Thanks for your kind words Trixielady and pastasmissus. At least my experience first time has given me a better awareness so well prepared for the 9th now. How’s everyone doing on the hair loss. I’ve got a wig but makes my head feel hot and itchy! I’ve just ordered a few bits from hats 4 heads as recommended by someone else. Just wish I could embrace the bald look outside of home! Sending love and strength to everyone xx
DiKat, I’m shaving mine today. Is got so thin it looks terrible now. I’m going to get a mohekan for an hour just to take pics of and have as my Facebook pic. You have to try and have a laugh. I look terrible in hats but not much choice unless I go without. I an going to try and be really brave. Let’s all be brave together xx
Lets shove each other TricieLady. I went for a walk with my partner last night and we decided to pop into the local for a glass of wine and it was really nice. Unexpected. Just made the most of feeling OK x
Jayne1966 I had previously had mine shaved to a no.2 day 17 after chemo. It had started to go patchy so my hubby has just shaved it all off for me. My heads not a bad shape actually and he quite likes it. Yeah you have to see funny side. We both laughed and said who would have thought we would have been doing this 2 months ago! I was diagnosed 14/11 and having chemo first due to lymph nodes affected. Brave the shave ?
Aaagh - hair loss! Nothing really prepares you for it does it? I’m having chemo after a mastectomy so I kind of thought losing my hair wouldn’t be such a huge deal after that. However I’m 2 weeks from my first FEC and some of my hair came out in the shower this morning so the reality of wig/hat/scarf wearing is suddenly hitting me. As I think I posted previously I know it’s only hair but it makes everything so public doesn’t it? Also - most of the wig/hat websites I have looked at show models with perfect skin and make up - which is a mile away from my now spotty and slightly greying appearance!!
Nellie McNelly yes agree about the public thing. I’m fine with family and friends seeing me but don’t want those pitying looks from strangers! Don’t think I’m brave enough to go out without my wig but feel self conscious in that too x
Thanks for the info reddi, really useful and much appreciated ?
Drummerswidow, MaryKamille, Reddi…yes the GCSF injections made me feel headachy and had pelvis&leg pain but was bearable. I had 5 of them but still ended up neutropenic on day 9 so am going to ask consultant if I need more this time. I will play about with different hat styles, like you say at least with it being winter people are less likely to notice and just think you have short hair.
Angelblue, sorry you have had your chemo delayed as well. I thought I would enjoy my weeks delay and try and get myself back to strength but am just stressing instead!! That’s absolutely pants about Universal Credit and not getting help with a mortgage. Things like that annoy the hell out of me. No logic or consistency! Fingers crossed for Monday for you. I see consultant on Monday so will get to discuss all the things that went wrong for me last time and hopefully will get the go ahead for next round on Wednesday xx
Angelblue - you should be looking at applying for a Support for Mortgage Interest Loan. turn2us.org.uk/Benefit-guides/Support-for-Mortgage-Interest/What-is-Support-for-Mortgage-Interest
Hello everyone,
I’ve been following the thread without posting for a while. I’m sorry to hear some of you had rather serious side effects and/or their next chemo postponed. Glad to hear others are doing better.
After ending up in hospital for the first time right after my first chemo (due to a UTI flaming up again), I was advised by the cancer hotline to go back again a week later because my temperature had spiked and I had an odd cough. After much waiting and too many failed attempts to get a cannula into my arm to administer antibiotics, I was found to be neutropenic but didn’t have an infection. Grateful for that.
Went out into town for the first time since my chemo on 21.12. and enjoyed that a lot but got tired in the early afternoon and had to go home and rest. Have been trying to stay active (go out for walks every day, do a bit of gymnastics) and went back on my exercise bike last night plus to a tai chi class this morning. My other half says I may have overdone it a bit - given the ‘excitement’ of the past two weeks.
I’m finding it difficult to pace myself. Want to use the ‘good days’ to get some work done (I’m self-employed and my husband is, too, and my illness has caused us a rather big financial hiccup) but find that I get tired rather quickly. I also feel bad/guilty because I can’t do as much in the house as I used to and my other half has to do more (and he’s been ill with a bad, lingering cold these past 10 days, too).
My hope is that the next cycle will be better. Fingers crossed (for everyone on this forum, too!).
Still waiting for the hair to fall out - sounds odd when I write that. In some ways I want it to be over.
