Hello October ladies from another October lady:)
I just wanted to say hi, I am new to this forum, and I am so glad to find a forum like this. It has made me feel so less alone in all of this.
I started my 1st Chemo last Thursday, after being diagnosed with TNBC in my right breast and lymph node. I am 48, with a loving hubby, two lovely daughters and two energetic grand toddlers to keep us all busy!
I wish you other ladies lots of warm hugs xx
Many thanks for taking the time to respond to my posting. I have been to my GPs took urine sample with me. Received a prescription for antibiotics, pessary and creams. There is blood detected in my urine so the sample has gone off for further analysis. My GP practice has been fantastic. My treatment by one specific A&E department regarding Sepsis and neutropenia is currently being investigated. I was admitted on the 19th September the following day my friend’s uncle died of Sepsis. I’ll definitely look into the life Mel honey. Thank you also for alerting one of your contacts to my plight. Very much appreciated Shi xxx
Hi reddi - looks like you have been through a lot, thanks for sharing. Having been a person that virtually never takes ill looks like I need to be a lot more vigilant, as you advise. Having kit ready to take to hospital is a great idea...I turned up my just the contents of my handbag...not a lot of use! Shame about the beer though!
Thankfully temperature came down, blood levels gave gone up and just got home, so looking forward to my own bed tonight.
@MurphyC I'm another June 2018 starter (like ktk), and happened to have a very similar first cycle to yours (though I was on FEC): calm on the day, also a Friday, with all going super well til Day 9 (the following Saturday), when I spiked a fever, got sent to A&E, found to be very neutropenic despite the injections, and was admitted to an isolation room. They didn't find a source of infection and my fever resolved, so I got out after 3 days.
As ktk says, avoiding possible infection risks when your white blood cell count is low can help keep you out of the hospital during future cycles. But it's also worth noting that it's not a guarantee. I work at home, so I don't interact with many people other than my OH during the WBC trough, and I still ended up in the hosptial during cycle 1 (FEC), on antibiotics during cycle 3 (FEC), and in the hospital again during cycle 4 (TPH). The infection I got in cycle 3 was either due to irritation of the vein where I'd received my chemo or, of all things, a very slight paper cut, which I immediately cleaned, treated with antiseptic cream, and covered with a plaster! Cycle 4 was a result of the antibiotics plus chemo leading to a lovely opportunistic bacterial infection in my gut -- and possibly also to a 2-week delay between cycle 3 and cycle 4 because of the hit to my liver. (The thing I got wrong in cycle 3: having a few cheeky half-pints of beer during a late August holiday while my liver was still recovering from said antibiotics and the accumulated FEC. I'd had a checky half pint or pint of beer in cycle 1 and 2, and thought it would be no problem. My breast cancer nurse thinks it wasn't the problem, the oncologist all but admitted it was the antibiotics, but boy did I get told off by the chemo unit nurses for drinking that beer!)
Sharing this as way of saying that you can take every precaution and still end up needing medical attention, including stays in hospital. Now that I'm almost midway through cycle 5 of 7, I've learned to keep vigilant, stay aware of my body, call the chemo hotline any time I'm in doubt, communicate with my nurses and oncologists (don't assume they'll recall all the ins and outs of your stay in your next pre-chemo appointment), and expect that things won't always go as I expected or wanted -- but the important thing is to be safe. And prep a bag of stuff to keep you happy in hospital if you have to go there.
Hope your temp comes down again and that you're home soon!
Casa NHS - great way to think about it! And thanks for the advice on avoiding too many contacts, possibly got that wrong last week!
Looks like my tempterature has gone back up slightly so waiting to see what the doc says...fingers crossed I’ll get home today!! xxx
Morning - I’ve been reading through this thread and found it really useful. Thought I would share my journey so far.
Having had two lumpectomies and lymph nodes removed over the summer, my first chemo session was on the 5th October - I am due to get 4*EC and then 4*T, one every three weeks, and once that’s over a mastectomy and radiotherapy. If anyone is still to start a couple of things that I thought made the first session easier for me .
