@Guida how are you? Hope your weekend was ok and this week brings confirmation of your next date
@Beeza66 thinking of you for Wednesday. First is scary but you’ll be well supported by the chemo nurses. Tell them everything you are feeling.
here’s to positive week in this rubbish time we are all going through
Virtual hugs xxxx
Thank you all for your kind words and your virtual hugs @Beeza66 @Dhillman @rachel60 @naughty boob @Artylady @Pablo23 and your very wise advice too.
As @Dhillman mentioned it is important to let go of expectations and focus on moving forward so I went for a walk in a forest near me and I added Tears for Fears to my spotify playlist ? (good tip @rachel60).
We are receiving treatment in the same hospital @Artylady and I was there too last Tuesday for my bloods. I also went to Maggie’s that morning because there were some delays - maybe we have crossed paths…I hope it will be easier next time to get your Picc line.
All the best @Beeza66 for your first cycle on Wednesday, and all the ladies having chemo this week. And a good week for all the others with minimum side effects and lots of love and happy moments ?
Hi all
It’s all so up and down isn’t it? I started my second cycle last Thursday and was feeling pretty ok about it but then was completely shattered all weekend. And woke up this morning with a dodgy tum and nose bleed more than it has previously ?.
so I’m feeling very fragile now, not sure if the bleeding has stopped completely and wondering if I should call the helpline. It’s quite scary when you’re on your own and these sorts of things happen. I’m definitely feeling like a chemo patient now- hair is moulting like mad and I have a blotchy face rash too- not my best look!
let’s hope the week improves.
@Artylady @Sooty to hear you’re struggling, although I haven’t started my chemotherapy yet due to treatment plan changes, I would call the helpline. It may be nothing and they can reassure you and if it is something they can help you. Whichever the response it’s worth the call.
@Beeza66 Best wishes for Wednesday.
@naughty boob @Artylady I agree that the helpline are good. They have sorted a few things for me and even phoned back to check how I’m doing which is reassuring. Most side effects they are able to manage. They’ve seen it all before.
hope it gets sorted
x
Good morning beautiful ladies,
It’s certainly been a minute since I posted last…
My 3rd infusion got postponed by a week because I got a cold so it’s now going to be this Friday. I’m weirdly looking forward to it because 4 weeks in-between treatments feels too long. My little one started nursery (hence the cold lol) and I’m back at work after mat leave. Only Tue to Thu and so far, I’m very happy to be back, but of course, I’ve not yet had to work during my “bad week” so I am a little nervous about that. My boss is supportive though so I’m sure I will manage.
I’ve got a lovely bald patch on the crown of my head which is bothering me more than I thought it would. I’m almost willing to just brave the shave because waiting to see how much worse it will get is difficult. I’m persevering with the cold cap for now.
All secondary side effects were much better after my second cycle- no acne rash (just scalp), no thrush, tongue/throat sensitivity was minimal, no significant loss of taste buds, headaches, nose bleeds, stomach ache or heartburn, etc. This is because my supportive drugs got tweaked and I started a lot of them much earlier.
My nausea was really bad this time round, but I messed up my fasting and couldn’t finish it; I’m going to do it exactly how I did the first time now because the difference was astounding. Hot flushes, on the other hand… They never went away and I am struggling every day now. It’s like my body has completely lost its ability to regulate temperature, it’s ridicolous. I’m constantly hot regardless of what it’s like outside and wake up 27 times a night. This is due to my hormone treatment which I will remain on after active treatment, but I am trying not to think about that or I get very sad. Also, a nurse just called to say my potassium levels are low so I need to start supplemnts today. Apparently, they don’t taste nice, but oh well ?
I’ve got a half-way scan before my 3rd round on Friday so I’m looking forward to that. I think knowing chemo is doing its job will give me a little pick-me-up because I could do with some extra energy and motivation.
Sending you lots and lots of love and healing xxxxx
Great to hear your update @Florence_87 . I was just thinking about you and in popped your update. What fasting method do you use? Sounds interesting. Sorry about the hormones. That’s tough. Is there anything they can do to help you through that?
Agree on the scalp, I have the same but resisting the big cut at the moment. I did buy a pink wig - moment of defiance!
@Beeza66 hoping tomorrow goes well.
@Guida did you get date sorted?
hugs to all x
Hey @Florence_87 I feel we are in the same boat! My 3rd infusion was also delayed by one week, there was a lot of things going on at home and when I went for my pre-chemo bloods I was just feeling really unwell and the nurses said to delay for a week. I felt very defeated/worried about the delay at first but my body feels much stronger now, so I know they were right and it was a wise call by them.
I’ve also got a big bald patch on the top of my head, hair is still clinging on at the sides. I bought a few wigs from Amazon to try and I’ve found one I absolutely love, it was from a brand called haircube. Ive worn it out the house twice now and it’s given me lots of confidence (I was just wearing a baseball cap before).
Sorry to hear you are suffering with hot flushes, I am on Zoladex and experiencing them but thankfully they are usually over quite quickly. The nurses (and also a previous BC patient) have said acupuncture is very good for hot flushes, I’m not sure if your hosp can refer you to someone?
Best of luck for your scan! I’ve got mine after my 3rd cycle, anxious time waiting but like you I hope that it will give me a boost if the cancer is shrinking xxx
Good Morning All
@Florence_87and @Jess_ I hear you with the scalp and shedding. I have had 2 cycles of EC and using cold cap. I spent this weekend shedding everywhere (I have a Bob cut but very thick hair). It’s more shocking for my husband and my hairdresser yesterday, when I took myself off for a pixie cut. It all came out in the wash and when cutting.
