Hi Ladies, hoping you've all had a lovely day? Edinbird so pleased you started T today don't forget to drink plenty and rest up , unfortunately i was unable to have mine today hopefully next weeks can go ahead after seeing my oncologist this Friday bit taken aback don't know why cause i already knew i wasn't well enough to have it.
Is anyone else HER2 positive ? I watched a film about Herceptin the injections for HER2 and the trouble getting it to market so pleased they did, its ok but not as informative as i thought it might have been still had me crying mainly because i was feeling happy for myself in a sorry kinda way as I'd started herceptin last Monday xx
So glad that the first T is over for you, hope you will feel ok in the next few days. Relax and rest now. X
Glad you're done Edinbird. Lets see what the next few days bring. I have worn 2 different size cold caps. The first I had a small, then I had a medium and then I had a small again and Ive got a big head I think! Just been to the beach with my new sun hat on. Does the trick. My sister was in shorts and t-shirt and I am in jeans, long sleeved top with a fleece waistcoat and sunhat and I am usually the hot one. I am always cold nowadays!
Edinbird, well done☺. Glad you didn't get a reaction to the T but sorry the cannula was problematic☹. It's when I hear of those sorts of problems I'm grateful for Klingon (PICC line). Get some rest now and take it easy🛌🏾🛋. xxxxxxxx
Oh edinbird, iv literally been waiting for your post...phew! It's done....your going home.....relax and do what you gotta do.......so glad and relieved that T is out out of the ...( until the next one)
I have survived! Well I’m on my way home anyway.
Took 4 goes to get the cannula in... new record 😂 then a good old faff with the cold cap given I’ve lost a lot of hair where they aim to preserve... bottom line I’m between sizes so I could end up proper Friar Tuck but I’ll live with my hats on.
No reaction to the drugs but got proper cold with the cap on which seemed weird when it’s so hot outside. Started feeling a bit iffy so had to have a sandwich for the journey as well as during the treatment but eating normally sorts me out.
So now to wait and see what happens... still not been given anything for diarrhoea and still can’t take ibuprofen so hoping any aches and pains are manageable.
Trixie how are you getting on? xx
“The "do they still do chemo over Easter" question isn't as daft as it sounds. My chemo unit completely shut from Friday to today inclusive. “
Same on this end.
Going in for bloods tomorrow morning.
In the meantime I enjoyed a stroll around Wakehurst Place with my daughter. Photos attached 😊
After writing a couple of posts to individuals this morning I thought I'd better send a general greeting to all you lovely ladies.
Trixielady glad you're home☺. Chemo this afternoon? Wow! Go girl.🏅.
Loving all the photos. Edinbird the car parking? was epic. My other half did suggest that only a woman would have left a car like that. Bit sexist I know☹. I begged to differ. He did ask if your car had been damaged at all thus demonstrating his more caring side☺.
Good luck to all of you having chemo this. I know for some of you huge changes are afoot but I know you'll all cope. I think we're all stronger than we think💪.
As for me, I'm feeling much better now. Think a combination of doing too much 1st week after chemo, lack of sleep and cumulative effect of chemo sessions finally took their toll last week. On the taste buds front water finally tastes normal which is just aswell during this warm weather🌡☀️. Bowels back to normal☺. Indigestion/heartburn gone, but some burping stubbornly remains😲. Bought yet more bandanas and a couple more PICC line covers on- line yesterday, oops. If I can get them to match what I'm wearing then I think I'll be brave enough to wear them out. Intend to do a trial run this afternoon when we go to a garden centre. The PICC line with a short sleeved top is a bit of a problem - look at me I'm having treatment it's shouting📣. I'm just going to have to put those big pants on.
Have a lovely everyone. Today's chemo girls keep us posted ❤❤❤❤❤
i have spend most of my weekend up the caravan so not a lot of signal, so will update later when I’m home.
