Hi I am working full-time Mon-Thursday and have Fridays off for chemo. Am on weekly paclitaxel and three weekly trastuzumab. I work from home as I have since the pandemic started. I think I would struggle if I had to go in, and my neutrophils are low so I’d be anxious about it. I find Mondays are my worst day so have cleared them of anything draining like meetings and hoping that will help. Wednesdays and Thursdays aren’t bad for me. It’s very challenging juggling communications from hospital, work and the extra self are. I wanted to try it because I wanted a focus other than cancer, and because I think I’d miss the daily contact with my colleagues since I live alone. So far I’m managing and it has distracted me in way that’s been positive for me. I think everyone is different in what works for them. You will make the right decision for yourself xx
I did the course last week. The teacher Juliet explained everything clearly and had great tips. It was lovely to be with a group of women who ‘get’ what you are going through, and are really supportive. I was nervous beforehand but it was worth the time and effort. Hope you enjoy it xx
Thank you so much for the reassurance re the injection. That’s put my mind at rest.
The make up course sounds good. Enjoy!
Wishing you (& everyone else) a relaxing Sunday.
@Louise65 I am doing that course on Tuesday afternoon. Looking forward to it. I’ll let you know how it goes.
Glad to hear your OK and to put your mind at rest I've just done my injection and there is no click at the end xx
When I was having treatment a nurse asked me if I was interested in a zoom look good feel good 2 hour session it used to be f2f. After they drop a goodie bag in the ward for you to collect. She showed me its got lovely selection of skin products and make up all vert good names. Said yep sign me up.
Love to all
@simplyeve I’m so pleased to hear you have managed to get away. We are planning a trip to Cornwall from 16th to 27th July, which we are really looking forward to. Also, a friend has given me some tickets to Wimbledon (Centre Court) for Monday, so very excited about that. These treats make me feel like life is not all about the cancer treatment. My next chemo is on 09/07, as my oncologist wants me to have it on Fridays to coincide with his clinic days, so this cycle I will have had 3.5 weeks between infusions.
I hope everyone else is getting on ok. Sending you all love, Siân xxx
Pleased to hear you have had a positive day. I’ve done some cleaning and laundry and cooked. However much more tired than I was after first cycle. Not sure if I’m just catching up on the sleep I lost last weekend whilst in hospital.
I did my injection this afternoon. The ice cube worked a treat. However I didn’t hear the click at the end so got anxious I hadn’t done it correctly. Time will tell but can’t see how it didn’t go in as the needle was in and I pushed down and then the needle had disappeared when I took it out. I’m such a worrier. I wish I had a nurse on call 24 hours 😂.
I have lost nearly all my hair. Large bald patches. I wear turbans in the house and my wig when I’m out. I had poor hair so I quite like my wig as it’s thicker and styled much better.
Take care everyone.
@simplyeve afternoon I'm doing really well thank you.
Went to bed early woke a few times but wasn't too bad then wide awake at 4.30 feeling nauseous so got up had cup tea and piece toast. 5.30 walked dogs then showered and went back to bed for snooze. Have eaten small meals and apart from just feeling bit tired even managed trip to Marks got few nice foods and a crushed Colin the caterpillar dessert lol.
Well done on the hair cut, I've got a wig but really not bothered. I have a few hats and find I need one in evening when it's chilly and also made mistake of being out in rain no hat and felt cold after. My hair is now falling out alot and I've got patches of bald so the bathroom looks like a barber shop, plus my eye lashes are going which is uncomfortable in my eyes.
How lovely having time away in the caravan we're hoping for a day trip to seaside this month as its my birthday end of month and I'm craving seeing the sea.
@Impatience hope your doing OK. I start my injections tonight and have icecubes ready.
Hope everyone else is doing OK.
Love Louise xx
Just thought I would check in and see how those who had their treatment are doing; glad to hear so far so good despite the vein problem!
@Louise65 I have now had my head shaved too as literally every time I ran my fingers through my hair it came out in clumps. I have to say it was easier than I thought, I had a grade 1.5 to start and then my hairdresser went over it with a 1 so I still have some hair but it is now very short and I have two chemo hats, I have decided to hold off on a wig at the moment.
