Thankyou @jeml! Yes need to remind myself of the positives and keep pushing. The wee ones away for a sleepover so we can have a chilled nice my partner has a sore throat so trying not to catch anything else. But my side effects have been sore bones cause of the injections, really fatigue i would say yesterday and today ive been better. Upset stomach and sore mouth, just got that horrible taste now. But next time im taking it as a positive i know what i will need for taking home for my tummy , the bone pain and mouth wash for the sores.
Well i hope you have a absolutely fab night you deserve it xx
I got IBS after chemo in 2018. I do wonder if due to the chemo. I got lots of tests done and nothing was found. I recovered from chemo then afew months later it started. I will never know but not been right since. It could be theLetrozole effects though as my fist was just hormone receptive.
@jeml you look fabulous. So pleased you are feeling better and getting out and about. I went to the Bath Christmas market earlier this week and began to feel festive such a difference to this time last year nearly finishing chemo.
We will be with you before during and after your operation. I had a bilateral lumpectomy so can’t comment on your surgery but all I can say is do your exercises, rest as much as you can and be kind to yourself. It’s a big operation and takes time to heal.
@shannon27 Sorry to hear you’ve had a rough week. I will keep repeating this. Chemo is not easy but it’s doable. We will al be there for you aswell. Did you join the November chemo starters thread? It’s a great support network for others exper hemo at the same time as you.
Hope everyone is safe after this very stormy weather. Wind hasn’t stopped since the early hours here in South Wales. so bad both Severn Bridges were closed today and that rarely happens. Stayed in apart from 3 dog walks in the wet weather gear.
Thank you ,yes i joined the November chemotherapy starters i will keep posting.
Feeling better today been a couple of 15 min walks. I ended up getting antibiotics and fluid through a drip on Tuesday so i think that may have knocked me a little aswell
@jeml you are stunning!!! Well done for getting out and about. Keep us updated how you feel on Phesgo only. I have only 2 more chemo to go and starting to wonder how Phesgo only makes you feel.
Do you need to take steroids and filgrastim still? How are the side effects xx
I hated that taste in mouth! I think its acid i use to take rennies to help me. Also if you are having stomach issues you can ask your dr to prescribe you something i had lansoperazole to help me.
I just read you had antibiotics via iv? Have you been in hospital then?
I havw had a busy weekend doing stuff with little one. Was nice to get some normality… eaten like a pig though x
Aw thank you i had a fun weekend. Just this week to go and then i will be getting ready for my op!
I feel okay, a little tired though but had a little bit of insomnia going off last couple of days… not sure why… maybe i am worrying about my op? Well i know i am. Its getting closer and its just a real weird feeling to be going to sleep and waking up boobless.x
Any advice on what i need to get me through a double mastectomy? My nurse told me to get some vest tops wich is on my list of things… well its literally the only thing on my list! they told me to pack a little bag incase it ends up being an overnight stay… my little one is going to my mums for about 6 nights at least till i get my drains out… and it makes me feel sad. Going to miss her loads. But she is always on go and jumping about so i know its for the best! Will get her back in time for xmas.
Take the painkillers they give you and do the post surgery exercises when you can, be guided by your own body. You’ll have to lie/ sleep on your back and I found a couple of pillows helped, some have recommended a V pillow but I made do with propping up a number of pillows around me.
Some of the others who have had a mastectomy might have others ideas.
I know it’s hard with your little girl going to your mum’s but it is so important. If she falls you won’t be able to pick her up. Have you got someone to help you. I needed my husband to help with showering for a few weeks with restricted movement (double lumpectomy).
@jeml You look fantastic! It’s great to show what it’s possible to look like in the midst of the most gruelling treatment and with a double mastectomy looming. It’s not how people would expect you to be looking, that’s for sure. It’s natural to be worried about it but you’ll be ok, I found it was nowhere near as bad as I’d thought it would be and I just wish they’d done it to begin with and I hadn’t had to have all those unnecessary ops beforehand. I hope you did get stuck into that bottle of Prosecco. I opened a bottle of Brancott Estate Sauvignon Blanc yesterday and after our lunch guests had gone, I laid on the sofa and read a book and got through 3 glasses. Ruddy lovely it was too! Come on, we need to have some treats here and there with all we are going through. I know it will be tough to be without your little one whilst she goes to your mum, but can you imagine what a lovely time she will have with her Nanna on the lead up to Christmas? I bet they’ll have a lovely time and you must just relax and watch Christmas films. Like you say, you’ll be back together again in time for Christmas itself.
