@Michelle21 and all you other lovely ladies.
Haven't posted for a while as been really focusing on getting through the last couple of chemo sessions. Have been reading though and keeping up with how you are all doing.
The Docetaxal has been really difficult for me and I have been quite poorly after the last 2. Lots of side effects, horrible skin reaction on my hands and feet that is very painful. Ended up being put on a 2 week course of high dose Steroids to try and reduce the effects which I'm not liking as Steroids are not something I want to tak. They make me feel rubbish and I don't want to bloat. They are definitely helping though so going to discuss reducing them after 1 week when I go for my PIC flush on Wednesday ...fingers crossed the team will agree.
Had to have a bit of sick time from my work which has been needed but left me feeling very isolated form normality as work was keeping me in some sort of 'normal' until recently and it feels like I've had to lose control of another part of my life I had good control over...
Having said all that I am trying to stay positive and am feeling much better this week so going to try and work again.
Family are being amazing and my husband has taken time off to be with me when I'm feeling at my worst in those few days post chemo...he's a star. Our son who lives with us is also a star and for a nearly 18 year old is seemingly coping very well with everything....I do worry and feel very guilty when he has to look after me..thats my job to look after him.
I've got 1 more chemo of the planned 6 to go...last dose scheduled for 13th August and I can't wait for it to be done and to get my PIC line out so I can have a proper bath 🤣. I Darenth think that that will be my last chemo as it feels like that's tempting fate but I see it as the end of the first chapter in this book, the next being the surgery....taking it 1 chapter at a time.
I do hope that everyone else is managing to see their light at the end of this chemo tunnel and are keeping safe and as well as possible.
Keep posting your updates everyone as I do like to read and know how it's all going.
This rolercoaster ride continues for now....xxxxx
@Coastal Don’t worry my memory is shocking too! I like focus on facts not feelings, another one is don’t worry about something that may never happen, but easier said than done. I also spend most days distracting myself rather than facing my feelings. I think it’s too soon to be facing up to what’s happening we just need to get through it. Sounds like you’ve been struggling physically what with your throat and hives, I hope they clear up and you have better weeks ahead of you. I was the same rarely taking tablets or visiting the doctors it’s madness when you think what they are pumping into us now!
How many more weeks do you have Coastal? I have 4 more weeks left including one carboplatin. I feel the end is in sight. X
Hi @Sammy73 so sorry to hear about your holiday! that's so gutting. I think great idea to bring the treatment forward - are you having pacitaxel? (sorry I can't remember), I had my first one two weeks ago and wasn't prepared for the aches and pains, only had paracetamol and ibuprofen in the house which weren't effective at all, and the GP prescribed me with some co-codamol which really did seem to cut through the pain along with hot water bottles. Definitely sounds a good idea to have some in stock.
My throat infection is much better - I'm at the end of the antibiotics now and can eat normal food, but have also had a rash mainly on arms and legs (to add to my already glamorous look ha ha!) which looks like hives (raised red blotches). The GP thinks it's due to the infection and he's given me a strong anti histamine and steriod cream which has stopped the itching (thankfully!) It's amazing I never used to take any medicine really or go to the doctors, but I'm a regular there now.
I hope that everyone is okay lots of love to you all 😍 xxx
Hi @Michelle21 I'm sorry I'd forgotten this is the second time (my brain isn't very good at remembering things at the moment). You sound a very positive person and you are right it seems to be very much an emotional battle as well as physical. I often feel I'm not winning staying positive and find I spend most of the days distracting myself to stop my worries rather than face them. I think your approach of thinking through things logically and finding inner strength is spot on, I read someone else say to focus on 'facts rather than feelings' and I have this written down on my phone when I find myself getting anxious. Lots of love xxx
Sammy73 so sorry about your holiday being cancelled 😞
really sorry I have been a right plonker ! I told someone who was asking about docetaxel but I can’t find the message now 🤷♂️That I had been on it and all was well , but after my last treatment yesterday apparently I hadn’t but I start it next time ! How thick am I ….. how the hell does anyone take 8 steroids a day it’s bad enough on 4 …. Could the person who is on it please let me know how you are getting on xx
@Sammy73 so sorry to hear your holiday has been cancelled what a blow. On the plus you can get back to treatment quicker and it will be over with quicker. Hopefully COVID will be more under control then, you never know!
