I have been told i will probably have a permanent port fitted either in arm or chest. To be fair if i can choose think i would rather have the chest one less for line to travel lol.
Its all new and i'm sure in a few months i'll be a real pro at this, after all i have no choice so time to put my big girl pants on eh?
This group has been a lifeline and only been on here 1 day, so much information and support.
Love to you all x
Hi Jojo1447 - apologies for jumping in on this thread, but I just saw your post and mention of fear of needles and having a port fitted in your chest and wanted to try to reassure you at least a bit.
I too hate needles and I remember one lovely nurse saying to me “clench your toes really tight”....so I did, in went the needle with little problem. I asked her about this and she said “We say this usually to children to distract them so they don’t then notice the needle!” It worked for me too.
I also had a port fitted and it really made the chemo injections a lot easier. Ask them to give you a numbing cream, think it’s called Emla (?) to put on about an hour before you arrive for your chemo. The actual fitting of my port was done under a local anaesthetic and I was in and out of hospital in a couple of hours. If you have any questions I can try to answer please ask.
I wish you and everyone else on here every strength as you go through treatment. Hugs Evie xx
Glad I found this group. I met the oncology doctors yesterday and should be starting chemo in a couple of weeks. I am now waiting for more appointments which always seems to be the case.
I had a lumpectomy and lymph nodes removed at the start of September. The margins weren't clear and it was in 2 lymph nodes.
Yesterday they offered me a trial where if I was randomly put in that group I would get a test and if I was low risk I would go straight back to surgery (which I need next) and skip the chemo. I said no though. It really floored me at the time as I was not expecting it. I dont think I could bear it if it spread and I hadn't had the chemo and it was due to a trial rather than the recommended treatment.
I have two boys 8 and 11. I am thinking of talking to work about stopping soon for the chemo. I have a WFH office job but I can't deal with the pressure at the moment and don't think I could while going through chemo but I'll see how it goes. I am having it every 2 weeks.
I am not at all looking forward to the PICC line. Whenever I've had canulas I've found them really annoying even if just for a few hours.
i am in a similar position I meet next week with them.
i live alone but have a great supportive sister who is there for me.
i don’t have kids but I have two dogs, I hope they will get me through this and keep me going, sounds stupid I know but I need to keep a little independence and normality in this crazy time.
hope everything goes well for you, let me know how you get on x
It is currently 5am and I have my first appointment with the oncology team tomorrow following the results of my lumpectomy on Wednesday. I was really optimistic hearing my margins were clear and no spread to the lymph nodes and ready to embark on this next journey but lying here now I realise I have no idea what I am in for and worrying how this will affect my two boys
anyway I thought I would say hi as hopeful my chemo will start really soon. It will be nice to chat to people going through the same thing.
Good luck with your journeys everyone xx
Thanks for the reply not a jockey.
had a biopsy last week and got the results this week. My assigned nurse Fiona is lovely and went out of her way to get me booked in for a blood test and ct scan that day while I was there. Back tomorrow for mri scan and waiting for oncologist appointment sometime next week. Back on Wednesday for results of these tests.
reading all posts on here I think I need a new cancer diary for all my appointments and meds.
im petrified of needles but after all this I’m sure I’ll become a pro having them. The thing that scares me the most is having the line fitted, think I’m going for the one in the chest, the thought just makes me want to pass out lol.
its good to know there are people on here for support when needed x
I'm Jo, I've been on the forums a while (diagnosed in June) but now found myself here after 2 lumpectomies with positive margins and then high oncotype score. Having EC 6 cycles & every 3 weeks followed by mastectomy. Chemo is my worst nightmare and having a hard time accepting the treatment but know I have to. Covid test tomorrow then PICC line in on Tuesday, first chemo session on Thursday.
I wish you all the very best for your treatments, especially those already started, and look forward to getting to know you.
