H144, I know what you mean. No one who hasn’t experienced this horrible process will understand that we try to put a happy, positive face on for their benefit. I don’t think they mean to be how they are, but it’s through this lack of understanding that we often come unstuck and their perception of our situation becomes distorted though it’s no ones fault. That’s why we all come to BCCUK; it’s our straw that never breaks thanks to God (if there is one).
My HR Manager came to see me at home on Monday (she’s a lovely lady), but the first thing she always says is ‘you look really well’. It makes me want to whip my wig and make up off and get back into my pyjamas just to prove that it’s a disguise and that I really feel rubbish. I at least know that she is total discretion and will NOT make any comments to others at work so I don’t have that issue, I’m truely sorry you do.
I regret that I rather snapped at her ‘well I wish I felt it’. I think I may have upset her which I really didn’t want to do. Ho hum.
Did you all wait till I went to the hosp and then start chatting???
Cybele - Finishing the blog before going to hosp? I do admire your stubborness and I hope it all turns out OK.
Mandy - I asked my Onc and she agreed without hesitation, although she had never offered it. It’s the age of diagnosis with TN that counts, not your age now, (altho I am sure you are about 23).
Maire - I have 7 more to do. I love the idea of “chemopause” and I am stealing the word. If we all use it, it will have to go in the dictionary along with “moth mouth”.
Hamley and H144 - “You look well” is a phrase guaranteed to bring down the red mist. I have officially banned it and anyone saying it to me is treated to an horrific list of side effects that I would have otherwise spared them from. Throw steriods at them.
Today’s post chemo treat was another posh pub in the Woburn region (there are a few). No alcohol on the Carboplatin so I had a desert instead. They had Valrhona chocolate mousse with banana ice cream and salted fudge. Obviously chose this in Cybele’s honour. It was a master piece but I did not take a picture, I just ate it.
Things turned a bit unpleasant when I realised that the anti sickness pills I thought I grabbed were actually a packet of Codiene. So then we had to rush home, only just dodging a suicidal (and very fast) munjac deer. Ouch, as seat belt clamped onto “swelling” and “thickening”. B*gger.
xxx
Cressida-I can’t claim ownership of chemopause because it has been circulating the threads already.
Moth mouth has to be claimed by Lolly-it is just such a perfect description not least because it’s in cheMOTHerapy.
My bloods are normal (well the bits they tell you about. I happen to know my lymphocytes and haematacrit levels are below normal range-not a clue what it means though). So there’s no escaping chemo tomrrow. Drat.
7 more sessions is pants. I really have a cheek complaining about my paltry 4!
Cybele-hope you are getting well cared for and that chemo Brian has been allowed into hospital with you-if you end up with an overnight stary!
H144-Think you need to borrow the flame thrower to punish that thoughtless colleague.
Hamley-I really sympathise about the work thing. I’m itching to go back but also want to at least have a couple of weeks ‘off sick’ when I actually feel ok just to get a wee break from feeling rubbish.
Cressida - or did the Max Wall reference truly give my age away. I am under 50 though so will get sorted.
I hate the you look well thing. It’s because I have all day to apply false eyelashes and makeup so I don’t look really awful and it makes me feel better.
Claire - I’m off work too although I’m doing a few bits remotely. When I’m not feeling rubbish I am enjoying trying to chill out and not having the pressure of 12 hour days whilst juggling 3 young kids and now am actually spending some time with them and husband. Also some lovely dog walks.
Xxxxx
Hi Crackers-Only a couple more hours before last chemo. Steroids have kicked in and I feel more jittery this time and somehow almost as anxious as my first time. Can’t believe it’s only been 10 weeks! It seems much longer.
Thinking of Cybele and hoping the temperature is under control.
Mandy P-Good luck today with your chemo and for the next few days/weeks of side effects.
QD-how are you getting on with Tax D Number 3?
Gosh theres been a lot of posts! Hope your’re all ok. My neighbour did pass away on Tuesday night. Sad but not unecpected.
Hope Cybele is ok
Maire - there is light at the end of the tunnel ! Now that I have no fingerprints it’s a good time to commit the perfect murder- if only I could find the energy!!!Who would I murder? Ah there’s a queue. First one- education sec!
I’m off work until September. As a teacher I work in a snot factory! However my boss phones me regularly and Im pleased that a quarter of year 9 have opted to do Drama GCSE next year. Thank God that Mr Gove has dropped his stupid idea of the EBAC. Must try harder Mr Gove! The EBAC was doomed to die before it began because there are so many subjects missing from it. How about this Mr Gove. STOP meddling in education and actually let us teachers teach. I’ve taught for 20 years and I have NEVER had a fail at GCSE level. Why? Because I care about my kids. Because I instill discipline. Perhaps if you backed us and gave us some tools instead of taking them away and punishing us for your mistakes then education would improve!
As you can see I feel a bit stronger today!!!
QD x
So, they let me out last night after a gruelling few hours of treatment, and lots more interesting new drugs.
Don’t think I’ve ever been quite so happy to be home. WAs terrified they would insist on admitting me.
I’m not neutropenic - HURRAH! But they gave me all the treatment, anyway, before the results of the bloods came, so they wouldn’t lose any time in case I was. Unfortunately while they doing the IV antibiotics, which took a really long time, I started retching, but couldn’t vomit as I had no food in stomach, so then they stopped it and gave me IV Ondasetron , and then restarted.
They also gave me antibiotics to take home - was puzzled, as what I have is viral infection, not suseptible to anti-biotics, but they explained that these are to stop opportunistic secondary infections, which may come from bacteria you have inside you already, which hop in while you are weakened from first infection, and of course the chemo. That was all quite interesting, and I’m understanding a bit better why they have t o do all this now, and why it IS important to go straight to hospital if you have a fever, even if it’s from what is obviously a cold.
