lovely to hear from you 🤗
I get what you mean about having your head down just getting through everything at the moment. And I have a 9 year old too - what moments of profound wisdom they have sometimes! Thanks for reaching out.
Did you start radiotherapy last Friday or is it this Friday coming? Hope it goes/is going well.
I finished radiotherapy mid December, it was fine and just found some fatigue hit me more towards the end of December. I’m sure it’s different for everyone, but hope you get on well with it. I’m going through a kind of post-treatment rollercoaster, processing, reassessment, looking forward (had my first COVID vaccination today!) and gradually building myself up after chemo.
How’s everyone else doing?
Much love 💕
I've been keeping my head down at the moment supporting other people in the family who have had bereavements or suffering ill health....not to mention homeschooling, I start radiotherapy treatment next Friday and my 9 year old was talking to me and simply told me I should help other people with cancer and talk to them because its good to share things. Almost crying I said I will, I'll help others and be an active part in supporting others... So I'm going to do it more and more.
How has everyone found treatment so far? I'm having the post chemo aches in my lower back and tingling in my fingers, Im keen to start radiotherapy treatment now. I'm on tamoxifen and have been for 2 weeks and so far the only side effect is night sweats
Wow Kitkat you are hurtling through treatment ! Are you have a condensed course of radiotherapy with 5 sessions or the traditional one? I’m going for the shorter course I think.
I had my oncology review and I am thrilled to say I had a complete pathological response to chemotherapy so there was no trace of cancer anywhere and only one lymph node out of 29 showed any sign of previous cancer. Essentially all that **bleep**ty chemo cured me!!
I have been a bit too sore with a wound infection and draining fluid to be in the mood to celebrate but I am slowly recovering and planning a fitness training regime to build me back up again.
I have a month till radiotherapy I hope. I need breathing space to get well again first.
How are you all doing?
hope you’re all doing as well as you can do in these Covid/cancer/chemo times.
I'm 3 days into radiotherapy ......12 more to go.....it’s been ok up to now.....the cancer hospital provide daily transport each day which I use....My appointments are at 11am each time.... so I will get a little routine going...... I get my Covid jab next week which I’m relieved about ..... it’s the Pfizer one ..... my manager booked it for me through work......I’m still waiting to have 48 hour ECG as I have developed an ectopic heartbeat on chemo🙄 But can’t have that until I finish rads..... and still taking daily fragmin injections ( which I really hate) for blood clot Caused by PICC .....but apart from that I seem to be picking up....bit more energy ( I’m currently painting my bedroom) ..less neuropathy.....and some fuzzy bits of hair! .....also my brows coming in again and my lashes seem to have grown back from nowhere..... so all is not bad 😁
Thinking of you all and wishing you all well..... take good care ladies x x x
Nancy, had to laugh about your husband’s comment!!! That dark humour works for me!
Hope your recovery continues and will be thinking of you for the follow-up appointment 🤗
I’ve found stopping since Boxing Day has really helped me reflect and process what has happened and how battered about I’ve been at times. Useful but emotional. Going to focus on recovery and really nourishing myself in January.
Happy New Year everyone xxxxxx
Thanks Heather for your kind message. I hope you enjoyed Christmas.xxx
I had my op on 21st December 6 months on exactly from diagnosis. It was done in the private hospital but I wasn’t impressed by the service or the decor - it was like a Travelodge with hospital beds! The kindest person was a Hungarian nurse who got me up and dressed and fed me and gave me a hand painted Christmas decoration before I went home at 9pm. I had a drain which pumped out fluid well on day one then fell off and never really worked again. The nurse removed it on Christmas Eve and I haven’t missed it. No swelling yet. I’m doing my exercises and have a very tingly arm. I also have a very itchy boob as I have reacted to something, possibly the skin glue. I am allergic to lots of dressings so who knows.
I am trying to follow your advice and sleep and rest till I’m better. Doing jigsaws with one arm is trying! I have a results appointment next week so fingers crossed it is good news. Husband has just reminded me it is our fourth wedding anniversary this week so we need to celebrate. He was joking his new wife is broken and he wants a refund. I don’t blame him! S
Heather I hope Oncology is a positive experience next week.
Amy I hope your sickness has settled that’s my least favourite symptom.
Kitkat I hope your energy levels are coming up again
Best wishes to all and Happy New Year.
Merry Christmas to you and your family, hope you managed to feel a bit better for Christmas Day xxxxx
so glad you’re seeing some improvements with the physio, that must be a relief. I have heard of cording but didn’t really know what it looked/felt like. I did the exercises they gave me in a leaflet, it isn’t quite as it was before but isn’t bad either and I could hold my arms above my head for radiotherapy. Glad they gave you physio quickly.
