Aww @pat the hair thing sucks. I think I’ve said before but all this would be sooo much easier if we didn’t lose hair. We could just get on with this quietly and not have to announce it to the world. I pootle along thinking no-one really notices I have CANCER (!!!) but yesterday picking up meds for my sons at the pharmacy, with my usual baseball cap, the woman starts talking to me about vaccinations being ready soon and looking at me and nodding… I was at a complete blank and wondered what she was on about but then realised she was talking about ME getting vaccines as I clearly looked like I needed all of them !!! I felt like telling her to ‘f@*k right off’ but clearly didn’t … ha.
You’re not a failure … I second @bettyb24 that we should ban it. We are bloody brilliant just for getting up every day and managing to even have a bit of a laugh at times. You eat that cake (yum, trip to M&S soon!) and tell yourself, even with no hair, you’re still fantastic - as we all are. This won’t last forever… we will have hair again, albeit short, but we will look gorgeous again.
@akioqey glad pax went well. I feel pretty good in week 2, apart from itchy arms … but if this is the pattern, I’m ok with it. Definitely book that trip… something to really look forward to. I’m already mentally thinking about how I ‘start up’ again … and by start up I mean get back to the things I love, like playing netball, rather than start the washing up again!!!
Happy days team… my rain dance has worked… it’s raining down here in Brighton - LOVE IT!!!
xx
@pat glad the first round of docextal wasn’t too bad - hopefully you will sleep better today and get some rest soon.
You’re definitely not a failure - this is tough stuff and you’ve had a lot to cope with. Losing hair is rubbish - probably the worse bit for me so far. I have a wig - worn it 4 times - I wear a baseball hat most of the time when out but when I’m with friends I’m bald . Yes I get looks but I’m beyond caring now. It would be great to do this all quietly. On a positive note I’m going for round 4 of docextal on Thursday and I think my hair is starting to grow - mainly still stubble but baby soft hair too. In essence still bald but it’s a positive sign!!
@bettyb24 i second banning that word! Let’s strut our stuff
@donna_51 on a cruise in November so the biggest dilemma is the hats and wig! But I still can’t wait. Enjoy planning your holiday too!!
@akioqey well done on your first PAX and fabulous to be going to Barcelona - it’s the planning that’s nice. I’ve recently learned about Vinted - new dresses yippee!
As a friend always says - remember to smell the roses- count all those positives including the possum bum hair
Hi everyone … I get the people staring … I just stare back now … almost willing them to say something … they always look away I don’t really care anymore … I only get a bit upset when I see kids staring and looking at my PICC line and I can see they are a bit freaked out … I had a little boy stare today in the park and his gran kept constantly asking if he was ok whilst looking over at me… felt like she expected me to move away to make him feel more comfortable… but my little boy was playing happily so I wasn’t moving anywhere!!
@pat in my experience once I did the big shave I definitely felt better … it’s just hard getting that step done!
I also don’t particularly like the “cancer” caps … I’ve only worn mine once in the house when I was cold! I still haven’t worn my wig either … I don’t like it and I’m really loathe to spend any more money on another cancer item … maybe that’ll change once I go back to work I’m not sure!
So tomorrow I start my first cycle of EC … and after my consent chat with the nurse and hearing everyone’s experiences I am feeling pretty anxious I didn’t realise I’d have to have steroids for a few days after … so that’s even less sleep than usual … yaaayy … plus an injection that I have to do myself!!! Also the nurse does it “manually” through my PICC line rather just been left to drip through … was this the same for everyone else? Well that’s if my PICC line works … I had to have something put in it today to try clear a blockage… so fingers crossed that’s worked as I really don’t fancy a cannula being put in!
I think they always do the EC manually as it’s hard on the veins so they have to check all is ok as its going in. Also they have to flush the line at the same time with some saline through a drip to reduce the risk to the vein. I didn’t have a picc line but I don’t see why it shouldn’t be put through that, not that i know anything about it
I can see that doing the shave may feel good. My hubby has offered to do his as well
Thanks @pat … god it just gets better … hoping my PICC line sorts itself out then
Aww that’s lovely, it may help soften the experience for you… my sister did mine at home … it was so emotional that I’m so glad it was shared with her I hope whatever you decide to do it goes as well as it can
@charlie22 I had my EC manually through my PICC line. It’s fine. Just had a nice natter with the nurse and made the time pass quicker. Try not to worry. I don’t like doing the injections either but if it means no delays with my next session then it’s worth it - that’s how I look at it Good luck!
Managed to get my hands on some of those M&S salted tea cakes today
@wjs … thank you for your reassurance … I think the fact it’s a new chemo and that I’ve had 3 weeks since last treatment I’m getting myself all nervous and worked up again like it’s the first time again… least when I was having weekly it was a constant low level fear
Ahhhh exciting … I hope you enjoyed them as much as I did!! my snack cupboard is desperately in need of restocking … but my partner is on a health kick and I actually do need to curb my greed a bit so didn’t buy anything this week … so am regretting that decision now
@charlie22 im the opposite to you - I finished EC 3 weeks ago and am starting weekly chemo on Thursday this week (paclitaxel) and I’m dreading it. I think it’s the unknown! I had EC through my PICC line and the nurse did it manually each time. The good thing is they have to stay with you when they do it so no waiting around with the machine beeping away. They sit and do it and then off you go. I hope tomorrow goes well for you - be kind to yourself in the days after to let your body recover.
