Hi Sunnybear good to meet another allotment holder! In my life before breast cancer my allotment was my therapy for life stress, planting and growing is so absorbing and rewarding. But like you I just can’t do it now so I have decided that nature can look after itself and surprise me when the weather is better and I feel up to it! Our earth and it’s treasures will still be there later on, I have friends who will help me restore it I hope you do too. Then we can look forward to new growth and a new start. X
Fe that’s good you’ve team who are taking care of you ❤️❤️ And supporting you ❤️❤️ Their care and kindness will help you greatly ❤️❤️💕💕✨✨Shi xx
OK, will do! If not my mum will enjoy my massage! They do try and encourage us to use our voice in highlighting anything untowards as only we know our body! Think we women tend to take so much but they do try and keep us as comfortable as possible!
Fe, I’d check with your unit regarding massages during chemo also if you are taking any supplements please check with them on those also. It can differ from trust to trust ❤️ You will find you settle into routine with the chemo ❤️ I found breaking them down into cycles helped, you do what works for you ❤️ If your antisickness meds don’t work, ring your unit and tell them they will tweak them, you don’t need to battle through. I was lucky no sickness or loss of taste during chemo. Do mention your ports tender so they can keep eye on it or give you some meds to make you more comfortable. Sending ❤️💕💕✨✨Shi xx
Thanx for taking the time to write about your experience to date. Agree, surgery looks like the easy part!!! Chemo sounds really tough particularly the latter stages.
First lump found around my 56 birthday end of November, BC diagnosed in December mastectomy in January and first chemo in 2 days. Having lots of hot flushes before I even start think it’s worry. Overloaded with info as I just need to know everything! But that then tends to keep me up at night so trying not to read too much before bed.
Had pre chemo briefing yesterday for 90 minutes and another dozen books but assume they just need to prepare you for the worst! Arm is still very bruised from port insertion a week ago. Port worked for bloods yesterday but seems very tender. Feel like a wounded soldier!
Fitted for cold cap. BCN said to wash hair before and bring conditioner and they will wet hair again before starting when fitting cap. Any tips here on this?
Have booked a massage tomorrow evening before first chemo, is that ok? Of course avoiding arm with port, avoid under arm where lymph nodes were cleared, avoid mastectomy but mostly back and neck where I hold my worry!
Thank you all for sharing so much during this journey we all share to different degrees.
Sunnybear ❤️❤️ If they do reduce it again your reduced dose could be someone else’s full dose ❤️ After my first one put me in casa nhs my remaining 5 were reduced dose 👍 I found getting bit of make up on helped with the hair loss, that and a lot of frenzied steroid induced wig buying, coloured ones, tinsel ones, 🤪🤪🤪I just couldn’t help myself 😁😁keep 💪💪💪and rest when your body tells you too, it’s a rollercoaster during chemo, just hang on there with the others and you’ll soon be celebrating with each other as you all start to come in over the line ❤️❤️💕💕✨✨Shi xx
despite the dose reduction my feet are zinging, I mentioned this to my BC nurse who said they may reduce again but I am concerned that the treatment won’t be as effective, anyway I will see what they decide for next week.
My hair is also falling out, I have lost about 80% but it is an even loss and I can’t decide whether to have the rest cut off or leave it to nature. Though I guess I am starting to feel self conscious when I am out. Hair is such a defining part of us.
i am starting to get tired now and can’t walk as far as I did which is depressing as I know it is important to get out - I am frustrated that although planting loads of daffs in my allotment in the autumn I haven’t had the energy to go and see them! Hopefully the other allotment holders are getting the benefit.
take care and best wishes to everyone
Just to let you know I found rads a doddle after chemo. We called it the Sunbed lounge because it was like being on a Sunbed for a few minutes 😁 you will need to pace yourselves on rads it can give you fatigue, so drink lots of water and rest when your body tells you ❤️ Get at much air as you can to skin (think flowing kaftan) for in the house, ni bra or vest, and keep slapping cream on you can have a bit of a sizzle after the first week but you will be fine ❤️ When it gets near to rads ask away for tips and tricks if you need any from anyone on here. Our unit had music playing while it was being done so really did feel like being on Sunbed on the beach 😁hope this helps you all ❤️💕💕✨✨Shi xx
Hi everyone. My hair started falling on day 17 and Has now completely gone. I decided against cold cap and wig and have nice headscarves and soft hats from the charity cancer hair help. Despite my own decisions on all this it is shocking ands upsetting to see myself so differently but I am gradually accepting it and friends and family are really supportive.