Injections do opposite sides of belly button About 2 -3 inches away and not in same place, grab bit of belly between one hand, stick the needle in, plunge down till you hear the click, release and let it spring back up into itself and you are done 👍our injection in your sharps bin you should have been given 👍 keep dancing 💃🏻💃🏻💃🏻 You got this 💪💪💪💪💕💕✨✨Shi xx
Thank you Not a jockey for telling us about your first chemo!
Im glad you are feeling ok so far- long may it last! Ooh the injections sound a bit scary- I hope you find it ok. I guess it is amazing what we can do when we have to.
Good luck to chesterbrownbear and Linda- have you had yours today? I hope it went ok for you, tell us how you are when you feel up to it? X
Welcome Jojo, glad you found your way here!
i have finally had my appointments through and freelance a bit better for knowing what is happening. I meet a different oncologist on the 8th, not sure why. Then pre-assessment with the oncology nurses and an echocardiogram on the 12th, then Herceptin starts on 15th and the actual chemo on the 16th (nab-Paclitaxel).
I’m nervous, but keen to get started! I hope they will give me a PICC line, I have ‘bad veins’ According to many who have tried to get blood from me, and I’m not great with needles.. we will see!
Hope you can all keep your spirits up! X
It is terrifying.
I found that having dates for things to happen was a help - it was a bit of certainty. I wasn't offered gene testing because I only had one cousin with the BRCA2 gene.
From finding my lump to having my mastectomy was 7 weeks. In between I had two biopsies and ultrasounds and an MRI. My operation was carried out by the NHS at the private hospital nearby. It was great to have a private room after surgery because it was quiet, and the chicken salad sandwich was superb - but I reckon they only give you the remote control for the TV if you've paid for your room!
Hope all goes well with your treatment.
Hi York 75
Despite looking calm and collected when I got to the Macmillan unit yesterday my heart was pounding and my hands were shaking. Kerry my nurse got the cannula in no problem, set up a saline drip and started feeding drugs into me. The first was three syringes of epirubicin which took the best part of an hour followed by four more syringes, one syringe of either 5Fu or cyclophosphomide and three of the other. By the time the first syringe of epirubicin was in I was feeling much calmer. Kerry sat with me the whole time injecting the drugs slowly into the cannula. I had no reaction to any of the drugs.
The only surprise was the number of other drugs I was given to take at home - and no-one had warned me about the injections! 7 days of injections into my stomach. It's so far so good. I felt light-headed and slightly nauseous as I left the unit and the same ever since, but it hasn't been enough to stop me doing anything. I've cooked meals, walked the dog and been food shopping. It did affect my sleep though and I was wakeful for most of the night.
I feel like a bit of a fraud having my friend stay but I didn't know how I might feel and I needed someone here for my foster child. Although he's 13 he has special needs and can't tell the time so I was worried about him getting to school. I wish you lots of luck dealing with this and a 6 year old.
I'm keeping my fingers crossed for the next few days.
First post here.
Just been diagnosed and have appointment with oncologist next week. Its all moving very fast which I guess is a good thing, however I am terrified.
I am having chemo first to hopefully shrink the tumour then hopefully a lumpectomy but that will all be down to the results of the gene tests they are going to carry out.
Its all so overwhelming at the moment.
Thanks for your good wishes & same back to you, we will have to compare notes. It’s stepping into the unknown, although I’ve had chemo before, it was a completely different regime, but I was fine, so I’m optimistic this time. Don’t waste time waiting for side effects, but be mindful of catching a cold etc, although in the current climate we are being extra cautious anyway. I’ve decided to try the cold cap this time, simply because I can. I am having second thoughts, but as it’s only once every 3 weeks, I’ll give it a go. Had the portacath fitted yesterday, have you? It’s a strange procedure, and feels quite tender today, but it will be worth it.
To eveyone else on here, good luck, we are all going through this together and it is surprising how strong we can be. I think staying positive will help immensely, there will be down days but it will get better.
Incidentally, you should get a prescription for a free wig, (although it’s nice to have more than one.)