I'm starting next week now as our Manager who runs the buisness if we are away is in hospital with covid!! So we can't go to Norfolk!!!!!! Gutted or what, can't belive how shit it all is but my partner is now negative and all staff come out of isolation by the end of next week so I bought my treatment forward, try and get it out the way!!!
I have been told I will need codine and I also get ibropufen and codine over the counter, good combo!! For the aches and pains expected!!
Luckily I only have 3 doses. Hope your throat is starting to feel better xx
Hi @gardengirl200 I hope you are still enjoying the beautiful Peak District.
I had HER2+ in my right breast in 2018. It was for me as it is for most people a complete shock. I received chemo with Herceptin and pertuzamab, a lumpectomy and 20 rads sessions. I had a pathological complete response from the chemo. After treatment I had a while reflecting on what had happened to me and then moved on using the fact is had a PCR to give me confidence. I was really embracing life even during the lockdowns I was appreciating the little things and grateful for life.
Then in my annual mammogram 3 years on from my first diagnosis they found a tumour in my left breast this time it was triple negative, so a completely different pathology. I try to remain positive and think if I hadn’t been having annual mammograms this may not have been found but on a down day I wonder why this keep happening and can I be lucky and survive cancer twice.
You are so right this is a mental battle as well as a physical one and generally I am a positive person and I’m sure I will continue to be the further away I get from this diagnosis but unfortunately that just takes time.
I’m sure you are coping well, after all none of us asked to be in this situation so all we can do is get through it as best we can. It is amazing how much strength we can find in ourselves when we need it.
One thing is for sure after all of this we will all be making sure we enjoy life as much as possible whenever and wherever we can. Xx
@Love running thank you for the inspirational message you wrote on your birthday! I hope your celebration of positivity has carried you on a big 'surfer's dream' wave through this week xx
@Michelle21 I didn’t realise this was a recurrence for you. That’s the problem with coming late to this forum as I don’t know everyone’s history. I hope you are still finding the inner strength - it sounds like you are; you could probably teach me a thing or two about how to get through this! this is so much a mental battle as well as physical isn’t it. 💪💪💪💪. Hopefully you are now having much nicer dreams! Xx
Thanks @Coastal. I can’t believe the funeral was only a week ago, time is doing strange things at the moment.
I haven’t had anymore bad dreams thankfully hopefully that was a one off. I was finding it easier coping after my previous cancer treatment as time went on but then I got cancer again! I am hoping I will be able to move away from this one in time too. Xx
What a lovely message @Love running , so true we that we now look at the positives in life and appreciate the people around us as they are what really matters. I hope the rain has held off and you are able to try out your new tent. Camping seems to be very popular on this thread!
Hi @TicTok it sounds like you are having a very full on time looking after ill parents! and grandson!!! Hope your 4th chemo goes well on thursday - it does feel great to get over halfway! Have a good week and look after yourself, it's easy to spread yourself too thin looking after others, take care 😍
Hi @Purpledaze I'm really sorry to hear about the crashing and burning on paciltaxel. I am the same!!! I had my first one last Monday and have had terrible aches and pains all week - paracetamol and ibuprofen just didn't touch it and I had to get codeine from the GP to take the pain away. I just hope that this is a blip for us both and it doesn't happen next time. I have three more to go. I also got a bad throat infection and am on antibiotics to get rid of it. Maybe that added to the aches, not sure. The GP reminded me that we are "being poisoned" and it's going to take it's toil. At least we are all over the halfway mark now which does feel good. I've got camping planned for mid August and also work dates planned in, but the chemo nurses said that I might have to just cancel things and just focus on getting through chemo. They are probably right, but a bit depressing. Lots of love to everyone 😍xxx
Hi @Sammy73 so sorry to hear about your partner getting covid! What a scary thing for you!!! something you really don't need! Glad to hear that you are still negative and lets hope it stays that way! Hoping your partner feels better really soon 😍
@Love running What a lovely message you have just posted. Happy birthday!