i had my mastectomy first, I found it traumatic but it has healed well and on balance I think the chemo for me is worse because of the cyclical and cumulative effect. Surgery is a one off that you recover from and I am sure you all will but give it a good 8 weeks to feel better. And it’s an emotional experience so I found it such a help to talk to my Macmillan nurse and to friends and family. I am having 3 weeks of radiotherapy after chemo, I have been told that compared to chemo it will seem easy! Hope so.
warm wishes to everyone as we go through each cycle, I have a week of respite now until round 3 on 26/2. Sally xx
Jemmalou101 mine started shedding on day 15 too. Mentally I mustn’t of hit my limit with it yet as it feels less traumatic than shaving my head yet but one of my friends who went through it said similar where she felt more in control once she shaved her head. If I keep shedding at this rate the choice will be taken out of my hands anyway!
Daisy D I hope your wig fitting went well. When I had one the woman was lovely but it felt very rushed so I went to a shop this weekend and spent a bit more time trying some on which I felt more positive about.
Im also having chemo before surgery, I might be wrong but I have it in my head that thE chemo will be harder than the surgery (i suppose the surgery is done quicker) so I’m telling myself I’m getting the hardest bit over with first.
Daisy D, I found the reality of hair loss was not nearly as bad as I was anticipating. I was very upset about the prospect of it but am now used to my wig and have even had a few comments about how good my new haircut looks!
Jemmalou your treatment plan sounds very similar to mine. I'm having my final EC today then 12 weekly doses of taxol from the beginning of March to the end of May. I can't advise as to whether the next phase will be easier but I've been told the same as you so I hope so!
Good luck and positive vibes to everyone xx
Furns85 I am on EC and 15 days into my 1st cycle I had a massive shed (I did cold cap too) this continued for 5 days when I finally braved the shave as was getting more depressed with my hair coming out slowly in massive clumps. Shaving was emotional but once it’s gone I actually feel better, I was so stressed about my losing my hair and feels better just to admit defeat. I got my wig and wear it when I go out but I do prefer just putting hats on as the wig makes your head itchy. Defo won’t be wearing it once the summer months come in!
I have got my 3rd and final EC on Wednesday and then 3 week break till I move onto weekly paxtol for 12 weeks, anyone ahead of me and give me some idea what to expect ?? Nurses keep saying as I have been great on EC paxtol will be a breeze but I am worried!
I know the feeling of worry I constantly ask my partner if he thinks it’s working as I wanted surgery 1st but consultant advised that having chemo before surgery was the better option. But hair coming out is a massive sign it’s working as it’s attacking the hair cells so must be working with the cancer ones too! I had a MRI last week to check on the progress and hoping it’s showing that it’s shrinking (it defo does feel softer but to me doesn’t seem like it’s gone any smaller)
sending lots of love to everyone on this journey! Keep positive 🌈💕 Jem
My next chemo is on Tuesday which will be my third one of the paclitaxel . My regime is weekly then every 3rd week its carboplatin with paclitaxel . Then the next cycle is epirubicin with cyclophosphamide . So far i havent lost any of my hair . My hair is long and quite thick . I have got appt in the morning to go for a wig fitting. Im dreading going as it feels so sureal. Im going to then have it cut shorter so i can donate it to the little princess trust so hope it does last till Wednesday for me to do this. Im struggling with the side effects of stomach cramps and sore throats as well as the chest pain due to the node and tumour pressing on the nerves. Its just such a difficult time and i send you all my love and positive thoughts. I find it difficult as would have liked to have surgery first but obviously the consultants know what treatment is best . Mine is triple negative grade 3 .
Im normally such a planner and i find it so hard when i havent got a date to work towards for the operation.
