Thanks @Coastal we've ordered a Rick stien home 3 course meal so tomorrow night to try and celebrate, all went well today so fingers crossed no different side affects then onto the next flavour!
Hi @Purpledaze I just bought a snood from fat face - thanks for the recommendation I really like the pattern and it feels really comfortable. I seem to have gathered quite a collection - so far I've got four sloppy hats, an outdoor hat, two silk scarfs, bandana and now the fat face scarf! Argh! I do wear all of them though depending on how I'm feeling! Hope you're having a good day xxx
Hope everyone is having a good week! I'm thinking of you all.
@TicTok I hope your blood tests come back ok and your 3rd chemo can go ahead on Thursday. Sounds lovely to have a break with your grandson next week!
@Sammy73I hope your last EC goes well today and have a wonderful birthday on Thursday!
Lots of love to all xxx
Hi @Love running That picture looks amazing and it must have been bliss to escape the cancer world, treatments and worries for a bit of normal life. How beautiful it must be there and your kids will have a great time I'm sure with their grandparents and fantastic for you to have a proper break with your husband - and go on dates!!! Wonderful! Also great news you got your other covid jab!
Glad to hear that the paclitaxel is going well so far, I'm starting my first one in two weeks, so am officially half way through which feels good. I'm worried also about the effect on my hands and feet, particularly my hands as I'm a part time artist, oil paintings mainly, it would be really awful to lose feeling in my fingers and hands, and for you for your running! I've looked up about wearing iced gloves and socks, but as it's a long infusion, not sure how to keep these cold enough. I spoke to the Oncologist and chemo nurses - the nurses hadn't heard of them and the Oncologist just said not to worry about this. They said if it's a problem they would reduce the dose. I guess we will have to just wait and see.
Lots of love to you and to every lovely lady in our group xxx
Hi @Poacher65 That all sounds really good - fantastic that the tumour is responding to treatment! that must be really reassuring, and you still have more chemos to go to reduce it even further. I hope your first docetaxal has been gentle for you - it's unsettling changing drugs. I've just finished my last EC and onto paclitaxel in two weeks, it feels really good to be halfway but do feel very tired this time round - weird combination of restlessness due to steriods so not sleeping but feeling knackered at the same time! I'm hoping paclitaxel will be okay - I worry about the effect on my hands and feet, but I guess we can only hope for the best. My hair is getting thinner and thinner so I'm going to have a haircut at the local macmillan centre today to make it look a bit less straggly. I'm wearing scarfs now to cover the bald patches. Take care and lots of love xxx
@Love running wow what a wonderful time you've had!! It looks and sounds insanely good!!
All, I have passed my bloods tests so last EC tomorrow ready for my birthday on Thursday!! Deep joy!
Have a good week ladies x
Love running…… wow that looks fabulous, glad you have had a lovely holiday sounds like you did lots of normal things which we all need to do , we are taking our grandson away for 3 nights next week so looking forward to that 😁…….hopefully my bloods will come back ok so I can get my 3rd chemo on Thursday 🤞.
hope everyone else is well and doing ok
love to all xx
Good evening everyone,
Just dropping a line to say I am back in town after what was a wonderful 3 week break far from the city, far from BC, and far from the hospital.
As promised I am posting a picture of almost the midnight sun (the summer cottage is not far north enough to have a full midnight sun). The picture was not taken on the longest day of the year because that day was rainy and the evening cloudy but one day later. It was taken at 23:00 from the field outside the house. We celebrated midsommar the traditional way but only the four of us. We were not yet ready to mix with the bigger crowd of relatives, as I was at my most vulnerable on the immune front.
I will watch the pictures of these holidays over and over again the coming weeks to remind me of what it feel to live the life from before, without treatment and blood sampling.
I have started my first round of Paclitaxel today (one down, 11 to go). No nausea, although right after treatment I got so so tired that I had to take a nap. Since I still had to take steroids today, I hope it will not keep awake tonight. So far so good. I have to admit that although been told that it is gentler than EC, I am ready scared of the possible neuropathy and permanent damage to the nerves, which probably mean the end of my trainings and runnings. Fingers crossed. Anyone else has started Paclitaxel yet? how do you feel?
One good news is that I got my second COVID-19 jab (7 weeks after the first one) and no side effects.
