Hey Jen. On day 3 of mine and headaches have been a thing for me too. .No TMI here, My period came on the day before my first dose for extra funsies - three weeks late because of tamoxifen (which I came off for chemo).
I slept bad first night but last two better. I wake up with low level nausea in the morning and that’s when I am most mentally low it seems. I need to allow myself to feel how am feeling. I get a bit weirded out by what’s happening to/in my body!
How were the first couple of days for you @jenhopeful ? The fatigue knocked me for six, but I am guessing that’s not abnormal - though we will all be affected differently. I feel like I am weightlifting my body! x
If you are worried about cough/cold then call advice line I would think. I’ve found it hard to know what qualifies… When I felt so awful, but no temperature or anything, so I just took it as fatigue. But when something starts worrying you I doubt they mind a call. (Note to self - take own advice)
My most random conundrum has been what if I get a fever, and they call me in to check bloods or go to A&E and I can’t find anyone to take me? I don’t drive and my partner is a 45 minute commute away on a work day and hospital is 30 minutes. I have a short list of friends to call but for some reason that was my 5am worry this morning!! I don’t fancy getting sick in an Uber. I may ask the nurse next time what to do in that situation. I like to know what the back up plan is then my mind relaxes!! It’s so very hypothetical as will probably find someone. Weird what gets your mind going , of all things!
Morning @Kara
I have felt the fatigue but I think the steroids masked that pretty well for the first week and now it doesn’t seem so bad. That said I have been having a sleep in the middle of the day (2-3 hours) and then I’m still able to sleep at night, so if I wasn’t able to do that I would feel much worse for sure. I did feel nausea in the first five days but that seems to have gone now and I haven’t had my anti sickness this morning as just don’t feel I need it. I’d say a background headache is probably my most significant symptom remaining, now the nausea has gone in the most part. If they are all like this I feel like it might not be as bad as I’d expected, but I am trying to not get my hopes up. I was given a hormone implant injection (hosteling aka zoladex) with my first infusion and had my first ever hot flush this week, so that was interesting
Yes hot flushes are fun aren’t they , got them on tamoxifen!
I am feeling a bit low if honest. I am wondering if part of all this is just that this has forced me to stop. I have been staying so cheerful and positive, managing symptoms and procedures around work… I wonder if it’s hit me hard partly because I have just allowed myself to pause …and it’s all caught up . I don’t know. So many threads entertwined. I may try the BCN line at some point this week if I am still struggling. I suspect I need to have a good cry
I think I didn’t have any particular expectations to compare to. Its all been one thing at a time
What have people done about work? I took this week off as a cushion. I work part time and from home so it’s quite a helpful setup per se but it does cause me some worry about managing . I guess I play it by ear. They granted me an extra two weeks (pro rata)of compassionate leave at full pay on top of normal sickness policy and are very supportive. I just don’t know what I need in myself at the moment.
Three days into cycle one is probably way to early to tell. Just needed to waffle about it somewhere
I’ve been signed off work since I was diagnosed in August I couldn’t face going in then had surgery planned etc I feel like a bit of a fraud most days now I’m recovering but with chemo planned I’m not sure what to do I could work from home but unsure if I would be up to it through chemo?
Definitely not a fraud! I think we have to take it as it comes. I’m struggling with idea of how to manage it. My GP said at the start to just ask for sick note at any point - and this can be for the overall impact of the diagnosis and mental health as well as direct treatment.
So what ever we choose, I don’t think we should feel fraudulent or ashamed… Let’s do what we need xxx
I work for myself from home and though I have worked this week, I haven’t done anything where I am under any pressure or have clients to answer to. I have found work a good distraction but also grateful for being able to drop it if I have a bad head or need a nap .
Be kind to yourself @Kara , it is an emotional rollercoaster. I feel a kind of weird anti climax. I’ve been waiting so long for chemo to start and now the realisation that this is it for the next 5ish months is a bit of a downer. I hope you feel lighter soon but if you don’t, it will pass x
I’ve got fit notes - may be able to work - reduced hours, reasonable adjustments etc. that way it doesn’t count as sickness - so full pay remains.
With a cancer diagnosis you are classed as disabled and your employer has a duty to support you to work as much as you are able - (helplines will have more accurate description).
My employer is being brilliant in allowing me to work as much or as little as I feel able (it varies). On average I’m doing about 5 hours a week- they are very targeted in what they ask me to try and contribute to (am generally giving advice and opinion, rather than deliverables they need by x date - I reject any pressure).
I also work from home. I work on long term projects and have had to hand them over to trusted colleagues- timing is awful as they are all coming to critical points now, so keeping my hand on tiller and supporting those colleagues with advice means I’m not off work worrying about my plans or intents going awry - so win win for me and employer.
And will have a chat with my GP too when I feel up to making the appointment. Sooo many appointments this year, my breast care nurse actually said “this poor girl has been scanned within an inch of her life”. Basically I had to wait 2 months after diagnosis for surgery as they kept finding suspicious things on scans and then needing more scans. Worst was the EBUS (endobronchial ultrasound) they needed to look at a lymph node in my lung and tried three times to get the needle down to biopsy it - but it was too dangerous owing to where it was with blood vessels. So the whole procedure - which was horrible - was a bit pointless. They were very kind. I was weepy at the end and said to the surgeon 'was it because I coughed too much ’ and he said ‘no, you were perfect,’ and patted my ankle in a very British way - I appreciated the kindness in the gesture.
My work have been brilliant and have varied on paying full pay beyond my contractual time frame which is lovely, just so much waiting I had a CT last week and won’t get results until it’s gone through MDT on Thursday I am beyond anxious it’s just awful xx
Oh bless you… Big hugs. I tried to manage the waiting times by seeing them as little pauses to recover between things. It helped a little to see it that way. I know the feeling of waiting for the MDT! My breast surgeon would occasionally get frustrated with the hold ups. I found that oddly nice, he was really on my side! I miss him. My oncologist I saw first was amazing and I instantly loved her… But then saw a colleague instead last time. He was perfectly nice but I had got so attached to her I felt a bit disappointed and weepy (but then I was having a huge hormone swing coming off tamoxifen too that day!)
I have gone off topic but I do try and see the waiting times as times to breathe. Xx
Sending hugs @Kara, it’s a lot to wrap your head around!
I’ve been signed off for the duration of treatment - I have a stressful job and just want to be able to focus on me for a while. I’m fortunate to have good sick pay though, and my critical illness policy is paying out (every cloud…).
I hadn’t realised that was an option - may be worthwhile after I’ve had surgery and radiotherapy to take the pressure off a bit. Though I’m lucky my work are being very supportive so have already agreed will be a phased return when I’m ready
I didn’t have critical illness cover. I have a weird mixed emotion situation after my brother died tragically (won’t go into detail in case it’s triggering) earlier this year (a month before I found lump). My dad spread out his pension fund between the siblings and it’s meant I haven’t been panicking about money like I would have. Like I say mixed emotions, but I try and see it like whispering a thank you to him.
Thanks @Kara being in my own most days isn’t helping my anxiety when waiting for scan results I’m terrified it’s spread but I guess everyone felt the same waiting for ct results, I have a visit from my manager this afternoon so will be nice to catch up. Hopefully I will get some good news Thursday x
@emilyxxx Totally get it, and At our stage of treatment we just want to get on with chemo and not find anything new! It’s a normal feeling and fear to have Thinking of you big time and sending love