I was very nauseous on Carboplatin too, keep pushing for different/additional anti sickness meds if it doesn’t improve, I waited too long. Eventually got the right combo after a few treatments 🙄
Sending you love and strength for the next carbo, keep in touch xxxxx
I’m feeling ok overall, my muscles and my bones have felt quite sore over the last week or so, especially my leg and hip bones. From reading up I think it may be late effects from chemo but I see both my oncologists on 4/5th Jan so will ask them. Still get the heavy heavy cloak of tiredness at some point each day, and my scars became more sore after radiotherapy, but I think all that will settle down in time. My hair is approx 1.5 cm long now (and pretty grey!) and is thickening up so provide almost an even coverage. I think my lashes are starting to come back too, but they’re only very short at the moment.
Our children are finally returning to school on 4th Jan, which they’re SO excited about and I’m really looking forward to some proper rest and recovery in Jan. And although it’s scary bursting Out of our ‘bubble’ in some ways, I will enjoy getting some kind of normality, as much as anyone has any at the moment!
take care everyone, look after yourselves, much love
Merry Christmas xxx hope you managed to have some nice family time and celebrate your marathon this year.
I know exactly how you feel when you say your body feels 95 - I’ve thought the same as I’ve shuffled down the landing at times this year. It’s scary. I still sometimes look at the stairs and have to brace myself to get the energy, especially if I need to get to my son’s room up another flight 😭😭🤣. Walks are good, for your body and mind, but listening to your body is also really important. It’s been through a lot, so don’t feel pressure to do more than it can manage at that point xxx little walks may help get things moving too though! 😉😘 It’s so glam isn’t it, on carbo I veered from diarrhoea to hideous constipation and back again! 😳
let’s hope you get your Covid vaccination soon 🤞🤞
how are you my dear? Thinking of you as you hopefully recover from your surgery, resting and sleeping it away. Did you have a drain? Hopefully it might be out by now if you did and hopefully you’ve found a good pillow combination to prop you up so you can sleep 🤞 and hope you found a good painkiller combo. Be kind to yourself, it’s a big op xxx
sending you healing thoughts and strength xxxxxxxxx
Sorry you’ve been having arm pain and cording Amy....not good.....and then feeling rough on your new chemo....hope you feel a bit better soon.
Have a lovely Christmas with your family and your little man. I know what you mean....you have to make your own risk assessments based on who you and your family mix with.
take care and stay safe
Oh good luck with the surgery Nancy, you will be fine. My arm is getting much better, I’ve been having online physio sessions that have really helped. She keeps saying she’s trying to get me a face to face with someone as well but it’s not happened yet. I had/have cording which meant I couldn’t straighten my arm out but that is fine now. I also have some tightness in my armpit which means I can’t lift it very high, that’s what she wants me to see someone for. All the odd nerve sensations have settled down though, six weeks after my op.
I started my new treatment yesterday, Carboplatin, radiotherapy will be some time next year. It was pretty rough to be honest, I was being sick all night but have got a new prescription today for better anti sickness tablets so hopefully won’t happen next time. I’ve spent all day in bed as I didn’t sleep at all during the night. Hoping I’ll bounce back tomorrow. My next treatment is not for three weeks so I can put it out of mind over Christmas.
We’ve got my mother in law and my brother coming here for Christmas. We’ve all kept to ourselves so I think it’s a lowish risk way to do it, it’s so hard to know.
Well done all of us for getting through everything so far and good luck with next stages!
Hi Nancy, Heather and everyone!
I finished chemo 3 weeks ago....still feel a bit crappy but getting there....Need to start walking again...just feel exhausted even going up and down the stairs...... I feel 95 not 55! .....my partner walks our Little dog every evening so I will start accompanying them I think.....just getting a bit of fresh air is good for the soul!.....the metallic taste in my mouth is starting to ease but still don’t seem to have an appetite......my weight is down to 54 kilos now so don’t want to lose anymore.....just makes me look gaunt at my age.....and still suffering with constipation 🙄
...got a tel appt today with rads Onc.... should be starting rads January so will get a rest over the Christmas period. My hair doesn’t seem to be growing back yet but early days so will see. Still taking daily fragmin injections for my blood clot....due a repeat scan in January....now my Picc has been removed it should be hopefully dispersing.
my Mum is coming over for Christmas as she will be on her own otherwise....I am seeing my youngest son on Monday with my youngest grandaughter......outside, to exchange presents.....but will see my daughter and 2 other grandaughters on Christmas Day as both school and nursery Closed 2 weeks ago due to rising Covid cases.....so they have not mixed since then.....my oldest son is working out in Canada so that will be a FaceTime Christmas!