We left the kids in the north with their grand-parents for 3 weeks. Although it breaks my heart, I know that they will have a great time with them, just chilling and enjoying the beautiful Swedish countryside. They might also get a bit bored and that is good too, to develop their creativity. I also need to admit that it feels a little nice to have time for me (and my husband) for few weeks. My husband and I went on dates (even went to restaurants which have not done for over one year) and were delighted to have full grown ups conversations without interruption. We spoke about future plans when all this is over and allowed to dream.
Sweet dreams to all of you strong ladies.
Morning, sounds like a plan is set for you, hope all goes well.
In regards to the injections, I have used (1st round) over the counter codine and ibropufen as I was still in pain from surgery, knock you out a bit too. Chemo suite and surgeon were fine with that and 2nd round I used paracetamol once injection in we are told to do b4 bed and obvs no temperature pop paracetamol and I have not had any real pain. Maybe give that a go. I know we are all different but if you can be pain free, just a thought. Good luck. Xx
Poacher65 …My first 4 are docetaxal and I have been fine got my 3rd next week , but like you say the steroids do cause sleep issues ….. good news about the shrinkage 👍….good luck today and I hope all goes well xx
Good morning all you amazing ladies
Pre Docetaxal Steroids caused very bad nights sleep last night...just couldn't sleep despite being so tired!
Got 4/6 chemo today...1st Docetaxal so nervous anticipation of what is to come today and over next few days as side effects evolve.
I get so worked up about the injections too as they make me feel pants but I know they do great things for my immune system so try and focus on that.
Had my D-day of appointments on Wednesday and it went well. Surgeon pleased with how tumor is responding so far and went through my surgical plan, booked for therapeutic mamoplasty on 16th September if all 3 chemos left go to date plan. Surgery will be approx 5 hours long...doing reduction of left boob aswell as removal if tumor on right side. Having Breast MRI after last chemo as they are hopeful Docetaxal will shrink and destroy even more and also need to see what's happening with the 2 lymph nodes they know about. Surgeon hoping to avoid fill clearance of nodes and so am I. Hopefully get away with the sentinel node..the one we know had cancer cells in it on biopsy and a few others close to that one but as ever I trust my surgeon so I'll go with the end plan and deal with it after.
Oncologist also please with response so far...although put the heebie jeebies in me about side effects of Docetaxal...im trying to stay calm and just see how I react as I know we are all so different with our side effects.
@Sammy73 I was so sad to lose my hair and got some emergency wigs off Shein of all places which for their price..between £10 and £20....are great. Also went to the hospital wig lady who was great, got one with my £75 voucher that is identical to how I used to have my hair..the wig lady cut it whilst I was there to make it look even better. Only problem is I am a natural red head and the wig more brown with blonde, although looks OK. Bizarrely I feel more conscious with my wig on especially around those who know about my diagnosis. I do tend to either be bald or have my turbans on at home and when I go out although I'm not going far...become a bit of a home hermit.
Wig wearing is such a personal choice, no right, no wrong so just go with the flow and do what's right for you on that day.
I follow all you amazing ladies updates on here and even when I don't reply you remain in my thoughts.
All of you take care and I will keep reading what's going on in this little family I've joined.
Love to all xxx
Sammy73 I have read that book and just finished the cancer ladies running club book by Josie Lloyd which I also enjoyed , if anyone fancies a read xx
It's strange because we should embrace how we look but it's others reactions I seem to worry about!!
I have a really good book, actually my Austin best freind found it and sent it to me.
Tea and Chemo, by Jackie Buxton very real but inspired by her and her breast cancer journey, just putting it out there x
Thanks @Coastal it didn't go too badly. The nurse slowed down the infusion of one of my drugs, and that helped reduce the weird effect it always gives me straight away.
And the good thing is that I won't be having that drug again 🙂
Feels good to have reached the halfway mark! 💪🏼
Hope your day is going well x
@Sammy73 I haven't gone done the wig route, but appreciate everyone's different. Sounds like you've got some good tips there.
Like you I preferred hats and head coverings. After sampling different types, my fave has been a snood from Fat Face. They are super soft, come in different colours (all lightly patterned, tho) and I find them not too hot. You can also leave them 'long' so nape doesn't get chilly, or wrap / tie them up. I wear them for work and outside. I realise this is still more obvious than a wig, but it gives me confidence and hides my head stubble 😂😂
Hope you find what works best for you x
I know what you mean @Sammy73 about lunch inside. It's tricky isn't it. I've still got some fringe hair and have been wearing this with the fringe sticking out. It's kind of a sloppy hat/scarf thing and doesn't look so weird inside.