❤️Always ring your units even with no temperature during chemo to keep safe ❤️ get a casa nhs overnight bag at the ready in case you do have to go in at all ❤️ it’s good to have it on standby and don’t forget to pack your phone charger 👍 it doesn’t happen to everyone but it can happen and main thing is you don’t go, oh I’ll see how I am in the morning or in an hour or so, get on that bat phone to your units and keep safe 👍❤️💕💕✨✨Shi xx
Hi linflo58, I’m starting chemotherapy tomorrow too. I had a lumpectomy and lymph node removal about six weeks again and I must admit I’m scared. All the side affect you hear about, I had my pre assessment via phone today and I didn’t realise how many side affect can lead to a hospital admission. I am trying to be positive but sometimes it wanes.
good luck for tomorrow, I will be thinking of you x
Welcome Not a jockey,
you are our first one! I hope it was ok today. Please tell us how it was when you feel up to it?
It sounds like you have had a rough time recently, I’m so sorry you have had to go through all this. 2020 is doing its worst for you! 🙈
I’m sure your friend and daughter don’t think you are a burden at all, but I do understand what you mean. I worry about not being able to look after my 6 year old and all I usually do at home.
I have tried to do bits to prepare to make myself feel better about it, like batch cooking and freezing food for when I might not be able to do it. I also think that after the first cycle we will know what to expect a bit more, which will help. I have heard others recommend keeping a chemo diary, about how you feel on each day of the cycle, what you took for any side effects, and what the result was. Then you might be able to plan when help might be needed?
I definitely don’t think you are best before 2020, but LOL!
Hope you are ok!
My chemo starts today but 30th September is almost October......
Feeling very anxious about the whole chemo thing - my partner died a couple of years ago so I'm being supported by my best friend and my daughter. I'm scared about being a burden. My daughter is a teacher so she works incredibly long hours and she and my best friend have already supported me through necrotising fasciitis, the death of my partner and issues with a couple of foster children. Talk about being the needy friend!
I suppose it's not knowing what side effects I'll get/how I'll feel. My cancer was grade 3 (it would be) and I had a mastectomy in August. I'm on Fec T followed by radiotherapy and 10 years of hormone treatment.
I told my foster child I was thinking of having a tattoo on my head saying 'best before 2020' but he thought that wasn't a good idea and we should just get a rubber stamp made!
Welcome mystrose and mrsquincy,
Mystrose, I’m sorry to hear your mum is finding it difficult to come to terms with her diagnosis, I am glad she has you to support her!
I am keen to get started so I can get it over with.
Mrsquincy, it all makes your head spin a bit, doesn’t it. I am waiting impatiently for my appointments, they seem to take ages to come through. I have done wig shopping today! I have a friend with alopecia who recommended this website to me. She says the lady who runs it models a lot of the wigs herself in the pictures, the prices are good and she is happy to accept returns, so I have ordered 4 today, even if I will probably only keep one. I ordered from mimowigs.com
Inrterestingly you can also find YouTube videos of people reviewing wigs, and some websites allow customers to upload their own pictures of them wearing the wigs, which gives a better idea of what they really look like. A whole new world, this!
I also got some sleep caps and turban style soft ‘hats’ from annabandana. They were really reasonable. I can report back on them when they arrive, if anyone is interested!
