I’ll be your buddy. New on site so not sure how this all works.I wouldn’t call you negative, I would call you realistic and frustrated. You need support. I have been sick most of my life. When your sick you want to feel that you have choices in the decisions. Is there a social worker where you get chemo? Where do you live? Breast Cancer is no longer w death sentence. I know people in stage four that are fine now. Give me your complete diagnosis and I can give some great search sites.
Hi ladies,
Hoping you are all well and coping with what is being ‘thrown’ at us.
Quick update, in case you might be thinking I am getting off scott free on my first cycle, lol.
No temperature, but on antibiotics with tonsilitis. I am so grateful to my oncologist for prescribing those additional injections! And my local GP’s practice for looking after me so well, too.
Day 2 off steroids, no need to take anti sickness tablets today (yet, lol), eating normal, energy levels absolutely fine, but resting all the same, to ensure I shake off this darned throat thing.
xxx
Hi girls,
I have done it, my first treatment and it was quite easy going…I felt no side effects so fare and still not. I am full of energy and had a walk on the beach. Hope it stays like that.
I have question, does anyone know how to send pm’s on here?
xxx
H Sue,
When I click on avatar, no other window opens.
The beach is on the east coast of scotland x
Thanks Sue, unfortunately I cant find anything (maybe chemo brain) do you think you have to donate first to get the possibility for pm’s?
I will try more tomorrow… xxx
Hi paprika I noticed you mentioned the east coast, are you near St andrews? Good to hear your 1st chemo went well x
Hi Cara, I am from Edinburgh, did you start your chemo?
All the best for you x
Hi Sue, thanks for your information, normaly I am not so useless with IT, I work in this branch too, but I am not a programmer. How do you feel today, are you still with no side effects, that would be great. x
Hi Paprika,
step by step guide follows to sort Private messaging - in pictures…have a look at the highlighted sections once on your own profile page
Lol, cannot get away from work, can I? :catwink:
xxx
Hi Sue,
Vielen Dank für deine Bilder, but my page looks different, I got 8 buttons under preferences you got 9 and even I cant read your pics clear (what a work for you, thanks), it looks different. If I click in privacy it looks not the same, but thank you so much, have a rest, I will ask Lizzy from the forum.
I feel quite ok apart from not having the same energy like before but I cant aspect that. Was a long day yesterday, today I feel more like resting.
If you have your downward slope dont forget the warriors have their best time and soon you will feel better, sure!
Take care take a rest xxx
Sue, I like the picture, it’s so true x
Oh no. That is no good at all. Fingers crossed for the temperature then. Hope you will soon be back home with your creature comforts xx
Tina, my thougths are with you, hope the tempreture stays ok and you feel better at home. x
Wish you better Tina try to keep your spirit up although it must be hard xxx
Good morning ladies,
Day 9 after first chemo - day 7 was my low point (physically and mentally) on this cycle, so far - and I hope it stays that way. Knowing now that Neutropenia can strike a lot of us, some more so than others - at least explained to me, why some of the things happened, that did. So I feel a little more comfortable, if that is the right word, with it all and am more prepared for the next cycle, when it comes around.
I am a little annoyed, that my hair has been growing, lol - having made the preparations to minimise distress, when it goes, by shaving it super short. I can now not have it shorn again - and I know it sounds a bit bizzarre, but I will be glad, when it finally starts to shed. Not so keen on the eybrows and eyelashes leaving me though - but it would give me the feeling (rightly or wrongly) that the chemo is really doing its job.
In my head I really crashed on day 7 - so excuse the following rant - perhaps some of you feel or have felt like this, too? I am a career lady and working, but still…
<li-spoiler>RANT COMMING!</li-spoiler>
Why do I have to take other peoples sensitivities into account at this time?
Why can’t people accept that Breast Cancer is not a horror story?
I like my wig and really do not mind wearing it, but why do I have to put it on to keep people ‘happy’ and make them feel more comfortable with me?
I do not want to have to say I am ok, when I am not - as when/if I do say it - I may get judged as unfit/incapable/ineffective/incompetent/weak/not up to things.
Why is everyone advising me not to be open about my current condition, because the opinion that it is a kind of ‘stigma’ I would carry for the rest of my life - and may hinder my future job prospects and the way people perceive me?
Why do I have to avoid honest answers, when I have to say no to an invitation, need to cancel a business appointment or being unsure of whether I can accept it?
Why does that make me unreliable?
I hate dishonesty - I hate lying - what would they feel like, if they were in my shoes?
Why do I have to ensure that I react ‘appropriately’, so people do not get upset or think I am derranged - or get that pitying look on their face?
I know it is ok to feel like this - I know it will pass - I just hate not being allowed to me myself apart from my own 4 walls and people who truly love me.
I am not angry at myself or resent, what has happened - I am angry at others, sapping at my mental and physical strength - simply for the sake of ‘appearances’…
Rant over - …I am fine again now - and and a guess some of the reasons are - ‘britishness’ - as I am of German origin. Hoping no one is offended - and am well adjusted by now to being British :smileywink:, having been here for a very long time.