I had been very reluctant to go to the hospital yesterday, though it would end up being a huge fuss over nothing, but now do appreciate the point that something minor has the potential to blow up into something that will kill you.
Something very interesting and useful also transpired, when I got to chat to one of the acute oncology nurses, but will write about that on blog. Haven’t got energy to do it twice.
Last night after I got home really hit new psychological low, though: just feeling SO physically and mentally BATTERED, and just so tired of all this. and still another 3 cycles to go…
Bit chirpier today, though, after a good night’s sleep (and lovely Lorazepam helped with that - I thought I deserved one last night). This virus is awful, horrible cough, feel really rough, temp still really high, but I know the drugs are protecting me from anything worse, so no more anxiety (touch wood). And my bloods were ok, so no threat to FEC4 next week.
So, things looking up…
Hope you’re all having a better week than me xxx
QD - sorry to hear about your neighbour, but, good rant - keep it up.
Cybele - you OK?
Since seeing geneticist I picked up a leaflet about ovarian cancer and have now diagnosed myself with it. When does cancer paranoia end???
Oh Cress, NO! NO NO! throw away the leaflet!
Cybele - glad you’re ok.
Maire/Mandy p - how’s it gone?
I’m waiting for doc to phone me. (Have been waiting since 10 am !). when I was preggers with sproglet number 1 (nearly 19 years ago) I had a hernia. It’s never really bothered me. Had sproglet number 2 and can erect a set with no probs. Every now and then it flares up to remind me of its existence, so I was given omeprazole to take daily to protect my stomach. It was fine until this cycle when I had horredous heartburn last week. I actually thought I was having a heart attack . So my onc said to double the dose for a week. Fine, except that now I’m back on a normal dose I can feel the hernia. I’m coughing and have a sore throat. Can I increase the dose for the rest of the chemo - seeing as how I’ve still got another 3 of them to do? Dont know. They can make your white blood cells fall.
aaargh!!!
QD
so glad to hear from you Cybele , been thinking about you since you went in. good to hear they let you out.
and Cressida, stop googling and reading to much wait till you have your results, you will send yourself potty, take care and take one day at a time x
sending hugs to you all (((()))
lolly
x
Bloody leaflet. I promise I did not google it. It was just there at reception in the chemo unit. Aaaggghhhhhhh.
As for Omeprazole - I was told I could take 40mg throughout and I know plenty of others did. Best ask doc tho, as I am not one.
x
QD I am 10 days past FEC 4 and have been prescribed Omprazole 20 mg since FEC 2. I have to take one in the morning and another prior to my evening meal. Thus if you are on 20 mg then increasing the does will be all right.
Cybele - So pleased you are feeling a bit better and that you managed to escape the confines of the hospital to eventually snuggle into your own bed. Nothing like it. Thanks for soldiering on until the last minute, despite your rapidly failing health, in an attempt to satisfy your readers and get your Blog written for the 15th so as not to disappoint your many addicted readers - myself included. Your dedication and sense of duty is much appreciated. However, should there ever be a “next time”, perish the thought, get your butt straight over to the hospital and s’d the Blog!!! I shall however look forward to reading gthe next instalment.
Hi Caroline
just read your blog and wanted to say Omeprazole was my saviour for toxic stomach and indigestion. It worked immediately and I haven’t suffered since.
Thank you for the blog, I look forward to it every night and I have recommended it to many others who are also now hooked!
i hope you are feeling better today.
Jayne x
morning peeps!
i am now on 40mg of omeprazole - and feeling the benefts already! x
QD
Cybele just read your blog and so glad you ended up in A and E -sounds a cruel thing to say-but really seems to have been the silver lining for you. I’ve been taking Omeprazole since moving onto Taxotere and it has been an absolute essential because the heartburn was completely horrendous. I’m really hopeful that it helps with your chemo rats. Also your chance encounter may help with the wider chemo community if you’re listened to. I always feel such a pest when I phone the unit because I know I’m tearing a nurse away fom some vital infusion so having a keyworker would make all the difference.
QD- I enjoyed your teaching rant. Keep it up. I work at the opposite side of the educational spectrum with 2 to 5 year olds and if I started ranting at the directives from on high I’d never stop.
And talking about rants I won’t even start on bloody car insurance claims or for that matter windows 8!
Anyway on the plus side my last chemo has been delivered and though I’m feeling ropey. I’m glad that bit is over.
Hope it went ok for you Mandy.
Cressida -I’ve just read my Tamoxifen leaflet and it sacred the crap out of me. Leaflets are bad! However to counteract that I met a woman who was diagnosed with breast cancer last year (only one miniscule micromet on one node) and had secondaries so I know that for me Tamoxifen is a must!
Hi. I wrote a message on here at about 8 or 9pm yesterday, but although I know it was there last night when I looked again at about 10pm, it’s disappeared this morning. Does anyone know if the messages are sometimes banned? I didn’t swear or anything. I hope I’m not in trouble!
Leaflet is in the bin and I have started my Omeprezole again.
QD - Unless you posted naked pics or dodgy links I think it probably the BCC website being a bit random. They keep saying they are fixing it…
Obv I mean Hamley. Chemo brain.
Hi all
Had tax yesterday…dont feel too bad…slight griping pains in tum but expect the worst to come…
Cress - Ive been referred to gentisist in Leeds, so that’s good. Do you know how long it all takes only i could do with knowing before my recon which i think will be at the end of May… how comes you;re taking Tamoxifen?
Wow Maire - the last one…what happens now?
Hugs to all.
xx