Cdc so glad you are getting somewhere with the hospital, its just a shame you have to do it in the first place but its verh important we feel listened to and answered properly… And as you said if OH comss away feeling the same then it cant be right! Hopefully with a new onc in place things will improve!
Nooo Kip, you didn’t offend me at all - in fact what I was writing was waffling on, and when I read it back, I thought I might upset or offend someone!!! Is it me that if we want to remove one of our own comments, we have to just delete all the words using the ‘edit’ facility? or am I missing a ‘delete’ button somewhere?
My dear Kip, having seen you here since I first ever looked in, I think you are too lovely to ever offend anyone. Hugs aplenty x
Morning all,
Day 10 after T2, and back at work (shortened days and not really doing much), still injecting the Filgrstrim at night and taking lots of paracetamol throughout the day / night. Not yet n as much pain as the T1, and feel much better (relatively).
I had a very low day yesterday after reading about Rachel Bland, I can’t bear the fact that she has such a young child, it’s so sad.
I guess we all have to live whilst we can, cease the day and all that!!
I have booked myself in for some counselling in October as I feel that mentally I am feeling worse as the treatment goes on (think I am sicker now than I was at diagnosis in April!)…
Anyway hope you all have a lovely very day and not suffering!
Hugs to all,
Xxx
Morning all. Well I have made it up today at least! Bit of tummy ache but not having to rush to the loo. All is not right, but hey ho!! Glad those of you who are on T2 are coping well. It gives me hope for next week as I have really not been able to do anything for the last two weeks.
Very sad about Rachael Bland, I think especially for the TN ladies. BUT everyone is different so we must all continue with our journey. Her poor husband and son though. Makes me so sad.
At least the sun is shining today although there is definitely an autumnal nip in the air. Nurse coming soon to flush my Picc line. Love to all. Kx
Hi Embolorry
Just wanted to send you a huge hug and say I think you are doing exactly the right thing to talk to a counsellor. I haven’t seen my therapist for over a month as she’s been on holiday but I have an appointment today and I’m hoping to get back on track with dealing with the mental side of things. I too feel sicker than at diagnosis!! Thankfully I’m on my ‘good’ week so having some respite from SES. Thinking of you xxx
Counselling definately looks the way forward for us, I am going to try to do the moving on course, once the treatment is all done, I will need something I think… its the emotional stuff that is so hard isn’t it. Beginning to feel odd about the end of chemo already, and I couldn’t wait for it to end! Its just another step I guess but a step into the next unknown! Feel like a flippin’ spaceman with all this unknown stuff!
I’ll probably need a diet club too by the end of treatment… can’t stop eating even with fat tongue!
Paulus - so glad i hadn’t offended you or anyone else, would hate to think I had as you guys all keep me going!!. I don’t know how to delete either, I’m forever editing my posts as my tablet makes up the craziest words (you’ve probably all noticed… I can spell really…:smileysurprised:)
Kip
xxx
Thanks for your support Kip. Also encouraging to hear you haven’t had any sickness on T although the other SEs sound tough. Hope you’re not in too much pain.
ktk I so hope your 2nd cycle of T treats you more kindly. Sounds like the first T has been hard on everyone. I’m getting a PICC line before my first T on Tuesday. I’m actually looking forward to getting one now!! Only concern is how to shower- we’re you given a plastic sleeve or did you have to buy one? I’m still waiting to hear who will do the flushing. Not sure if I’ll have to go to the hospital each week or if I can get it done by the nurse at my local GP practice.
Hope you can enjoy the sunshine. It’s dull and so cold here in Highbury!
My daughter went back to school today. Starting Year 5. Where did that time go??? Have to say whilst I’ve enjoyed spending time wth her in the holidays, I think we were both ready for her to go back. She’s missed her friends and I’ve missed the opportunity to have naps in the daytime! Can’t wait for a lie in at some point.
Best wishes to everyone xxx
Hi Clare. I was given a Limbo for the shower. It works really well. I hope you can get your flush done locally. It would be a pain to have to go to hospital as it takes less than five minutes. The Community nurse who has just done mine is one of my ex students. It was so lovely to see her except she spent most of the time in tears as I asked about her mother who she lost to pancreatic cancer a few months ago!
Ref the PICC line. I bought a plastic sleeve, but the IV nurses also gave me a prescription request for the GP for a slightly different one (a Limbo). I go to see the IV Therapy nurse team each week who are based on the hospital site for the flush and dressing change.
I finish one course of ABs today but the other last until Saturday. They’re not helping my toilet visits so I’ll be glad to see the back of them! I read up about Herceptin side effects (had my first injection with T1) and what d’ya know - diarrhoea, bone ache and fever! I’m doomed! I did also read about the benefits of taking Claritin (or another anti-histamine with the same main ingredient) to help with bone pain from the injections and T so I’m going to give those a whirl.
Have a bit more energy today, but certainly not where I was at this stage of FEC. Of course I’m not sure whether that’s T or the after effects of hospital and ABs.
Have good days ladies
LJ
Hi LJ. It is the T!! Two weeks in and the first time I have felt able to go out! Spent the last week on the loo☹️. Get to do it all again next week. Can’t wait! Kx
Cdc you can use cling film over your picc line if you dont have a cover or if you go away although its easier if someone else wraps the cling film round your arm.x
HI.
