What a bloody cock up at the worst possible time. It might be worth asking about having a PICC line fitted if they’re going to bugger around with your veins? Hope you’re feeling OK now. Take it easy. I start at 9 tomorrow morning. Not long now x
Spoke too soon about feeling normal. The nausea has kicked in and it’s not nice. My poor student got benefit of chemo brain as I was even more befuddled than usual! Got a dry mouth too. Also I just now burst into tears for no particular reason which I never normally do. Well it is a rollercoaster after all. How did it go for you, Mooney?
Cock up indeed Robin I think you should think know about a PICC line like Emma.But glad you are feeling well now Did they warm your veins?
All that stress and everything went well for me and am feeling OK at the moment. The girls there are professional caring competent very busy, meticulous, dedicated and just lovely. Absolutely first rate. The only problem I had was they could not use the port grrrrrrrrr. It was still too bruised and swollen. I was so cross as i had to have the drip through my vein which i absolutely didn’t want. However the Nurse that did my cannulation was first rate and warmed my veins for about 1/2 hr.
I feel fine, a bit muzzy headed but OK. I am very tired though. All that stress lol! But my bruised boob is famous, I had 2 nurses and a doctor looking at it. ???However I can’t eat non pasteurised cheese no St Agur for me, and all my meat has to be well cooked, no more bloody steaks! Can only eat in known establishments, no more Als caff !!! Love and Hugs to all and good luck Scotty (Emma) and anyone else for treatment for tomorrow. Take heart from both Robin and my experiences. Hugsx
Oh No! Have you get sickness medication, they gave me Emend for three days and then stemetil.Chin up.?
Well done both of you, sorry you’re not feeling great Robin. Definitely worth asking about a PICC line with the vein faff. If you do want to go that way, ring the BCN ASAP. For me they had to do MRSA swabs before and I’m actually having it put in the day of chemo 2. Hopefully it’ll be useable then, but since I’ve got 8 cycles it’ll be worth it.
I’m still good, nothing to complain about (realise I’m very lucky).
And Robin, good for you fighting your corner. I’m quite unimpressed by the admin cock ups that seem to be rife. And intend to make a fuss about it, initially at Guy’s but also further up the NHS. I see it every time I go in.
I have wig appointment tomorrow. I’m not cold capping and am hoping to carry off bald look/ scarves most of the time. But it’s free here and there maybe some work days that need a less ‘in-your-face’ look. So I’m trotting back on the DLR/Tube again. Obviously I haven’t got anything better to do!
Good luck tomorrow, Emma. The actual chemo has been the nicest bit so far. Comfortable chairs, everyone being lovely and at least the whole thing is underway. Hope it’s ok for you x
Ok enough from me, I’m off to browse comedy wigs. I’ve got dark hair but was wondering if I should go for platinum blondes?
Ali xxx
PS I’m proud of all of us. This is tough and we are doing it; day by day, treatment by treatment, needle by needle …
Hi Ali
I bought two wigs in the end. one 'me’wig that looks a bottle like my own blonde hair and one fun wig reddish brown completely different!! Have worn both occasionally to get myself used to the new look and others!
I was so gutted about not being able to use my portacath today. The chemo unit could not believe the extent of the bruising done in a sister hospital. So they have taken notes and will take it up on my behalf.
I must say though the rest of my treatment has been exemplary.
Still feeling OK.
Hope you feel better soon Robin J.
Hugs x
Yes well done Robin and Mooney, you both had some obstacles to overcome to finally get started but still took it all in your stride by the sound of it.
I got a bit jittery just turning up at the hospital this morning for the blood test etc. However, the nurses were absolutely lovely and said they would have a cup of tea waiting on Monday. I am going to try the cold cap but I don’t feel bothered if I decide I don’t like it, I have made some nice hats in prep and I would get a work wig. I know my mum will struggle to cope with me bald although she has offered to cut hers off in sympathy, bless her. Family and friends are being incredibly supportive, I find that really helps.
Good luck tomorrow Scotty.
