Thank you @Guida . It’s frustrating when things change but as they keep telling me best to to the right thing first time even if it takes a little longer to get there.
I’ll be glad on Wednesday when it’s removed, one job done, then heal and onto the next.
Hi @Jess_ I agree with @Guida the pilates posted was good, but I do love Yoga with Adriene. I try to do her daily yoga and every January for the past few years her month long journey. youtube.com/user/yogawithadriene
You can sign up for her monthly calendar or dip in and out.
Hi @Beeza66
Thanks for your post. I haven’t started chemotherapy yet but still comment on here as I’ve had so much fantastic support.
You were so right to ask the BC nurse to show your consultant and avoid surgery. You would have thought the junior doctor would have tried to contact your consultant. I’m not having a go at them but they are not experts in this area. It’s a lesson for us all if we go to A&E.
I’ll be thinking of you on Monday. You and your oncologist will work out what is best for you.
Hope you’re starting to feel better after your second treatment @Jess_
@naughty boob @Guida I like the sound of the pilates exercises, particularly if there are any specifically for our situation. I also love doing some YouTube yoga, but I prefer SarahBethYoga so would recommend that for anyone who doesn’t gel with Adriene.
I’m going for a wig fitting tomorrow so I have an option for if/when I lose my hair. Any tips or recommendations? Then my next cycle starts 10th, and I’ll be sure to ask for stronger anti nausea meds this time!
Hope everyone is well.
chemo certainly isn’t a straight line. I had to switch drug due to allergy to Abraxane and my hospital doesn’t allow cold cap with the new drug. That was a blow but more about something I could control. Less good news!
My liver count was high. But more water and new drug, its back down again. Good news!
I mentioned a sore patch on my left heel. Just to watch infection. Referred to skin cancer doctor who said its inconclusive, but he’ll start on basis of melanoma. So biopsy on heel (ouch) next week.
Quite a week but I guess this is the reality!
x
sorry you had reaction to Abraxane but good news your liver counts down again ? hang onto the little victories ? they do matter keep focused, keep ticking off one treatment at a time you’ve got this ??
Shi xx
Hi everyone. I hope the highs have been better than the lows this week and that you’re getting good rest and care.
I’ve had a some really good moments, spending time with friends, working part time and even getting to watch a bit of Wimbledon! Sunshine makes everything seem better.
On the down side….Scalp is sensitive and hair is thinning rapidly. Lack of sleep and fatigue a pain- anyone got any tips about scalp care that doesn’t pull more hair out, getting a good night’s rest and when to try to sleep when fatigued? Had to give up Insight timer once you have to pay.
I used to do Adriene’s yoga, and another lady. Is Adriene the one with Benji the dog? Both Yoga and Pilates are great for mental and physical health. The breathing techniques an d I d body connection calm the body down and switch two parts of the brain, (the parts that do the thinking and feeling), back on if they’ve been switched off by anxiety etc.
I was reminded about some amazing work done by a renowned Trauma Recovery Specialist, author and Psychotherapist, Betsy De Thierry. She helps anyone going through traumatic experiences. She particularly works with children, so any Mums here who are facing the added load of navigating your families through this cancer journey may find the short videos here helpful in using some practical techniques in helping them to stay calm and emotionally healthy. The techniques are also relevant for us adults. Some of them seem very simple. However, they are proven from a Neuro Science stance to work.
youtube.com/watch?v=aSD-8WMLrM0
Brain exercises for children (and adults!) -2 mins
youtube.com/watch?v=tEmt1Znux58
Box breathing -3 mins
youtube.com/watch?v=RhqwKKbCkRA
Help children to feel calm -7 mins
youtube.com/watch?v=4_bGLqXZnbA
Trauma, what am I feeling and what can I do about it **EXCELLENT for children and adults** 17 mins
@Beeza66 I do remember you. What a rocky journey you’ve been on. Thanks for your prayers. I’m praying for you and for everyone here. I hope things stay on an even keel for you now and that things keep looking up for you. You’re amazing and will inspire so many others.
@naughty boob How are you doing after surgery? Hope you’re healing well.
@rachel60 I hope all the adjustments to the new chemo are manageable. It must be a loss not being able to do the scalp cooling now. Well done for navigating it and getting through the unexpected twists and turns.