I need this Covid to ‘do one’ as we say round here.....my mums had her first jab as she’s over 80.....I am waiting to see whether I will get one quicker with the GP ( as group 4) or through work ( NHS) ..... I will take whichever is offered first.....can’t even think about going back to work yet....just wouldn’t have the energy....but maybe in the spring I might feel differently.
Well I hope you are all as ok as you can be and I wish you all a relaxed Christmas .....stay safe x x x
Hi Heather it’s good to hear from you. This thread has been very quiet.
I have finished IV chemo now and swapped to three weekly Herceptin injections. My hair is growing back grey and stubbly. I’m off for a pre op Covid swab today as Monday is my lumpectomy and lymph node clearance. Christmas is a write off this year but being cancer free will be the best present. I’ve bought wrapped and posted everything unusually early and banned visitors!
Amy how’s the arm? I’m a bit worried about that side of things. And what treatment are you getting next?
Best wishes to you all.
How are you all and what’s been happening the last few weeks?
I completed my radiotherapy on Thursday, felt great but surreal to walk out of there for the last time after going daily. I found radiotherapy fine, it was mercifully brief each day and interesting to be part of as it’s so precise and specialised. My skin felt itchy driving home after the first session and became a bit red and my breast swollen, but all very bearable and the irritation eased with the Aloe Vera gel I used. I found it a bit uncomfortable sleeping on that side, so swapped positions. Felt like a walk in the park after chemo! I have times where a real heavy tiredness comes over me and I feel I’m dragging myself around, so I rest then, but I’ve been for a good walk each day and can do pretty much everything I need to each day. Went through a bit of an odd ‘I don’t want to do this’ fed up feeling the first day, just didn’t want to be prodded or poked any more and didn’t want to take a step backwards in my recovery after just starting to feel a bit better. It passed though and I was encouraged by my minimal side effects.
Would be lovely to hear how you’re all doing.
Well done to those that have finished! And good luck with the rads. My recovery is going well although am getting some extra physio for my arm because I haven’t got much movement yet. There is a bit of debate about what happens next for me so I will have another scan and then either rads or more chemo.
so nice to hear from you. Well done on your last chemo, not quite celebrations yet I know as you know what you’ve got to get through over the next few weeks. Head down and get through my dear, you can do this. It’s such a marathon isn’t it? I found only once I was finally feeling a bit better could I really think about it being the last one. Over the last few weeks I’ve finally felt more energy and the nausea has FINALLY eased and I can start to feel a little bit more normal. It’s very reassuring to feel the body getting stronger though after feeling so battered.
Yes, radiotherapy starts Monday, thanks for the good luck wishes, not too many expectations really, apart from it being another phase of treatment and most probably the blanket of tiredness which most people say happens. Will let you know how it goes next week after the first few days.
How is everyone else doing? Xxxx
🥳🥳🥳🥳Kit Kat well done finishing chemo ❤️❤️❤️fabulous news ❤️ on rads drink plenty of water to keep hydrated and you will probably fall asleep at all hours for 40 winks on rads, just go with the flow. 💕💕✨✨Shi xx
Hello everyone😁....how we all doing?? I had last chemo yesterday ( 21 weeks / 16 treatments🙄) ..... still got to get through next 10 days of feeling rough ( and 7 days of filgrastim😳) but all done. I didn’t feel anything really when it was all over....certainly no inclination to ring the 🔔.... just handed over some goodies for the staff, and quietly walked out.
They wouldn’t remove my PICC as they said it needs to be removed whilst having a Doppler scan to avoid the clot in my arm breaking off.... so waiting for an appointment for that. I’m still taking daily fragmin injection so no alcohol until April....but hey ho...such is life. Also waiting for rads consent appt...l think they will begin just before or just after Christmas.
How have rads been for any of you that have had them yet??.... think you start on Monday Heather??....good luck and hope it goes well.
Hows your surgery recovery going Amy??
Nancy...are you back on track??
Take care everybody and look after yourselves x x x
Blimey Nancy, do you want to add anything else into the mix for 2020???! 😳 So hope you’re not in too much pain and that they’re happy for you to continue with your chemo soon. Very glad you’re being well looked after.
Amy, hope you have a good, restful recovery from your mastectomy. I imagine it is a fairly significant surgery physically, with a real emotional factor to try to process too. Amazing to have a view of the Houses of Parliament as an outlook and distraction! Huge hug and well wishes.