Visit the chemo suite before you start, it is good to know where you will be. The nurses really put me at ease.
On the day of my first chemo, I arrived at the suite and was so surprised at how calm everything was - everyone already started treatment looked relaxed, reading, listening to music, chatting to friends...it really calmed me down.
Keep you arms and hands warm - chemo can be given in a number of differnent ways...if it is going to be through the veins in your hand make sure they are warm so the veins stand out more, this makes it easier.
I was told to expect to ‘feel’ the treatment going through my body, so I was ready for a bit of a strange feeling which quickly subsided.
I know we are all different but I expect most of us will have been giving plenty of medicines to take home. I must admit I wasn’t expecting to be given so much and I think it can be a little daunting as you are given the instructions whilst still being given the chemo. I ended up with steroids, two anti-sickness tablets and injections to boost white cell count...all to be taken on different days and at different times...plus learning to inject yourself. The lady next to me had the same and more. I decided to make a chart at home to keep track of everything which now includes - date of blood test, date to see consultant, chemo date, medicines to take. As well as keeping me on track I want to use it as a countdown to getting through all of this.
Went home from first session and felt great and decided to go back to work. By the 12th though I started to feel really tired and on Saturday I was running a temperature and was admitted to hospital. White blood cell count is really low and there are signs of an infection. So they have given me lots of antibiotics and they want my blood levels to be above a certain level before I get home. Been here three nights so far but hoping they will discharge me this afternoon. I’ve got to say being admitted on Saturday really threw me as I had been feeling so good up until that point.
So now a bit worried about cycle 2 and what that will bring - any advice?
Good luck Kateday for today, sending you lots of hugs 🤗🤗
Be strong 💪💪, you need all the strength to help you fight this battle and win the war.
I know how you feel about your sister, I have a similar thing with one of my brothers. I'm sure he cares in his own way but he's not contacted me once since my diagnosis, instead he finds out what's going on from my parents. Whereas my other brother and my sister are always in touch.
As hard as it may sound, you and I and all the other ladies here need every ounce of strength we have to get us through these next few months and so we need to focus on us and not those who cause us upset. I for one don't have the mental energy at the moment to worry about my brother. Focus on yourself, Kateday, that's the most important thing right now 😘
Have you got someone going with you to the oncologist? My husband comes to all my appointments at the moment and he goes into logical mode and takes notes, because I do miss things that they say. He turns off his emotions just for a time so that he can focus on the practical side of this situation. Hopefully, you've got someone to be there with you too 👫
Take care, Kateday, lots of love for today.
💜 Fiona xxx
Kateday, yes, its a feeling only we know. I hope you are getting on OK. Like Kip says, you do have good days whilst on chemo but there is a lot of anxiety and you just want to get to the end of it. Sending hugs. xxxx
Yes, every 3 weeks for 6 cycles is normal.
Once you start you will find you get into a little routine.
And it is normal to decide you don't want to go!
Hi all, OH Yes, forgot to mention the feeling of wetting yourself when having the MRI... nobody warned me.. I I lay there thinking how embarrasing it will be when I get out of the machine dripping wet.. only to find I hadn't but be prepared you really feel like you have!
As for those of you possibly facing a masectomy... I had one in May (before chemo) I opted to remain flat (not everyones choice I know) and the surgery was so straight forward, I had the masectomy (single side) and SNB done at the same time, was in surgery at 9am and home again by 3pm on same day. Very little pain, no stitches to remove, just glued and one long strip of dressing. I did have a drain for 3 days but was painless and easily removed at home by nurse. By 2 weeks post op I was back driving, working and had pretty much full movement of arm, keep doing the exercises. I now wear a "knitted knocker" prosthesis, which you can get online for free and are lovely and soft and look really good. I am very small chested anyway (only an A cup) so not to difficult to match my knitted side to the real one and I have to say I don't feel strange at all. You can get some lovely underwear, I get mine from Asda online but M&S do some lovely stuff too. When making a choice over surgery, look at all the options and ask lots of questions.... only you know what is right for you.