Sending you love and best wishes xxx
Good luck everyone too! One more week down for us all ❤️❤️
I have my second one this week, I feel like I’m entering the unknown again. I also started losing my hair this week. It feels like so much is coming out (I do have a lot of hair thankfully), it has definitely felt more traumatic than I expected. I’m hoping it’s just a few days of losing a lot and then it’ll tail off.
Does anyone else have any experience with using the cold cap and how long the initial shedding lasted? I’m guessing it’s different depending on what ‘cocktail’ your on. I’m going to perceiver with the cold cap for now and just keep my fingers crossed
sending everyone the best xx
I'm also having chemo prior to surgery and have the same worries about whether it's working. Gaah!! I can still feel my lump which doesn't help but I've only had 2 rounds of EC and have one more and then 12 doses of taxol.
Good luck to everyone having treatment this week or managing side effects xxx
Sunny ear, sending ❤️ Please do let your team know about your hands and feet even if things improve by next one, it’s very important that you do so no permanent nerve damage is caused by the chemo❤️Please keep safe ❤️I know you will 💕💕✨✨Shi xx
Thinking of you and hope that they find the source of infection soon so you can get back home to your children and start to feel better. Must be so hard for you
Sending you lots of love and best wishes xxxx
My oncologist has reduced the dose of Taxol this week and it helped but now the joint pains are starting to come back which is weird and my fingertipsare numb which is annoying as I can't pick things up!
Does anyone else have cold feet? I am finding it really difficult to keep my feet warm even when sitting with a blanket round them!
Good luck to everyone who has chemo this week
I know what you mean about feeling depressed. Im normally a positive kind of person but finding it so difficult at moment to cope emotionally. My main issue is the chest and breast pain but as i reacted to all strong medications i am only able to take paracetamol and ibuprofen. So pain limits my daily activities. Im usually working and doing all the normal everyday mum things . Just feel quite helpless at the moment . Im having chemo prior to surgery and just keep wondering how do i know it working ? Im trying to keep away from Google etc but just getting myself so anxious .
Thank you for reading and i wish you all happy thoughts xx
Hi that’s exactly how I was for 9 days after round 2. It made me feel very depressed. Now I feel better I almost feel hyperactive, as though I have 10 days to feel ok before I start round 3! Very weird way of life isn’t it? Knowing we have to go through this 6 times before we can feel we are really on the road to recovery and then it’s radiotherapy! Thinking of you all in this difficult world of chemo
So I coped quite well with first two chemo cycles, this third round, I feel more nauseated and tired, I wasn't really expecting to feel like this. My session was Monday and I just want to crawl into bed today.
Hi Daisy I have not been prescribed anything but after round 2 I also experienced stomach pain and have a sore mouth. I was advised Difflan mouthwash for the soreness that I think is caused by the roof of my mouth peeling off, rapidly dividing cells that are affected by chemo like hair follicles. The Difflan does help but keep an eye on your temperature in case your sore throat is an infection.
After 10 days (today) my stomach pain and nausea have finally retreated and I actually felt like eating rather than making myself eat. I hope your stomach settles too, it’s so miserable feeling like that. But contact your chemo centre if you are worried, Im sure they will want to help. Take care x
Im just about to start my 3rd paclitaxel on Tuesday . I have been experiencing sore throat and stomach cramps . Has anyone been prescribed any medication for stomach cramps ?
A friend sent me this the other day, for those with little ones
I have not lost my hair yet, 2 cycles in and next one on Monday with cold cap and doing every other week, the breast nurse told me to give it a go but thought as I was doing EC every other week I'd lose it so I am expecting to lose but the longer I can keep my hair I feel a bit more me.
For those in pain don't wait to see your oncologist, ring and tell your breast nurse about anything. If there is anything more they can do to help they will, we should not suffer more than we already are. I was immediately seen when I called about my neck and shoulder pain.
Hi all, it’s a difficult journey for us all. I feel so sorry about the pain you are in Daisy, it must be so much more difficult.
My hair is so thinned now, all over my clothes and pillows etc such a cruel reminder. I decided to go for headwear rather than a wig. I am on the Filgastrim and my main issue has been bone pain which is apparently caused by bone marrow stimulation. But helped with paracetamol. I also think the dexamethasone makes me a bit depressed, I am on 8mg, have others felt like crying a lot during days 1-4?