I went for my radiotherapy planning session this week, was marked, positioned and tattoo’d up ready for the radiotherapy from 30 Nov. Surprised myself by feeling a bit daunted on the morning, think just bracing myself for another phase of this journey and having to go it alone. And kind of didn’t want to be prodded or poked any more, especially as I’ve been so nauseous and not sleeping very well. They were lovely though and I felt fine afterwards. They talked a lot about how many people feel by this stage of treatment and I found it helpful to know it’s normal. The radiographer told me that some of the Macmillan services were back up and running and told me to sign up for the Look Good, Feel Better session, where qualified major cosmetics brand make up artists teach you make up techniques to help with things like brows especially, but also to rebuild confidence through how you look/feel. You also get a goodie bag of products afterwards. So I’m booked on after lockdown 🤞 am looking forward to it. Also offered me a reflexology/aromatherapy session which I’m going to do. Felt really touched, as I haven’t been able to access anything like that so far.
Take care everyone,
Oh dear Nancy you have really been in the wars. I hope your luck changes soon, as you say!
I finished chemo in October and on Friday had a mastectomy with diep flap reconstruction. I have ended up with more of a new boob than I was expecting, which is good I suppose. It’s all very strange and was very painful at first but am getting better every day. I managed to get my own room with a view of the Houses of Parliament, so that has been really cheering.
I’m going home later today so just waiting for them to sort out the relevant bits and pieces.
Really glad the surgery is over with. I am on to radiotherapy next and then more chemo in January most likely. It definitely feels like a marathon!
Hello everybody and well done getting through the chemo and onward to radiotherapy. Kitkat I’m still plodding through the last round of Doxatacel and HP this week. I had a delay as I stupidly fell and broke my ankle so had a stay in hospital and an operation to pin and plate it. My PICC line somehow came out while I was an inpatient so I will have the last dose through a cannula. The chemo has been delayed to allow the wound to heal but as long as the fracture clinic are happy today it will go ahead on Wednesday. I am on crutches and can’t walk for six weeks so am feeling a bit frustrated. At least I’m not missing much outside.
On the plus side the husband has been wonderful without him I would have had to book into a hotel or a nursing home! And it makes mere lockdown look like an easy option if you don’t have cancer and a broken leg!
Next month I will have my Wide local excision and axillary clearance if Covid allows, then in january I will start radiotherapy with zolendronic acid and letrozole and Herceptin injections. It does seem like a marathon but onward we go one step at a time. Literally in my case!
Am I downhearted? Not really - just hoping for some better luck soon. Premium bonds anyone?
Glad to hear your updates Sunshine and Kitkat, and that radiotherapy is manageable and going quickly Sunshine. I have it daily for 2 weeks, was due to be 3 but they’ve revised the approach and slightly increased the dose and done it over a shorter period.
Kitkat, I feel for you. It’s such a marathon journey isn’t it, and when you’re feeling rubbish for so much of it and having to do all those horrid injections too, it’s wearing. it’s such a huge amount of toxicity into your body, an onslaught, you have very little relief in between at the moment 😣. what is the zolendronic acid for? I so hope you can soon enjoy eating and nourish your body again.
I’m 3.5 weeks on from last chemo and my mouth is still yuk and I’m still quite nauseous at times, I hope it sorts itself out soon. I reckon in places I’ve got about a centimetre of hair now on my head, still fuzzy, patchy and delicate, but growing. Isn’t growing anywhere else yet though, which is fine mainly (legs etc) but I’m dying for some eyebrows ...! No more treatment planned after radiotherapy 🤞🤞 so we’ll see. Mine was an aggressive triple negative metaplastic cancer not usually found in the breast, grows fast, so most common time for it to recur apparently is in the first or second year after ... then it gradually reduces and isn’t that common after 5 years. I hope it won’t come back, but it might. I’d like to focus on a new year and make some plans and visit and hug those outside my immediate family that I love and haven’t hugged forever, book a holiday ... but with COVID a lot of that is impossible. It’s a strange feeling. I looked on the map last week and found new places to go for a walk not far away but somewhere I hadn’t been before, the groundhog existence was so intense. It helped, just seeing something new.
COVID is scary, I know so many people who have had it now and it just doesn’t bear thinking of if one of us got it 😱. Stay safe everyone xxxx
We got our children a Nintendo Wii last week, as they’re still off school until Jan and pretty bored, and I’ve been doing a bit of Just Dance with them and bowling, etc. Quite a fun way to gradually try to get a bit of strength and fitness back, esp when it’s raining!!
I had my picc removed on Tuesday btw, very weird, they literally pull it out (all 50cm)! Odd sensation but not painful and when I removed the dressing after 48 hrs it had pretty much completely healed up and hadn’t bled at all. Crazy eh?
Take care everyone and please keep on with the updates. Be kind to yourselves xxxx
Hi Everyone....how we all doing?