@JessicaB I'm so pleased that you have finally got your start date, I know how anxious I was with the waiting, but once I had my plan in place I was able to relax more, as silly as that sounds.
@Fairie I am just about 🤞 over my tummy problems and for the first time since before my chemo have coped in the bathroom without meds of any sort, but understand exactly what you mean, I was trapped in a cycle of Laxido, Loperamide and Laxido, but having spoken to the Oncologist on Wednesday he has advised me to reduce the first dose of Loperamide to one tab instead of 2 and then 1 each time and if I haven't been again after 24 hours to take Laxido and start off with one sachet a day then two the next etc, etc but all the while to get as much fluid intake as possible. He also said he would reduce the strength of the Ondansentra which in itself can cause constipation, which was my initial problem. It may be worth checking with your team if you have had similar problems. Sorry if this is too much info ladies!
We have managed to get away in the caravan for a few days and I am typing this from the middle of a field surround by sheep and with the sunshine coming through the window but it is oh so relaxing and I am beginning to feel a bit more like my old self, though I still get tired really easily and had to have a sleep after setting up yesterday. Today I managed to walk around the village to the local butcher, veg shop and a coffee shop that does take away sandwiches, so am really pleased to have been able to get out and about a bit.
Hope everyone is keeping well and staying strong.
Love to all Yvonne xxx
Good to hear you are home after your second session and feeling good. I was in at 9 am and home for 11.30. My session went well as they were still able to use a vein in my hand. I came home to coffee and toast but I’m really tired so spent the afternoon on my bed sleeping.
I was planning on making salmon for tea but don’t have the energy so I’ve had a bowl of cornflakes with an earl grey tea (my comfort food). I don’t feel poorly, just tired.
I have been sent home with a G-CSF injection to do tomorrow so I’ll be using your ice cube tip. Not looking forward to doing it but really want to avoid another hospital readmission so hopefully the injection will lift my neutrophils to get me through this cycle.
Wishing you a good night and weekend.
@JessicaB great you finally have your date. My user name is impatience because I’m rubbish at waiting for anything so you were right to push for it.
Hope everyone has a nice relaxing weekend. Take care.
@JessicaB glad to hear you've finally got everything sorted and you can get started.
@Impatience hope your day has gone well.
2nd session lasted longer than I expected as my vein decided to stop so another canula was put in. I drank lots today had my sandwich during treatment and just remained very relaxed all through it.
When I got home I took couple paracetamol and had cuppa and doze. So far so good feeling ok will be going to bed early as am tired. The nurse said I didn't look old enough to have a 31 and 28 year old so that made me feel good as rest of my hair is coming out now so baldness is coming fast but will embrace it and just wear hats as dont fancy a wig.
Hope everyone is doing OK and has a good weekend.
Love and support
I just wanted to say I am thinking of those who have been so poorly and hoping you are feeling a little better. 🤗
For those having your sessions today I hope it goes well. 😍
I have news now! My impatience finally got the better of me and I rang for an update. The MRI results were fine and the treatment can proceed as planned. 🙄
So I am all booked in for Thursday. It seems to have been a very long (but thorough) journey to get to this point. My first mammogram was on 18 February, Mastectomy on 26 April and now chemo on 8 July.
I tried so hard not to read too much but wanted to be prepared - such a fine line really. I had my hair cut off at the end of May thinking chemo was going to start and now I am off to the hairdressers again for another cut!
Are any of you using the OWise app for tracking of your symptoms?
Take care of yourselves, lots of love
Jess x 😘
Thanks Sian! I’ll let you all know!
i 🙏🏻 It’ll be better next time. Tummy still not right! 😞
Much love xxx Fairie
Thanks all for your very valued support.
It helps tremendously to be able to come on here and read that the lower dose has worked well for you @hopeful1974, I am so sorry that you too have been unwell @Fairie. I do hope that everyone is now well on the road to normality. I'm feeling much better and know that with all the support on here we can get through this together.