I really like your message cos it sums up the extremes of the journey we are on. We are having to go through the inevitable worry anf dig deep and be brave. But the flip side of this is that we can now appreciate so much more what life is about and how to count all our blessings. And we have I expect been on the receiving end of so much love from our family and friends. I now appreciate my friends and family so much more and it has brought me closer to them. These are such special things and I am so glad to have this awareness. And an awareness of how strong we are and that we can get through anything. I feel ‘freed’ from worrying about the trivial things of life! Not to mention a new found appreciation of the NHS and the wonderful breast care nurses. My friends often comment on how positive I am but faced with all this new awareness it’s hard not to be positive 🤣
It sounds like you’ve not told your mum about your diagnosis. That must be tricky but very kind of you. I wish I could have done the same with my mum but she lives nearby and, with my hair loss, I could never have shielded her from the news. She is 82 snd had a big heart attack out of the blue after my second chemo session. I worry it was connected to her worry about me, although it was probably as a result of other physical issues.
I have driven south today 5 hours with my 2 teenagers down from Scotland to the Peak District. I am sitting in a pretty English pub garden having a glass of wine in the sun! It’s nice to get a change of scene.
Have a good week everyone!
Hi @Michelle21 I'm so pleased it went well. You did so well writing and reading out the eulogy - I know how hard that can be. My mum passed away 5 years ago, me and my sister read out a poem between us and that was hard enough. I do hope all goes well for your bloods and that you stay on track for your chemo's. I feel for you having dreams about cancer returning, I don't have those dreams but do dwell on the worries sometimes, it's a hard place to be in but I think having spoken to friends who have also had cancer, it gets easier with time. 😍 xxx
Big happy birthday @Love running You wrote such a lovely message about celebrating life and it's beauty! you are so right! Wishing you a truly wonderful day! 😍 xxx
It might be the best birthday ever even in the circumstances - I feel so fortunate today for all the good things that I have going for me. I never fully realized and appreciated all the positive in my life. I got lost in the diagnosis of my BC, which s🤬.
I am getting my 4th paclitaxel as I write. It wasn’t sure as my blood count were low last week and I was scared that they would postpone treatment.
I have received so much love and greeting from family and friends since this morning. My mum wished me good health this morning, she was the first one to call and she did not realize how much spot on she was. She does not know about my diagnosis. She does not know how much it means and how much I look forward to telling her when all this is over. Tell her that I love her and I am ok now, she does not need to worry about me. She made me strong and I will be there for a while more.
I am going to get my kids and have another week holidays with them.
My husband bought me the tent of my dream for my future hikes I have been telling him about for weeks. We will test it tomorrow hopefully if the rain does not ruin our plans. He s as bd the girls planned everything in my back. Just to mention, my husband hates to camp (for a Swede he is afraid of bears🙄 and can’t sleep outdoors).
My best friend will meet me at the hospital after my treatment to wish me good travel and happy birthday.
There is this forum and you ladies that have been there for me and inspire me to keep fighting and to keep strong. Thank you.
I have been able to continue to train between my treatments.
Today I will celebrate life and its beauty. I will blow my birthday candles tonight and wish us all a good recovery.
Sorry for the very emotional message. I cry as I write.
Wish you all a wonderful day.
@Love running Happy Birthday! Wishing you lots of fun and laughter with your family, and that your daughter enjoys her birthday later this week, too. Sending extra energy to top up the steroid 'juice' x
Happy Birthday @Love running I hope you have a good day with your girls.
@Purpledaze sorry to hear you crashed for your first paclitaxel and that you have had poorly parents to look after. I hope you are on the ‘up’ for your birthday at the weekend. Well done for cooking up a banquet, I love cooking too but since starting chemo just can’t really be bothered.