Wow Sunshine! you’re really blasting through it now! That’s brilliant. Good luck with the rest of your rads.
Is your hair starting to come back at all? I can’t imagine what it will be like to have hair again. My brows are hanging on ....but my lashes have gone.
Are you enjoying food again now you finished chemo? I can’t remember the last time I ate something and enjoyed it....I never thought i would say I don’t want to lose anymore weight....you can count all my ribs....🙄.
I feel like my chemo will never end. The paclitaxel was a walk in the park compared to this EC I’m having now. I feel rubbish for 11 to 12 days then on day 14 it all starts again😳.
I am sick of injecting my self every night with the fragmin for my blood clot in my arm and on top of that the 7 days of filgrastim.....I have to keep injecting the fragmin for 6 months! .... makes me wonder whether it was worth getting the PICC. The fragmin really stings Going in... the filgrastim is a breeze in comparison 🙄.
My first chemo session was 13th July and I still have numbers 15 and 16 to go.....my last one should be 24th Nov. Are you having any other treatment Heather or just rads?
I had Onc appointment This week....need another Doppler scan to make sure my DVT has reduced in PICC line arm....need a bone scan to get a baseline for any potential osteoporosis before starting letrozole and have been referred to another Onc for Rads. Was told my rads will start 3 to 4 weeks after chemo but not sure how many sessions needed yet. I,m also due to start zolendronic acid infusions but not until after rads...that’s twice yearly for 3 years. I’ve had my flu jab but this increase in Covid cases is giving me real anxiety. My hospital has security on the main entrance now and all other entrances are blocked. You have to show your appointment card to gain entrance.... makes me feel safer though....it seemed a lot quieter last time and hoping it will be quieter again next week when I go again.
Hows everyone else coping??.... post if you can..... I love reading people’s updates and knowing that you all ok. Well I hope you all ok anyway.
Lockdown not really affecting me that much as not Been going anywhere really and we were already in a tier 3 area so had lots of restrictions. If I manage to get out for a dog walk with my parter ...then it’s a good day!
take good care all you And look after yourselves.
Thinking of you all x x
I hope you are feeling a bit better now! Radiotherapy is going ok, just one more left on Monday! I only live about 20 minutes from the hospital so the journey isn’t too bad. I have been quite lucky and got lifts there most days. My skin is holding up ok at the moment, I am using moisturising cream twice a day. I am getting quite tired some days so just rest up when I need to. I’ve been pleasantly surprised with how quick it has gone to be honest and it really is so much easier than chemo!!! How many sessions are you having?
hope everyone else is doing ok!! Xx
how is radiotherapy going? Are you driving yourself there and are you getting any side effects?
Hope you’re not finding the daily visits too exhausting and that you get through relatively unscathed.
What are next steps for you once radiotherapy is over?
Its so true about the lack of energy reserves, I feel better so want to do lots, then am wiped out the next day! Slow and steady ....
I start radiotherapy on 30 Nov, so will be interested to hear all about it. I’ve had peripheral neuropathy come in 2 fingers 2 weeks after chemo finished, it’s not causing much of a prob but they checked me over thoroughly in case it was anything else. Told me how toxic chemo drugs are to the nervous system. Have also had gastroenteritis for a week, so not quite the feeling better trajectory after chemo I was planning, am so sick of feeling sick! 🤢 ah well, hopefully things will improve soon.
Hope everyone else is doing ok. Sending you all virtual hugs.
I’ve had a lot of catching up to do! I hope everyone is ok now and having a good weekend. Just think how much stronger we will be when we get out the other side of all this - and going through it in a pandemic as well!
I had my last chemo a few weeks ago although the herceptin injection is continuing. I had a really busy week before last and did a lot of walking and then really paid the price last week as I felt so tired! So that will teach me to think I am back to normal again!! 😀😀 I’m starting radiotherapy on Tuesday for three weeks, but just thinking about going to the hospital every day for three weeks is making me tired, I’m sure once I get into a routine it will be fine and if it blasts any little blighters that are still hanging around it is worth it!!!
Enjoy the rest of your weekend everyone xx
Thanks Heather for the timely reminder to rest. I am on a steroid high and buzzing around the house catching up on recycling laundry house plants and tidying. I am going to sit and rest now as advised!
Chemo 5 Dox and HP was a mild drama. I went in on my bike as Per usual and had coffee and cake with DH in the hospital cafe then went to the Unit. Nice and smooth for drugs H and P and started D thinking ah I’ll be out by 3. Then whoosh I had an allergic reaction and it all ground to a halt. After a bit of mild resuscitation with hydrocortisone and a pause we started again at half speed with me in the naughty corner being observed. I escaped by 6pm and promised them chocolate Brownies for the final round. It will all be fine I said to myself 😂
Hope your session is going okay Kitkat.
im hoping for a few nice days before the storm descends with those hideous filigrastim. I hate them too Heather.
