Well here I am and sorry for the radio silence! Cherry orchard thanks for asking after me and Choccie giving a bit of an update. It was lovely to see you and then things went downhill! I was absolutely flattened this time, did all the right things took all the right drugs, but have felt like absolute s**t. Have only been able to raise my head off the pillow today 6 days later, although I did do too much stuff immediately after I think, and of course did the whole trip back to France. FEC 3 has been sh**e and I’ve had enough of all of this and feel really fed up and last night felt really panicky that I would never be well again and had a few tears. OH been fab with the mopping up, BUT this morning, timing wise which I should have known I felt a bit better, not yet great but better…What a load of c***pola this whole thing is. I’m sick of it…literally!
Anyhoo, sounds like all of us are variously in the same boat, beverlie, we seem to have a similar pattern and hipchick and Chris and loads of others…Wot a b***er this whole thing is…
I can only just sit at the computer for a bit so can’t catch everyone’s news but love to you all and hopefully I will be around now for a week or 2 in my ‘good’ phase before FEC 4…Oh God…can’t even think about that at the mo…
Ninja, that doesn’t sound great, stay cosy and wrapped up, and glad to know that tax could be better than FEC, time will tell though eh?
I could do with a tiniest of tax trots episode, there is no more room for food anymore, and I’ve dreamt of hauling food back out like bunting from the mouth - lactulose and ‘jelly babies’ aren’t doing much at all now so gonna speak to oncy tom as starting to feel toxic (and I’d like my ‘good’ week to be relatively good)
I ate like a good 'un all weekend for a change, my OH was quite impressed with the amount I managed to put away…my insides disagree though…and I’m still not sure where it all went, it’s all in there somewhere - hollow legs???
Hi Wandy, glad you’ve come through the mire a bit, I came to around day 10 this time, and like you felt like this was never ending, even though ‘halfway through’ <ducks for=“” cover=“”> I felt like I was stood in the ‘shining hotel corridor’ and the end just stretched even further away waiting for everything to engulf me - gosh it gets longer/harder each time… but I’m more upbeat about it all this week, thankfully… hope it gets easier for you later this week…</ducks>
We Im sorrry to hear so many are suffering but it makes me realise im not alone- I now have not had chemo for over a month so waitint to hear when I have FEC 3 hopefully this week??? Finihsed antibitoics last week an had bolld path one and seeing Onc on weds to see a way forward maybe a reduced dose???
Been vvv low this last week and negative which is soooo unlike me but just generally fed uo with all SE and being in hospital and apprently this wasnt going to affect daily life to much PAH!!! Im also findning it hard with little one as feel like i just need some time to wallow and do sweet FA but no chance with bubba! OH asked what I really want - a week away?? I said no I NEEED a day off from bubba completely once a week and to get away cos if peeps offer to look after him and im in house its no good the motther vibe kicks in and i just carry on reagdless of how crap I feel- so been talking to the mums and between them and OH Im having a 24 respite a week of peace and tranquility where one of them looks after bubba and i go to my mum inlaws house which is in lush village and is very tranquil- I feel so much better that this is happening so i know weekly i can have a selfish day and that baba wont miss me too much- imhoping this will improve my mental state and therefore help with phyiscal symptoms!
Also had a papamer at spa at weekend and having hypnothereapy sess this week to relive stress and relieve SE- Im a big believer in this as did hypno birthing to have little one and like complementary and altern therapies!! NOT looking forward to Tax but am determinded to get back to “ME”
oh and been keeping a diary of all this and thinking of writing an E book called Babies, Boobs and Baldness! Thoughts please!!
You are having such a crap time and I’m so sorry. I’ve been feeling sorry for myself after a bloody time at FEC 3 and there you are still waiting for yours. Love the idea of the book name. Go for it!! Hope you get some rest and ready for FEC 3 soon.
Sorry you’re still having the sh*tty end of the stick pointd in your direction and it’s totally rubbish having your treatment delayed still.
I can’t imagine how hard it is for you to cope with SE’s/delays and everything else on top of having the little one… No wonder you’re down with it all, I hope things seems brighter for you once you have your ‘duvet day’ indulgence at the MIL’s. I don’t have anywhere near the same worries as you and yet I still find it difficult when ‘down’ as feel I shouldn’t be, but we can’t help it though sometimes can we, it’s all cr@p.