I recognise the importance of being positive about the end result but also that this is hard going. 4 more cycles to go!
Hugs and warm thoughts to all xxx
I totally understand what u mean about hair loss / pain. I wasnt sure either what to do about wig fitting. Its so difficult to know what to do and what to expect . Im just not sure when to expect it to fall out as im having chemo weekly not sure if means it will be quicker. Do you have to administer filgrastim injections ? If so just wondered if u have experienced any sore throat /heartburn issues?
Hi Daisy D
so sorry to hear you feel so bad and hope you improve soon. Pain is so enervating and makes you feel so low.
Good luck with the wig fitting, I can’t decide whether to get one or not so keep putting off the decision while I still have some hair! That’s the coward in me!
I thought the hair loss would be the worst thing but I think the pain beats it as it is unrelenting.
take Carr and best wishes for Tuesday.
Hope your pain subsides soon. Ive not been to well either but think its related to the analgesia fentanyl patches that i have been precribed for pain . Havent been able to get out of bed for last 2 days . My next chemo is on Tuesday so hope i have recovered from this by then . Ive also got appt to have wig on monday which im nervous about. Sending you lots of hugs as hair loss is such a difficult ordeal to facexx
my hair is also shedding and very thin. Also terrible pain in my knees and hands and feet. I see oncologist on Monday so will see what she says
Glad to hear you are tolerating your first cycle quite well, it must be challenging with a small baby to care for as well as yourself.
To add to your excellent prep list I discovered some wonderful skin products by Jennifer Young that are organic and made for women with cancer, very nourishing for skin and nails. Also Faith in Nature shower gel, no chemicals.
My hair is now shedding in handfuls so have asked my hairdresser to cut it really short. I hadn’t anticipated how sad I would feel about my hair loss. My eyes are really itchy too so I am guessing it’s lashes that will go soon 😨. At least we know we are not alone. Hope all your weeks go well xx
Taxol is the only chemo I have had, so I can’t comment on whether it is better tolerated although it is supposed to be kinder! I guess everyone reacts differently.
all the best, Sunnybear
ive just had my first treatment week, I am on 3 weekly Docetaxel and carboplatin. I am so relieved to have started, the limbo and waiting for results has definitely been the hardest part for me so far. I have triple negative bc and nodes effected. I also have a 6 month old baby girl to add to this poor situation but she definitely makes each day easier.
the change to my taste buds has not been fun, I’ve been drinking the volvic flavoured water too and water with cut lemon and limes in it and barley water. I’ve found chewing on gum helps and I’ve been rinsing my mouth out with corsadyl mouth wash and using a soft child’s toothbrush. It’s been fun and games finding things to eat that taste nice although I’m on day 6 and feel the taste thing has eased up a little. I’ve found warm foods are better- salad is out! Weetabix with milk and honey has been a good fix for first thing in the morning.
I don’t know about anyone else but I thought there would be a good solid guide on how to prepare for treatment starting but I guess every treatment plan is so bespoke that everyone reacts differently. Some of the things I did in advance were:
-got my eyebrows microbladed (I haven’t lost them yet but very glad I did it)
-Stocked up on paracetamol; Imodium, lactose and clarityn (I’m on the bone marrow injections and i read clarityn can help so I’m giving it a go- so far so good!)
- bought some CND nail treatment oil, hand cream, eye drops, lip balm. My lips and eyes definitely feel drier
- I’m trying cold capping, first sessions wasn’t bad at all, to the point where I’m convinced the nurse didn’t put it on tight enough. I got a soft fabric headband to put on my forehead.
those who are cold capping, are you dampening your hair before it goes on? I did this last week and the nurse looked at me like I was crazy and she said most people didn’t do it?!
im expecting my treatment to have a cumulative effect but I can honestly
say so far (day 6) the first round has been more than manageable. Day 4 was my foggiest but the steroids had stopped and I just felt a bit like a zombie whereas day 5 I felt myself and we went out for a quick lunch and walked the dog which felt really nice.
ive found these forums really useful and full of kind words and I pop on here if I’m having a wobble so thank you. I’ve also found Liz’s blog really helpful and helped me feel prepared (as much as I can be) http://liz.oriordan.co.uk/CancerBlog/chemo/?post=how-to-cope-with-chemo
I hope everyone has a good week xx
Were you on a different type of chemo before the taxol? How do find it in comparison? I've been told the SE are not as bad as on EC, but at least I get 3 weeks to recover after EC. We'll see...
