Hi Linda, I’m not on Facebook so don’t know anything about a coldcappers group on there. You can pm me on here by clicking on my name though. I had long curly hair prior to starting and also had trouble getting a comb through it so I can understand your pain ? Mine did get a bit matted after fec 2 even though it was short and I used to both look forward to and dread my weekly hair wash. I used to leave the conditioner in after treatment for a full week and it was horrible by the end of the week. However, if your hair is long I think I would wash it out when you get home and comb it very gently with a wide toothed comb. You could also ask your chemo unit what to put on it to get rid of the matting. I developed really bad cradle cap by my last chemo and they were really good with providing advice.
@Leanne17 well done in the pub!! I picked up my wig today - it’s sitting pretty on a stand because atm I’m preferring just to be bald. Soooo cold though I am still going to bed with a hot water bottle!!
I’m on antibiotics now, have inflammation and redness in my reconstruction and pain in my shoulder/arm. They don’t seem too worried but I’m seeing surgeon next week - it’s a never ending rollercoaster isn’t it!
@leanne17 is this the McMillan grant you got - says it’s means tested? macmillan.org.uk/information-and-support/organising/benefits-and-financial-support/benefits-and-your-rights/macmillan-grants.html
Hi all,
So first chemo was on Friday. Not a great day as got delayed with a new computer system installed on a Friday of a bank holiday, staff shortages and then the cold cap machine was busy! Finally got onto that and actually not as bad as expected except I ended up on it for 5 hours…that’s another story. Ended up a late night with two nurses and the oncologist staying with just me in the unit! With the cold cap you just need to drift off for the first 10-15 minutes to a good place…all of my travels for me! Then it seems to level out and you’re numb. Will certainly give it another go and see if my hair drops out or not. My trauma was that my veins kept on collapsing so the cannula was awful. Finally got one in but I now have to choose a pic line of port. Will be better in the long run I suppose anyway with many hospital sessions to come.
came home with frozen hair and a low temp so worried till early hours in the morning that I would be heading back to A&E but eventually warmed up and got some sleep.
Days 2 and 3 have been ok surprisingly…tempting fate for the next few days. Have been drinking hot water with ginger, ginger biscuits, ginger sweets etc…luckily I love ginger! We’ve made smoothies, and eaten pretty well considering. A teaspoon or two of Manuka honey is being tolerated for the sake of my immune system. Been for a couple of walks so doing ok. Had Emend from the start luckily so no sickness, just a bit tired particularly in the afternoon for a couple of hours. Sleeping ok but wake early. The steroid effect might be there so expecting days going forward not to be so good. I felt I deserved a couple of good says after the chemo experience.
I hope everyone is doing well this weekend and feeling ok or finding things that help you.
The support and help is great on this thread. I hope to be able to help everyone else too.
thanks
Tropic_al xx
No the grant wasn’t means tested. Didn’t have to give any income details. Ask at your chemo unit if they have a benefit advisor. I didn’t fill the form in so not sure exactly but know it was McMillan grant. X
Morning all,
Day 13 post 1st FEC, I have had a lovely weekend doing ‘normal’ things and feeling so much better. I am going into work for the rest of this week to enjoy zero hospital appointments before chemo number 2 next week.
I am sorry @tropic you didn’t have a good 1st treatment, your day sounds like a nightmare but you got through it and hopefully you have had minimal side effects over the weekend.
Thanks @Linda, I have ordered a silk pillow case.i persevered with the cold cap and no loss yet but it is early days for me.
Hope us ladies have a better week, keep in touch, we are all here for each other xx
Well done Sarah even though you had to endure treatment on both bank holidays in May!
I Went back to work today and although it was lovely to feel I was contributing again and able to forget about chemo, I feel exhausted. Still thinking I can just pick up where I left off. Early night for me.
Hope all doing well xx
Hi all
Linda - how’s your hair?
Hets67- has the infection cleared?
Those of us that are cold capping - how are you doing ? I’ve limited to washing twice a week, instead of every other day, it just looks awful. Silk pillow - my children now all want one as they really like it!
Day 7 which means 1 week ticked off ?. I’ve done ok until today- bit of nausea but sorted with meds, I’m looking like a teenager with spots?. More energy than before my masectomy 6 weeks ago. However today picc line was really painful. Was sent to a and e for a Doppler ultra sound- still not had but what an awful experience. As week 2 mentioned I was low immunity- was told you won’t get any special treatment- didn’’t want, just not put in place of others with infections. The same nurse wanted to take my blood pressure- explained couldn’t take on right as risk of lymphodema after surgery and the left was really really painful. So she took on my legover my jeans and wrote down ‘283/180’!!! Really! I then had to sit outside on a bench for 2 hours- there was so much coughing and people committing didn’t want to risk staying inside . Eventually went in and the nurses were lovely but concerned I was so cold- wrapped me into n blankets and gave me lots of tea. Need to go back tomorrow for this Doppler thing. Just felt like crying. Don’t thunk I want to go back ever again. Anyone got tips on what to do during low immunity if need to go to a and e?
When I look through the threads - makes me realise we are doing amazingly. Take care xx
@JemPD, sounds like a horrible experience and I totally understand, it’s not about wanting special treatment just wanting to protect ourselves whilst immunity is low.
