It’s so annoying cos the second time (until the reaction) they’d finally found a cap that fit and I took different pain meds so it wasn’t nearly as uncomfortable. I still don’t quite understand why they’re stopping it (they said with wearing it it means the treatment takes longer but that they’re going to make me take it over a longer period regardless to monitor me after the reaction and the cold cap had nothing to do with the reaction, so I don’t understand what the problem is). They’re the professionals so hey ho, I never want a reaction like that again so I’m not going to argue, and at least I tried.
My hair is thin but I have a lot of it, it’s starting to thin out since treatment and I’m getting more shed. Ugh, not sure I can pull off bald but I got my nhs wig before all this and it pretty much matches what my hair was like (texture and colour), I wanted to get it asap while I still could compare cos I bought a couple of wigs online too and I think the colours of those don’t match so well.
Hope the physical side effects aren’t so bad this time (they’ve put me on different pain meds because they’re too cheap to let me try pegfilgrastrim), so far very different. Hopefully they are better.
Hope you’re feeling better too @sharlou and everyone else.
Nope haven’t thought of a name, although I’ve had two lots of surgery before chemo and although they never say it’s gone I’m acting like it has done one. But Donald Lump did make me laugh.
I’ll be the same, support, strength and enlightenment with tears, screams, fear and gritted determination. And I know everyone says “you’re stronger than you think” 95% of the time I do believe them. X
That’s such a shame! But if it means no more possibility of a bad reaction that’s for the best, although I see your point about why it would impact??
I have bought a couple of wigs but not sure how I feel about wearing them. Haven’t really got a solid plan of what I’ll do if I lose all of my hair…
I seem to be the only one here lucky enough to be having pegfilgrastim. It sickens me that it comes down to finance! Shouldn’t be allowed, if one injection is better for patients they should be allowed it. I think you’re all legends for having to do that daily xx
Re infection. When they postponed my 3rd cycle because of my chemo rash they said it was because if the spots became infectious I would be in danger of getting sepsis. It’s sometimes difficult to grasp how vulnerable we are.
Injections do couple of inches from your belly button and alternate sides go round like a clock 3 - 9- 12 - 6 - 4- 20 etc grab a bit of belly fat, plunge needle in till you hear the click, release it so needle pops back up inside it and your done put in your sharps bin you should have been given used to do mine about 11am daily so can’t say what doing at night would be like you could ring number on here too and speak to a nurse if you never get through to your unit but do ring your rapid response number too that is always manned Shi xx
Check with your teams what your nadir phases will be when your neutrophils are at their lowest it can be different for each of you depending on your cycles Shi xx
I think going into the second dose I will ask and get a better gauge of when I will be more vulnerable. As Ive generally felt alright Ive carried on a bit as normal. First week i did have a food delivery but this week I went to supermarket as normal. I also met with one of my bosses yesterday for a coffee but we sat away from everyone near the door.
Im off work long term sick since this all started in June.
I think as time goes on I will be doing less but my sister gets married in November and I really want to at least do the ceremony and meal. Its something I was really looking forward to so would be really really sad if I cant.
Could I ask where your rash was if you don’t mind? I got a rash under my boobs with some spots spreading down my stomach but they just said it was a heat rash. It may well have been of course but it was out of the ordinary for me so did wonder if it was chemo related
I’ve been off since June too, although I’m thinking of doing some work from home soon as I’m going a bit stir crazy.
My oncologist is very much in the camp of you can still go shopping, you can still meet friends etc, just avoid large crowds and people who are poorly. That said, I haven’t been told when I am most vulnerable before. Again I think clinician preferences come into play a bit. Mine is really pro- positive mental health and she thinks living a life as normal as possible is key to achieving that, whilst obviously remaining infection aware. Other consultants may have more conservative views which is one of the reasons I find this forum so useful as you can hear other points of view Me personally…I would go to the wedding but I totally get that others may think differently. Perhaps discuss with your oncologist to see what their view is? X
On my face - chin, forehead, round nose and neck. None on body. If it’s cleared up by next Tuesday then I’ll have my delayed 3rd cycle but they’re going to drop the dose by 10% - I forgot to ask if that means volume or strength.
Oh what a shame - is it sore? There’s so much to look out for isn’t there. I really hope it improves in time for you to continue your treatment - delays must be tough at an already tough time. X
It’s not sore but quite itchy. They’re like whiteheads. I’ ve looked at pictures on line and don’t think it’s as bad as it could be. I was disappointed they cancelled it on the day (or deferred as they call it) but as the week has gone on I’ve enjoyed the break.
I was on the June chemo group last year but didn’t actually start until September but still kept in touch with the group.
I’m so sorry to hear you are having chemo again. I cold capped as well and kept most of my hair, I think we need to shout it more as it does work for many people if done properly (don’t watch the Amy Dowden prog because you’ll scream at the tv as the put both caps on at once and it wouldn’t touch the top and that is where poor Amy first started loosing her hair, had it be done properly, she may have kept more)
Morning everyone, just to update that I think I’ve turned a corner with the nausea this morning! It’s still there ever so slightly but soooo much better. Feel tired but about 80% myself today, I think I’ll be getting out with the dogs later despite the grey Cumbrian weather.
Just wanted to give a positive update after all of my moany ones
Morning that’s fab news to hear so pleased. Encouraging for us all. Weather awful here aswell …. Enjoy your walk and hope your improvement continues throughout the day x
@galdiolus no tips here but just to say solidarity as I’m feeling like this too! It doesn’t help that my first chemo was delayed as I managed to get a chest infection! (I think that was me trying to do too much before chemo!). When I do go out the paranoia is real. But I have a 3 year old at nursery so there will be plenty of germs in my house! My oncologist switched me from a regime that didn’t have a terrible effect on immunity to one that did & has hammered home the point of this so it’s been helpful to read others different perspectives they’ve been given by their teams. I’m trying to mostly be outside when I get out which is hard in this weather! X
Amazing I’m so pleased for you. Your posts haven’t been moany at all, just been readin thro the past couple days & it’s helped me come to the realisation that round 1 has likely lulled me into a false sense of security! And I’d much rather be realistic about this all! And yes this weather does not help at all does it! I am so paranoid about getting my PICC wet…Im also in the North (north west) went out the other day when we had the most insane heavy rain & ended up trapped under a bridge for over an hour - the rain was so heavy & I only had a flimsy anorak with me!
So good to hear this @naughty_boob - I’ve found there to be really negative messaging, partic from my onc surrounding the cold cap - I have to now have 1.5 hours post infusion & there was a point towards the end of this where I was thinking f**k this, what am I even doing. So it’s great to hear positive stories x
For anyone cold capping. Please see www.coldcap.com the Paxman website for correct fitting and guidance.
Also for everyone book onto the www.lookgoodfeelbetter.co.uk courses, there is a great one for hair and scalp with Jasmin from www.cancerhaircare.co.uk who will also offer personal help if you phone or email them. Look good feel better courses for nail care especially important if you’re on a taxane such as Docetaxel or Paclitaxel. Skin and make up, help with looking better, drawing in eyebrows and you get a fantastic Goodybag.
put in your sharps bin you should have been given 
Me personally…I would go to the wedding but I totally get that others may think differently. Perhaps discuss with your oncologist to see what their view is? X