Just wanted to say good luck Edinbird and Trixielady today 🍀
our chemo unit shuts for Easter, so bloods will be tomorrow and chemo fingers crossed Wednesday, they did say last week they would have to squeeze me because of the bank holiday, but have managed it. Luckily in our unit we can take a few people in,my sister has come to each session and one of my group of friends, they have all taken a session each, we were called the party corner lady session.
catch up later ladies enjoy the last of the bank holiday 🐇🐥🌞
glad to hear you are back home.
Good Luck with Chemotherapy this afternoon 🍀🍀🍀
Re. Meditation I started using the Calm app to manage stress levels ( about 7 months before my diagnosis) and I liked it. About 5 months before that I was having a full body massage ( to relax) and was finding that I couldn’t ‘switch off mentally ‘ during the massage. My brain was whirring away which was exhausting. Then I had my mum during the summer break, pointing out to me that I was always thinking ahead. I told her that this was teaching for you, you are always planning and have to be one step ahead ( with plan A, B and C ready too in case what you had planned wasn’t working on that occasion ) thinking, tweeking, adjusting, personalising the learning to meet individual needs. I was permanently in overdrive.
It’s actually scary thinking about it now. The art therapy has helped me acknowledge this too.
Sometimes I just listen to the Calm app whilst lying in bed.
It is all about focusing on your breathing. I do this during my walking too.
I also now use what I have learned during chemotherapy and also prior to surgery or when stuck in a traffic jam. Anywhere when I feel tense, anxious or annoyed.
Lots of love,
Glad you're home Trixielady. I think we are all feeling nervous of the unknown. Sarah good luck with the steroids, Seaside you're this week too? I think we will all have to put those big knickers on again!
Morning all, just popping in to wish you loads of love and luck Edinbird. I know exactly how you feel as I feel the same except mine is next week. You can do this xxxxx
While I was busy editing and uploading photos, about 5 of you have posted messages 😂🤣
Morning to you all!
And yay Trixielady, you're home. That's great news 😊
My unit also took a break for Easter so my blood test is tomorrow. Treatments scheduled for Wednesday and Thursday which is all out of sync compared to my previous cycles...if they even go ahead, which I doubt.
I know, hair regrowth after just a few weeks is wishful thinking. To be honest, do I really want the badger look which is what I'll be heading for as my hair, what's left of it, has still retained its colour since being coloured at the beginning of Feb.
As for surgery I can't believe how calm I am at the moment. It's either because I'm focussing on events between now and 14th May or I'm in denial of what's to come. As for the surgery itself it'll be a lumpectomy, which shouldn't be too bad as Gremlim was only 21mm ×18mm to start with and after 2 cycles of chemo it had shrunk to around 10mm☺. I can feel that after my 4th chemo session it has shrunk yet again. Luckily it's got a marker in it so that the surgeon can locate it. As for my lymph nodes I haven't a clue. The original biopsy showed up some cancer cell involvement in one node. I'm due a scan next Monday so things should soon become a little clearer.
Enjoy your day and the beautiful sunshine☀️☀️☺xx
Good luck for today Edinbird. Sending you super strength. Hope all goes well. Xx
Thank you for the compliment Nettie. You are doing really well too. Don't forget, you've had a very tough time with hospital stays so a short walk is a big achievement. Xx
Nice to hear from you Ocean. Rotavators are great, aren't they? Save a lot of energy. Xx
Sarah, I hope the steroids help you to power through your next treatment. Xx
I had fun at the ice hockey yesterday. GB won 3-1 against Hungary. Their fans were great, jumping up and down and chanting throughout the game. No idea what they were saying. Hope it was nothing rude 😂🤣
Had a long walk around one of our local lakes yesterday morning. It was so lovely to walk in the sunshine. Picture below.
Have a good day everyone. Xx
Trixelady, your having chemo today??? Oh eck, good luck Hun, thinking of you heaps, god we really are warriors aren't we?? Xxxx
Edinburd, just popping in to support you today, really hope your up to a post later to tell us how it went...thinking of you LOADS.....xxxx
also see our trixelady is home...phew! About time too...rest easy Hun xxxx
catch you all later...love you all xxxxx
Trixielady so glad you are home and feeling better 🙂
The "do they still do chemo over Easter" question isn't as daft as it sounds. My chemo unit completely shut from Friday to today inclusive.