@Sammy73 🤞 for staying negative and glad your partner hasn’t been too ill.
We are all ticking off the cycles now, it feels good to be on the home stretch. Can’t wait for August when I can say ‘I finish chemo this month!’ 🤞
Hi everyone sorry I have lost touch a bit this week been full on with ill parents and looking after my grandson in the holidays but it’s sounds like a few of you ladies have also has issues
…Sammy 73 glad you have managed to stay negative what a week you have had .
love running I wish you a very Happy Birthday for tomorrow and a kick 🦵for the cancer from me .
I have my 4th on Thursday hopefully half way then I start my next 4 of Trastuzumab and Pertuzumab has anyone had this mix ?
love to you all and wish you a good week xxx
What good news for both of you!
Cross my fingers tight for the PCR test on Wednesday. and that the sun comes back soon.
To all of you beautiful strong ladies,
I just wanted to wish you a nice evening and I hope you are doing well.
We are already in end of July, three months after we started this thread. This means that we are getting closer to the end and as @Purpledaze said, we can start looking over our shoulder and see the long way we have already done.
Stay strong, keep fighting.💕
@Purpledaze sorry to hear about the first paclitaxel crash. But good that you enjoyed you up days after your last EC. I did the same. I was blessed with two weeks holidays with my girls in the north of Sweden and made the most of it. I have found paclitaxel gentler than EC but I am more tired and more tired each week. The weekly treatment does not allow my body to recover enough.
I am having hopefully (if my blood count is good, last week it was at the limit) my fourth paclitaxel (out of 12), meaning that I will have done 1/3 of the paclitaxel treatment and seeing the light at the end of the tunnel.
It is also my birthday tomorrow and my gift is paclitaxel to kick the cancer in the face. I wish also that I can travel tomorrow to get my girls at their grand-parents, celebrate my birthday and my youngest one's birthday (she turns 9 on the 29th) and spend few days there before paclitaxel 5. The plan is to drive right after treatment when I am still high on steroids. Fingers crossed!
Which date is your birthday ?
Have a nice Sunday evening,
@Love running im still negative, will have a PCR test on Wednesday and that's last of isolating. He's had snotty nose and sore throat but felt better every day thankyou, it doesn't help its raining today at least with the dry weather we could eat outside social distancing but not to night. Xx
Hello lovely ladies
Sorry not to have posted for a while - it's been for both the right and wrong reasons: on the one hand really enjoying my "up" days at the end of my last EC 😄, and then crash and burn with my first paclitaxel, which has left me very tired and with painful, aching bones/muscles 😣. But I am definitely focusing on the good times - it was lovely to see some very good friends and family, too. And my appetite came back just in time to indulge in a banquet of cooking, which I so enjoyed (love cooking). It also helps to be over the halfway mark - as my friend says "you can look over your shoulder, now". It's my birthday next weekend, so I'm hoping to feel "up" again and enjoy some quiet celebrations with my family 🤞🤞
@Michelle21 I'm glad your mother's send-off went as you wished and you were able to write and read her eulogy. You sound like a very strong person, going through cancer treatment and facing your mother's passing, too. Sending you big hugs and extra strength for those days when it just feels harder!
@Sammy73 oh my goodness, that Covid19 curve-ball is not what you need. I hope your husband is ok and that you can steer clear of it all. Having to self-isolate is no fun - my husband got a throat infection a while back and we had to avoid each other for a week - it was just so boring. I know there are times I really like time on my own, 😂 but when it's forced on you, it's just not the same!
@Love running your carpark strip off made me laugh! Like you, I've lost all shame - life is too short!
Wishing everyone the best day possible and that the next step is better than the last one
I really feel for you because it is an insane situation of isolating under the same roof. Good luck 🍀
Bad dream and bad sleep can turn your day around and leave you deflated and low. I have similar dreams and it almost leaves me with the question on how will I cope with the uncertainties in the future.
