Hi Tracy yes Im at velindre too they are amazing there. I work in Llanishen but unfortunately not allowed at the moment due to risk of infection. Hope you are doing ok ❤️
Had an ultrasound today and she said it looks like its fragmenting so good news but they will discuss at the MDT meeting. Also went to the docs who can't see anything but has given me cream to use as it may take 8 weeks for the pain to go and I also have some constipation powder to use when I have my third chemo. So a good day and went to work before docs and again after ultrasound. The doc said it could be a small tear due to constipation. I also have a rash under my breasts and underneath them which is slight but doc said nothing to worry about. I think its a heat rash.
Thanks for your post as it makes me realise I have to get out more and function normally as have also felt mainly well so far..on day 11 so feel very lucky. I have just really kept myself away but can't do that for the next few months or I'll drive myself mad! Have been avoiding gardening due to infections but will get the gloves on and weed today! Also trying to walk each day and definitely one today as cooler. You've inspired me to get out 😊 Have difflam but not great with mouthwashes and spit out too early...will keep trying. Going to do some work today.
Doing the cold cap but waiting for hair to start to shed everywhere, especially where the cap doesn't reach on the head. You sound like you're rocking your new look Melissa..I hope it continues this way too for you.
Morning all 😁
Its round 2 of FEC for me today. Hoping this round will be as kind on me as the last. My main symptom was Very sore mouth which didn't come until week 3. It started Bank Holiday Monday until Friday. I also used Difflam which seems really good and would recommend every gets in readiness! On the same Monday my hair really started to fall out in handfuls so on Thursday I had a number 3 all over. Although grey as a badger now I really like it and it's so much nicer not having loads of hair coming out in my hands. I'm sleeping on a silk pillowcase which is lovely. I had really thick hair so although I've lost about 50% and more on my parting, I've still got a really good covering and so have been out and about with my crew cut. Apart from the mouth ulcers I feel as though the last 3 weeks I have been able to function pretty much as normal. Couple of days at work in week 3, lovely weekend away in London, power walk every day, socialising with friends and lots of gardening. I know this won't continue but I'm truly grateful for being eased in gently!
It seems as though generally we've all been very lucky with symptoms so far, let's hope this continues!
Take care everyone, Melissa x
just catching up on the thread. I think you're all amazing. Thanks for the positive vibes Shi.
Have felt OK over the weekend although sad not to be doing my usual things in the garden out in the sun and heat. Secretly glad it's going to be cooler tomorrow. Still hiding away a bit which is unlike me, but hoping to emerge more by the end of next week as the immune system hopefully picks up. Next month will make more of an effort on the good days.
The sore mouth has been my main problem and think I took my first fluconazole too late. Note to self for next time. Might speak to the nurses if it doesn't get better to ask for more.
I too feel like I am rattling. The first week is definitely the most complicated so also have a table of what and when to help with chemo brain down the line 😊. I am in fec. The injection bit is fine really.
Thanks for for the advice on the make up. I'm in East Anglia so will call Boots perhaps in Cambridge to see if I can go sometime. I'm useless at the best of times so need all the help I can get!
@jempd hope you are doing ok now ❤️
We we can do this!
Nite all. Going for a bit of normality and will work for a while tomorrow.
Not your fault at all...all mine! I need to have a positive day tomorrow 😊. I have a nutribullet and make smoothies every day. Mainly to hide the Manuka honey in as don't really like it 😊. Ginger is the best thing to have in...just freeze chunks in foil then you can use it whenever you need it. I'm struggling to think what to eat every day so any ideas from anyone welcome..especially lunches...love curries and spicy food but that just has to be every so often perhaps with the T part when food has less taste apparently. Enjoy your new nutribullet..you're doing brilliantly! X
ive had a similar negative down day, so you are not alone @Joandbasil. I've become scared of going anywhere which I won't let happen to me throughout this whole process or it is going to be impossible and I've also been turning people down but must change that. Difficult to focus sometimes I know too. I don't know where today has gone but it has been dull and I've achieved nothing! Hope you feel better tomorrow. Xx
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
@Ttraceymac glad the headaches are gone.
I've just had my second chemo yesterday - two bank holidays in a row, but a third of the way through!!!
The wooziness was more intense after with the second one, but this time I had Emend so no vomitting.
I'm not cold capping, and have lost probably 50% of my hair in the last week.
However, it's falling out really evenly, no bald patches, so I'm not going for the shave, as it still looks okay under a scarf.
Hoping side effects are minimal for everyone!
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 for the tips. Am using olive oil to get it out slowly. Spent the morning at the hairdressers and hoping to sort the rest soon. Thinking about cutting my hair short as its to my chin. I have been using a silk pillow and a Silke and an aero comb but it's still got matted badly. Hoping it will look ok when its all out but time will tell. Hairdressers were really good and having charged me although I offered.
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.