caron - he said it may knock me more second time as it did the first, apparently its pretty common to have it reduced a bit…mary x
Hi Mary
I spoke to someone who asked for her strenght to be reduced in the begining from 100mg to 80mg to lower SE. Do you know what he is reducing your strenght of chemo from and does this make any difference to your outcome, as would be interested to find out. I know that there was a study carried out and there was a small increase in survival by giving 100mg as opposed to 50mg but would be interesting to know about the 80mg option???
Love R xx
hi Rosie - thats what I was on - 100 and he’s reducing it to 80…mary x
I had to have the G-CSF jab again this week - they were very quick, rang me barely two hours after my blood test! So had to pootle over to RSH - didn’t mind, as it’s a lovely drive in the sun, and really the jab doesn’t hurt. Bit achy and sleepy today, but again not too bad. Worst thing was having to have another blood test - I was really chuffed Tuesday because she got it first go, but amazingly she got it first go again today.
Mary,
I had my TAX reduced 2nd and 3rd time as I was having awful problems with my mouth. The doctor said did I want to leave the last one altogether as I had been so unwell, but ever the martyr I soldiered on.
It is such a relief when its over.
I wonder how I’ll feel tomorrow, after my last rads, seems Andie and JO you aren’t feeling the euphoria I expect.
Have the grandchildren here, William, doesn’t like me living here and wants me back in Somerset, I’ve promised to visit when Hospital, dental appointments are out of the way.
Am also thinking HOLIDAY. My eldest son Prod (short for prodigal), real name Chris wants us to go out in September. With everything that’s happened I really need a break… Aer lingus are doing really cheap flights so I might just go ahead and book them.
Woke up at 3, one of those nights Caron!
love to all, Kathy
kathy - good to hear as always with this bc crappy do-dah that someone else has had similar and dose drop etc - and yes a holiday - yes please…if all goes as planned my rads should leave me with 2 wks or so at the end of the school hols but we daren’t book anything yet just in case…mary x
Hello ladies,
Thank you Jo, Andie, Kathy and Caron for the lovely birthday cards - they really cheered me up this morning, particularly when I woke up thinking - this is going to be my worst birthday ever… and was on the point of tears… xxxxxxx
I’ve been feeling really unwell these last few days, and just glad I’ve had the last tax (100 percent, no reduction for me)as I’m not sure I could actually cope with another round. I’ve had the usual aches and pains but also feel as if I’ve got swollen glands in my neck and spent most of last night in the bathroom with sickness… I think I must be one of the few people to feel sick on tax! Just cannot wait for it all to be over…
On Tuesday I was at the hospital though not for me but for OH who had an apt with the eye clinic. He was diagnosed with a pre-glaucoma condition a few years ago, but has been really stupid and not gone for follow-up apts or used his drops to reduce pressure in his eyes. We learned on Tuesday that such neglect has caused major damage to his eyes - with a 95 percent loss of optic nerve cells in his right eye. The best we can hope for is to stabilise the condition possibly through surgery. The consultant was blunt, but there was no other way to be really. So now there are two of us here worrying about our health.
After writing about so many negatives here - I really want to think of some positive things about bc as I don’t want to depress you all - so here then:
* having bc has certainly caused me to value my life more, not take it for granted but to appreciate every day and every detail - the sunrises, the flowers in the garden, the hello in the morning from the neighbours, and the hug at night from OH when I get in from work.
* all my new BC friends up and down the country on the hair loss strand: you are all amazing and I am sure I would not have met you if it had not been for this place.
* planning special trips and holidays - these become more meaningful as I can no longer take for granted that there will be limitless years ahead.
* the discovery of afternoon television - with programmes like Deal or No Deal and Divided. I find the human interactions and people showing their true colours disturbing yet fascinating.
* having some ‘me time’ - and using this time to do things like creative writing or experimenting in the kitchen: I made pan-fried mackerel stuffed with lemons in a soy sauce and honey glaze yesterday which OH said was good - though to me it tasted more like seaweed.
