im ok this morning bit apprehensive but once it’s over bring on the cocktails tomorrow.
hope you have a good day today, will let you know how it goes
I had a picc line fitted prior to chemo starting - I was advised that some chemo's they will not put through a canular and the first 3 I had could not go through a canular, the picc line didn't quite last until the final chemo but because the drugs were different, I had that through the canular.
Don't be afraid of the picc line, it took a little getting used to but it is secured and you were a sleeve and use a sleeve to shower in and you also have the excuse you can't hoover or mow the lawn (well they told me not to do anything heavy so it was a fab excuse!).
Fingers crossed you keep the side effects under control.
I had my first chemo infusion last Wednesday by cannula, which was fine, but they said when my veins collapse they will put in a picc line. They said when they get to the point it takes 45 attempts (sure she was joking) to get the cannula in they will do the line - but it sounds to me like your units just do it straight away. My cousin in the USA had a portacath fitted before her chemo - said they just recommended it. I've looked at pictures on google (never a good idea) and now I'm feeling horrified. How do you avoid catching it on stuff?
I'm on day 8 and so far all the side effects have been minimal and sorted fairly quickly with gaviscon/dulcolax/paracetamol/ibuprofen. I do feel very tired and walking to Waitrose yesterday for milk was a mistake - next time I'll take the car!
Hope chemo goes well for everyone.
Sorry I have chemo brain before I've even started, of course yours is on Thursday!
Sorry your marker implant was a bit painful. The radiographer who did my node biopsy at the beginning of all this was not gentle either, I think they forget we're humans!
I'm doing ok today thanks but quite nervous for the whole toxic chemicals into your body thing. I have to keep reminding myself why we all have to do this as it seems so barbaric to me.
Are you doing ok today?
That's a great idea to use tights! You certainly need something as the port bit does stick out quite a bit. I think you can request the PICC line if they don't offer it to you.
Yes a bit too graphic indeed! Glad it went ok though and I'm also glad you're not feeling sick. I have admit I'm dreading tomorrow, just the fear of the unknown and I'm sure it'll be fine once it's underway.
Did you have the cold cap?
not having my picc line fitted until Thursday so yes you’ve put me at ease a bit thanks.
been to have a marker implanted today which again dreading but to be fair didn’t feel a thing, most painful part was the radiographer pressing down on the dressing to stop it bleeding which of course was on the lump, she wasn’t at all gentle on the front lol.
ive not seen the chemo treatment room yet so not sure what to expect on that front Friday. Hope you’re feeling ok today xx
Linda it sounds like you are doing great! That is fantastic news. I hope it will be the same for the rest of us, fingers crossed. 🤞🏻
Jo22, I’m glad to hear your PICC line experience was not too bad. I’m hoping to get one too/ fewer needles in total!🤞🏻
I have seen others advice that cutting up a pair of opaque tights or knee highs make a great home made PICC cover, and easy to adjust the length- maybe a thought.
Jojo, I hope yours goes ok today! X
I had the consultant & his registrar do my Portacath. It was the same. I knew what was happening blow by blow, which sometimes was a bit too graphic, but was ok. Mine is in my chest, rather than arm.
Had first chemo last Thursday, and have been ok, but today definitely feel ‘drugged’. Very weak, but I can cope with that, just taking it easy. As long as I’m not sick. Hope all goes well for you.
Sorry Jojo I hadn't pressed post on my message last night. I do hope you see it before you go today. It really isn't that bad. Ask for a little tubular arm bandage to keep it from catching.
You'll do fine, mines a bit sore today but nothing that paracetamol can't help with.
Just to reassure you the PICC line went ok for me today. I had a student nurse too with my chemo nurse overseeing which definitely made it harder as they were discussing what they were doing but it does not hurt, just a bit uncomfortable at times. It took around 2 hours including walking down to xray to check it was properly located and it was.
It was good to have another opportunity to see the chemo unit, last time I went in there were some very poorly people which shocked me a little.