Good luck with the taxol. I found the first one was the worst - nausea, headaches, joint pain, sore feet and the side effects lasted longer on the first. Now the first 2 days after the treatment are the worse, normally nausea, headaches, general dizziness and feeling chilled. I have problems with the soles of. my feet which ache and feel sore and the palms of my hands but no pins and needles in my toes. my oncologist suggested taking B6 50mg 3 times a day and that does help a bit. The other problem is joint and bone pain in my knees and legs, I have Napaxen for it but you need to take something like omeprazole as well to protect the stomach.
And nosebleeds which gives you a stuffy nose, need plenty of hankies, this started last week.
I find by day 3/4 I feel a bit better, I try to walk every day but really know if I over do it! However I meet up with friends and have been to exhibitions, shopping etc.
I think that everything is compressed so you feel bad then better and then you are into the next one, so it can be a whirlwind. The key is not to commit to too much each week, if I get to do one thing on 2-3 days each week then that is good, however some people sail through without an6 side effects.
I hope this helps and all the best
Hello everyone and welcome to the newbies.
Sunnybear, how are you finding the weekly taxol? I'm moving onto that after one last EC in 2 weeks time. I'm worried it'll be hard as it's every week.
Lots of hugs to everyone xx
My hair is also falling out, I have had 4 cycles of weekly Taxol and didn't get on with the cold cap, so I was expecting it but still distresing. What is surprising me is how much hair there is! I always thought I was a brunette going grey but the sad truth is I am grey with a bit of brown based on my hair loss! I can't decide whether to go for a wig or just stick with hats and scarfs.
Good luck to all those haing chemo this week, my next one is tomorrow and i am slightly dreading the cannula after the problems last week but there is nothing I can do about it and I have a very inventive nurse!
hugs all round, as we deserve them, Sunnybear
Congratulations on the news that you are soon to be a grandma that gives something to look forward too.Glad to hear the surgery has gone as well as possible for you and thank you for the tips regarding lemon water.
My diagnosis came as bit of a shock and dont feel that i have got my head around it i feel like this is just a bad dream. My children have both been fantastic so has the support from my partner / parents and friends. So i do feel very lucky to have them all .
Im hoping the chemotherapy will shrink the node and tumour as that is what is pressing on the nerve causing me pain and shortness of breath which in turn is making me not able to get out and keep busy like i normally would do.
The oncologist felt that chemotherapy is the first line of treatment in my case then to be followed by mastectomy.
My daughter is due to start University in september and my son is taking his Gcse so its a important time in their lives and i just want to able to support them like i normally would and not feel so poorly.
Hope you next session of treatment goes well for you and sending you lots of love and best wishes.
Dear Jem my hair is only just falling on day 17 but I know how you feel. Emotionally all these steps and changes are hard to bear. It feels to me that having cancer is bad enough, now we go through some awful changes to our bodies and minds to get better and heal. And hopefully we will but it’s a journey we would rather not be on.
My scalp is so sensitive even the wind in my hair hurts. I am going to try Aloe Vera. But another constant reminder. I am so sad you are feeling the loss of your hair, but it’s ok to feel that, your hair is part of who you are.
Take care and be kind to yourself.
My journey is pretty much identical to yours! Diagnosed with lobular cancer in October with 3 lymph nodes affected also. Mastectomy with reconstruction and node clearance in December. 1st chemo on 15th January (3xFEC and 3xDocetaxel), second round also on 5th Feb. I’ve also had the injections to boost bone marrow as I’ve got young children(6 and 1 years old) in nursery and school so god knows all the bugs they carry around and pick up!!
Glad your children have surprised you in their reaction to your diagnosis!