Stay safe everyone and have a good weekend.
much love Yvonne xxx
@Fairie I’m really sorry to hear that you also haven’t tolerated it that well this time but like I said to Yvonne, I started with reduced doses from the get go and have been ok, so hopefully with reduced doses you may also be fine next time round. Sending you love and positivity back! Siân xxx
❤️Everyone, you are 👭👭step by step getting each other through ❤️ it’s a bit of a rollercoaster so hang on tight to each other as you are doing ❤️ difflam mouth was helps too, you can ask your onc to put in your goody bag at appointments when you see them to go in with meds. Anyone who got thrush mouth get them to stick fluconzole in too so you can’t head it off immediately if it happens again ❤️but always ring your rapid response and check with them for anything ❤️ silk pillowcase helps when you loose hair, gentle on scalp and scalp care kit from beauty despite cancer was useful. Don’t forget if your antisickness meds don’t work ring your teams you don’t have to try and battle through thinking oh this is chemo, they will tweak till they get right. Now any botty block from steroids get your anosol and senokot/movicol at the ready ❤️ chemo is a juggling act and you are all doing amazing ❤️💕💕✨✨Shi xx
Dear @simplyeve , I was worried it might be something like that when you hadn’t posted for a while. I am so sorry to hear you had to go through so much. I hope the dose adjustment will help. Because I was so poorly on EC last time round, I was given lower doses of the chemo this time from cycle 1 (80% of the Docetaxel and 75% of the Carboplatin). I was also given 5 days of the steroids. Perhaps those two things combined explain why I have not been so poorly this time. I really hope you have an easier time with cycle 2. I realise that I have been lucky and that not every cycle will necessarily be as good, but still hoping. Sending you lots of love. Siân xxx
@Fairieit look me forever to work out how to actually write a post in the beginning as i wanted to write simple hello and not reply to a specific message. ive come to the conclusion it is a limitation of the site that if you want to type/reply then you have to simply click on the Reply from anyone and then start typing and your message will appear at the top. Thats what i do and if i want to refer to anyone specifically i just put the @ symbol and then the names will appear (HTH).
Thankyou for the kind words .
Im on FEC followed by T . Last night was the last injection for this cycle so hope bones start to feel better at night now . Dentist later have been using gel-Clair wash from chemo unit then got on prescription it does help . Just trying to eat little and offers if possible.
Hope you had a good night xx
i wish I could type a reply all but can’t see how that’s done!
Each if your names I hold in my thoughts and I send huge love and positivity to each lovely lady in this forum xxx
sorry not to be in touch for a while. Similarly to Yvonne, but nowhere so bad, I have been struggling with similar issues although not hospitalised. I’m so sorry you have been so poorly Yvonne.
I do wish you better soonest.
my second chemo is due on weds 7th and I’m dreading it based on how I haven’t tolerated it well this time but the oncologist has told me he is reducing the dose and will prescribe something to protect my stomach and keeping me on steroids longer.
louise your experience with the van and car sounds awful and very suspicious 🤦♀️ Well done in getting the car reg. I’m so glad you and your dogs are safe.
I send my love to you all...
Sharon (Fairie) x x x
I am so sorry to hear you’ve had a rough time of it but thrilled to hear you seem to have come through the outside albeit in baby steps. It’s also good to hear your onc team are looking after you.
Hospital stays are not what we want but I told myself it’s not what I want it’s what my body needs. That helped me through my stay. I agree with you re age and fitness etc. I’m 58 and although the eldest of 5 sisters (youngest 18 years younger) I’m the fittest of them all but BC still decided to pay me a visit. Yes there are risk factors but BC doesn’t care about such things. That’s why we need to give it a good kicking!
Wishing you a better week. Take care.
@simplyeve so sorry to hear you've been really poorly what a nightmare for you. Hopefully you and your lovely hubby will be able to enjoy your anniversary.
I had my bloods this morning she also took it for my genetic screening so will find out in 8 weeks.
Although I'm isolating I'm still walking the dogs as need some exercise today's walk ended up very scary as had a van and car pull up I was way outside our village. The van went but car stayed so I called my partner just as I got close enough to give him the reg the driver realised and floored it. Now means I have to walk round the village so sad.
Hope everyone is OK can't believe it's July tomorrow.
Love and support
I hope everyone is still feeling well and coping with whichever stage of the treatment you are at.
@Heels to walking boots huge congratulations on your marriage, what a wonderful thing to be able to do and I am so glad you were well enough for your special day, you certainly have a memory like no other!
@Trowster wow getting out on your bike, how fabulous, and your photo's are great.