Wishing you all the very best,
xxx
Rapunzel
Hi diktat, the chemo can give your liver a battering and your team will be keeping close eye on this along your journey. Rapunzel ???you have joined the ???gang it’s easy to go whhhhhaaayyyyyyy ???And enjoy the good days, just listen to your body it’ll tell you when to rest. Watch out for burning pee but with no temps ladies, straight onto rapid response line if it happens please no fixing it with cranberry juice, it’ll more than likely be a uti caused by the chemo and will need treating. If any of you start to get tight arms from the chemo, a heat pad on your arm helps and also you can rub a bit of ibuprofen gel on (check with teams about the gel though as this can differ I think from trust to trust) ???
Shi xx
Hi Dikat, just been reading the December thread and just wanted to say that I had exactly the same reaction to my 1st dose of fec down to the neuts of 0.03. However my onc reduced my dose by 20 percent and I am about to have my fourth and final fec on Thursday and have had no further neutropenia and coped much better. There is some tolerance allowed apparently within the dosages as you have to survive the treatment before you can survive the disease and despite the lower dose my lump is rapidly reducing.
A piece of advice I would offer to everyone is that if you have lost much weight during a cycle let your onc know as this determines your dosage and none of us wants to be given more than we need!
Kitkat x
Hi Kitkat18. Thanks for your post, it’s really encouraging to hear that you coped better with the reduced dose and had a positive outcome. Were you giving more GCSF injections and how many cycles did you have before you noticed shrinkage of your lump?
Xx
Hope you’re throat is feeling better angelblue and good luck for tomorrow x
I’ve ordered some of the Life Mel honey to try and boost my immune system this time round. It’s expensive but will try anything to prevent neutropenia again. Any one else tried it or know of anyone that has?
Angelblue, so sorry to hear you have still not been well and not been getting the care/support you had hoped for. Like you I think I would be tempted to pay to see the other consultant. Funny you should say about dizziness, even though I’m 26 days post chemo 1 I still keep getting headaches and feeling dizzy. I’m wondering if it’s mainly to do with anxiety in my case although I am trying to using breathing techniques and meditation. In terms of the care I am receiving. I saw the Onc consultant prior to my pre chemo talk with the nurse. My oncology unit is nurse led. I have to attend 2 days prior to chemo session to have bloods and see a nurse to discuss previous side effects. This time I am seeing the Onc consultant (tomorrow). But this is only because of being hospitalised after first dose. The nurses all seem knowledgable and they work across both the day unit administering the chemo and on the ward to keep up skills for both. Our breast unit is separate but in close proximity to oncology. I don’t think I will have any further contact with breast care unit until chemo is finished but do have an assigned Macmillan nurse who I can contact if needed. Hope this helps xx
Angelblue did you get prescribed Gelclair sachets as well as mouthwash for your throat. I found them helpful.
My regime was Gelclair-1 hour before eating drinking up to 4 times a day
Difflam (mouthwash)-prior to meals 4 times a day and I was also given Nystatin to use following meals 4 times a day as I had thrush too. X
Hi Dikat
It seems that most people do have someone to check in with prior to each chemo. I’m just worried that on alternate chemos I only have blood tests at the GP and thats it. I feel I would want to discuss how I’ve felt during the month re side effects. Apparently it was the oncolgists decision that I would only see him on alternate chemos. Its crazy that at my hospital they don’t have the facility to see a nurse pre each chemo so they can feed back to the oncologist. i’m going to see what I can do about it. Hopefully transfer to the other oncologist!
I wasn’t prescribed gelclair but I have since read about them. If sore throat happens again I;ll definately ask for them! Re headaches and dizzyness…are you on FEC? I am and from searching on the forum I found that some women do tend to suffer with dizzyness on fec but usually around chemo 3/4. I also had headaches about a week post chemo - went on for around 10 days but they’ve cleared. Yes I wonder if the dizzyness is linked to anxiety. I know I’m so stressed and anxious by not feeling I’m getting great care and you must feel anxious after what you’ve been through. Hopefully the next chemo will be better for all of us who’ve not had a great time with this one! xxx
Hello everyone -
this is just a bit of advice for anyone who is still waiting for their hair to come out and who is anxious about that. My hair did start to come out yesterday, and I got rather upset, so I got in touch with my hairdresser today to get the wig sorted (I had been to see him a few weeks ago just to choose the wig and for an initial consultation). He cut my hair really short (to a few milimeters) and then personalized the wig for me. I was feeling really really low this morning but after the hairdresser’s appointment I felt much better. Am very happy with the result - artificial hair, paid for by the NHS, relatively short (which is easier to deal with/look after/transition into and out of). The hairdresser also said that by cutting the hair really short before it sheds more and more, one can prevent the scalp from becoming too tender and itchy. It’s also a good idea from a psychological point of view: gives one a sense of control. I may end up wearing the wig only at certain times and opt for scarves or hats at others - but it’s great to have a choice.
All the best to everyone,
xxx
Rapunzel
(now even more aptly named 