Hope everyone is in good spirits and getting ready for this strange time we are facing. Stay stron, ladies, we can do this!💪🏻💪🏻
Hi mystrose- I’m sorry to read about your Mom’s diagnosis, but how lovely that she has you to support her. Welcome to the forum, I hope in time your Mom may decide to come on here. Not everyone feels comfortable going on forums though, but it’s great that you can reach out and get support and answers for any questions that may come up. I wish your Mom every strength as she goes through treatment. Hugs, Evie xx
Chemo tips ❤️Thermometer, notebook/graph to keep track of temp and meds when you take them, soft toothbrush, difflam, anosol, senokot/movicol, Imodium, moisturiser, udderly smooth with extra urea from amazon good as Chemo can dry skin, travel bands can help with sickness if it happens, drink plenty of water, heat pad for arm, chemo can make veins collapse if you are having cannula, don’t worry ❤️👭wear comfy clothes if your antisickness meds don’t work ring your team they will tweak till they get right. If your wee burns and no temperature ring your unit it’ll need antibiotics not a bit of cranberry and if you get thrush in mouth or down there again ring your unit it’ll need antibiotics 👍 you can all 💃🏻💃🏻💃🏻Through this together ❤️Us Oct17 Chemo thread did ❤️ Now who is picking first tune for chemo juke box? You can all dance together 💃🏻💃🏻💕💕✨✨Shi xx
Hey all. I am meant to be starting chemo in Oct providing everything goes well. I am just about to go for my MRI today and then have my ct scan on Thursday. I'm still waiting for my bone scan appointment. I feel like everything is moving so fast. I only found the lump 3 weeks ago and will be looking to start chemo in the next few weeks.
I feel more relaxed than I did last week. But oh my gosh us women have such hidden strength I never knew I had.
I would love some tips on how to make chemo easier.. I've heard laxatives.
My sister has offered to buy me a wig so I guess it's all steam ahead.
I'm just praying all my scans come back clear cos I feel like I've had enough bad luck now.
Good luck everyone.
Nice to meet you. My mom was diagnosed with the same grade 3, ER+,PR+ & HER2+. So I guess she will be needing the same treatment as you. She was diagnosed only 5 days ago and she's not very strong. I recommended her this forum but she told me she's not ready yet. So I guess I have to use this on her behalf. Lots of love to you on this journey! Stay strong ❤️❤️😊
Hi Beaglesmum, I am going to buy a wig tomorrow I think!
i have a friend who always has to wear one, so I’m getting to try some of hers and she will help me choose one online. A whole new world! Such a lot to choose from. I am not planning g to gold cap, so I will need one. Will look on annabandana for some turban style head coverings too, and a sleep cap- apparently your head gets cold! They look fun and reasonably priced.
Hope you are pleased with yours and feel good in it!
maybe we will start about the same time- depends how long my pre-treatment checks take to come through! 🤞🏻🤞🏻
Thanks for the wonderful welcoming reply 😊 I am seeing my oncologist on the 6th Oct then start the chemo the week after. The breast nurse told me that I would be having TCPH (?) regime, and that my hair would deffo fall out. So, off I went and got a wig whilst I was in the mood and quite enjoyed it!
Gosh Linda, it is all happening for you!
Glad you had a good experience with your prosthesis fitting, so many things are more difficult to get done in these Covid times. Many years ago I used to fit bras, and there are many choices of nice bras that can carry a prosthesis really well, not just the ‘special’ ones with the pockets. 👍
i have a six year old girl who is already bringing back home the back to school sniffles, so I am a bit weary of going out much in case I catch anything that will delay the treatment. Not just Covid - although the increase in cases is stark locally- just anything.. Maybe I’ll feel better about that once I get started. I’m wondering how long it will be until they get a case at school. If we have to isolate it might make things difficult.
I have a bit of a ‘chemo stash’ already of things I have bought in preparation for treatment from reading all the useful tips on this forum.
This is not your first rodeo, Linda (I’m sorry to hear that), have you got any chemo must-haves?
Since things are not moving as fast as I’d like, I am quite pleased there is a really busy week at work coming up, that will keep my mind off things, along with my daughter who chatters constantly from the moment she gets up until she falls asleep,😆
Hopefully the appointments will start coming though next week, and then I’ll be on my way too. strange to be eager to start something that is going to make us poorly, isn’t it!