@JessicaB I'm so sorry to hear you haven't been able to start your treatment yet, but regardless of when you start you are still a valuable member of the June group.
@hopeful1974 sounds like you have this treatment cycle sorted, I am so pleased your treatment has been better than the first lot of chemo.
@GonnaGetThruThis congratulations on your 20th wedding anniversary, sounds like you had a lovely day and you are managing well.
@Louise65 glad to hear you seem to have overcome your problems and good luck with your treatment on Friday.
@Impatience really hope you are starting to feel better and your positive attitude is so amazing after all you have been through, having read all your recent posts I am thinking to myself I need to be more like you!
@Flower123 so sorry to hear you are feeling rubbish, if there is one thing I have learned from my personal journey it is to get help sooner rather than later, the team are there to help you, but they can only do it if you let them, so don't hesitate to give them a call as soon as you feel you are not coping. You'll see below why I am saying that.
Ok so this is why I haven't posted recently, I had to be admitted to hospital on Friday as I had acute kidney injury caused by the nausea and diarrhoea and ended up having 4 x 8 hour saline drips and 2 x 10 hours over the course of Saturday till Monday, during this time I still continued to have diarrhoea, so stool samples were sent off, all my results have come back negative for infection, the outcome was I was discharged yesterday and have seen the oncologist today, they have delayed my treatment from next Tuesday to Thursday (as Imp said gulp!) and will lower the dosage, I now have a mouthwash which has helped tremendously, also have changed my antisickness from metocloprimide to cyclizine (as yet untested) and I will have additional steriods to take over day 4 and 5 not sure of dose yet, but they will give them me after my treatment. The Dr today advised me that I am what they call a delayed sickness type, basically my nausea doesn't start until 4 or 5 days after treatment. He has reassured me they will keep a careful eye on me with this next treatment and if I still am not tolerating it well they will look at other options. So I am putting myself in their hands and praying the next round will be kinder to me and my poor hubbie, who quite frankly has been amazing in all of this, we have been married 42 years next Wednesday (7th) and he's still with me god knows why! Hopefully we will get a meal to celebrate though it may be a take away/delivery. We are also going away in the caravan from Friday to Tuesday as we both need a good break.
My hair is now falling out at a rate of knots, so I have an appointment on Friday morning to get what's left of it shaved and they are going to paint my nails with my dark nail varnish in readiness for my next treatment.
A couple of you commented about age and fitness, I really don't think BC takes account of any of that, my sister has had BC twice first time age 37 she had to have a mastectomy, she had DCIS over a large area but required no further treatment, then again at 52 but it was IDC that time and hormone positive, so opted for Mastectomy again, and has been on hormone therapy since, but no other treatment and she is now 65 . Whereas I am 62 and have IDC which is triple positive so totally different treatment again. Our Breast Cancers are different and there is no common gene, so it is simply a matter of luck I have decided.
I hope you are all feeling well and rested tonight and good luck to those of you having treatment on Friday. To everyone else stay strong.
Love to all Yvonne xxx
@JessicaB I haven’t worked since I was diagnosed and think I would have really struggled to do so due to the fogginess of my thinking. I have been better on this new round of drugs (TCHP), but still think I would struggle to get back into the working mindset. I work in a school, so that wouldn’t be ideal in terms of germs anyway. Some weeks, the cancer treatment does feel like a full-time job. I suppose it depends on what your job is and how flexible your employers are in terms of how you work, but for me it would have been very tricky carrying on. Siân xxx
@Flower123 Sorry to hear you haven’t been feeling great and wishing for some better days to follow for you. Which chemo drugs are you on? I agree that you just need to rest when you feel tired and don’t try to do too much if possible. Going for a walk once I felt able to did give me a big lift but when I did EC chemo, I had to wait several days before I felt able to do that. Sending hugs. xxx
@JessicaBoh no what a pain to not have started but do stay here as like you said we are already on this journey together and for some of us, like me just starting, it is going to be a long road ahead so in a month or so it wont matter the exact date anyone started. Also some have already had surgery, like yourself, so this is your 2nd part, whereas I am just starting the chemo so i know that it will be probably November time that surgery is an option for me.