Meanwhile I try to focus on the present and the positive (treatment is moving forward…). You got good news with your red blood cells. That’s positive.
And I hope you enjoyed the Bbq yesterday.
Speaking of hot , same same here… I just stripped in a parking lot to change my drenched T-Shirt for a dry one. No shame anymore. I have several changes in my bag, as I cannot go through the day without few change of clothes🥵🥵🥵🥵
@Michelle21 as I cant go to chemo suite as isolating and then hopefully we are off to Norfolk so 2 and a half weeks without a picc line flush sometimes naturally the body forms a scab, heal over then end, so will have to wait and see.
It's the maddest thing!! Living together but seperate!! Hes feeling better today and I'm still negative thank god even though I had a massive sneezing fit last night and headache this morning!!!
It is what it is, 🤷 shit lol. Xx
How are you holding on?
I hope you can keep covid-19 away from you and that your partner will go through it smoothly and quickly. This really s🤬
send you lot of hugs
Hi @Sammy73 thank goodness you are negative but how annoying to have treatment postponed. What do you mean by picc line blocked? Had you both mixed with the person that was positive?
I really hope you stay negative and treatment resumes soon.
There seem to be more and more people getting COVID who are double vax’d, and with people turning off the app and not testing or just using LF tests then it is no surprise it is spreading like wildfire. All right for the general public not so good for us.
I had my usual clinic and bloods appt this morning. I wasn’t in the best frame of mind having had a horrible dream about the cancer spreading. I probably have my mum in my mind, but the dream has left me feeling very low today. My OH says it’s just a dream and he is right, I’m sure I will pick up again tomorrow. My Onc is going to organise another USS for me in the next couple of weeks so hopefully that will show lots of shrinkage. 🤞🤞🤞. The good news is my red bloods are holding their own after the transfusion so hopefully that will continue. @Love running I also asked about surgery and she said she can’t foresee any delays and that it’s certainly not looking like the last surge when they were planning whose surgery to delay. 🤞My surgery will be 3 weeks after my last chemo so about mid-end of September. She also suggested I might want to isolate for 10 days before to make sure I am in no risk of catching covid.
It is so hot here again today, the poor dog doesn’t know what to do with herself and neither do I. We are going to have a bbq later so that will be a nice change. X
Well I have a covid-19 curve ball!!
My partner has tested positive!!!!!!
I'm negative we did a PCR test yesterday as someone at work tested positive on sunday, they felt unwell and luckily took a test. We had both done a home test Sunday and Monday and all negative. He had a sore throat and runny nose, no temperature, he says it just feels like a heavy cold, we are both double vaccinated!!!
So treatments on hold and we are isolating in seperate rooms until next Thursday!!!Chemo team were fab, my picc line may get blocked but I cant do anything about it. ! I will book another drive through test for Thursday.
What's scary is how many people have turned off the track and trace app, with different symptoms you just don't know if your safe. I'm bored already ive dettoled anything that moves, the dog hasn't got a clue what's going on!!
Oh joy!! Have a good week all. X
So nice to hear that yesterday went as you had planned and you take for farewell with your mum.
nice too that you felt safe regarding Covid-19. It seems that Wales is taking the right approach coming to Covid-19 restrictions, not lifting them too early.
you are right the pictures of the young people in nightclubs are scary. Although I feel for them and understand their eagerness to party and enjoy a normal life again. I speak often to my niece who is 24 and it has been really hard on the young generation, between no jobs, lockdown, curfews and the blame for being the driver of the pandemic now.
Hopefully vaccination will get us out this crisis.
I understand your concerns about delays for survey. I waited 8 months in 2020 to get my ACL (cruciate ligament) surgery. But for my BC, no delays, it was on the priority list.
Thank you all so much for your lovely kind messages, you are so supportive.
Today went very well it was the perfect send off as I’d hoped. I wrote and read mum’s eulogy, I didn’t know if I would be able to but it’s amazing how you can get the strength when you need it.