Beautifully said, ElliesMum. We're all different, have different plans, will react differently to the drugs, but we are all strong 💪💪 and we'll fight this together 👭
Thinking of you all and wishing you all the best of luck.
💜 Fiona xxx
No, I haven't had an MRI yet, that's next Sunday. I had a bone scan and a CT scan a couple of weeks ago. The dye for the CT scan made me feel the same, as if I'd wet myself but they did tell me that I'd experience that feeling. It was so weird 😜 I guess it'll be the same for the MRI scan too then 😯 😂
💜 Fiona xxx
Aneeebel, it's ok, you didn't scare me too much 😧 I guess it's because we're all new to this and we just don't know what to expect. You all seemed to be getting on so well with your first cycles, I was really pleased for you all, so it came as a bit of shock that you suffered an infection. I'm so relieved that you're ok now though 😃💪
My plan is a lumpectomy and ANC as the cancer is extending to the second level lymph nodes. They hope chemo will shrink Humphrey. I'm just concerned because of the time delay, it will be 2 months from the day I found the lump to the first day of chemo, with all the various tests and scans etc. I just want to get on with it now, to get through to the other side.
I'm sorry to hear about your plan not going the way you hoped. When I went to see the breast consultant to get the results, I was prepared to accept a mastectomy and whatever was necessary, I'd tried to prepare for the very worst news and said to myself that anything that wasn't terminal would be a relief. I still feel that way. I'm half prepared for them to say that I may in fact have to have a mastectomy but I guess time and chemo will tell.
Take care, Aneeebel, and call that helpline whenever you need to, we dot know yet what's "normal".
💜 Fiona xxx
LOL! kip, that sounds so funny about your MRI 😄. I've already had the bone scan and CT scan and a pelvis scan (CT scan showed an issue in pelvis, hopefully fibroids but still waiting for results).
It'll be 3 weeks for me from meeting my oncologist to the first chemo, all to do with the MRI scan and my period, as the MRI has to be done between days 6 - 12 from the first day of your period, or so they told me when I booked it 😉
💜 Fiona xxx
Hi Fimilan, j had MRI before chemo began, it was to get a better picture of tumour aand any thjng else that mammogram and ultrasound didnt pick up, , if its the same as me its quite strange as you lay face down and have your boobs dangling theough two holes! A very odd 45 minutes but painless but y9unhave to lay very still. I also had to have a bone scan, ct scan of organs and heart scan before chemo so dont panicnif younhave to have those too, its routine.
I know chemo is frightening, ive just finished mine but you can do it and its not all bad, uoh do get good days too. Keep talking to each other on here and asking u9ur chemo team anh questions or worries.. youll get through... Big hugs
Hi Kateday, here's my blog with lots of tips for getting through treatment http://lifeafterlola.com
Most people dont start losing significant amounts of hair until after chemo no.2 so you have a bit of time to experiment with headscarves and find a wig if you want one. I got my partner to shave my head as I found the hairloss a bit painful. It important that you keep hydrated, 2 litres of water the day before, on the day and the day after chemo to keep your veins plump and to flush out your digestive system and bladder. Best wishes. xxxxx
I met met with my oncologist on 1st October who went through the treatment plan. He then made me another appointment for a pre chemo assessment with his colleague. At this meeting on the 11th October I had bloods taken and signed consent forms, plus I had a long catch with a lovely female oncologist who was able to answers all my daft and not so daft questions. I was also given a tour of the chemo unit, given my emergency card and then had a further long chat with my oncology nurse who help me with more daft questions! Finally I was given a date for my first chemo, it’s next Tuesday 16th, so the short answer is about two weeks!
Good luck to all my fellow October starters. Together, we can do this!