I'm still working but lucky that I work for myself (although the husband likes to think I work for him lol). We have our own business so I've worked from home for the last 10 year since our daughter was born and i work as/when i can between school hours. I absolutely think it would be a struggle to be having to go to work during this time, at least in the beginging when i was was at the hospital for some appointment or other at least 2x per week.
Once the treatment starts then it really depends on the impact of the side effects and how you think you could do your job. Considering so far alot of the ladies here have had a number of bad days, ending up in hospital etc then unless you have a really sympathetic boss its going to be hard. Also agree about concentration, I seem to be all over the place some days.
@GonnaGetThruThis Sadly Kim, still waiting for results from the MRI. Had a picc line wash on Monday. I feel like a fraud because I won't be a June starter really, but I feel a real connection to this little group.
@Flower123 Sorry you are having a tough time, but the advice here is good. Be kind to yourself and rest up x
I am wondering how many of you are working during your treatment. I was off for four weeks for my mastectomy but back at work now. I do find it hard to concentrate at the moment plus with lots of appointments everything is a bit disjointed and I need a secretary to keep track of everything!
Good to hear you have had your first session. Remember you have started so there will be an end.
The mouthwash is good. Use it every time you brush your teeth. I used a baby toothbrush and brushed gently. I also used the whole bottle of mouthwash in week one! On day 3 I started with sore gums but after a couple of days they calmed down.
Listen to your body. If you can’t get out of bed then don’t. It will soon pass. I was told that there would be good days and not so good days and now nearing the end of cycle one I can whole heartedly agree with that.
Enjoy your long bath soak, pamper yourself and hopefully you will feel better soon. Sending you positive vibes.
Hi Everyone, sorry not wrote for a while .
I think you are all doing amazing.
Congratulation on you wedding x
I did have my first chemo on Friday 25th but have felt so unwell since . Struggle to get out of bed and get motivated!! I have got very bad mouth ulcers , thrush so painful got mouthwash from chemo unit . Have got dentist tomorrow just to check nothing has triggered of my teeth . Have had constipation got drinks to help .
Just feeling on a down. Well I’m going to run a nice bath later and have a soak . Enough of my feeling sorry for myself.
@Heels to walking bootscongratulations on your wedding, so good to have something wonderful in amongst all this.
Speaking of happy occasios, it was our 20 year wedding anniversary yesterday and we had a great afternoon out eating lunch, shopping and then having a very indulgent dessert. We then went to collect our daughter from school and went home to watch the football! Have to say I kept waiting for the penny to drop to start feeling tired/ill but i didnt. Annoyingly it is time of the month so I have a dull headache and tummy cramps but considering this is always the case on day 2/3 and i usually pop a couple of co-codamals then im doing ok so just need to ride out today.
@JessicaBany update on scans / treatment starting?
Everyone else in our little group, well done for getting to the end of June, now matter where you are in the journey and lets kick some more butt in July!
Congratulations on your marriage how wonderful and yes definitely good motivation for fighting.
Hope everyone else is OK.
Had my covid test today and apart from going to have my bloods in the morning it's back to being a prisoner.
Love Louise xx
@Heels to walking boots Congratulations on getting married! 🎉🥂
Definitely good motivation for getting through this. My last chemo was two weeks ago today and I now feel pretty much normal again. I had headaches for a few days but these have now gone and I feel good. I do find that walking and drinking lots of water do help make it pass more quickly. I’ve had a very busy day today and have almost forgotten I’m going through chemo. 😃
I hope everyone else is ok. xxx
Huge congratulations on your marriage @Heels to walking boots
and how wonderful to have a celebration to look forward to once you are through this journey. Also good to hear you’ve had few SEs and long may that continue.
Finally, yes we can all do this! We are women! 😂
How are you all? @Impatience glad you are home and wish you and Louise all the best for your second cycle on Friday.
I have been offline for a few days but have been doing well so far with SE just icky stomach and today a bit of a fuzzy head which may be due to being off the steroids--but no idea. Just trying to keep the water in take to see if that helps. And as all has been good, i managed to get married yesterday with just my partner and my daughters ...wasn't sure if i would be able to but glad i was well enough. A party to follow once i am through this! A bit more motivation to fight this.
Also, Love the motivational quotations they are great. I believe we can overcome anything...
Wishing all a good week....onwards and upwards.
Good to read your home,nothing like your own bed.