Good luck for Wednesday xx
Hi Daisy and everyone
This is my first post, I’m sorry to hear about your journey. I was diagnosed with lobular cancer, right breast with 3 affected lymph nodes in October. I had full mastectomy without reconstruction and lymph clearance in November. My wound has healed up quite well but for anyone having surgery later, I developed quite significant cording that we are working on in physio. I had my first chemo on 15th Jan, EC x 3 and then Dotaxcel x 3. My next chemo is 5th Feb and my hair started falling today., day 17. I decided against cold cap and wig but have chosen some lovely headscarves from Cancer Hair Care.org
I have a PICC and have found some nice coloured sleeves online from PICC-Me.
I found the ant-sickness meds effective against actual vomiting but had background nausea, Volvic lemon water ice cold is good. I didn’t feel like eating much in the first 7 days, small snack sized eating was better, now in my third week the appetite has recovered. I also have the Flamstrim injections for 7 days to stimulate my bone marrow. Once you have done it a couple of times it isn’t difficult or scary. But it can cause bone pain, it did to me and I was advised paracetamol.
I empathise about telling children about BC and managing their reaction. My kids are adult, but the week before I was diagnosed our daughter had announced her first baby. I was devastated about my BC and my first thought was how should I tell her? But in the end I had to just sit down and explain it to her truthfully and she has taken it well and is a fantastic and loving support to me. So I will be a grandmother sometime during my last cycle in April! Our son suffers with mental health issues so I was even more worried about his reaction but he is coping better than I had anticipated. It has made me realise that our children are stronger than we think and can step up to looking after us at a time when we need it.
I hope your first chemo goes well Daisy and best wishes to everyone. Sx
Thank you for replying and i wish you lots of love for Monday . Yes one step at our time and we will get there.
Take care and your not alone
Lots of love
Daisy D, try your Macmillan at your trust for pre loved wigs, also if you have a luvyababes they have great wigs not just fancy dress ones and at under £20 were fantastic. You can get a wig voucher at your trust and list of where you can go and have a look at wigs. It is a journey trying them on but you’ll know when it’s the one because you’ll still see you ❤️ And a warning the steroids will have you ordering coloured one, tinsel ones the lot as you get going, think a few of us ended up with bit of a collection, which then went back to our respective nhs Macmillan’s for others to have for a donation ❤️ If any of you have long hair, please think about donating to little princes trust that makes wigs for children and gives them to them for free ❤️ Turn a negative into a positive ❤️😘💕💕✨✨Shi xx
Thank you for bravely sharing your story. Remember you’re not alone. We’re cheering each other on. Just keep one foot in front of the other.
I am triple negative too and starting on Monday with EC.
Just wondered do the wigs take long to order ? I am thinking that if i could get a wig ready it may make things a bit easier i must admit im dreading to look in the mirror xx
Sorry to hear you are having a difficult time with the metallic taste
Just reading through others posts they seem to suggest that adding lemon to the water or having ice lolly made with pineapple juice helps . Also sucking on a boiled sweet may be worth trying. Glad to hear that the cold cap is working for you too. Im feeling so nervous to start on Tuesday but know the sooner the better really. Just finding it hard to sleep xx
Daisy d, sorry you find yourself on here, a good book that helped me was surviving triple negative breast cancer by Patricia prijatel, it’s not for everyone but it helped me. For the chemo, just remember it will be tailored specifically for you, it’s not a one size fits all. Few things to get before starting, thermometer it is important to keep check in temp. Senokot, anosol, steroids can back you up. A diary can help you keep track of your meds and temperature, do exactly as your team instruct regarding your meds, if the antisickness meds don’t work, ring them they will give you rapid response card with a number on they will tweak your meds, it doesn’t happen to everyone. Also some people have used travel bands to help with sickness if it happened. Get your look good feel better session booked through your Macmillan and ask about pre loved wigs they have or a wig voucher if you are not cold capping ❤️ Ask away on here, use the number at the top to ask a nurse and use the someone like me option too. Hope this helps 💕💕✨✨shi xx
So first cycle (EC) cold cap appears to have worked, I'm losing hair in other places but not my head yet. I had my second session on Monday and I am having a horrid time with the metallic taste second time around. I feel like I was less good drinking second time and wondered if the taste and drinking had a bit of a knock on affect or its going to be cumulative?!!!