Best of luck tomorrow.
how did you get on today?
the picc line is scaring me more than the chemo but I’m sure that will all change when we get to Thursday evening.
hope your first session goes well and doesn’t hit you too hard, let me know how it goes.
Its good to hear you're doing ok. You sound really positive! Hope you manage another nice walk today.
One day at a time eh?!
It really is moving fast for you which is great. I get my PICC line in today & then start EC on Thursday am so ill be able to let you know what to expect especially for the PICC. Im nervous too but I keep reminding myself they do this all the time.
I'm more nervous about the chemo & at the moment just want to run away...but I know I won't.
I'll let you knowhow today goes xx
Wow, Not a Jockey, you have had it bad, I’m not surprised you are feeling how you do. Life can be so unfair at times, I do wish you well.
Jojo1447, I felt like you, everything came at once. I had the portacath fitted, first chemo session & bone scan in 3 days. The week before I had a prostheses fitting, oncology appointment & physio video call. I had my first chemo session last Thursday and am feeling ok. Just a bit shaky that’s all. No sickness 🤞, but I will be ‘swigging’ the lactulose tonight. Do not want constipation! It’s walking into the unknown, because everyone is different, it’s hard to know what to expect. I’m just going to make the most of each day depending how I feel. Went for a nice walk today. Hope all goes well on Friday.
Wow, reality has set in and its all moving very fast now.... which I'm sure is a good thing!!
Just had call from hospital. I have an appointment Wednesday afternoon again with the oncologist to get everything explained and consent forms signed i've been told.
I then have appointment Thursday @ 9am to have a picc line fitted ( i'm dreading this more than the treatment)
Friday @ 10am I start my first chemo treatment, not sure how i will feel after that, how did everyone else feel after their first treatment?
Its all scary and new xx
Sorry that you are feeling this way - which sounds perfectly normal given the circumstances. Why should we feel guilty about feeling sorry for ourselves? - everyone else we know feels sorry for us and no-one in their right mind would want to go through this.
The Mcmillan unit have put me on to a counsellor. I'm usually a pretty positive person but in the last three years I've had one rare illness I was expected to die from which was swiftly followed by the death of my partner and now this. I do feel like I've had more than my share of bad luck and it can be hard keeping it all in.
Just before my chemo started I went on a trip to Cornwall with a group of friends and it was lovely to be away from all this and just be me.
I'm now on day 6. So far so good. I've had constipation and heartburn which are being sorted out by dulcolax and gaviscon, the anti sickness meds worked a treat - just felt light-headed. I have no appetite though I'm making sure I eat regular meals (though the smell of roasting chicken made me feel yuk), mostly feeling tired. My throat feels a bit scratchy so I'm upping my liquid intake.
Worst thing so far is the stomach injection - I just haven't got the bottle to stick myself. Fortunately both of my children have been trained to do this (who knew) so my daughter has been popping in after school to do the honours and my lovely neighbour who used to be a nurse said she'll do it if Jo can't get here. I feel such a wuss over this because it really doesn't hurt.
Hope all is as well as it can be for everyone else.
Hi Chesterbrownbear, sorry to hear you’re not feeling good. I have to say I’m doing ok, a bit shaky today, but that’s all. I was on the chemo ward for less than 2 hours. Your treatment lasted quite a while. I even managed a small glass of wine with my tea tonight. Taking each day as it comes. I always say I’m fine to my family as you don’t want to worry them, but sometimes you do want to feel sorry for yourself. I allowed myself a couple of hours of self pity after the portacath procedure. Next treatment is in 3 weeks, I am expecting to feel worse, but not wasting good days worrying about it.
Hope you feel better soon. x
Glad I've found this thread. I found a ' Dent ' at the end of July, had mammogram ,ultrasound and biopsies on the 8th Aug. Results on the 21st , mastectomy on the 1st Sept. Diagnosed 23mm lump, 1 out of 9 nodes infected ,margins clear. ER+ PR+ HER-. pre chemo tomorrow for corvid swab and bloods. Picc line fitting on Wednesday then 1st chemo on the 12th ! Phew !