Yep 10.30 Friday much better for me means all being well will be back home by lunchtime.
I love your mountain quotation. I’m so hoping that mountain will be well out of eye range soon
@Impatiencelove that little message yes and happy that you're home.
Nothing wrong with finding motivation where we can. I saw this recently and it really resonated.
Me again. Thought you would like this. My niece sent me a message to say “5 cycles of bleurgh for a lifetime of hoorays”
Great motivator to get through this.
I am home. So good to be in my own bed. Eight further days of oral antibiotics even though they cannot find any source of infection.
Oncology call this afternoon have said they would like to keep to schedule and for me to have my 2nd cycle as planned on Friday. Gulp! However they have now said I will be given a G-CSF immediately after each session with a view to avoiding readmission. 🤞
Good to heat some of you are not having side effects from the injection. I hope I’m the same.
Wishing everyone a good week and Louise I know you have your 2nd session Friday too so I’ll be thinking of you and sending positive vibes.
@hopeful1974we could be twins! Same birth year, no family history, healthy/fit, low risk blah blah but here we are. Actually just remembered that on my initial breast exam the Dr even made a comment about how low risk i was. Oh well.......
I definitely seem to have escaped any of the injection side effects, although I hope that i havent spoken too soon, but i only have tonight and tomorrrow left so fingers crossed.
@Impatience Yes, the side effects of the injections aren’t pleasant but worth it for reducing the risk of infection. I hope you get them for next time. I always felt a bit sleepy after taking them so may try taking them before bed next time round. I do hope you get home soon. xxx
@Louise65 I have signed up for a Look Good Feel Better workshop which takes place online. I’ll let you know how it goes. It is on Tuesday next week. It is free and I have heard some good things about it. xxx
Hi Louise and everyone
I am still in hospital as they want to monitor my temp for a bit longer.
Great tip re the ice cube. I am baffled as to why I wasn’t given injections like everyone else. I’ll be asking why today. I know different hospitals have different policies. My hospital doesn’t do PICC or port lines unless absolutely necessary. They prefer to use your hand.
Anyway wishing everyone a good week and fingers crossed I may get home today. I have to say the SEs of the injection aren’t nice so well done all of you that has gone through that. Felt like somebody was walking on my bones, trots, fever and nauseous. Hopefully today will be a better day. Onwards and upwards or as Shakespeare wrote “into the breach dear friends”
Glad your doing OK on the side effects and if you do need to just chill on the settee all day then just go for it our bodies are very good at telling us what we need, we just need to listen and itcwill make getting through this journey easier. I know I'm now prepared for session number 2.
I've had a good weekend met my son and daughter in law in Stanford yesterday its such a lovely town and treated myself to a new hat and shirt. Then we had hot chocolate and crepes. Today I've had a good tidy up and clear out.
@Trowster I'm only in Lincolnshire coz of partner wouldn't of chosen here otherwise lol I'd of probably moved to North Yorkshire near my daughter. A meet up sounds great am sure something could be organised.
@Impatience how are you doing? What a rubbish few days for you. I looked in my book and my neutrophils were 2.88. I also had 7 days of injections the nurse said to do it at night. I find rubbing area with ice cube means I don't feel needle going in.
@hopeful1974 A massage sounds fab, I know my breast clinic had a lot of things planned makeup, hair etc but obviously covid put paid to everything. Although bc in younger age is less common its surprising how many it affects sadly.
Hope everyone is OK and ready for the week ahead. I've got my covid test Tuesday, bloods Wednesday and session 2 Friday.
Love and support to all
Hopeful, thanks for the nice comment, I feel getting out and doing normal things gives us a sense of being more in control of our bodies than the dreaded C, I hope you continue to have a good week until the next session, you do appear young to have got this without any family history, I was just 50 the first time and 63 this time, but lots of history in my family, hope everyone else is managing ok,
@Impatience I have always been given the G-CSF injections (7 days’ worth when on EC and this time it is 5 days’ worth on TCHP). I have two cats and do stroke them but always wash my hands afterwards. I don’t want to undermine what you have been advised by the nurses, but I haven’t had an infection yet. It is very tough to completely avoid them so maybe washing your hands each time you touch them is an option if they do decide to give you the injections going forward. xxx