I am almost bald at the back but still have some on top. I am not bothered and funnily enough I have baby hairs growing and my nail still grows. I took myself off for a pedicure. I decided to walk round the park without any cover, aside from a few glances, people are so wrapped in their own world, they don’t notice. I wanted to wear this like a badge to support ‘everyone’ just having a tough time in general. My neighbours don’t know and aside from PICC line (I hide), this to me is the second visible sign.
I bought a wig from Amazon and a turban hat thing for when I am not so confident.
Things I learnt about myself:
I am vain but not too vain.
Pixie cut suits my face shape.
I am actually quite gutsy when need to be.
I don’t carry with me the weight of other people’s opinions or judgements.
I am ME (unchanged), not my hair, not my personality, not my disease or this temporary home I am in (my body).
I have many reasons to be grateful and I will focus on this.
I have my 3rd EC on Monday and on the 7th of July I start Chemo + monoclonal and targeted therapy x3. @MarieL and @Karenj (I hope I got the right person), and anyone else on similar treatments, I hope you are doing well on this treatment.
I am a bit nervous for next stage of antibody/targeted treatment. I have a scan before I start, to see if TC x3 made at least a small dent??
Love & Best wishes to all of you.
I hope you have a good week/weekend and if you are struggling, I hope you discover some light and positivity to carry you through ???
Hi all, I hope you are finding good things in each day to keep you getting through the worst parts of chemo. I’ve got one more EC session then start on Paclitaxel. My white blood cells have decreased so am very tired, but so fortunate and thankful that I can still work, have no pain and the sickness is minimal.
I’ve found a smoothie of pineapple, kale, ginger, orange juice, and any other fruits basically with a bit of honey works a treat to combat the constipation caused by Ondansetron. I’m eating liver and liver pâté to try to keep iron levels up.
I’ve bought a Manta brush and silk bonnet to try to preserve the thin hair covering I have. It seems to help. It will grow back eventually, but it’s hard isn’t it, when it’s coming in clumps? Ladies, we are still beautiful inside and out, hair or no hair. I’m making the best of making myself look as good as I can each day,even when I feel s***, psychologically it really helps. Moo Goo chemo skin care range has been good to care for my skin. I don’t think Ivelooked after it so well, since I was a teenager. This little things make a difference to my self esteem right now.
@Cali have your anti sickness meds been changed effectively yet. I hope you get some relief from this really soon, it must be awful feeling so nauseous. I’m rooting for you that you get respite from it as soon as possible.
@Beeza66 how did it go today? How are you feeling after your first treatment? I can relate to the memory lapses, the week you lost your passport, I ironically also lost mine!!! Found it in the new e I’d decided to out it, after a day of hunting. We all have so much to think about at the moment. Be really really kind to yourself as your body adjusts to so many things. Sending love.
@Guida , how are things going for you now? Sending you a massive hug and love. xxxxx
Hi Dhillman.
I know where you’re coming from, i have a short bob and mines gone on both sides at back & crown, i use to moan about my thick,wavy,curly hair, so thin now. Got an appointment @ The Olive Tree next week to look at wigs. Saw Oncologist, she said hair should be back to where it is now, 3 weeks after treatment finishes, let’s hope so.
Take care xx
Hello Florence. I started me chemo June 8th. 3rd session tomorrow July 20th. My goodness it’s tough going!! Side effects are not at all nice. Hope your doing OK. ?
Hi all! Talk about brain fog, I forgot my log in details for here ?
Hope everyone having another treatment this week is doing ok. Just remember that at the least its another one down.
@Geo23 well the nurses did change my anti nausea meds, unfortunately I had an even worse reaction to the new ones and was being sick lots, couldn’t keep anything down at first not even fluids. The nausea did go away more quickly days later, but I’d already swapped back to the first drugs I had been given. I have a check up with my oncologist next week before my third treatment so I’ll be begging to try another kind.
Hi @rachel60thank you for checking on me ? I had my infusion yesterday!!! - 3rd cycle of EC ?. But I had to advocate for my health so I’m posting here what I did if other ladies need… it’s important because it’s so stressful not knowing when your next cycle is and you worry so much when it gets delayed. So firstly, I posted a message to the volunteer nurses on this forum (and Macmillan’s) and I followed their advice - I have to say they were great, very professional and they gave lots of information ?. Next day, on Tuesday, I went to the hospital, in person, to talk to the medical unit / scheduling, I called my oncologist secretary and contacted PALS. Then I went to Maggies’ to relax: it’s difficult for me to be assertive and now I get quite emotional. Two hours later they confirmed they had a slot for the following day - it could have been just a coincidence/ a last minute cancellation but I felt so relieved. I’m wrapped up in my virtual duvet ?
Hi @Beeza66 how are you? I hope your first cycle yesterday went well. I end up having my delayed infusion on the same day. All the best ?
Hi @Florence_87 good to hear from you. I’m glad your secondary side effects were better this time around. I was going to try fasting for the last 2 cycles but I was given less than 24 hours notice this time. Good luck Friday on your 3rd cycle - another tick - and I hope your scan shows the treatment is being effective?.
Hi @Cali that sounds really awful. You must be so fed up with it. Have you tried phoning/emailing the Cancer Nurse Specialist to see if you can get something done sooner? You shouldn’t have to be putting up with all this so often….I am cheering for you Cali. I hope it can be sorted really soon. Look after yourself. Lots of love. xxxx