It's annoying as it means I haven't been able to have my bloods done for my (hopefully) treatment tomorrow. I couldn't get it done on Thursday before the Easter shut down as they said that's too early. So now I have to go in usual time for my treatment tomorrow but then sit around for 2 hours while they test my bloods, and then possibly get sent home if they aren't good enough.
My other half will be annoyed if that happens as he will have used up a day off work for nothing!
Trixielady, you are home!!!! Shame you have to go have chemo now but you should still be able to enjoy some sunshine. 💃🏼💃🏼💃🏼🙌🏻. Xxxx
Only slept from 11.30pm to 3.30am. Longest, hottest, boring night ever! I need to get stuff done today and get outside as much as I can. As I stopped steroids yesterday afternoon, the big slump will come later where I go so weak I can’t move for a day or two and so I need to battle through this 4 nights little sleep brain fog! My husband has realised he isn’t going to get much convo today so is keeping a wide berth! 😂😂😂 x
Cancer takes no break! I’m glad to be getting the T that should kill this nasty bugger off and I’m sure I’ll be fine. It’s just the ward policy they are so busy it’s just someone with you first time then you’re on your own. There’s not loads of space my stuff is always all over the floor!
Posted on my Facebook forums and now getting swamped!! It’s nice to know so many people care 😊
Trixie good luck too!! I feel better knowing there are two of us going today 🤗
I'm home safe and sound and hopefully having chemo this afternoon,
Edinbird good luck for today can't understand why they won't let your hubby in with you our unit allows at least 1
Daisydi hope your OK for next week hun
Implausible happy belated birthday and bathroom its looking good
Rosina you definitely put me to shame I'm going to start to try and push myself to do more exercise and meditation
I find it so difficult to drink all the fluids before chemo
Nettienoo how you doing after number 3??
Ocean21 how are you doing?
Seaside sar when is your next chemo
Marlyn hopefully your feeling better
MBJ so pleased your slowly rebuilding your life its so precious
Sandraindurham & V so what happened did they reduce Veronica's chemo? How are you both feeling now??
SusieB so how are you feeling now after number 4 what's happening next hun??
Sonia28 how are you doing ? Xx
Some people make you laugh ! Do they still do chemo over Easter? Oh no i just tell myself to shut my cancer off for the holidays wouldn't that be good xx
Just read your post and I can't believe that the unit won't let your husband sit with you. Did they explain why? I thought that throughout this horrible journey having someone with you at all times was actively encouraged. It certainly is here. I totally get that you're going to be anxious, as you say it's just like going back to the beginning. You're a strong girl and you got through the FEC and can and you will get through the T. Remember as horrible as chemo can be your body needs it and like me you have the physical proof that it's working. Hold onto that thought. Let the nurses know how concerned you are, it's their job to reassure you. We'll definitely be thinking of you. Chat away all you like, you know someone will always be listening. Take care. Sending you lots of hugs❤❤❤❤❤❤❤❤
I hope everything goes well today I am sure it will. Can't believe you have got a massage lady how great is that! I hope she works bank holidays. You have prepared well and I know you will do everything right when you get home. Watch the sun though I think you will be more susceptible to it. Hope to hear an update later.
Edinbird was just popping on to wish you well, good luck today.
I think it is a little rough that they don't let you have company 😞
Try not to worry about the allergic reaction thing, that's why they have pumped you full of steroids, to prevent that.
Which reminds me, I need to take mine!
Better go pop some pills....
Edinbird, make sure the staff know how nervous you are about T because you def need extra reassurance if your husband isn’t allowed to sit with you. You are a bloody strong girl though. It shines through on all your posts, however rough a time you are having. Who knows, you may find T a doddle after all you’ve been through? I really hope that is the case. Lots of love. Xxx
Morning all xx
Serious steroid sweats even with the window open mean I’m not greatly rested but wide awake. Need to get up for water, still feeling plenty of indigestion. But have to eat to take more steroids...