I put on ipod and turn off phone and escape to greenhouse (if I can stay vertical long enough) when not feeling great and be by myself and have a good sing, (loudly and badly) - so understand the need to be a little ‘selfish’ every so often…
Babies, boobs and baldness - sounds fab, I’d add ‘buddies’ in there too, so you can quote us ‘brave’, ‘inspirational’ and ‘beautifully shaped headed’ lot also <ducks for=“” cover=“” again=“”>…</ducks>
Beverlie
that is fab idea buddies as yes i have been thinking of a chapter dedicated to all us crazies on here as some of the stuff we talk about makes me laugh so much and so long as no one minds i will hvae to quote some it (anonymous of course )as it is so funny and i think could make the book v comical!!!
Thanks Wandy- hope ur right as rain soon and FEC 3 buggers off soon
and apologies AGAIN for spelling!!
I meant to say- 24 hrs, blood tests for pathology, pamper complementary, therapy and so forth- but u get my drift huh??? xx
Hi all, just been catching up on all of your news, having a chuckle or two along the way.
TAC4 for me tomorrow, been feeling very low today - that feeling of dread starts hitting me.
On a more positive note 4 down 2 to go.
Rachel - I sympathise and feel the same - I can cope with the hair loss, (even without a nice shaped head) the gaining weight is getting me down…
So PP can you add Babies, boobs, baldness, bo**ocks and big bums?
Hi buddies.
PP so sorry you’re still having cr#p time with everything but your me day makes me envious perhaps I should do the same but can only hide in my hobby room.If you want some humour try the poetry thread there are some ribticklers there.
Wandy I felt really rotten after fec3 still upsets me to think back to it. (I must be going soft in the head) but fec 4 tomorrow through my new picc line (wish I had done it before any treatment had started)
Said to the nurse that not enough detail is given at the start of this journey you are still reeling from diagnosis and they say you can have line put in (that was it for me)and then %'s spouted to you
She is going to flag it as inadequate information for next dept meeting so it is expanded, explained options more detailed for us who have to make these choices. So something may change for the better.
only downside to picc line is blood clinic wont take bloods, now have to book app. in chemo ward beforehand.
Getting reflux tablets and painkillers ready for fallout this time hopefully will be in control this time
Very small se’s everyone big hugs Chris x
Can anyone advise me? Now have a portacath and have EC4 tomoz … forgot to ask, this magic cream I’m supposed to put on over the port … do I leave the steri strips on, and put cream over top … seems odd … or should i try remove them. Was told to put cream on 45 mns prior to chemo.
When did you have your port fitted? presumably it was in the past 10 days if you still have Steristrips.
I don’t have any cream beforehand. The first time they accessed it, they used a freezing spray as I was quite worried! never had anything since - it’s no worse than having a simple blood test.
Thanks Ninja … had port fitted last Wednes … took big dressing off today and was given some sort of local anaesthetic cream to put on it … just wasnt sure if I was supposed to remove other dressing ie steri strips or put cream on over top … will get to ward early and ask !
Well if you’ve been given Emla, then it needs to be applied directly to the skin an hour before pricking. Remove Steristrips first from above the wound cos they’ll need to take them off to access the port. They like to feel around a bit so that they target the centre of the port.
Be prepared to do some re-positioning! I have to crane my head to the rear left to straighten out the part of the catheter that goes over my right clavicle. They have to leave some free movement or else your head would be stuck in one position and the catheter put under tension every time you move your head. My port is very fussy about the position I’m in when it is accessed when they try to get the Red Stuff out.
If you’re using Emla, then if you wait till you get to the ward, then it will all be delayed by an hour while it takes effect. I must say that I’ve never used it and it’s not been a problem.
Hi,
Wandy, sorry you had a bad time with FEC3. Wondered where you were and was a bit concerned. I hope next treatment is easier for you.
PP, love the idea of the ebook. You have got plenty to write about given all that has happened to you. I hope you enjoy your down time without baby, too. I get the need for the break so you can totally relax and recharge. So difficult to do if the baby is within earshot as instinct kicks in.
Chris, Have you spoken to your onc about your hormone therapy yet? Good luck with FEC4 today and new PICC line.
Angie, Good luck with the new port and EC4 today.
Smiles, hope TAC4 goes well.
There is a rumour that it won’t shower here until later so I am going to try and do a bit of gardening. Fingers crossed.
hi all had last epi on friday yeh but been sick since also have to have the jabs for 4 days to get white blood cells up thought last month was bad with bad mouth but puking up is worse carnt keep nothing down not even water arms are killing me thank god it was the last on to cmf next sure hope that is better
maz xx