It's all been so fast. I've been signed off work since the biopsies, I work in a busy supermarket. Because of this covid thing. Hubby is getting quite paranoid about it.
Not worried about the hair loss as I usually have very short hair anyway.
I've been referred for genetic testing as both my mum and her sister both had BC and died before they turned 50. And I'm 55. .
Am I the only one that now dislikes her remaining boob ?
Hope all goes well for you all.
Sorry to hear you are feeling bad today Cesterbrownbear. At least you are one down, and you are doing it!
I am not good at being ill either, I imagine I will be a huge pain in backside to be around- my poor husband and daughter!
Well done to Linflo58 for getting your first one under your belt! 👍🏻👍🏻
Hang in there ladies! Xx
Hi Linflo58, I had my first chemo session Thursday too, I went in all positive had the cold cap, bit painful for the first 20 mins but held out, came out 6 hours later. Didn’t feel too bad until yesterday and I just feel pants. I don’t do being ill, when people ask, how are you, I usually say not bad, but really I’m not. I can’t put my finger on it but I feel depressed, wibbley wobberly inside, just eehhhh. I know I’m just feeling sorry for myself and others are really finding it tough.
I’m m so pleased you are not too bad, there’s hope for us all xx
Glad you had a positive experience with your wig session not a jockey. I met my lovely chemo nurse yesterday and she suggested getting my hair cut before treatment as it is pretty long and she said it most likely fall out to some extent even with the cold cap. Managed to get an appointment with my usual hairdresser today. I was told we'd get an appointment to help with our wigs at the hospital next week so I hope I get as good service as you!
I had a bit of a blip going into the chemo unit yesterday as there were patients there having treatment, it really brought it home how real this is. I also got my schedule and whilst I'm sure I won't (and maybe no-one else!) be doing anything it was a bit sad to see new years eve as one of the dates.
Next job is to tell my youngest son who is away at University. He knows I have cancer but doesn't know I need chemo. This really is a hard slog isn't it.
Re hair loss and wigs - the Macmillan unit at my hospital recommended a local salon. I didn't go for the cold cap - no guarantee it would work. The guy at the salon was fabulous and the wig he suggested looks fantastic - like my own style now just slightly longer. He says he's done about 600 fittings over the years and he's going to come in on his day off to shave off my hair for me at 10 days post chemo. I'm only getting a wig because I have a 2 year old granddaughter and she freaked out when her dad put on a flat cap and glasses to dress up as Mr Blippy on her birthday so I dread to think how she'd react if I were bald. She's always been a bit funny about hats etc.
The quality of the wigs was much better than I anticipated.
Good luck to everyone in finding a 'Steve' to help them through this particular minefield.
Had my first chemo on Thursday. Went pretty well. I was going to have a cold cap, but changed my mind. There is no guarantee, and did I want the extra trauma of ‘brain freeze’? I have had chemo before & lost my hair. Enjoyed wearing a wig for a new look. You do get a prescription for a free one. I had a portacath fitted on Wednesday. I don’t have an aversion to needles as I have given blood lots of times in the past, but find canulas very uncomfortable. The procedure is done under local anaesthetic, & while not pleasant, it was fine when used the following day, so well worth it. I had a bone scan on Friday as a safeguard. I am happy to have every test/scan going to make sure they get this cancer.
it is now 2 days since chemo, and so far so good. I can’t work during chemo as I work in a school, too many germs floating around. I’m just taking each day as it comes. As there are 3 weeks between cycles, I just wonder how this journey will map out? So good to read about other peoples’ Journeys. Good look to everyone x
I bet that phone call sent you into a spin.
I am so glad I found this site you are all an inspiration and I’m lucky to have you all with me on this journey together with my beautiful family and friends.
I will take a look at the mountain lion story thank you.