I had such a good day being in work yesterday then out of the blue developed UTI symptoms at 6pm which worsened over the course of 2 hours, I contacted my cancer centre helpline who said i had to go to out of hours for antibiotics. I sat in that waiting room for 30 mins with others coughing etc and felt quite vulnerable. I am now on antibiotics and already feeling better this morning.
We just don’t know what we are going to be faced with until it happens but we are all here for each other.
I could capped on my first FEC and I am day 14 today with no shedding yet.
@jemPD. You poor thing. Hope u have a better experience at the hospital today and you feel better soon. Xxx
Had bloods yesterday ready for my 2nd chemo cycle tomorrow. My friend booked the day off work to take me then took me out for lunch. Had a lovely day but gosh the wig is annoying and warm in this wether. Popped into maggies. If anyone has 1 local I recommend going. So many people with help and advise. Booked in to get my wig trimmed next week and booked onto the loom good feel better day where you get help and tips with makeup etc and get a freee goody bag of makeup worth over £200.
Then had a lovely evening with my fiancé driving around the gower and going for food again. Can’t belive how well I’ve been I’m just hoping I’m the same after cycle 2 tomorrow.
Well done everyone cold capping and keeping your hair. Strong ladies!!!
Xx
@leanne17 good luck tomorrow.
I had my second at Singleton on Monday and found the wooziness a bit more intense for the first day than it was with the first chemo, but that’s settled now and it’s just exhaustion.
I’m alsk booked on to the Look good feel Good course on 5th June so will probably see you there!
Sarah x
Thanks Sarah!! I’m going for the look good day on the 19th xx
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Looks like on the whole everyone doing really well!!! I’m at end of week 3 - it wasn’t the euphoric week I was hoping for - v tired - but my week 2 was better than I hoped so can’t hsve it all. Cycle 2 tomorrow. @leanne my wig is still sitting on the side - I prefer to go out bald or with a silk or wool cap if it’s hot/cold. @jemPD I really don’t think it was an infection. I’ve been taking the antibiotics but my reconstruction still swollen /red and sore in my shoulder and ribs. Will be good to see surgeon on Friday and allay all the fears I’ve managed to construct in my head!!! I wish the sun would come out again - this chilly weather isn’t fun with a bald head - can you imagine doing this in January! ???
Oh thought I would add I went to bobby brown for a make up lesson just before I started chemo. Arranged by my daughter and 3 friends - for the first time in my 51 years I was actually shown how to do makeup which has come into its own since I lost my hair. It’s not free like the pampering event which I am also going to go to but I’m really glad I did it £30 which then goes towards £30 of product but their stuff isn’t cheap - in the end I think it cost £100 but lots of product for that which I think will last months
@Jempd had to cut the tangled mass out and cut hair short. Pleased with my new look though.
Having probs going to the toilet and not sleeping so had a nap this afternoon. Am taking Senna and eating lots of fruit including prunes but am in pain although got some cream to put on.
My second chemo is on Friday and for the last two days my hair is falling out fast, I have probably lost half of it now, I never cold capped. My scalp is really sore like sunburn has any one else experienced this. I thought I was prepared for my hair loss but it’s quite traumatic to be honest but I have plenty of hats and scarves at the ready plus a blond Raquel Welch wig ( my own hair is dark brown ) so time to experiment with my new look x hope everyone is doing ok
@tanya. Yes my head was very sore when I started to lose my hair. Mine all came out last Friday 2 weeks after 1st chemo. It felt like when you’ve had a bobble in too tight at top of head and makes head painful. It started Wednesday and I had very thick dark hair. By Friday morning was hardly anything left so shaved it grade 0 and have been wearing my new wig or going bald or wearing head scarf depending on how I feel. The soreness went as soon as I shaved it. I though I was prepared but it is quite upsetting but totally fine with it now!! Xx
Hi all,
so sorry some of you have not had a great few days…and great to see others are coping really well and moving forward. It’s a rough ride isn’t it?
After my traumatic Friday I felt much better over the weekend, thank goodness. Yesterday was great and I even worked for a while from home to feel ‘normal’. Still, only a couple of hours later and I felt tired. Have no energy for my hour or so drive to work. Luckily work are amazing about how/if/when I work. Good to focus on something else for a while. Managed my usual short walk etc.
Today is day 7 and woke up feeling less than special…headache, straight on the ginger, tired. Time for a down day. I start the antibiotics tomorrow so hoping any more symptoms hold off and trying not to take any more anti-sickness If possible.
Early days on cycle one so just noting down how I feel each day. No hair shedding yet of course but tried the cold cap and will again if the hair doesn’t all fall out. Have a silk pillow…very nice. My hair is dry and thick so don’t need to wash it often but it looks grim and could get matted easily so will have to try soon!
I think all of you are amazing and are handling it all so well…I’m trying to do the same. It just seems like such a long road at the moment and it really has been a long 7 days. Hoping to do some fun things towards the end of the cycle and more next time once I know how I respond.
Waiting for a port appointment but hoping it is the week after next because of the low immune system…so stressful to have to sit in waiting rooms with germs when feeling so low.
i don’t know how you all managed to get on the Look good feel better classes so quickly…I’m struggling to book for September by which time I’ll have had bad makeup for months! ?
Stay well ladies. hope you have a good day,
Amazing support on here
@Tropic X