Good luck for next week- please report back and tell us how you got on! Hope the portaCath goes well too- I hear they are a godsend if you have tricky veins or don’t like needles. I’d quite like one, but I guess I have to wait until the chemo nurses assess my veins. Xx
Nice to hear from you. Mine was grade 3 HER2+. It was 6.5cm & my last mammogram was only last year, so it was fast growing. I had 15 lymph nodes removed & 3 were cancerous. Like you I was impatient for things to get going. In the end I ‘embraced’ the free time that I had, going out for lunch, dinner etc. I’ve had a heart scan & CT scan. All clear on the CT scan thankfully. Once the various appointments did start coming through, I was almost excited. I had to remind myself what they were for! I’ve had a phone appointment with the oncologist, who was lovely, 2 video calls with the physio, which helped me a lot. Last week was quite busy, I had a prostheses fitting & was pleasantly surprised with it, it’s very comfortable & looks good. I also had a pre assessment at the cancer ward which was informative. Next week I’m having a portacath fitted, my first chemo cycle & a bone scan, so it’s all go for me.
you might feel in limbo for a couple of weeks but it will all come together in the end. Good luck & take care.
Nice to meet you Linda and Beaglesmum. 😊
I'm not sure if I am doing this right, replying to Linda’s post, this is my first go!
I will be joining you in starting chemo in October.
I was diagnosed with a grade 3 breast cancer in August. I had my surgery (lumpectomy and removal of 4 lymph nodes) at the end of August, and have been impatiently waiting for my first oncology appointment which was yesterday.
My tumour was small, just 11mm, and lymph nodes clear, ER+, Progestrone positive, and HER2+.
Because it is HER2 positive I need chemo, and I will be starting Nab-Paclitaxel when all the test are done. I will have 4 rounds every 3 weeks instead of the standard 12 weekly Paclitaxel, because of Covid. I’ll have Herceptin alongside- injections every 3 weeks for a year. After chemo there will will be radiotherapy, and then 5 years on tamoxifen.
So now I am waiting impatiently for the appointments to start rolling in, heart check, chemo nurses, maybe a bone density scan? Hope it can all fall into place quickly, the sooner I start chemo the sooner I will be finished.
Do the rest of you know what you are having yet?
Hope we can help keep each other’s spirits up and share tips. I am finding it hard to concentrate on work at the moment - but trying to be useful for as long as I can.
I hope anyone else who is starting chemo in October will join us. 😃
I start chemo on 1st October, having had a mastectomy & lymph node removal 6 weeks ago. I am feeling extremely well, and going into this positively. I had chemo 4 years ago & coped fairly well. I lost my hair gradually but quite enjoyed wearing a wig, in as much as having a new look & no fuss with washing, styling etc. It grew back almost identical to how it was before. I’ve suddenly decided at the last minute to try the cold cap this time. I have long thick hair, so will see how it goes. I did have constipation last time, which wasn’t pleasant, so will be armed with plenty of laxatives. Also, the steroids increased my appetite considerably & I did put weight on, although I think I used that as an excuse to eat all the cakes/pies/pizza that I’d been denying myself for years 🤣. This time is a different cancer treatment, so I know I cannot directly compare. Good luck to everyone else joining me on this ‘journey’ in October.
Beaglesmum ❤️ Sorry you find yourself here but glad you’ve found breast cancer now, everyone is here 👭. Take it one day at a time, get thermometer to keep check on temp during chemo, anosol And senokot or something (Chemo steroids can block you up), drink plenty of water during chemo, If your antisickness meds don’t work let you unit know they will tweak till they get right. If your wee burns like a uti but no temperature ring your rapid response it will need antibiotics not just a bit of cranberry juice during chemo. 👭 please use the someone like me option on here ring them number it might help you too ❤️ Ask away, everyone takes care of each other 👭 here. Remember it is your journey do what’s right for you and even if you don’t feel like you are in control you are 💪💕💕✨✨Shi xx
Thank you for this site. I was told that I have grade 2 duct breast cancer (triple positive) 2 days ago and am still a bit dazed. I start my chemo first in October and am starting off by going cold turkey off my HRT patches, which is a traumatic beginning. So here I am at 4am unable to sleep....
This thread is for anyone due to start chemotherapy in October 2020. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day and get a thermometer and check your temperature every day.
Here is the BCN guide on chemo:
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
Here are some apps which can help to keep you on track:
I finished my chemo in October 2017 and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.