal things again, and spend more time with my granddaughter who is nearly two. Such a nice time being a nana again, I missed it. I know I was the one who almost self isolated for 24 weeks, but I wanted to protect myself from unwanted illnesses whilst on chemo. My family understood and repected my decision but it wasn’t easy. I look forward my energy levels gradually going up and more train journeys in the future. Xx
Hi @emma-jayne that advert is just the worst . I think back to the catchy jingles of the 80s and wonder where it all went wrong!
just paint my own nails. It’s very odd, I have been a serial nail biter almost all of my life, not really bad but my nails would grow and I’d nibble them (just the white bit) off and then they’d grow again . Anyway with all of this going on you’d think I’d have been chewing them constantly but I haven’t bitten them at all, so I’ve been happily filing and painting them since about May . I’m quite proud I’ve managed to achieve that while everything else has been going on - just hope I don’t slip back into old habits when I am back at work….
Yesterday I got a phone appointment through for 5th Feb (radio dept) which I was expecting, and another one for 5th March (breast centre). I have a video call tomorrow morning with oncologist, and blood tests on Friday -I think both those are related to starting abemaciclib. But I have to admit I am currently feeling very much like shouting “leave me alone” .
I’ve also now got a bit of a bumpy rash on the sides of my face - upper cheeks/temple area. The lady in radiotherapy last week said skin issues are chemo related as I have a couple of dry patches too, so who knows how long they will take to clear up but it’s frustrating as I’ve never had skin problems even as a teenager . I might ask oncologist about them tomorrow.
My throat is ok now, radio skin area is slightly itchy and a bit tender but nothing too bad I’m just keeping moisturised and drinking lots of water.
Just dropping in to catch up with all of your news. Loving to hear about the journeys out and about to visit family and building up to a more fulfilling life again.
Pacing for tiredness is something I am coming to terms with. Simple days still tire me out.
I had an end of treatment catch up with McMillan nurses and they said that it can take about six months to get back to a new normal relating to fatigue and recovery. I’m finding how tired I am for large parts of the day pretty difficult.
On the upside, its my birthday today and I have noticed tiny little eyelashes growing back to join my fluffy head hair. Good times.
Lovely to read all your news on our journey, how we are all navigating through this. I went into the office for the first time on Tuesday even though I have worked throughout my treatment from home. It was lovely to see all my colleagues and prepare to say goodbye in March as I took the decision over Christmas to retire, I am working up until the 31 March and then my new non working life begins.
I have an appointment with oncologist on 27 Feb and I am hoping my heart scan shows improvement and I can continue with the Herceptin injections every 3 weeks. I am a month in now with the anastrazole tablets and all seems OK so far other than a bit of joint pain.
I have some tiny eyelashes starting to grow which is very exciting and as I cold capped all the way through my hair is pretty much back to how it was pre chemo, can’t wait to colour it as I hate the grey it makes me feel old before my time.
Had my radiotherapy review and broke down, very unlike me, I don’t cry easily but the Nurse said it is very normal and will probably happen more as we have been through so much and the realisation is just starting to hit.
Looking forward to Spring and the better weather. Have a good day everyone xx
I have almost enough lash length to try mascara which is exciting. Work is fine but i feel, weirdly, that i am at risk of getting less fit now than i was on chemo due to work ….
Hi @emma-jayne sorry for the late reply, I’ve struggled with the last week of radiotherapy and was just head down to get to the end. I can’t really explain it but tiredness mixed in with an emotional low, but had my last one yesterday. Spent the rest of the day in bed feeling physically and emotionally exhausted. I’ve had a little bit of a sore throat on and off but nothing major thankfully. I have been told things may get worse before they get better, but mostly it’s just the redness on my chest which is a bit sore and a bit itchy, but manageable with cream.
Not really sure how I’m feeling about my hysterectomy now it’s the next thing on my list . I want it done, but not sure how I feel about surgery again so close to the radiotherapy. I think in the long run it is best to get it out of the way sooner rather than later so my recovery can start properly. It is preventative. My genetic testing was negative so nothing noted, but the genetics team still consider me high risk due to family history (and they only test the most well known 7 genetic abnormalities, and there are hundreds). I’m 50 this year and don’t want anymore children so saw the gynae consultant about having my ovaries and tubes removed. I think ovarian cancer scares me more than what I’ve already been through. They agreed straight away and it was the consultant who suggested a total hysterectomy. I’m very confident in the consultant as used to work with her so just went with her suggestion (after discussing pros and cons). Hope you get good news from your genetic testing xx
Like many of you I broke down today. Had an Oncologist appointment about next stages, and unfortunately I need further surgery before radiotherapy, and then hormone tablets along with cdk 4/6 tablets possibly, which will require regular blood tests. Seems such a long way to go yet, and emotionally it’s been too much. But maybe a cry from time to time is needed - we are all going through a lot. Still have 2 more doses of weekly chemo to get through, as my treatment was paused last month due to beinh unwell. I’ve started to feel a bit of peripheral neuropathy in my hands and toes as of yesterday. Has anybody else experienced this? Does it go away after chemo finishes?
Glad to hear so many of you are doing well on your next stages xx
) and it’s not pleasant.
. So I like to think the physical work is now done - I know the tablets will take some getting used to, but as the lovely nurse said to me this morning I can think of them as vitamins 
. I think back to the catchy jingles of the 80s and wonder where it all went wrong!
. I might ask oncologist about them tomorrow.