This explained a lot to me, lol - bbc.co.uk/news/world-europe-13545386
Hoping all of you are doing well - Onwards and upwards!
xxx
Glad you are feeling a bit better Tina. Yes it has been interesting re peoples reactions…have had a relative hear my news and then not heard a thing from them since pre surgery…neighbour of 20 years also distanced herself after hearing. Some though have stepped up well.
I agree it is not easy to know the right thing to say/do but a text takes seconds…the good thing is we know who are true friends now don’t we. Hope everyone is doing ok. I am shedding like a dog. It is really quite dramatic one it starts. Round 2 on tuesday x
Hi Tina, good you feel better! I don’t know if it would help you, if I cant sleep, I say ok, switch on the light and write all things down out of my head, or draw cartoons…that makes me tired and my head is empty ready to fall asleep. x
Hi Sue, I was smiling about the link you send. It’s funny, true and interesting…the different culture. Sometimes I feel more on the safe way to talk to polish/italien/spanish people, they also use more the direct way, you can’t do things wrong.
Good to hear you feel better after your down day. I understand your thoughts and totally agree. I have similar experience, it made me angry and sad but at least wiser.
By the way I can write private messages now, you were right, you have to be a member for some time. x
Hi Paprika,
I am so glad my oncologist is a young Spanish lady, lol.
Although my risk of lymphoedema is relatively low (only 3 nodes removed) I rather err on the side of caution.l shall get back to horse riding, once I have recovered from treatment, am likely to go skiing again, - and of course I drive nearly every day. The thought of me being unconcious for some reason or another and the medics merrily using my righ arm doing blood pressure, IV drips, injections fills me with apprehension. So I got myself this!
A medica ID bracelet! I was surprised how pretty they are in nowadays.
xxx
That’s the nicest bracelet of that type I’ve seen Sue - thanks for posting the link.
Best wishes to all the May 2016 chemo team from an October 2015 “veteran.” You will all get there. xx
Ruth
Hi lovely ladies. Not been around much as been feeling grim so I’ve got some reading to catch up on. Hope you’re home now Tina.
I’ve got a wristband bought from amazon saying
ALERT AXILLARY LYMPH NODES NO BP OR NEEDLES THIS ARM
It was £4.60 Inc p&p and can be worn all the time even in the shower. There are lots of colours and sizes too. I just put medical alert bracelets into amazon. Very quick delivery. Very bright printing x
What a night and early morning!
Started to have backpain at 11pm, but thought it was just a twinge, having spent too much time on the sofa. Went to bed - not comfortable, but as I had a busy,active day fell asleep. And at 4am got woken by an almighty thunderstorm and excruciating pain in my back, which I could not relieve at all. It came in waves and got worse, so felt it prudent to get into my car to go to A&E, after haven taken some Ibuprofen.
I made it to my car in the worst rain and hailstorm for a long time, managed to open unlock the iron gate at the bottom of the drive. I cannot remember how I got to the carpark of our local pub 500 yrds down the road, I know it was in my car…that is all. I rang the ambulance lying across the frontseats of my car with the mobile signal going in and out. 15 minutes of screaming my head off later I was in safe hands.
Oh, don’t you like a little drama?! :smileywink:
By now I had started to figure out, that it might be my kidneys, especially as the E in the FEC can cause some issues there. I feared nephrotoxicity " Nephrotoxicity (from Greek: nephros, “kidney”) is a poisonous effect of some substances, both toxic chemicals and medication, on the kidneys. There are various forms of toxicity." Very handsome paramedics, I must say, lol.
I was so glad I had my new medical ID bracelet!
They tried to take BP on the ‘no,no’ arm - saw the bracelet - and immediately switched. Phew! Proves a point though, lol.
No temperature, BP fine, feeling fine - but in more pain than I had ever been.
In hospital bloods and samples taken - and then wait - and wait - and wait. They offered pain relief, which I refused, as I wanted to judge whether it was getting better or worse. Not that anyone suggested it, but I drank and drank - and drank. The pain improved enough for me to discharge myself after 4 hours without having seen the doctor, explaining I would call the Chemo helpline for advice and whether they could please share the results of the tests. So got myself into a taxi and back to my car and home
Phone calls made, results shared - and again the chemo helpline was absolutely brilliant!
The good news is it was not kidney toxicity - everyone, including me - is a bit baffled, but let see what other test results will show and how it goes over the next few days. My bloods are already good enough for the next dose of chemo! And I am not due until the 9th, lol. But it certainly gives me much confidence that my body is rebuilding very well.
Now trying to drink the English Channel dry!
So lessons learnt
Medical ID bracelet was a worthwhile investment
A&E is not too clued up on understanding challenges of chemo patients (I checked my own temperature)
Drink a MINIMUM of 2 litres of water a day
And NEVER lose your sense of humour, even if it is ‘gallows’ humour. " Gallows humor has been described as a witticism in response to a hopeless situation."
I feel energetic, and well, despite a remaining dull ache. But that is so very easy to manage at the moment.
Let the weekend begin!
xx