Most people wore masks and the Wake was outdoors so no covid worries there.
I was looking at the pictures of people queuing for the nightclubs too and thought about the impact on cases. I am in Wales so we aren’t opening up until 7th August and also we are doing very well in vaccinations so I am hoping this will delay hospital admissions for me to have surgery in September. We are only seeing people outdoors too I think that is sensible right now, better safe than sorry.
We have the same timeline- scheduled for finishing on 20 September. Then a break of 4-6 weeks before 25 radiation sessions. Will be my Xtmas gift I hope to be done. Not thinking about the 10 years of tamoxifen (one step at the time as you said)
Each good day is a day to enjoy
You are so right, COVID-19 is everywhere and not going away any time soon until we reached 90 % vaccination (delta variant’s fault). This will be challenging with all the anti vaxxers snd vaccine hesitant.
As you know Sweden has taken an alternative option in the management of the crisis. Face masks are very seldom used (only recommended in public transport at rush hours). I have been masked all the time in stores and I have not used public transport at all for months. I am lucky enough to be able to bike to most places I need to go.
My husband and are still running a strict no indoors policy, which to my surprise most of our friends have ditched. So we don’t have any guests at home and meet only outdoors. It has been hard on the kids as no sleepovers or indoors play dates for more than a year. We have been teased for being overly cautious but we are standing our grounds. I am petrified when I see the French news on the opening of the nightclubs and the cases increasing. We will see how the fall looks like. Hopefully the vaccination will prevent the worst.
Schools starts for us on 19 August (it finishes earlier in Scandinavia as we adapt to the short summer, kids were off 11 June). I hope we can keep covid at arm length. Schools were never closed here, but strict hygiene rules were put in place. Last year, there were only few Covid individual cases in school, no outbreak. The kids managed through without getting it although we got scared three times with them but it was only regular colds (tested them).
To all of you ladies, keep safe. Especially now that Uk has decided to open up.
happy for you that you are feel good after your final chemo and you are returning to a more normal life.
It must feel so good to have your hair coming back. I have somehow got used to be bold. With the heat here, I have still not try my wig, mostly going around with a hipster cap (and trying to rock the look🤪). My husband and kids think that I am cool. So it took the pressure off. I still have some eyebrows but I am brunette and started with bushy eyebrows (Frida Khalo without the unibrow though😀). So even loosing 50 or more of my brows, there is still something left. My eyelashes are thinning by the day and I barely dare touching them.
Thank you for all the hope you gave me along these last months snd I hope you keep in touch with us. You are such a positive soul. Good luck with your first Herceptin injection on Friday
Sorry about your last EC finale!
Mine went smooth and I felt (as you said) weirdly lucky about having not too much side effects and complications.
I am now on my 3rd paclitaxel and so far it went smooth too (sleepless and hot flushes mostly). I have reached out to my colleague to offer my help. It really breaks my heart as she is this 10 month old baby girl that she still breast feed. It was hard for her to get pregnant and went through Ivf and was hoping to get another baby in the future. Now there are so many open questions. We spoke a lot over the weekend and I have tried to give strengths. I also told her that she is not alone and I will be there for her (and there is a big sisterhood out there like you ladies).
I have read the statistics for Sweden and they are 9000 women diagnosed with BC each year (for a 10.2 million population). Unfortunately in 2020, 2600 less women have been diagnosed. Mainly for fear of COVID, many women did not to their planned mammograms. This means that there will be later diagnosis and worse prognosis for these women. This is so sad. Another terrible effect/impact of COVID, it will affect many more health issues (from HIV testing, TB treatment and cancer diagnosis) and increase mortality in the coming years. Again I feel so incredibly lucky to have been diagnosed and treated so fast in the COVID time (no delays at all).
I should be done with chemo by mid September (if all goes well) and I thought I will engage myself into the awareness campaign in October. I have already registered for few run races where I will carry the awareness message on my shirt and try to get my friend and colleagues running with me. I will use social media too spreading awareness messages.
I feel I need to do something.