I’m seriously nervous about this. Some people seem to get a nasty reaction to T so I’m very anxious. It’ll be done quicker so less cold cap but it’s the not knowing, like being back to the start. And I was allowed my husband in with me first time but not today. Hope I get one of the nurses I’ve had before, and the massage lady really had better show up on a bank holiday!!
Then is it the done thing to come and sit in the sun afterwards again?! 😂 my nails are all painted now, dark purple which I quite like but shame is has to be so dark for the next 10 weeks. Maybe should have done sooner but seems to be T that messes with them so I didn’t bother before.
Hope everyone else is feeling well and can enjoy their day off. Finally heard from bestie even if it was a very delayed message from yesterday saying Happy Easter. I hope he’s back on before 11 when I go in.
I know you’ll all be thinking of me which means a lot, update as soon as I can (and probably during as I’ll need something to occupy myself!) xx
Hey there lovelies,
Just a quick pop in , will catch up with everyone tomorrow. Been doing some serious gardening these last few days. Had a gardener in to do the digging and widened the beds. Other half was never going go do it so I hired someone. Got his rotovator to work and the beds were done in a couple of days. I’d never have managed that hand digging. It was great, , a real treat for the spirits to get back to planting.
Belated happy birthday Sarah, looks like you had a grand day and belated Bonne Paque ( Happy Easter).
Right, catch up tomorrow. Got to go and have a pee for the umpteenth time. I’ll wake up again mid morning to go. Driving bonkers.
Rest we’ll all of you.
Ps Dikat, just wanted to say thank you so much for popping in and encouraging us all. It means a lot. 😘
I lost my hair at 10 days after 1st FEC but didn’t cold cap so you definitely win Marie. It just shows how strongly that one cycle affected us though eh? 😥 x
It never ceases to surprise me how differently we are all affected by chemo and how it’s is so unpredictable. I have learnt to take each day as it comes and if it’s a goodish one I am grateful as I’m sure all my lovelies are. I managed a trip to the huge garden centre at Trentham this morning. Followed by crashing out in bed for a couple of hours exhausted when I got back, but it was so lovely to get out in the sunshine. Unfortunately, we hadn’t realised the whole area selling plants (which we’d gone for) was closed for Easter Sunday only everything else was on sale. Never mind, if the steroid slump hasn’t kicked off tomorrow, as I have just finished them, we may pop back for plants. There is a nice retail village in log cabins next door to the garden centre so ended up making up for the lack of plants by buying a cobalt blue linen shift dress instead.....ooooops! I’m hoping this is my last night of hardly any sleep.
Seaside, I love that summery photo of you on your bike. No one would guess what you are going through at the moment. You are such an inspiration as are all you walkers. I have done quite a bit more walking since this last chemo but still tiny in proportion to you little Duracell bunnies.
Trixielady, are you still in hospital honey? If so I hope they will get you home very soon. Thinking about you all the time.
Edinbird, what time is your treatment tomorrow. You will be in my thoughts too.
Marlyn, I really hope you start to pick up soon.
S & V, I can see these gorgeous forum girls have done their usual wonderful job of giving you both some wise words, comfort and support already. I think of you two constantly you know. We are all going to get through this together, one way or another. Love you all so much. I hope everyone at the very best has a decent night’s sleep at least and some more sunshine to wake up to tomorrow. Xxx
Hi Susie B
Well I am 8 weeks post 1 chemo so don't hold your breath for hair growth yet. Mine can only just bee seen now I keep on using a magnifying mirror but that's not really helpful I suppose.
I am sure your surgery will go smoothly, coping with that will be a breeze after chemo. Are you having a reconstruction at the same time?
