Hello again everyone - just this moment had a phonecall from the oncologist nurse to say that my chemo tomorrow will have to be postponed for the week - neutrophils down to 0.5, WBC 2.2. Not at all surprised and strangely not that disappointed - I’m hoping that I might just get to feel okay for a day or two before the next onslaught!
Apologies, but still don’t feel too well so will save a longer post for when I’m on the steroids again.
Hoping that everyone is managing okay.
Naz, x
Hi Polly-and all.
Sorry I haven’t been on here for a while i have moved to the tax threads and so you may find me on there. I’m doing ok but tax is a but of a rough ride, however we have no choice but to do it.
Its amazing how time is passing by from when this thread was started and where are slowly but surely travelling down the road of chemo. In a few months we will be nearing the end.
Take care
Sukes
Hi all, sorry I’m totally losing track of threads after not being on much last week. Have set up two new (well, 2nd-user) computers from eBay and whoopee, broadband is working on four computers as I type this!
Hope everyone is enjoying the weather. I’m sleepy in the afternoons but don’t actually go to bed if I can help it. Been taken out for a couple of pub lunches and drop off in the car, or I’ll easily doze on the sofa. Not disabling exhaustion, though, and no sickness again after 2nd Epi last Friday. Hair is trying to hang on, thinning but not falling unless I comb it, so I’m hardly touching it. Sure it will go next week. Everyone in bad moods, esp eldest, 21, who is picking rows with everyone and being insufferable about the stress in her life - a good career but she hates the job, lovely boyfriend who lives here but she grumbles that they still can’t afford anything, a car bought by her dad but it isn’t new enough, her horse lives here and isn’t talented enough, she has friends, looks, a holiday abroad booked… I’m lucky, really nothing to moan about at all!! Lyn xxxxx
Oh the joys of being a parent!!!
If I’d known then what I know now I’d have stuck to cats and horses!
…but it seemed a good idea at the time…!!!
Oh the joys of sex !!!
Can’t remember that far back!!!
Hello again, just wanted to pick up on something that you said, M-L, i.e that since your diagnosis, having stepped back from 3-4 years of a “peculiarly horrid existence” as “a marginalised, mature-age PhD/lecturer/researcher facing a post-doc dead-end” you are now experiencing a “different movement of time” and “love it”, I couldn’t agree more. I went through a terrible time while I was researching/writing my PhD - for all sorts of reasons - and although I finished a few years ago now and have been in a reasonably well paid job more or less since finishing (I work in Higher Education as a senior administrator - full-time permanent posts for philosophers are limited - and I’m also incredibly lazy and would not have - and certainly have not - published the requisite number of papers, books, etc that apparently make a good academic) I really appreciate the additional time I have during the day now and the shift in the whole pace of life at the moment - and I’ve got a little spare money to treat myself with occasionally that I definitely did not have while I was studying!
And, of course, now my chemo has been delayed for a week even if I can’t/won’t be sunbathing I will at least feel reasonable over the weekend enough to enjoy the fine weather and my garden. Oh, and on Monday, I am going to one of the Look Good Feel Better sessions where I should receive expert advice on how to look after my skin, apply make up etc - and walk away with over a £100 of cosmetics/skincare!
Apologies to anyone if I am too upbeat - when you may be feeling a little rough with the chemo but it feels so long ago since I felt just a little optimistic that I’m afraid I am going to succumb to it!
All the best to everyone. xx
Hi All,
So sorry i hav’nt been on here for a while, but been enjoying the weather and catching up on a few things with my kids while the going is good! My onc has decided now that I need to have antibiotics before my next session of chemo to try and keep my sinus at bay - hopefully!!!
How r u all, like polly suggests it has gone quiet on her recently I suppose everyone is making the most of this fab weather
well no news is good news, take care everyone,
Paula xx
Hi friends
I haven’t really got anything to say as life has been quiet and problem-free the last few days and I’m making the most of it! Just wanted to say hello to you all and push this thread back up again. I’m now 2 weeks after chemo and starting to feel good again. I’ve got a week to enjoy the better days before chemo no 3 on 19th. Hopefully the weather will be kind to us all so that we can get out and about on our good days.
I hope all you ladies are as well as you can possibly be - if not, I send you hugs and hope that you start feeling better soon. I’m hoping that as it’s been really quiet on here it means everyone is OK.
Enjoy the good days everyone and keep well!
Love
Polly x
Hi all,
Like Polly, I also hope the quiet means that everyone is well and too active to find time to ‘rest’ in front of the computer. I’ve recovered from whatever took me into hosp for 4 days - & hopefully won’t get it again as I get Neulasta shots from now on (as I mentioned elsewhere) which keep the white cell count normal. Next session on Thursday if my blood tests are OK on Wednesday - here’s hoping because I’ve really felt for those who have had to sit through postponements. I want to be out of this by the end of August so I can have a summer holiday before rads. Get the priorities straight!
And Naz - it wasn’t the research/writing of the PhD dissertation that got me down, I’ve never been happier & my funding was very good. It was the flop afterwards when my subject proved uninteresting/non-commercial to Finnish foundations (who are NOT interested in community formation among 19th century British merchant families in Petersburg) and research funding dried up (I should have looked into mobile phone use or something - Nokia just throws money at social scientists - or moved back to Britain or Oz, but there’s the family, you see) and had to settle for short research stints, part-time lecturing, brown-nosing, economic insecurity and subjects not of my choosing. Not my kind of thing at all. As you say about philosophers - not a great call for anthropologists either, especially if they are fifty and don’t speak the local language very well. Y’gotta laugh! I wouldn’t employ me either! This has given me the mental space to re-assess and start off in a new direction.