Best wishes to all. We can do this!
ps I just ordered a box of all the Swallows and Amazons books and also a new bobble hat and matching jumper and some alcohol free gin. I love the steroid high!
Blimey everyone, it’s been an eventful few days For you all, I hadn’t checked for a few days as I‘ve had lots of appointments this week, and so much has happened! 🤦♀️
Hope everyone is getting through now, KitKat and Amy hope your ok after your chemo and KitKat I send you strength for all those self-injections 😳 you’ll be like a pin-cushion. Hate the filigrastim so more injections on top of that is full on. But hope it does the job with the clot, that must have been a shock. Amy I’m so pleased for you that hopefully your surgery will be sooner rather than later, I have everything crossed for you, and so glad you enjoyed your weekend away 💙
Claudia sorry to hear about your drama too, but very glad it turned out ok 👍 Big hugs xx
Nancy, great news about your surgery too, your timely ‘it will be fine’ mantra and Kitkat’s response made me laugh so much. Can’t imagine how many times I’ve said that recently. Also I agree about people’s projections, I think they’re genuinely full of admiration and just don’t know what to say. My sister said to me ‘I don’t know how you do it (chemo), you’re so brave, I don’t think I could’ I was stunned, as if it’s a choice or bravery!!! 🤯
Tara, it never rains but it pours. Hope you get some results for your son and can have some peace of mind. I’ve found recently I desperately need some calm and peace, easier said than done of course. I do sometimes just shut the bedroom door and everyone knows I just need quiet and time (and often sleep! 😴😴😴). My oncologist yesterday explained that after chemo and for some time afterwards we just don’t have energy reserves, so it’s really important to follow activity with a period of rest/recovery. And not burst into too much action when we feel a bit better, otherwise we’ll pay for it with more tiredness. The inflammation which radiotherapy causes apparently does the same, your body tells you you’re tired to make you rest so the inflammation can heal. So balance, moderation and self-care ... easy eh?! i keep dreaming of being in a beautiful beach hut somewhere warm and peaceful and just convalescing! I had my radiotherapy consultation today too and plan is to start in 4 weeks, 10 sessions with slightly higher dose, rather than the planned 15, so that’s good.
Last chemo tomorrow, what a surreal moment walking out of the chemo unit will be ☺️ I know I’ll feel awful for a while, but psychologically that’s huge. Have the outcome of the genetics testing in the afternoon, so 🤞🤞🤞. Oh yes, and if anyone has found anything that helps with the hideous slimy mouth please let me know! 🤢
Hugs to you all, lots of strength for next steps, thanks so much for all your candid honesty, keeps me going. Is such a support on this rollercoaster, I love reading your updates.
Glad you were able to have your chemo today. Your blood clot must be so scary, but glad they have got you sorted.
Any, hope your chemo went well too.
Keep strong ladies, you are doing so well,
you should be proud of yourselves!
Much love 💕 Tara xxx
Hi Amy hope your chemo went well today x
After much deliberation I was allowed to have my chemo today.... so just one day late...
meaning I am back on track.
they are still using the Picc line.....I have started on fragmin injections daily for 3 months to disperse the clot. I managed to self inject after a bit of dithering 😁..... so from Friday I will be self injecting this and also the filgrastim injections....I will be full of holes!
Hope everyone else has had a good day.
Stay safe everyone x x
My new chemo ( EC ) went smoothly...no dramas
Hi Amy....I'm ok....just been scanned again. I got a clot in top of my arm....waiting to be reviewed by doctor.... need to know if i can still get chemo today 🙄. I will let you know how I get on.
Hope your chemo goes well today x x
Oh no Kitkat! Really hope you get sorted and home as soon as possible. It’s a rollercoaster for sure 😕
Definitely Nancy’s fault! 😜
Aw no kitkat
I was on the CDU unit for the 2 days I was there (the 3 course meals were amazing, my poor hubby made me butties as he thought I would be hungry, they went straight in the bin😂!) keep us updated with everything. I'm sending you positive vibes that everything is OK and they let you go home xx
PS Nancy.... keep your mantras to yourself next time!! ..... only kidding 😁😁😁..... we always say it will be fine I our house to.... then it is....it is isn't!
Have a nice evening x
Got as far as premed and first flush then picc site swelled..... had to go to sister cancer hospital across town and been there ever since 🙄.... been admitted to clinical decisions unit...??? Clot in arm.... waiting for doppler but its chokka in here so just got to wait.