* going through some kind of rites of passage that has left me in an altered state, to do with discovering my own strength and resilience to combat the disease. We all say we cope when we have to, but this has been my test, and I am suprised how I have got through it… when at times it would have been easy to simply reach for the pills. I feel a bit like Sarah Woodruff - living beyond the pale…
Well the sun has come out, and OH has brought me another cup of tea. I shall try it and see if it still tastes of the sea… if it does… then I will say… one day it won’t and then I’ll know I’m on the way to feeling well again.
Andie and Jo, congrats on finishing the rads - good luck Gail in starting yours, and Kathy hope you are not suffering.
Caron - it is lovely weather but take caution in the sun, and well done on the shrinkage - really amazing.
Mary - think you and I will be on rads at least for part of the time together so perhaps we can keep each other company. Sorry you are having a bad time on the tax - me too!
Suzanne hope chemo is okay for you.
Shelley - you won’t read this yet - but thinking of you and the pyramids - hope it is all as magical as you hoped it would be and the cough isn’t so bad.
Have a good day ladies.
Love and light
Bright xxxxxx
Hi Bright
So glad that your birthday has had a better start than you expected. Mine back in January went with a tax induced blur so will look forward to next year and hope for something much better.
When nothing I drank tasted right I finally hit upon hot chocolate. It did nothing for my waistline but it certainly got past the slimy taste buds.
Off to the dentist AGAIN this morning. The temporary crown the dentist put in place on thursday whilst she is dealing with a root canal treatment, came out last night during dinner. My dentist is on holiday so must see a different one. Not my idea of fun.
The sun is out here in London, I hope it is everywhere else as well.
Have a good day cyber buddies
Andie
HAPPY BIRTHDAY VICTORIA .
Andie, I remember only to well when I had root canal treatment!!
I fell over in the snow when I was about 9 when I was pregnant with Jamie I got an abcess it was agony went to dentist he drained it I felt immediately better .He wouldn’t do any more cos I was pregnant.
I had to go into the maternity hospital for a while for rest as you all know my first baby was stillborn, when I was in hospital my tooth started playing up again so I had to get permission from the hospital to go back to the dentist !! thankfully they let me go!
It wasn’t till ages I had the whole treatment the little rods put in the root of the tooth Andie you will know what I mean as your having it.
Steve has been doing Jamie’s car all day a while ago Jamie ran out of water and so he broke his head gasket .
Jamie never checked his water for over a year!!! talk aboout dopey!
Hope everyone is alright??
Chloe’s hamster honey was found dead this morning !! wondering if all these pets are worth having?? Honey was the mother and was only 6 months old we got her cos we knew Lily was on her way out.
well going to look for something for tea now love Caron x
Hi Bright/Victoria
- I’m sorry first of all, meant to be organised and send you a card for birthday and it slipped my head - not hard to do these days eh…glad you had a good one - I know so well what you mean about it all changing things - weird isn’t it?? Had second tax so leaves just one left - so hope to catching you with the rads etc…when do you get the hickman out? Do they have to take it out in xray dept - meant to ask them…
Caron - will send you a personal hello in a bit…
Andie - hope the toothe settles soon - I’ve had lots of teeth trouble over the years, not funny eh…Kate - hope last night was a better one sleep wise…mary x
Hello Ladies,
hope everyone is well?
Well I thought I was beginning to start to be normal again but last night went to bed at 1am and woke up at 2:25pm!!!
Anyway where your nails are not attached it goes white but before that it goes red (like blood spots), so my little finger started to hurt when I looked it was yellow underneath, I said to Steve thats not the white that you get that is yellow, so I got a nail clipper and cleaned the nail then all this puss started oozing out !!
It’s infected I don’t know how or why cos that nail is still on, anyway it hurts waiting to see how it goes.
I’ve told Steve not to let me sleep all day tomorrow as were meant to be having a BBQ (hope it’s nice weather)
I still feel better than I did my ankles are swollen too it’s like what I get when I go on holiday my feet swell & ache for a few days it feels exactly like that, does anyone know what it is?
It’s obviously water retention ? I wish I’d lose some then I might lose some weight?.
Britains got talent … I didn’t think it right to let the girl sing again cos they wouldn’t if it was a adult and last year Simon wouldn’t let someone through cos he said their nerves got the better of them and they’d fall apart on the night, so he has contradicted himself there, I did think the girl was good but she fell apart so i’m sure the other contestants didn’t think it fair??