Sending much love to everyone. xxxx
Hi @Geo23
pleased you are doing ok! The scalp is a problem. I do now have a silk pillowcase which is much kinder. I brush my hair with a manta brush designed to be gentle. I tend to put my hand near the roots to make sure I don’t tug and then brush - i do shed but its dead hair so better gone than matting but its not easy. I also use gentle shampoo and rub rather than scrub leaving scalp alone. To make sure its clean I get a cup, put some shampoo in and the run that through my hair from scalp to ends. It seems to help.
hope that helps.
sleep is a big pain. I try everything and if necessary get up and do some yoga.
will check out Betsy De Thierry. Sounds interesting. There is a book I just read called the Expectation Effect by David Robson. Its interesting and science based which I liked.
take care and hope your week continues well! X
Hi @rachel60 @Thank you for the tips. I hope you’re doing well? I’ll look into a manta brush, I’d not heard of that. I’ll try putting my hand near roots to prevent pulling. I’ll look up the David Robson book. I have a silk bonnet I’m sleeping with at night. I think it’s helping. Seems to prevent knots that cause big clumps to come out. Hope you’ve got something to look forward to going on over the weekend. Take care xxxx
Dear @rachel60 you poor thing not able to use cold cap. Well the silk pillows and silk caps and the manta brush are all top tips regarding well-being for hair loss.
hi @Geo23 - you’re doing brilliantly!
So I still have my breast rash but think it’s Telangiectatic Púrpura after my axillary dissection. This is a vascular problem and is much better when I lie down and gets worse when I stand up and walk ! I think the blood vessels are obstructed due to coagulated lymph fluid or scarring. Nightmare. So I’m trying to rest and lie down but really need to watch some gentle stretches or Pilates so thanks for putting them online to access. I’ve also got AWS (axillary web syndrome) which is incredibly painful. All this before chemo !! My oncologist has postponed my chemotherapy to 2nd August now so I’m miles behind you all. But reading your threads is really helping me prepare and you’re all so strong !!
Everyone is telling me I look well - maybe as I’ve stopped working and am relaxing more - but do they expect me to look ill?? Maybe I will when I start chemotherapy.
Had my surgery this week and chemotherapy will be in August so will see you on the August thread. Like you this thread had helped me understand what may and may not happen and how to deal with it.
Like you most people keep saying you look so well, I had my hair cut short last week as I was due chemotherapy first then surgery before the plan changed again, I had so many compliments. People don’t understand I didn’t really choose to have it cut short it was a necessity of impeding chemo. I know they only mean well.
I hope your breast rash and AWS improves soon, it’s you’ve been through the mill. This cancer thing is not straight forward is it?
Hi @Beeza66 ,
Have you been able to see an Oncology Physio? I was referred to one and she gave me some simple manipulation techniques and stretches to do. The AWS soon sent away after I did those. I don’t know whether the rash you’re experiencing would inhibit you from doing that??? I hope all dies down very very soon for you. Take care
@naughty boob were you able to have your surgery last week? Sending love
Hi @Geo23 and @naughty boob
Thank you for your kind messages. I’ve been seeing a physiotherapist for 5 weeks now (10 mins a week) and although she has popped quite a few “cords” in my arm (absolute agony I may add) I have a very thick huge cord from my armpit to mid arm. The physio said she doesn’t think the surgeon will “cut” it but said she can’t see how I can get rid of it. She said slim women seem to suffer worst. I must say - maybe after not exercising during my week in hospital but I really appear to have it much worse now. It’s almost going to my wrist and even to pick up something from the floor or reach to get something is incredibly painful. There’s a shop near where I live that does deep tissue massage may ask if they can help? I’ve used up all my free physio session now so if I want more I will have to pay. It is very painful to do the exercises despite taking painkillers.
The rash is showing more patches of skin every day and I’m finding if I lie down it gets better. Difficult as I want to meet up with friends before I start chemo.
@naughty boob we can be on august thread. When do you start ?? I can’t believe I’m going through so much and still have to get through chemo !
We pink ladies are fab and strong!