I'm really glad I've got the wig though as want to have something that makes me feel completely normal. What I'd also say is it was a good opportunity to try lots of other hairstyles/hair colours you might not have thought of as options for when your hair does grow back! I've always had brunette hair but my wig is blonde/light brown streaks, which I think is much better for my middle aged face 😁. So when my hair does grow back, I'm going to have it coloured. So a positive! xxx
Thanks @Karden you are totally right. I do feel I'm bottling it up which is not a good thing. People often say that the worry and anxiety gets worse after treatment, and I worry that I'll not be able to deal with it. I do think the antidepressants are working because I know I felt much worse before, I was waking up in the middle of the night worrying which I don't do now. It's only a low dose though and I don't want to up it - the Oncologist has been very helpful talking to me about how I'm feeling, which has been great. I'll think about the someone like you - thank you! that might be a really good thing for me. I do find it reassuring looking at this forum, it definitely makes me feel less alone and people are amazing on here - so strong. Thanks for your very kind words 😘 xxx
@Coastal thank you very much for this. As I said earlier I kept poo pooing the wig thing, im a hat girl but when out to lunch inside with a hat on its made me quite self conscious. I will take a look at suggest link thank you again xx
Hi @Sammy73 I got a wig from Trendco which I think looks pretty good. I had a couple of appointments with them to try on all the wigs - the ladies there were really lovely and supportive, I took photos and videos and showed the options to friends and family before deciding on the wig. It wasn't the cheapest - it cost £165 and is synthetic but looks real to me anyway! I also got the wig prescription from the hospital - bit of a palaver I had to get a referral from the chemo nurses to a special hospital department, pay an amount of £75 to get a £150 voucher, which then got sent to Trendco. If you live near Hove or London you can book free appointments through their website https://www.trendco.co.uk/ Good luck! xxx
Hi @TicTok that must be reassuring having the nurse there to check all's okay but will be interesting to see whether that's the same for your other 4 chemos. I asked for the PIC line before chemo started because my friend had had it (and said that it was really important I asked for it so I did) but I was also really worried that they wouldn't be able to find a vein each time because my veins are difficult to find on my right arm (and they can't use my left as I had all my lymph nodes taken out). They agreed to do it when I asked but not many people at the unit seem to have it (and they often have difficulty putting in the canulas). I guess there's a cost implication as they can only be put in by a specially trained nurse and you have to have the PIC line washed out every week by one of the IV nurses. xxx
Here's the support service.
Someone Like Me
@Coastal I agree, managing our emotions is hard, especially when putting on a brave face for friends and family.
It's important though to acknowledge our worries and fears and talking to others can really help. I think there's a buddy scheme where you can be matched up to someone who has been through it before and you can talk on the phone. I will search for it and put the details on here.
Do you think the anti-depressants are helping yet?
This forum and the amazing women on here are a fantastic support too. Keep talking to us all and you will get through this. 🤗🤗xx
Hi @Purpledaze I hope yesterday went well! well done on getting half way through! Lots of love xxx
Hi @Karden Thank you! I do find the ups and downs of this very hard to deal with sometimes. I'm trying to put on a very positive face when my partner and daughter come home from work/school, which to be honest makes me feel alot better. But I do find when I'm alone I tend to dwell on worries about the future particularly at my low point when steriods have stopped. I'm taking anti depressants which do help and I've been trying to keep myself busy as this tends to help distract me. It's so hard the mental strain of it all.
It sounds like you are having a break before you start the radiotherapy - I hope the sun shines for you and it is relaxing. It must have been so hard for you losing your hair twice, I hope it starts growing really soon! lots of love xxx
@Sammy73 Everyone is different and many people are happy to have a bare head or wear hats and scarves which can look so stylish.
However, it was important to me that I look as I normally do as much as is possible and wearing a wig has given me confidence to go out there and get on with life. I might add that I've continued working and that was another reason to look like me - I like to blend in whenever possible.
Again, we're all different and will do what feels right for each of us. x
@Sammy73 I bought mine during lockdown when the local wig shops were closed. Google simply wigs at Slaithwaite, Huddersfield.
They have a full returns policy and I have bought two from here and love them.