I’m really frustrated today as my oncologist ordered an MRI after my last EC 3 weeks ago to see how the tumour had responded and I found out today that the MRI request had been rejected as they hadn’t put a clinical reason for the MRI on the request. So I’ve waited 3 weeks and now the request will have to go through again. I’m also panicking because I thought the lump felt a lot smaller afew weeks ago and I’ve now convinced myself that it’s grown again and also that I can feel a lump in my other breast. I’m seeing the oncologist tomorrow so will mention it to him but I’m definitely feeling uneasy about it .
Morning @rrey sorry to hear about the cancellation … that must have been hard to hear, especially when you feel worried anyway. Hopefully your oncologist today can maybe rush your appointment through once you’ve met and explained how upset and worried you are and that you need peace of mind? Let us know how you get on … keeping everything crossed for you!
Thanks for the advice… like you the fear of the unknown is striking again… but I like the fact the nurse will be there … based on my experience of reacting with the paclitaxel I was always really anxious when the nurses left the room!!
@rrey that sounds tough. Your brain goes in to overload and imagines everything. Good luck with your appointment today and your MRI gets rearranged quickly. Sending you hugs for some good news x
Good luck for those of you starting new regimes… @charlie22 and @rrey … I cried and cried when I went in for my first pax, almost more than when I started all my treatment but here I am feeling all tickety boo about it all. It is the unknown and the fact that we’ve been doing this for months and we’re exhaused and emotionally completely tapped out. PICC line was used for mine and the nurses just did what they needed to do, I didn’t really notice as I tried to do other things during it all! You can do this - it will be ok. Another one ticked… and closer to this being finished.
Really frustrating about the mri @rrey … it’s unbelievably how they can get it so wrong when they need to get it so right. Hopefully they can speed it up as they know they’ve messed up. As for the lump, no doubt it’s nothing… our brains are frazzled at the moment and we can’t take any more so the rational bit of our brain that tells us things will be ok just doesn’t exist at the moment. I had a bowel cancer screening thing come through a few weeks ago (honestly - someone should update our records to say LEAVE US ALONE FOR A BIT!) and everytime the post came I was absolutely panicking that I was going to get that letter that recalls me… my logical brain was well and truly on holiday !!! All ok though… pheww…
@collywobbles …a cruise, lovely. Are you a cruiser or a virgin? I’ve been watching classic Jane McDonald and Susan Calman cruising (everyone happy, no-one talking about anything awful - tick tick) and I want to go on a cruise… it’s on my ever expanding ‘to do after cancer list’. How exciting.
@pat … definitely shave. I cried over it all but once it’s done, it’s done and then you stop worrying about it. For a few days you get a shock if you bother to look in the mirror but then you move on and chalk it up to ‘cancer sucks’ and remind yourself it will grow back and you’ll have a unique opportunity to try a new short trendy hairstyle!
I’ve just taken my steroids out to remind me to take them tomorrow before I start my Docetaxel. Didn’t realise it was 4 tablets in the morning and 4 in the evening. 8 tablets! Not looking forward to that!
@wjs It seems a lot. I’m dreading it too. My first session is a week today. I think you’re on exactly the same course as me. Are you every three weeks still? You will be fine, we all will be. Who needs sleep? . Sending hugs x
Thanks! Will let you know how I get on. Yes, got 3 sessions to do every 3 weeks. Like all of us switching to new drugs, bit nervous. Hope they don’t need to increase the number injections too - 5 is plenty!
@alig1961 I wouldn’t be surprised if they get increased to 7 as a nurse did say I might need more on Docetaxel (that was when I first got 3). I hope you’re starting to feel a bit more yourself now after all the things you’ve been having to deal with.x
@wjs.
I’m feeling a lot better thank you. The whole of my digestive system took a battering, from my mouth right down to my arse. I have tablets and ointments galore.
Hi both. I am on the same as you two and had my first Docetaxel on Monday so first steroids on Sunday. I only slept for 2 hours on Sunday night The chemo nurse told me to take the second lot of tablets no later than 12 noon. I did that yesterday and slept better last night. She said they don’t have to be spaced evenly in the day. I’ve had 7 injections all the way through. First one today
Did everyone else have an MRI after their first type of chemo? I’ve had 3 rounds of EC and am moving on to 9 rounds of paclitaxel. My oncologist told me that he requested an MRI 3 weeks ago to check how the tumour had responded to the EC, but the MRI dept knocked the request back and said they won’t scan me until I have completely finished chemo. I have read of others having scans mid way through and was really hoping for a scan to make sure it’s going in the right direction. Not sure what to think x
. Yes I get looks but I’m beyond caring now. It would be great to do this all quietly. On a positive note I’m going for round 4 of docextal on Thursday and I think my hair is starting to grow - mainly still stubble but baby soft hair too. In essence still bald but it’s a positive sign!!
I don’t really care anymore … I only get a bit upset when I see kids staring and looking at my PICC line and I can see they are a bit freaked out … I had a little boy stare today in the park and his gran kept constantly asking if he was ok whilst looking over at me… felt like she expected me to move away to make him feel more comfortable… but my little boy was playing happily so I wasn’t moving anywhere!! 
I didn’t realise I’d have to have steroids for a few days after … so that’s even less sleep than usual … yaaayy 
… plus an injection that I have to do myself!!! 
Also the nurse does it “manually” through my PICC line rather just been left to drip through … was this the same for everyone else? Well that’s if my PICC line works … I had to have something put in it today to try clear a blockage… so fingers crossed that’s worked as I really don’t fancy a cannula being put in! 
I hope whatever you decide to do it goes as well as it can 
Good luck!
my snack cupboard is desperately in need of restocking … but my partner is on a health kick 
x
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