I'm triple negative too, grade 3 and, like Aneeebel, I'm having chemo before surgery (hopefully WLE if Humphrey shrinks during chemo). Chemo starts on 26 October for me.
The ladies on this forum are wonderful, so brave with what they're going through. We're all in the same boat I'm afraid, but with lots of support and encouragement we can all get through this phase in our lives. They'll see you through the scary moments and be there for you. I'm scavenging every bit of advice that everyone offers, anything to me it just that little bit better 😉
I just want to get on with chemo now. I've booked my MRI for next Sunday, I'm still not sure what that's for to be honest (any clues anyone?). I was coping with the idea of chemo reasonably well until Aneeebel posted that she wasn't very well, that scared me a little 😁
Aneeebel, I do hope you're feeling better now.
Take care lovely ladies, stay positive.
💜 Fiona xxx
i had my first chemo on Friday 5th
-I felt quite well on the Saturday and most of Sunday but then started to feel 'ill'... Weary, light headed, unsteady on me pins, bad stomach, racing heartbeat but had no temp and just generally unwell...
I rang the chemo helpline on the Thursday (I waited that long as I felt like a wimp 'moaning' about something and nothing! 😳) and ended up being admitted to hospital and treated for a Uti, I was neutropenic but not septic which was good news -had intravenous antibiotics and fluids for 24 hours! (I did get told off for not ringing sooner!!) 😳😳
I actually feel relatively normal today... 😇
(For some reason, I'm ridiculously fragile tho... I keep wanting to cry!!!)
I might even go to my allotment and plant my raspberries...I've been threatening to do them for a week but have had zero energy!
Best wishes to everyone
Glad to hear you're feeling a bit better... How horrid that you were so unwell! Have you tried a piece of ginger soaked in hot water for nausea...I tried it a few months ago when I kept feeling sick and it seemed to work, might be worth trying! 💗
Hi Ida, hope you start to feel better soon x 💗
Thanks 1976, Its really good of you to come along and give encouragement to others and I'm glad you are doing well. I also take CBD oil daily (from Cannabidol.com) since I finished treatment and I'm still doing well one year on since finishing chemo.
October ladies, chemo is very hard on you but you can get through this. It feels like you are constantly swimming towards a moving horizon and no matter how tired you feel you have to keep swimming but you get there. At the end I felt like seaweed washed up on the sand but slowly I sprung back to life. Sending you all big hugs. xxx
Hello Oct ladies, sorry to hear some of you are struggling at the moment, your chemo units have lots of different meds to give especially for sickness and not all suit everyone. I have heard Emend is the best but the most expensive so doesnt always get given out at first but worth asking for!! Not sure what to suggest for sickness but i found when tap water tastes yuck i could stomach tonic water or ljme cordial. I also found some ginger cordial which helped. Sucking boiled sweets wss good, and nibbljng on dry crackers too. Ice lollies were a a staple.
Take care and ring those hotlines if you need them! Oh and got thrush on fec foo (down below) and hotline organised canesten cream and pill and it soon went! I then got given it with my usual meds at chemo just jn case! Youll get used to gettjng a bigger bag every cycle... But its worth it in the end.
Take care all
Looks like I won't be starting chemo until maybe November now, my clear margin was out by 0.8mm so have to have another small OP next week.
Anxiety still high but I'm waiting on some counselling.
ElliesMum, did you phone the chemo line? I'm so sorry to hear the first cycle hasn't gone well for you and I hope you start to feel better soon. Make sure you tell your oncologist everything you're experiencing. It sounds to me as if, like Isa, your body doesn't like the levels of drugs. You are having a rough time, aren't you, with all of this. I wish I could give you a hug in person but here's the next best thing 🤗
Try to drink plenty of fluids but most importantly phone your chemo helpline, they know better than anybody what to do.
Have you got any sea sickness bands? I'm going to be using them, and I know someone else had said she'd used them too, and they'd helped.
Take care and sending you love and best wishes 💪💪💪
💜 Fiona xxx