However, I understand the preference to try on in advance so would suggest asking your breast specialist nurse for details of local shops. My Sheffield hospital provides vouchers of around £75 towards the cost. You will also find that you won't pay VAT due to losing hair for medical reasons. Hope this helps. xx
To all, I wasn't going to do the wig thing but I think I want to now, any recommendations?? Im sure if I scroll through all message I will find something but I really can't be arsed. Lol!! Thanks in advance 💞
❤️I had a reaction on my 2nd docetaxol. I suddenly felt hot and my chest felt tight, the nurses were there in nano second stopping infusion and there was flashing lights in front of my eyes while a nurse very firmly told me to BREATHE, which I did. They then stuck a bag of antihistamine on for about an hour then the doc restarted the infusion 😳 I went back on a fec fir my 6th chemo and others went onto abraxane instead. It does happen but most sail through docetaxol so just go in with open mind. It is gentler in veins than fec ❤️ hope this helps anyone starting their docetaxol 😘💕💕✨✨Shi xx
Hi Sammy73 I would also be very peed off about a delay 😟…especially as we have had to cancel two holidays as they fall on my treatment weeks and can’t change them as everywhere is now booked up .
love to all xx
Hi coastal I was never offered a pic line I don’t know what the difference is with the chemo’s but the nurse has to sit with me for the whole time ! In case of a reaction I was told ,there is usually 2 of us together and she is in between I can see the other ladies with there pic lines and no one is with them , my mix changes after 4 so it will be interesting to see if that’s the same x
@Purpledaze thankyou for your thoughts, I too change chemo regime on Friday from EC to Docetaxel so like you facing another uncertainty!
Take care xxx
Everyone is buzzing in our street at the England footie results. Passed me right by, until I heard our neighbours shouting for joy! I'm not really into football anyway, but also suspect my mind is dwelling on the fact that tomorrow is chemo-day again. It seems to have come round so quickly! I know I should be pleased that I'm getting through the sessions, but I do wish the 'good' days went as slowly as the 'bad' days! Still, I'm doing ok so far I think. Nearly halfway through my treatment, and I've been lucky to have as many good days as bad days so far. I'm feeling nervous about the change of chemo - I've been on EC up to now, but will change to Paclitaxel - and the more frequent sessions (every 2 weeks, instead of every 3 weeks). With all the uncertainty that diagnosis & treatment involves, I find myself clutching to the little things that seem "known" and familiar. But, hey ho, I'm sure Paclitaxel will seem like an old friend before too long 😂
@Coastal sounds like we are on similar treatments - I've got my 4th and final EC tomorrow, and then start Paclitaxel. I hope this cycle for you is less tiring and emotional. The walking you are doing sounds like a really good antidote and hopefully the rain will ease up a bit. I love walking with my dogs, but don't enjoy the muddy / wet dog mess at the end of it on these rainy days, so am hoping for drier weather soon!
@Sammy73 oh how frustrating for you! I hope you can do some extra nice things this week to make up for the delay and to help distract you!
@Michelle21 what a week ahead of you! I hope your session today with the psychologist was helpful for you. It must have been hard to hear that about your Mum. It sounds like you have some good friends who are looking out for you, and that in your walks you have found a small but significant way of keeping sane despite everything that you are going through. Extra hugs to you at this time x
@Poacher65 I will be thinking of you tomorrow, and sending lots of positive thoughts your way for your "D-Day" appointments. You've got this!
I hope everyone else is doing ok - reading all your messages plays a big part in helping me to stay upbeat. Your strength, advice, jokes and tears are a big comfort for me and remind me that the ups and downs I experience are not 'weird' or crazy; and I just wanted to say thank you to you all 🤗🤗🌻
@Love running how has your holiday been? I hope you have had better weather than here in the UK! Do you have any photos of the "Midnight sunshine"? That must be strange but wonderful to see.
I think I agree with your children about cauliflower pizza... I've never tried it, but I don't think it will be high on my list of "must haves" 😂
Macarons, however, are another thing - mmmmmm, delicious. How did you get on with making them? They are complicated, I think, to make?
Over here the rain has mulched my tiny vegetable patch, but we did manage to 'harvest' 40 peas 😂😂 They were very tasty, but not nearly enough!
I had a cooking fest over the weekend as it was my husband's birthday, and he asked me to make lots of his favourite dishes. I really enjoyed it as I was in my "up" period, so appetite was back and taste buds in 'normal' mode. That will change tomorrow as I have chemo again... bleurgh! Also my 4th and last EC - hurrah!
Hope you are doing well x
@Sammy73 I feel your pain! I’m totally focussed on my end date so if that changes by a week here and there I would be also be really fed up. It so must be frustrating but that’s the problem with all of this we are in the control of others and our bodies do what our bodies do. Hopefully this is the only delay and things will soon be on track for you again.