Beedot x
Good luck today Scotty and anyone going for first chemo and treatment today. Hopefully it will be trouble free. Mine was except for my port grrrrrrrrr! The nurses were skilled and caring. I have had no real side effects yet. But my hospital gives Emend for the first three days- they are gold standard anti sickness pills -expensive but the best. Ask for them Robin J or anyone else experiencing horrible nausea.
with love and hugs to you all. We are strong.x
First chemo done. Back home and hubby has the kettle on. All plain sailing. I cannot recommend getting a PICC line put in highly enough. You honestly don’t feel a thing. My, some would say bordering on neurotic/ expecting a nuclear war, contents of chemo bag went largely untouched. Did use sucky sweets and listen to music on ipad. Tried to watch film (Lady in the Van - one of my faves) but couldn’t really concentrate. When it came to the drugs bit I just put scarf over my head and looked away. Staff are amazing. Also habe Emend anti-sickness and have district nurse coming on Saturday to show us how to do the injection into the tummy (G-CSF I think) which I have for 7 days, standard at my hospital - helps white blood count. More f@@@ing needles!! Feeling a bit spaced out but not nearly as bad as I thought I would. Last tip. I did my best Nigella and made myself lots of veggie stuff to freeze beforehand. I’ve just gone to getg a soup out and the tubs all look the same o a bit of a lucky dip! Make sure you label first!! Emma x
Hi ladies,
so brilliant to read that some of you are coping with your first ‘dose’ well. Great news. Gentle warning - you might feel more tired or washed out, once you come off the steroids, if you have been given them. Taking your anti sickness tablets are prescribed is very necessary and it seems you are all doing this - whether you feel sick or not.
Wig/Hair tips
Wearing your wig out - as I read someone did - before your own hair goes is a brilliant idea. I did so, too and it gave me so much confidence, when the time came.
If you are not cold capping - getting your hair cut as short as possible (I had mine shorn off) before the ‘shedding’ starts (around day 14 post treatment) may help a lot, less headaches/sore scalp.
Washing your wig with the appropriate shampoo, before you start wearing it - will soften it and make it look more natural.
Hugs
Sue x
Thanks, Sue that’s good advice. I’m feeling quite a lot tireder today, though I think that’s more to do with CT anxiety than anything else.
Great to hear it went well, Emma. Robin and Mooney, hope you are both feeling ok on day 2.
Ali
Day 2 and not doing well at all. Can’t keep anything down and have been sick a few times. Am taking the anti sickness and steroids but no idea if they stay down. Trying to drink water but even that is hard. OH has got me some ginger tea. Can’t eat at all. Will ask for emend. Dog looking at me funny as she has never sseen me weeping and vomiting before! Haven’t got out of bed yet.
Anyone else that has had FEC-T. Did you have a tight feeling in chest afterwards? Obviously it makes me worry and then the chest will get tigher!!
No Scotty am afraid I didn’t. what does it say in your booklet of symptoms? Worrying for you which as you say makes it worse! Does it stay where it is or move? Do you have asthma? just thoughts. if it doesn’t improve or gets worse ring the unit. Or an ambulance if you feel really ill.Hope you feel better soon
Hugs and love Mooney xxxxx
Hi Emma,
i had EC on Monday and had a slightly tight chest on Tuesday evening. Agree that the more you think about it, the tighter it gets. I was worried I was having a heart attack/ pulmonary thrombosis but TBH it was midnight and I decided to give it an hour. I fell asleep and it was better in the morning. You could try having a nice long bath and doing some breathing, to see if that helps. But I think if you have any pain, or actual shortness of breath, you should call the numbers you’ve been given and ask for advice.
Sorry not to be able to give definitive advice
Ali x
I’m sure it’s just the anxiety monster rearing its ugly head. I’ll keep an eye on it x
Thanks. Makes a bit more sense and bashes the anxiety monster a bit xx
Should have said I have a picc line
All went well yesterday 1 down and 5 to go. Sorry you’re feeling rough robin I hope they sort you out.
Thankfully I haven’t felt too bad. I was so tired yesterday evening, my treatment was in the afternoon, I thought I’d sleep well but was awake from 2.30am and I’m still awake now! Good luck to all. X
All went well yesterday 1 down and 5 to go. Sorry you’re feeling rough robin I hope they sort you out.
Thankfully I haven’t felt too bad. I was so tired yesterday evening, my treatment was in the afternoon, I thought I’d sleep well but was awake from 2.30am and I’m still awake now! Good luck to all. X