Yes, unfortunately you do hold the top prize for hair loss and in double quick time☹. I've got a bit of respite from chemo and I am due to have surgery in the next few weeks. Having read regrowth can start as early as 3 weeks after chemo ends guess what I'm doing everyday now? Close inspection every morning even though it's only day 10 after chemo. How sad is that☹? On top of that I'm still leaving hair in the sink each morning after gentle combing and brushing, so how can I expect regrowth to start😨? Crazy or what😲🙃!!!
Hair /No Hair
Well do I hold the prize for head hair loss girls. Cold capped, l dose of FEC, no hair at all on my head after day 12. Hair hung around everywhere else though. Now I have a slight growth I can feel it. My poor husband keeps on saying yes it's growing I can see it trying to encourage me bless him, but I won't need any pony tail bobbles for a few years that's for sure. Oh yes and it's almost white too. Mind you I have no idea what my natural colour is anyway haven't seen it since I was about 17. 😂
Rosina I just read this like 10 mins ago. I used to live and work in Bury St Edmunds (first police job) so I still have Suffolk and Norfolk news come up on my phone. Now my husband is a plant scientist but a lot of the stuff about genetics translates and he works on plant pathology and disease... so he understands at a fundamental level. It’s good he can look at things in a technical way but when there’s a risk of bad news (like when we were waiting on the liver scan) it must be awful.
I still don’t want to go off sick proper but it’s the only way I’ll get an actual return to work plan! If I can wait until surgery I’ll take that
In the headline news today ( my H1) told me about it.
Returning to work after cancer treatment.
Who started the hair census 😂
Ok my data :
head : Friar Tuck,
eyebrows: look thinner to me , used to have them tidied up but don’t bother anymore.
eyelashes : also look thinner but still there
arm hair: gone
lady garden : bald and it used to be a jungle!
nose hair: gone , nose drips.
arm pit hair : gone - don’t miss it either!
leg hair: greatly reduced I could get away without shaving.
moustache: minimal and it used to need threading once a month ( saving money- yeah)
stubborn chin hair: much weaker noticeable to me but only if I inspect myself in strong sunlight.
hair on my big toes: still there so probably have ‘ hobbit’ in me 🤪
just to second your post.
I have thoroughly enjoyed my ‘break ‘ from being dosed. Feeling so much better.
Did another walk today ( my son came along this time) and I met up with a friend who was volunteering ( Easter fundraising activities) at a park I normally drive to. My head is clearer, energy levels are up, farting has returned to normal levels. Initially I was miffed that I was ‘off target ‘ so to speak but now I am grateful that dose 4 was postponed and that I have been able to enjoy the Easter break.
Another walk already planned for tomorrow. Got to make the most of this weather!
Well no roid rage yet despite coming back to the car to this...! 😳 my car is held together with duck tape but at least I can park straight!
my legs are still hairy! In fact very hairy indeed! Arm hair gone, lady's garden spartan, no underarm hair and sadly eyebrows are going too as are the eyelashes....poo! Xxx
I now feel like a weirdo having had hair around my belly button!! 😂 it kinda went down towards my pants... that trail is gone
And what’s with everyone else losing their leg hair?! No fair 😕 I guess it’ll come...!
Hair? Let's see
Legs - just counted 4 hairs
Lady garden - still bald as a coot
Belly button - never had any
Arms - finer than normal
Under arms - no maintenance required since 1st chemo day
Nose - where did that hair go
Chin☹ - 3 or 4 persistent hairs went but just reappeared as if by magic a couple days ago
Eyebrows - ok but need help as grey mixed with brown. Also quite thin naturally - years of plucking
Eye lashes - lost a few but ok. Just use clear instead of coloured mascara to give some definition
Hair - Let's just say the Bobby Charlton comb over became ineffective many weeks ago😨. Deffinitely going for the badger meets baby monkey look. Wigs and bandanas only for the many months ahead
Chemo - the drug that can result in such random and inconsistent side effects.
