What about steroids - do you think they could increase them slightly or perhaps increase the duration, just to give you a bit of a boost?
Did you make it to the Look Good Feel Better session? How was it?
I know there is a local charity near me that provides services for cancer patients - aromatherapy, massage, that kind of thing. It might be worth looking to see if there is something like that near you? Mine has leaflets in the hospital chemo unit.
I know it doesn’t feel like much consolation when you have lost your eyelashes but I have read that when they do come back they can be better than they were before.
It does feel like such a long haul, but every day down is a day nearer the end. I am looking at booking a holiday for when this is all over - give me something to plan and look forward to. Could you book some treats to get you through the next couple of months? You have more of this behind you than you do in front now, and you can do this. You have come so far. Please hang in there, and vent whenever you need to.
Hi Lovely Emm,
Thanks for posting those kind words it really does help.
I did get to the looking good session & picked up some good tips & was nice to be around others in same boat. I know its negitive but no matter how i look at it the thought of going back to work in a wig etc fills me dread … I know, I know should be thankful …
There are lots of lovely healing alternative therapies support stuff in my area & have got things booked for my better days… soooo looking forward to feeling betterm
Also booking a summer holiday as so need something to look forward with husband & boys when this ends.
Will ask re steroids but they don’t make much difference to how I feel. Think my biology very sensitive to the drugs unlucky I guess.
Anyway I know it will pass & your right we are more than half way.
Have you tried the Headstrong service if there is one near you?
You could try out all kinds of headcoverings and maybe find one that really suits you! :catvery-happy:
I only mentioned the steroids as I know that when they reduced my dose they upped the amount of steroids I receive on the treatment day, and I have felt so much better than I did for the first 2 cycles.
I’m pleased you have some nice things booked and really hope they do you good. I thinks it’s very hard to be thankful for anything when in this position. Maybe with hindsight we will be but certainly for me not while I’m in it.
Hi Caroline I agree with you over all the hair loss bits strange looking in the mirror for sure ! But hey I am back at work between treatment and rest days and wearing wig ! First day but strange and you think everyone looking at you but to be honest very few noticed which is good now just go with head high and confidence and I think wig is much better than my fryer tuck look underneath !
You can do it get my lovely get over first day and the rest ok xx get some fake lashes On I got some thin ones brilliant and go for it!
Just remember yes this is hard and horrible but only temporary we will all soon be those beautiful swans soon and as most hv said everything grows back more luscious so there is a benefit xx
Glad you go lots to look forward to keep focused on that and the fact this will also soon be over xxx
Re the hair loss thing. I was really dreading it as I have always had long hair. I had my first cycle FEC on 19th Dec and almost two weeks later on 1st Jan, my hair started to fall out big time, 5 days later it was almost all gone, I had huge great bald patches and stupid long wispy bits so I had the rest shaved and decided that the worst had happened and I know longer had anything to dread.
I thought I looked better with a bald head, scarf or hat than with a wig, but I got one for work because I am a nurse and most of my patients have cancer too, and they can’t know what’s going on with me because it turns into endless questions about me instead of being about them, plus they have a totally different type of cancer with a different treatment pathway and their chemo does not result in hair loss so I do not want them assuming that they will end up like me.
So I have to wear the damn wig for work, And I absolutely hate it. I try to look upon it as part of the uniform, but it IS hard. I had endless comments from people, because I work in a large hospital - they mean well but I wish they wouldn’t make comments about my appearance. It’s not that they necessarily notice it’s a wig, but just general comments “oh, have you coloured your hair?” " oh, look at your lovely hair" " oh you look so different, I didn’t recognise you!" “Oh, is it easier to look after like that?” etc etc when all I want to do is blend in and do my job.
Now I’m fed up, although I initially thought my head was quite cute, I miss my hair and keep looking at photos of me with hair. My eyelashes are almost gone and my eyebrows really thin now. I am due my 4th cycle FEC tomorrow and dreading it, that horrible taste and the nausea and feeling like crap for the next 10 days or so.
I think cancer sucks and I’ve totally lost my sense of humour about any of it!
There, <end rant>
The hair loss isn’t fun - when I think back now to how devastated I was as it was coming out in handfuls I’m surprised I didn’t just give up then.
But now I am actually quite relieved - most days I don’t think I could stand up in the shower long enough to wash it as my hair was long and curly before. I’m hoping that it comes back as a blond afro.
At the moment when people ask me about it I tell them I look like the love-child of Uncle Fester and the Golden Child.
It isnt’t easy when you catch yourself in the mirror and thing ‘oh 888 cancer patient’ and it doesn’t look or feel like you. Then you look again an do feel like that. It scares me silly sometimes.
I went to a great celebration party the other night with great headgreat and full strong sparklyl makeup and I looked great. This morning I woke with an allergic eye reacton and a headache and looked in the mirror and I nearly doubletaked. I looked so different it scared me. I was a wreck.