@Coastal Thanks for your kind words, yes it is a horrible time made even harder. Walking definitely helps me, glad it is helping you too. I hate that steroid low, it’s like a **bleep** cloud hovering over you isn’t it? Fortunately I haven’t had it so much this time I must be on different dose as it is a different treatment, but I remember it from last time and found it really hard.
Just had my second appt with the Psychologist, once again it was an hour of crying but it’s good to get it out.
Love to all xx
@Coastal Thank you for your best wishes. Yes, the 2 separate blocks of chemo have been a challenge, especially losing my hair twice in such a short time but I'm nearly there now.
I start radiotherapy on 27th July for 5 days and then the remaining treatment is Herceptin, letrozole and bisphosphonates.
I'm sorry you're feeling down, it can come along out of nowhere can't it? I guess we just have to accept that it will happen and find ways of dealing with it. It's no surprise though when you think of all that we're going through.
Sending hugs. 🤗🤗🤗
@Sammy73 Oh, that's a real disappointment for you, I completely understand how you must feel. I think we're all looking ahead to what we can plan and when and it takes something like this to knock everything off track. Fingers crossed that your bloods soon recover. 🤞🤞
Hi @Sammy73 argh! I totally understand - that's so annoying. I'm the same I just look to the end date on my calender and want to get there rather extending it. My oncologist warned me that I might have to have some three week gaps rather than two but I have been ok so far. I know what you mean about having to rejig plans - I've got certain nice things planned for my 'good days' but it all goes to pot if chemo dates change. It's my 4th EC next week (cross fingers), so I'll be halfway through too which will feel really good. I hope you can have some side effect free days on your week off! Take care xxx
Hi @Karden wow - you must be so looking forward to having the last chemo this week. You have done so well getting through it all and having to do the chemo in these separate blocks - it's a long haul isn't it. I can imagine having the Pic line out will be amazing too. I don't mind my one much but it's a constant reminder. I hope that all goes as well as possible on Thursday and that side effects are gentle for you. Take care xxx
Hi @coffeeandcake really sorry to hear about your cold! I hope it goes really soon! That's something you don't need to get - I'm waiting to get a cold myself from my daughter at school or partner working in the hospital! So far I've escaped. Maybe its a good thing we are having the chemo in the summer with less illnesses I guess. I had my 3rd Ec too last week, it went okay, just the usual side effects but I think I've just been feeling more tired and down (which I tend to get after the steriods each time). I'm trying to put some more things in the diary for those low times now to make it a bit easier. Hope the MRI goes well, will be really interesting to see what EC can do xxx
Hi @TicTok I totally know what you mean about not being bored going to work! I seem to fill up my days really easily, not sure how I fitted work in and I've now got wimbledon and the tour de france to watch! I've never had time before, so that's a silver lining. I'm sorry to hear about your vein - I really hope they sort this out for you! I can't remember if you have a pic line? that could be a good option - my one hasn't caused any problems yet and I find it quite easy to manage. xxx
Hi @Poacher65 I just wanted to say I hope all goes well with your appointment tomorrow - it sounds really positive that the scan showed the shrinkage but I know that terrified feeling so well. Do take care of yourself and I'm hoping it's as unstressful as possible. Good luck with the next 3 sessions of chemo on the 2nd too - may they be gentle. Lots of love xxx
Hi @Michelle21 Do take care, it must be hard trying to deal emotionally with your own health as well as your dear mum. I hope all goes well with the psychologist and your chemo on Thursday. As you say quite a week. I have had a bit of a down week but went for a walk this morning and I'm seeing a good friend later which will cheer me up. I think you are right trying to get outside every day really makes a difference - even if it is raining! Lot of love to you and take care xxx
So I was due to have my Last EC tomorrow and that would mean I was halfway through my chemo!! But my bloods are too low!! So postponed for a week!! Really pissed off as any So called plans will be now regiged!!
Hey ho. Roll on next week!!
It's strange how our minds work!! I should take it as another week off but it means another week of everything.
Hope your all doing well?
Michelle21…. I dread to think what they will look like after 8 , I like to have it in my left hand as I think in my head that it’s going to hit Boris full on first 👹….I think I will have to change tactics and sneak up from the right now .
karden …congratulations on coming to the end of your chemo I hope all goes well for you 👍
love to all you ladies x