Oh and eyebrows def on the move. Didnt have much to start with and lashes still there for now xxx
I started off super hairy so what Ive got now is just normal. Legs bit hairy but not as they were same as underarms and everywhere else. Just a bit thinner. My hands look really smooth and legs feel smoother as Im not shaving. Head is acceptable just thinner
Legs - not as hairy as they were a month ago but I can still spot the occasional straggler
Pubic area - 3/4 gone
Around my belly button - I don't think I had any there to start with? If so I never noticed! 😄
Arms - still as hairy as ever
Under arms - completely gone, which saves shaving, can't complain
Any kind of peach fuzz - still peachy too
Nose - my nose drips more so I think maybe I've lost hairs up there. Can't see any.
Eyelashes - mine look a lot sparser than usual but still passable with a bit of mascara
Eyebrows - less aggressively Dennis Healy like than usual.... I'm not having to pluck them as often.... but still there
Head - totally Friar Tuck
Ouch sunburnt head sounds nasty Daisy! I’m too thin I’m not going out without a hat at all. But I have been able to wear my holiday beach hat the last two days! 😊 maybe not to do the shopping in...
Im slightly annoyed that I can’t wear shorts or a skirt because I’ve not shaved my legs since all this started determined to see when the hair falls out! 😂 not yet anyway... it’s odd what has and hasn’t -
Legs - not in the slightest bit different
Pubic area - still a light covering
Around my belly button - gone!
Arms - as always was
Under arms - hair free
Any kind of peach fuzz - still peachy
Nose - as normal
Eyelashes - seems like more come out but they look the same
Eyebrows - still need a good pluck
Head - just call me Patch
Morning everyone. Happy Easter Sunday. Hope you are all feeling well. I have another good nights sleep. So two in a row. Amazing how much better I feel with decent sleep. So hopefully I will now have a good week. I really noticed the heat yesterday on my head. Went for breakfast on the broads fairly earlyish about 10.30 and sat outside. Had a full English as a special easter treat. Havent had bacon or sausages for months and months and so enjoyed it. I have always had thick hair and not really had to worry too much about hats but yesterday where my hair has thinned and there are the old bits of scalp showing my head got sunburnt. Lesson learnt so now I will wear hats if I am in the sun. Glad you are feeling a bit better Marilyn. You and Susie have done so well tolerating your 4th FEC. Have a lovely day everyone. Edinbird enjoy your day on steroids!
Good morning my beauties and happy Easter to you all! 🐣🐇⚘
I hope you are all able to enjoy today and not feeling too poorly. I know lack of sleep is still affecting most of us. Hopefully a few naps in the sunshine will help.
How are you, Trixielady? Hope the aches and pains have eased off now. Any chance of you going home soon?
Sorry to hear you have been feeling a bit rubbish, Marlyn. Accumulated side effects are not fun. And yes, water tastes pretty awful when you're in that mode. Fingers crossed you'll be on the way up soon.
Sarah, your oncologist has spoken a lot of sense there. I just wish I had known that in the first place as it certainly has been the case for me having 4 week cycles. Having said that, the nurse told me to prepare for 8 months of chemo so that I wouldn't be disappointed - I guess I put that piece of advice to the back of my mind.
Edinbird, love those socks! My daughter has a bunch of fancy socks like that. My favourite pair has a picture of avocados and it says 'avocatoes'. Love a good pun.
Sandra, sorry to hear V is worrying so much. It is easy to do that when you can't go about your usual routine. Sending you both all the strength to get through this.
Ocean, how are you doing hun?
And where is Deano? Hope you're OK.
Rosina, 10 miles! You are unbelievable!
Hi Susie, Daisy, MBJ and Nettie. Hope you can enjoy some chocolate today.
Sorry if I've missed anyone. Brain defo not up to speed.
I managed a bike ride yesterday. Stopped off at the garden centre and bought some shrubs as well.
Off to the ice hockey today. GB are playing Hungary here in MK. Kind of wish I hadn't booked the tickets now I've seen the weather forecast for today 😎
Love to all.
Marlyn salt is what I crave too! Was good last night as I really wanted plain crisps with extra salt☹ but had unsalted nuts and raisins instead but it was soooooooo difficult to avoid opening that packet of crisps.