@shannon27 You are on the path now. You will get there. I have been reading my diary from a year ago and can see how worried and scared I was, looking back. You too, will look back a year from now and smile when you see what you got through and how you coped. Last night my son and I had our annual ritual of putting up the tree and decorations while watching Elf. I had a moment during it where I silently gave thanks for how I felt this year compared to last when I was desperately trying to carry on as normal but with fear sitting on my shoulder as a constant companion. I am genuinely so grateful to be a year on now. But I am second in line after @jeml to give you a big hug. We all know exactly how you feel. I love the staff on the chemo ward at Royal Marsden and now when I go for my Phesgo they greet me like an old friend. They are your allies, as are we. We are all fighting it together and we are a formidable army.
@Linda_Corinne Thanks for letting me know you got IBS after chemo too. It makes me realise that it is quite common and that it’s probably what has caused mine. My boss always manages to ring me just as I need to bolt to the toilet. Luckily I’ve known him a long time so can tell him straight that I can’t listen to him or I will have to take him with me which normally gets rid of him! How are you now?
@naughty_boob I’m glad you have survived the storm because it sounded like it caused some real damage in Wales. That’s another outstanding list of advice and info for Jemma! How do you do it? It’s a gift.
@galdiolus I find the Phesgo on its own is absolutely fine. I don’t believe I get side effects apart from this annoying reduction in my heart’s ejection fraction for which I am getting all my results this evening in a meeting with my cardiologist and I wouldn’t have known about that if they weren’t doing regular MUGA heart scans. You don’t need steroids or Filgrastim for the Phesgo on its own, if that’s what you meant?
And now I have to brave the supermarket as I didn’t get a chance to do the weekly shop over the weekend. I’m struggling to think of new ideas for dinners. If I won the lottery I would employ a Thai chef and eat Thai food happily for the rest of my days. But I am dreaming and procrastinating so off I go.
@salbert thats brilliant exactly what I meant. I have two more TC Phesgo to go one next week and one in the new year. Feel like I am getting through this part of the treatment and then preparing for my mastectomy. Thank you for all of your great advice
Thank you @salbert yes i cant wait to look back on it in the past. I will get there and get through all of this all your words of support along with everyone elses really means the world to me just now its hard for others around me to know exactly how i feel but youve said it there.
That sounds lovely, just perfect i look forward to next year being free of all this and enjoying all the little things x
@jeml i hope you had a fab weekend with the wee one yes i was in through the day for antibiotics and fluids was home by tea time and had another 5 days of antibiotics. So hopefully next cycle doesnt knock me down again
So I had some good news last night from my cardio-oncologist. My heart is in tippedy-top condition and he said that if his heart is in the same shape at 54 then he will be very happy indeed. My Candesartan pill will just protect it until Phesgo is through in April and I should be able to come off it again. Amazing how a bit of good news can make you feel so much better in yourself. Here’s to good news for us ALL!!
I’m OK thanks. Having antib’s until 22nd/23rd then line can be removed. Still got IBS. So the meds you mentioned to protect your heart what is your ejection fraction as mine was 70 something and now is 65 after 3 months. I had the echo whilst in hospital so my cardiologist won’t have seen it I doubt. I may double check that with onc on Friday when I see him for a check up re antib’s, blood thinners and Phesgo.
Hi @Linda_Corinne
I’m glad to hear you are on the mend. Your ejection fraction sounds good. Mine was 63% which dropped to 52% and now is back up to 62% which I am assuming is down to the Candesartan. Definitely double check with your oncologist. As @naughty_boob advises, best to advocate for yourself. One of the best bits of advice I have had on this journey.
Salbert
x
I’m playing catch up as I’ve
Had a week of feeling very down tbh - side effects were not pleasant but were doable , however over two weeks in I started feeling breathless and exhausted and just didn’t seem to pick up … even heading upstairs had my heart pounding and me feeling winded and unable to catch my breath .
Yesterday was the first day I actual felt almost normal … although I felt a bit breathless still .