Cdc, the dog sitting was challenging cos my daughters dog is a little **bleep**! Chihuahua cross jack russell . My Patterdale is nearly 10 and she’ll play and entertain him for so long then tell him off. My cats weren’t too impressed but at least the boy, Uhtred is bigger than Milo so will give him a swipe if he tries it on with him. Had a very upset stomach yesterday but I think that’s something doing the rounds cos my daughter had the same a couple of days last week. Just made it to the loo at Waterloo as I got of the train to work. Physio this afternoon. Having it regularly because of the problems the ANC has caused. Need to get my green slip for blood test for Friday’s chemo cos they for got to give it to me last week.
I’ve now done 5/12 of the T so only 7 weeks to go. Hair still hanging on with the cold cap and still no side effects to speak of. Once that’s all done I can give my full attention to my complaint ease I’ve still not had any sort of satisfactory answer as to why I was sent away 2 years ago when I first got referred and then got overlooked for 3 months when I went again in October. Just a load of waffle about how I was tested within acceptable timescales. We’ll the timescales are from diagnosis. The fact that I should have been diagnosed 22 months earlier seems to count for nothing. Had that been done it probably wouldn’t have been in the lymph nodes and so I wouldn’t have needed the extra surgery, probably wouldn’t have needed chemo and certainly would’ve been left with extensive nerve damage.
Someone, somewhere is going to pay for this. Even if I lose someone, or several people, their jobs.
Rant over.
Hi Sally
I hadn’t realised that your treatment had been so compromised. Sorry to hear this, it sounds like you have every reason to rant! It’s hard to find the mental energy to complain effectively and stand up for yourself when dealing with cancer treatment and all it entails. I’ve been unhappy with aspects of my care but I just haven’t the energy to deal with it. Sending positive vibes for you moving forward with your complaInt. Stay strong ?
Jacq x
Hi Ladies
Sorry i tend to pop in and out of this chat,
I have just started 12 weekly course of paclitaxel with herceptin every 3 weeks
Has anyone else had this ? wondering wht the side effects might be please?
I have just finished 4 x 3 weekly EC chemo and had relly bad nausea and tiredness from that
Thank you
Kim
Hi Kimini
I don’t know about the Herceptin but I’m having the weekly paclitaxel. Side effects on it are minimal. Another lady I used to see when I was doing EC was also doing paclitaxel and she had no side effects at all so that part of your chemo is very doable. Hopefully someone else can tell you about the herceptin.
JacqB,
The ball was well and truly dropped on my diagnosis and treatment. When I think about it I get so angry because although the treatment I’m having is no worse than anyone else’s but I shouldn’t need to be having half of it at all. I was very lucky that the cancer hadn’t spread outside the lymph nodes.
@kimini - side effects of Herceptin include bone/joint pain, diarrhoea, fever and runny nose. I’ve had all of those, some of which will also be due to Taxol so it’s difficult for me to tell which is attributable to what drug! My second injection is due next week with the next does of Taxol.
LJ
Morning ladies, another fitfull day due to bone aches for me but at least I’m awake. 1st T and a virus from my other half left me a sleep for days, major sore throat and ears ringing. Just starting to feel something like normal now but not liking the Bambi legs, not tasting food or issues swallowing. I agree about Rachael Bland, her poor family and friends and my heart goes out to her little boy. Been reading her blog and she is similar to me on age, situations and diagnosis and age, so had shed some tears tonight thinking of them and my own mortality. Feeling very on edge emotionally on the T. But that could also be the appointments coming up, cancer review with gp, Doppler scan on arm because it’s still not right, T. rex and now has bruises in shapes and dints all over. Plus received appointment for genes test results ?. Bricking it is not the word. Triple negative at 39 with no history of breast cancer in family. Have it in my head that will be BRCA 1 or 2 and the ending of treatment at Christmas will turn into more surgery (double mastectomy and hysterectomy) and the chance of never having kids. Sorry to be on a downer ladies just scared and emotional xx
Sorry I missed your Birthdays ladies, Belated Happy Birthday ??? to you, hope you had a wonderful day and celebrated it style ? xxx
Goodness Sally, that sounds a horrible situation. I was told 2 weeks to get an appointment at breast care clinic, within 31 days for diagnosis and treatment to start within 31 days of that. Why turn you away? 3 step diagnostics apply to all, ultrasound, mammogram and biopsy. So 22 months is unexplainable. Sending you big hugs. If they not doing their jobs they need telling. We go through enough as it is without any further unecessary treatment or stress being added to it xx
Mimi78
Member
8:56 AM
Hi all
I’ve been a lurker on this forum. I was diagnosed in April. Started neoadjuvant chemo in June. I’m on herceptin, perjeta carbo and docetaxel. I felt the lump shrink by day 3 of 1st chemo and my onc could not feel the lumps by the time cycle 2 was due. I was really pleased with that. I still have my moments and having chemo is difficult I’ve been admitted into hospital twice the most recent was on Sunday as I was so dehydrated from the diarrhoea that my electrolytes and potassium levels were low. The onc won’t reduce the chemo. I still have 2 cycles to go!!! Sending positive vibes to everyone!!