Anyway had my moan love Caron xx
Hi Mary,
Normally if the veins are okay again in the arm - the hickman line comes out about three weeks after chemo and at my hospital the chemo unit sorts it out rather than the rads team. But in my case because I suffered a chemo burn it has to stay in until after i’ve had a final scan which will be organised by the oncologist who is also rads consultant in the first week of rads.
Your happy birthday thoughts are enough - I never knew what forgetfulness was until I went on chemo. Just waiting for the fog to clear…
Bright x
A much better night, thank you Mary.
Very emotional today, my last rads. I should feel so happy, but I’ve suffered with my skin and I know its going to get worse before it’ll get better.
Since July last year, I have been focused on treatment,now its over.
No tamoxifen or herceptin for me.
Hope everyone has a good weekend,
Love Kathy
hi kathy, it must be an odd time, I’ve been thinking along similar lines even though not quite ready to start rads yet as I have 1 more chemo to go june 18th, but keep thinking what after all the intesne stuff??? I hope the skin issues soon settle for you…take care, mary x
Hi ladies,
I am slowly emerging from the last chemo fog. Day before yesterday I was suffering from puffy streaming eyes, and then yesterday I was very breathless. A bit better today though. The last couple of afternoons I’ve spent in the rose garden of the local cemetery - which is the largest green space near me. The cemetery is among one of the ‘seven stars’ of London, (others include Highgate and Kensel Rise) - known for their wonderfully atmospheric looking gothic graves, stone angels and long Victorian dedications. Among the people buried at our local one - includes the Victorian cook Mrs Beeton. But the rose garden was a good place to sit as there was plenty of shade. My intention was to read a good book, but both days I ended up nodding off…
I was glad Diversity won last night - the best act I thought.
Going off to make supper now… pork escalopes in an apple glaze served with roast apples, pointed cabbage and healthy chips. Looking forward to doing some baking tomorrow as on Tuesday Andie is coming round for tea.
Love to all.
Bright x
evening all,
After being up all yesterday it seems I couldn’t get up two days on a trot!!!
Wondering when I will have 8 hours sleep again and get up at 7am like I used to.
Im glad diversity won yjey were amazing and susan boyle isnt the brightest candle on the cake!!.
Jo how is your hair now? (mine is still the same)
love caronx
I was glad Diversity won - they were brilliant. I’m really not sure about the Susan Boyle thing - of course she should have the right to go on a show like that, and to an extent it was the newspapers not the show that was putting her under pressure. But she has a learning disability, and many people with an LD are not emotionally equipped to cope with all the buzz - it would be bad enough for anyone. I see she’s now been taken to a private clinic to “rest.” I was bothered about that little kid, too - they ought to have a minimum age or something.
MESSAGE FROM VICTORIA
Victoria has had to go into hospital as she developed a tempreture they think it’s from the hickman line so she’s now on iv anti biotics
for 3 days (she went in yesterday) so no lovely cakes for Andie !!
I have been really tired still thought I would be over it by now but went to sleep at 1/2 10 last night and steve woke me at 11am.
My knees keep feeling like they are going to give way.
I am making bean & sausage (out of a tin) pizza (dough made in bread maker).
hope everyone ok love caron xx
So sorry to hear Victoria’s not well.
From what I can see we seem to get one thing out of the way and something else comes along.
I love the warm weather, but due to rads, I’m keeping out of the sun.
I’ve been given dressings and advised to take painkillers. But It still is very sore and looks a mess.
Hope all are doing ok.
Love Kathy
Hi Katemate,
I must say I’m not looking forward to the rads ( I thought that was meant to be the easy part ).
I had a phone call from my BCN she wondered if I could get in earlier to have my surgery but she then said I wasn’t ready when she asked if I was still tired and my legs are still wobbly, one good thing though she asked if my arms were still bad ??? I said my arms are alright so obviously thats one thing I must have got away with !!
I have lost YET another nail today thats 4 now !!
Heard from VICTORIA (brightlight) she is alright if a bit bored already! they said she might come out on Friday as the infection she has is in her blood, but luckily it’s not the worst type.
wonder if Shelly has had a good time? she will be home soon won’t she?
Jo my hair is still rubbish too and I still have no signs of any eyebrows!!
love caron xx