Mind you - I dragged myself to hosutal and had my first Taxol and herceptin now I am done with AC. it was fine. Just the same but longer. no reaction. I kept closing my eyes in the car on the home but feel totally fine. This time the Taxol took 2 hours and the Herceptin 1.5 but from net time the herceptin will be half an hour - they gave me a boost start. No waiting in between. No reaction. I feel so much better about it now.
There is a lot of up and down with the feelings. Its normal. Some days I can’t stop crying and thinking how awful I feel and some I feel totally normal. You are all doing so briliiantly. We need to rant. don’t worry about doing it. Crumblinginside is normal. I don’t think anyone doesn’t do it sometimes. as for the hairloss. I found shaving the best thing and am so glad i did. I never tried to keep it - just assumed it would be gone and I get t back later. its one less thing to stress over. I am not strong enough to deal with that too .
Hi Caroline so pleased to hear you are coming out of that black hole! Only two go more than half way eh!
I am the same as you left side mx and yes sometimes get pins and needles there so just ensure keep moving I had operation November but now sometimes get Latinos over right one is there lumps dies that hurt oh so many things eh !
Well I am day three if heceptine that was ok after all yipee and day two of tax and the sickness not as bad as fec so pleased as that was making scar hurt keep being sick xx
I use coconut oil on scar basically everywhere else so good for you and healing process of scar very good and much cheaper than bio oil also was reading up research still taking place over bio oil and being able to tell difference between good and bad cells for re growth I am so paranoid just using natural products at moment lol xxx
Now like you praying for hair growth please!!’ And no more falling out as have my brothers wedding in august and do not want to wear wig really but also do not want to look like a seaside skin head lol xx
Oh the decisions we hv to face eh xx still I look like I have a nice facial tan today quite flushed but hey can handle that more than sickness.
Have a good day and come back up onto the ledge and see the future view rather than down there is that dark hole.
Hi Caroline well get up here on the wedding ledge I hv a glass of champagne waiting for you lol and we can pray together for a miracle fast hair growth lol
Just think we are closer to the end then the start so that is good news eh xx
Very cold and wet down here in the south easy so a good duvet movie day for sure xx
Considering I am only 2 days after treatment I can’t say I feel too bad. Bit nauseous but the pills are helping with that. Some things taste a bit odd but I find orange juice helpful.
I had a lot of trouble with my scar last month - it had settled really well since the op (Oct) but after my last treatment it was very purple and angry looking. Seems ok this time apart from some pain every now and again. I am using almond oil - Neals Yard one from John Lewis.
I just found out my health insurance will cover MLD for my lymphedema, so I’m going to try to sort that out today. Would be lovely if my arm felt a bit better.
Talking of insurance - please eveyone, check your life insurance policites in case you took out critical illness because we did - and we are now mortgage free - silver lining and all that.
I had my first Taxol and herceptin and it was fine. My fingers are hurting though - super dry and feels like tiny cuts although nothing to see - this is going to be interesting!
Caroline - I have also had more twinges/pain in the scars since starting chemo, mostly they come and go but on one day recently at work it was quite painful for about two hours and I had to take some paracetamol. I think that there is a degree of fluid collection beneath every incision but in my case I had a collection that was reasonably large, and as it has been slowly re absorbing the tissues pull together and everything reduces and that’s what causes these sensations, I gather it is quite normal.
On the subject of side effects though, has anyone on FEC noticed fluctuations in body temp, I mean suddenly going from hot to cold and back again quite rapidly, it’s driving me mad at the moment. It is listed as a common side effect of epirubicin as a sudden feeling of warmth and sudden outbreaks of sweating, but I don’t know if it is that or if it is hormonal as I haven’t had a period for almost 8 weeks now since starting chemo. (Always very regular previously). It makes it even more difficult to sleep as one minute I’m throwing the quilt off and the next minute I’m freezing, and yet my temperature on the thermometer remains normal. Just wondered if anyone else gets that.
Thanks for the tip about carrots and celery - bit tricky raw at the moment as I have cracked a tooth and of course can’t have any dental treatment until all this is over, but I can still taste steamed carrots. I’ve also discovered that grapes, cheese, melon, and roast potatoes seem to cut through the gluey taste, but unfortunately not wine
On a more upbeat note though (coz I feel as if I’m just moaning about everything at the moment!) once I’ve got through this last lot, only 2 more to go, yay!! Apart from wanting to see signs of hair growth again, I am really looking forward to getting this PICC line out and being able to submerge myself in a bath, without holding my hand up out of the water as if I’m the only pupil in the class with the right answer.
Oh thanks - reassuring to know the hot/cold thing is normal. It’s every five blooming minutes at the moment, and definitely worse or at least more noticeable at night. They don’t mention about that or ask about that when I go for my chemo.
Hi Tom cat I have just had the same treatment as you last week and was so pleased do just hv the sickness like I had with fec but then three days after tax the bone pains kicked in exactly the same as you feel like I hv been run over ! Did not get out if bed today and could not bear any clothes on body either was all hurting so much but they do say this is the Se of tax so only two more to go hopefully by weekend this will hv worn off as walking around like I am 100 ! Xx