Cheers all, and best of luck for the next round.
M-Lxx
Hi all,
Sorry to have been out of touch. After 2nd chemo ended up with phlebitis, and a temp, so had to spend a week in hospital. It was great fun. I had such a good time telling medics they weren’t allowed to take blood out of my left arm. We even had a mexican stand off, with me refusing treatment. I won. Oh the joys. Then, once I got the cannula out (because the vein had tracked etc) a junior doctor showed up two hours later and told me it had to be reinserted. You know the fight or flight instinct? I did both - I told the doctor my breast cancer care nurse was coming in and would tell her what’s what and then I ran away!!! The poor doc is at the top of the stairs calling to me to come back, she won’t touch me etc!!! You couldn’t make it up!
The vein in my right arm has now collapsed. When I got out on Thursday my neutro whatnot was 0.44. Am hoping it’s now 1 so that I can get a line fitted. Does anyone know how long you have to wait after having a Hickman fitted before you can have chemo again? I’m scheduled for this Thursday, but it’s starting to look iffy. I don’t want to delay it because, if it all goes according to plan my last chemo will be on my birthday - which is the best present I could get!! Lyn? Any idea?
I hope you are all coping ok, staying out of hospital, and even managing to have a laugh occasionally!
Sue xx
Good evening everyone,
I can see I am not the only one who enjoyed the weather instead of the computer. As I got some normality back in my life and worked hard last week to catch up with my back log at work, I almost felt normal and hardly thought of the next chemo. It was due today, but the neutrophils were down. We will try again on Wednesday, then Thursday they will give me an injection to boost the little bugger. So hopefully I won’t have any further delay. I still have my eyes on my trip to France in August. This keeps me going…
M-L, I see we have the same objectives… Hols first rads after. I am meeting with the radiologist on Thursday and will not let him book me for August. Onc said I could go between two Herceptin and they would even postpone one for me so I can get a nice break.
Sue, I hope they do fit your line soon so you can get on with things. What a birthday present, I don’t think you will ever forget it…
Lots of sunny hugs to everyone.
Sophie
Hi all,
Sophie - hope your neutrophils quickly bounce. I’ve been offered an injection to kick start the bone marrow, but I’m to have that a couple of days after a chemo. Maybe it’s a differed thing you’ve been offered. Line now organised for insertion (and I don’t want to know how!) for Thursday morning, first thing, and I’ll get the 3rd FEC via it in the afternoon! That’s cutting it to the wire time wise, but it seems to work! So where are you planning on going on holiday?
Hope everybody else is having an ok time
Sue xx
Hi Sue,
I have a hickman line and it was fitted on a monday and chemo was administered the next day throught it. I asked if you have to wait for chemo to be administered from a newly fitted hickam line and the can do it straight away. Sorry to hear you’ve had a rough time recently.
Hope this helps
Sukes
Hi Sue,
Like you I will get the injection the day after chemo. So if everything goes well, it is blood test Wednesday morning, chemo
Wednesday afternoon, injection Thursday morning, and radiologist Thursday afternoon.
As for holiday, I want to go back home to France and spend some time with my mum. She had had to have the the roof redone, and tons of things done around the house. My brothers and my sisters and I want to go and help doing the finishing touches. They have my name for the curtains, as I won’t be able to paint shutters in the sun.
It is an old farm converted, and we only have curtains in the old barn. The other rooms don’t really need any. The barn doors are massive (5 metres by 3 metres), imagine the weight of the curtain fabric…
Good luck with your line.
Sophie
Sophie - have a lovely time in France - even if you do have to stay out of the sun! Sounds like you’ll have your hands full anyway…of material! lol
Sukes - thanks for good wishes - the line should make life a lot simpler, and I’m (in a very wierd way) looking forward to it. Only coz it will save me tears!
All the best to everyone…
Sue xx
Sue,
Hope your line has gone okay. Its just a bit unconformatable when they put it in but bearable. It does make life a lot easier no more needles and crap vains. I had 3 epi and my veins were so sore afterwards but they are getting better now.
I always pull it out my bra and tell my hubby its my little willy. I don’t think he see’s the humour in it. I must admit since I’ve had it in my hubby finds it hard to get close to me if u know what i mean as he doesn’t want to hurt me or dislodge the line. Even a cuddle from him now is hard work and I am starting to feel quite issolated.
Sukes
Hi all,
I switch back and forward between the 28th May thread and this one and won’t duplicate my posts - but yesterday’s Tax went well, despite 4 failed attempts to hit a vein. Knowing what to expect helps, swift, efficient service (in and out in less than an hour and a half) makes everything as stress-free as poss, the gallons of liquid I consumed seems to averted ‘foul-mouth syndrome’ and I make a deliberate effort to enjoy the steroids-high - y’gotta find your pleasures where you may. And, like Sukes, there’s not much in the physical department that fits the bill. My big old son still cuddles me - but that’s not quite what I mean.
Now I’m off to stick my Neulasta shot in my well-padded belly - this is going to be a trial because I’m no fonder of needles than anyone else, but other women manage it according to other threads, and so can I. Isn’t this forum a great support? I wouldn’t have had the guts (scuse the pun) without knowing it can be be done by the novice, and the round trip to a clinic would take over an hour and be a bore. Is this what you are getting, Sue? I started a thread on it a while back - it has a miraculous impact on white cell/neutrophil production & therefore infection control. And costs a bomb. At present, sitting in my refrigerator, it’s probably one of the single most valuable items in the whole house! It costs me 3€ - or rather the hospital lent it to me till I get a new national health card for ‘very expensive patients’ and I can fill my prescription at a chemist and replace it.
Love to all, M-L xx