@Beeza66 It all sounds a tough journey and not having been through the op phase, i can only send you love and healing. As @Geo23 said, cancer is not straightforward. But we are an amazing group determined to do our best.
i took a photo of the top of my head and its got a large bald spot. Not ready to shave it so going a bit Trump like for now! I had a little cry and then thought of best ways to deal with this so I put a bright prink scarf round by neck, went for a walk and sang at the top of my voice and danced around a small park. So now neighbours must be thinking who is that balding strange woman who sings and dances. But they may not be thinking has she got cancer.
take care and I hope you still can check in with us June group as you get underway with chemo.
xxx
Hi guys,
Hope everyone is doing okay and keeping well.
I’ve struggled abit this week. I had my second round of EC last Thursday. I’ve been cold capping but I’ve lost quite a lot of hair (balding on top) and its gotten abit matted at the sides so I think I need to cut short or shave it… this scares me but I just need to be strong about it and remember it will grow back.
My Dad has been unwell in hospital and it’s made me feel very low, it’s difficult feeling useless in a situation and worrying about someone else all the time when you aren’t well yourself.
I’m currently on 2 weekly EC cycles but the breast care nurse said they may delay my next treatment by a week because I had bloods done yesterday (I went in because I was feeling nauseous and dizzy) and my neutrophils were 0.2, not sure if they will be high enough by next Thursday to have my treatment. I’m praying for some positivity and sunshine to come back into my life as I feel like I’m really struggling and I’m only 2 rounds in.
Any positivity and love (or any resources to cheer me up), please send my way - sorry to be a downer. Just needed to vent to people I know will understand.
Hi
l am on my third round of EC on Thursday the last of them then moving onto paclitaxel . Now completely bald l did not do the cold cap so my hair started to fall out after the first treatment so l went to my hairdresser’s and shaved it off she done a number 4 which was not to bald l was glad in the end I shaved if off and l felt better for it, l just put it in my head this is part of my treatment , just looking forward to seeing it grow back. The first few days after treatment I feel awful but after that l am back out walking with my dog which makes me so much better. It is hard to stay positive but l will not let it get me down and take over my life l now live for today between chemo and radiotherapy I am hoping to finish my treatment by Christmas l have got more treatment lined up for a further three years but l am not thinking about that until it comes.
From the start I have taken each step at a time and not thought of what comes next until it comes .
be positive now and stay strong you will beat this x
@Jess_ its a tough old ride. So sorry about your dad. Hope he is better soon.
I totally get the hair. I started cold capping but had to move to another drug because of an allergy and hospital policy is no cold cap, so plenty of twists and turns. Bald on top too! i took a photo last night of my parting and crown and cried ?
It is best to brush it as that is removing hair already out. I use a really gentle brush and make sure I put my hand flat onto the roots to stop tension and brush below that. I’ve also just got a “topper” on amazon. I like having some hair. And a baseball cap! I’m holding off a buzz cut.
our bloods do all sorts if things don’t they. Sounds like you have a great team watching everything to make sure you’re ready for our toxic cocktails. Rest is so important and I find insight timer app (free version) useful if you are into meditation or just helping with stress. I also got some Epsom Salts just to soak in the bath. Bliss.
sending you loads of love and healing for this period. Best place here to share the rubbish of cancer. Venting is good!
xxxxx
Hi @Beeza66 sounds like it’s been such a tough ride for you since surgery. Are there any lymphedema clinics near you, I was told this might be a possibility if the cording and swelling I was having didn’t pass. The gentle pushing in technique and stretching the arm back and out, doing she’ll stretch/child’s pose really seemed to help. The Oncology Physio showed me how to do it. I hope you get some relief from this soon, it must be frustrating. You’re going to get through this. Sending much love and hope.
@rachel60 all respect to you for your ballsy attitude. You made me laugh and cry at the same time this morning. You are an inspiration to all women.
@Jess_ so sorry to hear you’ve got the added pressure of your Dad being unwell. I hope you see some breakthrough both for him and yourself soon. Much love xxx
@janeymay60 thanks for your encouragement and courageous spirit. I think that’s half the battle. Thanks for encouraging me to keep going even when things are rough and the wood can’t be seen for the trees. Good always comes out of rubbish. Keep going, you’re amazing.