I overheard them saying they got x 2 cases of covid on this unit with other cancer patients 😳.... it is scaring me now ..... hopefully get out later on tonight.
So chemo on hold for now 😪... but what can you do.
Hi Tara.... sounds like you been very busy.. it's probably all catching up with you.... chill when you can . I saw what you put about working....i certainly couldn't have worked and I dont do half the running around you do.... you do what's right for you.... but try to have some 'me' time as well 😘
Hi Amy .... hope number 13 goes well for you tomorrow . Really hope you get a surgery date.
Stay safe everyone x
sorry I’ve not been on for a while, been trying to sort out an EHCP for my youngest and he has had lots of hospital telephone appointments too.
Claudia, I am glad you are okay now. I had a high heart rate before my final round of chemo and had to be monitored for a couple of hours. No where near as bad as you having to stay in though.
You are right KitKat chemo is toxic, it is also our best friend but we should never underestimate it!
I have felt tired since my final chemo, think I worked so hard to plough through it still trying to carry on as normal, home schooling the boys, washing and housework that everything has now caught up with me.
I had my radiotherapy planning session last week and I should start the end of this month. I am having 9 sessions altogether. It’s interesting because I was diagnosed in March I had to have surgery first due to the virus, however some of you have had chemo first and will now move on to have surgery. I know some of you won’t be done until next year but we will all get there we are strong.
Nancy, I know you don’t feel like a Warrior I know I felt like I was crumbling below the surface and looked okay to everyone on top. Many times I have taken myself to my room for a quick cry or scream through my chemo, but you are so strong to get through this. I often wander how my friends and family would cope if it were them. My friends always say I look so well, if only they knew how sick I feel and the constant heartburn. Also how hard it is to get up when you are tired. My mother in law told me the other day that I should go back to work soon because other people work through chemo and they are okay. I take my hat off to those people, but I work in a school and at the moment don’t know how I could take care of 30 children all day without falling to sleep. What I am trying to get at is no one gets how you feel until they have been through this. In a way we are Warriors because we are doing/ have done it!
Good luck to you all with your chemo I will be there with you holding your hand.
We got this, let’s smash it!
Love 💕 Tara
I am gearing up for round 5 tomorrow. I really felt so ill two weeks ago I can’t believe I am going back for more. I talked to the lovely oncologist and we agreed these were all normal side effects and I will just suck it up 😳
Next week when I am in the depths again I have scans on Monday and a meeting with the surgeon on Wednesday. At least it will take my mind off things. The oncologist suggested they will plan my operation for mid December so I have booked a cottage in Cornwall between chemo and surgery. I will still need 3 weekly Herceptin for six months but that doesn’t seem as savage.
I had an old dear friend round yesterday who brought cake and helped me plant some roses I was given for my birthday. Afterwards she sent messages saying I was amazing and a brave warrior. It irritates me that she projects all that onto me. I actually told her I am feeling scared and wimpy but she didn’t listen. It doesn’t suit her narrative to hear me.
We are getting there now. Be strong every one and if you need a cry or want to vent we are your people!
That must have been horrible being in hospital but I’m glad you are ok.
We had a great weekend away for my son’s birthday. I got a bit tired but we were staying in a really nice cottage in the countryside so it was easy to rest and be lazy when I needed to.
I have been given a provisional surgery date (in two weeks!) but need to have some scans first before they will confirm. I feel like I can’t really relax until I know about that so am wishing the days away a bit at the moment. I’m going ahead with paclitaxel 13/18 tomorrow anyway which I’m quite pleased about - the more I get done before surgery, the better, I figure.
Hope everyone else is doing ok xxx
I'm having 4 EC .... you will be done before me .... hopefully that means surgery all behind you be Christmas.
My surgery was in June.... see.s ages ago now..... I'm on track to start radiotherapy Christmas week 🙄.... mind you .... no one round my way is going to be doing much at Christmas with lockdowns.... so not going to miss out on much I guess!
Speak soon X
It was a bit scary because of covid, I couldn't speak highly enough of the nursing team. I have one more chemo in 3 weeks and after that my op.
How many EC do you have? I found I had 3 tired days on ec after day 5 I was getting more human so I personally would have found 2 weeks EC manageable but I do understand that every one is different. Any questions please ask but most of all good luckxx
i bet that was frightening... when I stop and think about it too much, chemo Scares the life out of me, it’s so toxic on the body. Glad you’re back on track....when will your chemo finish?. l would hate to have to go to hospital As an inpatient at the moment with Covid on the rise. My hospital is In Liverpool where Covid is spreading like wildfire, and even going for my Picc and bloods today caused me anxiety.