The consultant has recommended I use the cold cap which he mentioned before I asked as this too is a fear for me. He hasn’t mentioned a picc line.
I hope all goes well for your first session x
Love the mountain lion story! A brilliant analogy. 👌
To those of you worried about needles- I am in your club! I am dreading a picc line or a port, but I hope I can get one as it will limit the traumatic events to one - in relation to needles, at least..
I will be giving up work for a while when I start chemo. With a 6 year old at home too, and not knowing how I’ll respond to the treatment, I feel better with one less thing to worry about.
I do feel odd about it- other than maternity leave I have always worked.
sending positive vibes to everyone, glad there is a few of us now to support each other through this challenging time. Xx
I too have had my appointment with my oncologist today. Came totally out of the blue, had a call at work this morning explaining an appointment had been made today for 11am and was I ok to attend. Probably did this because I had MRI booked later in the day and thought they were doing me a favour. I was at work at the time and just sent me into panic mode and rushing around.
The consultant was lovely and explained everything, but I just couldn't take it all in and at the moment with covid sister was unable to come in with me. They did give me lots of bedtime reading though.
I have decided to go for the picc line as I am terrified of needles so going through the trauma of this fitting sounded better than cannulas everytime and bloods. They are looking to start chemo in 7-10 days so next week will be busy with appointments and line fittings I guess.
One of my main fears is the hair loss. Seen a post earlier for a site which sells hairband wigs which look amazing and not too expensive so ordered 1 to see what its like, if its ok I could go mad on the site and sat around all day on line could be dangerous lol.
Please try to stay positive, it the only thing we have. We're women and we're strong and together we will get through this x
This is the story Shi referred to .Good luck with your treatment ladies .
I had my oncologist meeting today. I start chemo in two weeks.
my chemo will be in 2 parts 😕
1st part EC 4 cycles ( once every 3 weeks for 12 weeks)
2nd part pertizumzab, trastuzumab and docetaxel again 4 cycles.
I honestly feel so lucky the team i have around me with both the hospital and my family/friends. Honestly couldn't ask more from either side.
Remember tn is treatable and keep off dr google. Joan lunden and Robin Roberts were tn (both USA tv women) their journeys gave me inspiration ❤️ Something that might help you all on here is mountain lion by strawberry blonde 👭 think it’s in hope and inspiration (sorry can’t quite remember) but it has helped lots of us previously and will do so for many years to come ❤️ You will find your feet, you all will and for the wobbly days you’ve each other all around you 👭👭👭 getting each other through safe 👭👭👭💕💕✨✨Shi xx
Thank you Shi I will take a look for that book. I’ll be honest I don’t know anything about triple negative just that it’s not good! I’m am doing my best to avoid Dr Google and am very grateful for this page.
Just feel the wind has been kicked out of me when I was doing all I could to stay positive. My positivity will come back I’m sure ❤️
withers14 ❤️ A book called surviving triple negative breast cancer by Patricia prijatel helped me, it’s not for everyone but it did help ❤️ The genetics testing is a simple blood test, you get results usually couple of months later but it gives you options if you do carry brca gene ❤️ Not all tn’s do, I didn’t and lots of others on breast cancer now didnt, but some do ❤️ Step by step you will get through this 💪💕💕✨✨Shi xx
So I had my first oncology appointment and have gone from feeling quite positive to totally deflated. The consultant was really thorough but really blunt and to the point which is good but a lot to deal with.
The lump that was removed was grade three triple negative and due to my age being referred to genetics, I feel that I couldn’t have done things much worse if I tried.
Then I get the date of my first chemo which is fine two weeks away so not long then I work out the possible dates for the 6 sessions. Session 2 my sons birthday, session 3 my brothers birthday and session 4 my nieces birthday just before Christmas. 2020 really is having a laugh!!
Ive been trying my best to stay positive and have always had the attitude bring it on I can do this I have to for my boys but today all I want to do is scream!!
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