@salbert that’s brilliant news about the ticker , April will be here before you know it and it will be bench slapping time and bye bye heart meds ! Xx
@jeml it seems to have come round quickly for you but just think … this time next week … it will be done and you can look forward to Christmas -on a practical side , get a v pillow for your bed so you can sleep , and if you travel in the car , a seatbelt pad or a little cushion under it …
I started my arm exercises the day after in order to get movement back as quickly as possible … It will be exhausting after a double mx but stick with them …
emotionally … despite just wanting the op out if the way … nothing prepared me for looking down and seeing my missing breast . I cried … because I needed to grieve for the part of me I’d lost , even though it needed to happen . Be kind to yourself and remember that initially it’s perfectly normal to have a whole range of emotions after a mastectomy … but three months on . I just get up , slap my fake boob in my bra and face the day ! It’s my new normal xx
Saw an oncologist today … not the initial one I saw before I started chemo … it was the elderly one who can’t operate his pc bless him . At one point he rang the breast nurses and more or less asked them how to do his job .(basically where to find referal forms etc ) I’m losing confidence fast !
I asked if the herceptin was causing my breathlessness but he said it wouldn’t after one jab . I then found out that the cardio technician hadn’t managed to get my EF from my latest echo so they’d used the reading from six months ago ! I’m really cross as I have two leaky heart valves and it’s entirely possible my ejection fraction could have dropped from May or my leaks have worsened … my ejection fraction was only 57 per cent in May so if it drops even a bit it will go into heart failure territory … I also have bad neuropathy … He says he’d reduce the dose and rang pharmacy to do it and they said it was too late as they needed 24 hours … so he said the only alternative was to delay for a week and go in with a reduced dose …
of course I felt I had no choice but to agree to the usual dose tomorrow but I’m feeling stressed and worried about it all now as I really don’t want the neuropathy or breathlessness to get worse also not very confident in my team tbh
Hi @arty1 , so sorry to hear you have had problems. Its so frustrating when things go wrong, like not getting your up to date ejection fraction, thats very poor. My hospital wouldnt do the Phesgo without a current echo and on one occasion i had to go to cardiac measurement just an hour before injection appointment, so solutions can be found, it makes me so cross when the system lets you down. It must be worrying that your heart function is not good. I also hsd some neuropathy and my dose of Paclitaxol was reduced twice. Think of it as an adjustment rather than reduction. I can quite understand why you have lost confidence in the team. I hope your symptoms dont worsen after your next session. @salbert pleased to hear your heart situation is under control, you must be very relieved.
Hope everyone is ok and managing as best they can in the run up to christmas. Im certainly going to enjoy it more this year and appreciate it as this time last year i had just discovered the lump and knew in my mind that it was cancer, but didnt tell anyone until officially diagnosed in January. Urgh that was awful. What a rollercoaster journey its been!
@pennyp Im really cross - apparently cardiology submitted a report using my results from May and didn’t actually say what my ejection fraction was but just said my heart function was “normal “ My appointment is 9 am and I’m tempted to say about my breathlessness again because they’ll have to get a dr to see me . I’m really cross that it was too late to reduce the dose for tomorrow
I hope Christmas is much nicer for you this year … there nothing worse than going through the motions of trying to enjoy things when inside you feel sick with dread … I remember feeling like that on my sons birthday in July … trying to hold it together when I just wanted to throw up with fear
Did he recommend missing a week? Wouldn’t that be better if so. I would be worried I was doing more harm than good.
I am swopping to oral antib’s today after 3 convo’s yesterday as my bloods are being affected ie. My neuts are low, HB had recovered but narrowly missed a blood transfusion. They said it was normal on immunotherapy but I’m not and haven’t been on immunotherapy. My onc rang micro biology and they said to swop to oral and it would be more effective! I had previously been told it had to be 4 weeks of iv antib’s. Maybe it’s another one due to the bloods?
xx
x
i had a fun weekend. Just this week to go and then i will be getting ready for my op!
they told me to pack a little bag incase it ends up being an overnight stay… my little one is going to my mums for about 6 nights at least till i get my drains out… and it makes me feel sad. Going to miss her loads. But she is always on go and jumping about so i know its for the best! Will get her back in time for xmas.