My 12 paclitaxel are all completed....wahey! EC begins tomorrow 🙄.... fear of the unknown again. It’s every 2 weeks so thinking I won’t get much of a let up from one treatment to the next, just have to wait and see.
take good care and keep in touch x x
I had a blip last week when I supposed to have my 5th session, I happened to mention I had a couple of mild palpitations on the docetaxel. Cue the panic the need for an ecg which was high and a 2 night stay in hospital whilst they monitored me. I was so upset but needs must. Thankfully they discharged me after a clear heart scan and I had my 5th chemo today.
Heather, I was assigned a volunteer from someone like me she was lovely and 9 years clear, her friend has secondaries and is still here 8 years since being diagnosed! It does show more people are living with stage 4 longer and does offer hope... I believe you'll be one the 1st july starters to finish chemo it must be a lovely feeling 😁.
Amy any news on the mastectomy yet? I hope your little boy had a lovely birthday
Kitkat, Nancy how is the treatments going I hope the side effects are manageable
Tara how are things with you
Everybody else I'm sending positive vibes to you xxx
Let us know how you get on with your mammogram and scan, thinking of you xxxx
Thinking o Chou as you grit down after your treatment xxxx
nice to hear from you 🤗
It seems to vary dramatically how people fare on EC, so not necessarily harder 🤞🤞 maybe just different. After the neuropathy you deserve an easier ride! But as I think Nancy 🤔 said, if we feel this rotten think what it’s doing to the tumour!
Children’s perspectives on life can be a fab distraction. I was feeling guilty as my kids can’t go to school and see their friends, and they Zoom in sometimes and see their friends having fun together. I was telling my daughter (she’s just 6) that I was sorry about all that the other day, she shrugged and said, ‘I think you’re doing us a favour, I love being at home and chilling out, think I’m going to keep on home-schooling!’ Made me smile 😊
My son likes stroking my Little bit of fuzz on my head too and calls it my baby hair. God knows what it will grow back like, it’s very white at the moment 😬
Good luck on your EC next week xxxx yes, I’m 3 weekly and last dose next week if all goes to plan 🤞🤞 outcome of genetics testing too and my first radiotherapy Consultation, as well as normal bloods, so busy week leading up to chemo Thurs. Work have been sending me lots of emails and trying to draw me in, as if I have the headspace for that on top of everything else, and throw in home-schooling too 🙄 blimey!
Happy weekend everyone, keep going
hope today number 12 went ok ..... was thinking of you.
i think the weather on Saturday and Sunday looks ok, with some ☀️ for your trip away!
glad you picking up a bit this week.... do you have your treatment 3 weekly??
I start on EC next week, but it’s a dose dense regime so it’s 2 weekly...so doesn’t look like I will get any respite before next dose due🙄. I have done ok on paclitaxel really apart from neuropathy to hands so am worried that I will find this next one harder going. I know what you mean about hitting a wall emotionally, sometimes it’s just 2 much and other times it’s ok. Like today I was feeling sorry for myself then my daughter came round With my middle grandaughter who’s 21 months... she took off my turban and stroked my head and said ‘awwww.... it’s ok’ and pulled a sad face!! .... it was good to laugh instead of cry for a change!
look after yourself and keep in touch x
glad you feeling slightly more yourself today. Have you got a date for your scan yet? I had my surgery back in June .... seems like a lifetime ago!! I’ve completed my 12 weekly paclitaxel now .....whoop whoop!! and start EC next week ( not so whoop whoop 🙄 ). I had my last 3 doses at 20% reduction due to peripheral neuropathy kicking in after dose 9.... that decision was non negotiable for me...but, I’m sure, made in my best interests as it was likely to get much worse if I had carried on at that dose.....it’s now much improved although still there to a degree .... after that the specialist Onc nurse phoned every week for a review and askEd each time if I wanted to carry on with tax or quit and move on ..... but I just feel like I needed to give myself every chance and if 12 was recommended then I would have 12 ( albeit at a reduced dosage ) .... it’s so hard wondering all the time if the right decisions are being made.
take care and keep in touch
Hi all. Definitely on the up the last couple of days but I feel spaced out like I’ve been hit by a truck or something. An oncologist (not mine he’s away) is ringing on Friday for a review I guess to see if they need to reduce the dose for round 5. I will take their advice.
I have a repeat mammogram and scan coming up to see where the tumour has got to. I think it’s gone! Fingers crossed anyway, although my daughters keep telling me not to be disappointed if it’s still there. It’s what keeps me going on the bad days. If I feel this bad the tumour must be even worse 😂
Amy I hope today’s treatment went okay.
Heather and Kitkat enjoy the respite. Hi to anybody else who’s still here!