Apologies for the absence - have been busy going from one appt to the next, and everytime I try to post (usually in bed on my mobile), it fails. Thank you all for the kind PM’s - I guess I do head for the hills when I struggle a bit…
I as sent away from my Onc appt to see my GP. My BP is too high and I lost too much weight during the first cycle. I have never actually resented weight loss before and feel quite miffed cos I was feeling so good for being able to feel the old love handles again!
GP put me on antihypertensives and I went back Tuesday for the chemo. The Dr saw me and insisted on taking my BP (not always easy when lymphoedema in one arm, and PICC in other!) - I should have known then I was in trouble. Anyway, he sent me away without the chemo and told me to go back next week. If the BP is lower they will try one more FEC to evaluate. He discussed dropping the dose to FEC 75, but the consultant said this was not an option due to age and lymph node status. In summary, if BP doesnt drop by Tuesday, chemo will be abandoned.
Not quite sure if I am thinking coherently atm, but jeeze does this explain my ‘headaches’. Anyway - my head is hurting a bit atm, so I am going to go and lay down for a while.
I so hope all you guys ‘n’ gals are coping with your SE’s and stressors atm. I am always thinking of you and sending good vibes your way. Just cos I go into quiet mode, it doesnt mean I am not thinking of you and wishing you well.
Rattles - check out the new profile pic - hope you see what I meant!
Well done on getting your first one done, Donna. The sleeping was a problem for me at first because of the steroids - but I did manage to get loads of housework done ! Just remember to be kind to yourself. Merc xxxx
Thank you for all your kind words.
Am home after my first one and they managed to get the picc line in eventaully. That was way worse than the chemo. Feeling quite good (so far) Tried to have a lay down but couldn’t go off, think that was the steroid/anti sickness drug. I feel like I’ve had a litre of coke. Hope I get some sleep tonight. @Doggirl thank you for thinking of me. Hope you are still feeling ok.
Hi Ginger1. Hope yours went as smoothly as mine.
x
Hello Merc,
I just love your new profille piccie!! It is great!
I am so sorry your chemo was delayed and you have to deal with more uncertainty about what to expect. Its a bummer isnt it- you don’t want the chemo, you do, then you don’t, but as soon as they say you might not be able to have it, you REALLY want it!
I don’t know much about HBP but might it come down in response to the meds prescribed by your GP? I do know the EC can impact on the heart function as I had to have a heart scan just after my EC and also after my recent op. I also know I could’t have EC again for this reason. But, there are plenty of other chemotherapies which don’t pose any risk to the heart. Do you live near a Haven or Maggies? Get yourself down there for some reflexology and forget the house-work for a bit!!
The way I am coping is to just focus on today. I am trying to accept thateven though I dont know what will happen next, it will work out. But, its hard. I will PM you tomorrow (feeling sick- my own fault).
I have been reading the booklet on how to keep your weight up. Here is where my sense of humour comes in- so forgive me if you are not yet in the right space for a giggle. I only wish I had the energy to get the d…m book as I shan’t do it justice. It goes something like this:
Put everything you have been peviously told about healthy eating in the bin (temporarily-my words).
Don’t fill up on fruit and veggies- if you are losing weight you need space to eat higher energy food and protein.
Eat meat, fish, eggs, tofu, beans, lentils, nuts.
Choose full fat foods wherever possible!!!
Use full fat cream and yoghurt!
Try to have fried foods more often if you can manage them (yep, you read that right).
Add cheese and butter to pizza, pasta, soup and veggies.
Try a full English breakfast, or porridge with cream for breakfast.
Or, lots of high energy snacks.
Unfortunately, I seem to have over-done it on an ice-cream milkshake. Its such a shame the one time in your ife you can eat whatever you like, you don’t want to eat a thing…
Thinking of all the buddies who had treatment yesterday and today.
Rattles, xxx
Some people find a glass of wine before a meal can help perk up their appetite!
Hope all those who have had treatment this week are doing ok, sorry for not naming personally. Well I’m on day two, didn’t sleep last night and today can only seem to eat dry bread & water as feeling abit sick. I know it could be worse.
Hope everyone is greeting a chance to enjoy the sun.
Lots of hugs, take care
Gillian xxx
Hi All, Rattles what a great list! those are just the things i ate after the first week and i haven’t stopped i will be the size of a house in a few months
I am stocking up on cheedar cheese, smokey bacon, fish fingers and white bread, back to kiddie food Squeakymouse yes the sea bands pressure points, going to give them a try.
Have got the paint and brushes out of the shed ready for tomorrow if i’m hyper am going to paint the bathroom instead of trying to sleep:-) Gillian good for you, hope the SE’s stay mild, Josie and Ginger welldone! first one down and welcome to the May Buddies
Luv viv x
Hope all of you who have had chemo sessions this week are doing ok - sorry not to name everyone!
Sorry to hear about all the things you are going through Rattles and Merc.
Wanted to ask for some advice…I am having my first chemo next Wednesday and know I am going to lose my hair - have decided not to try cold cap - but do you experienced people think it is too soon to have my hair shaved off a week after the 1st chemo? I wanted to get it done before it started falling out but not sure if it’s a good idea to jump in too soon. Do you think it would be better to wait till it starts falling out? I know it’s not the greatest problem but you are all further on than me so value your views.
Best wishes to all
Annix
Hi to Josie and Ginger - hope your SE’s stay mild. It’s day 1 after my chemo yesterday - went to work today as normal. Ended up making appointment with GP this morning as I got bitten at some point by two insects (or one who went back for a second bite) on the left upper arm - the one I had the ANC on. Had a big red swollen hard patch so thought I’d better get it checked out - got some hydrocortisone cream which seems to be helping. Also booked an appointment with my hairdresser to have my head shaved - I’ve lost all the hair next to my ears and starting to look weird so thinking it’s time to get it done. Hugs to all Julie
Hi everyone, well had first chemo, quite sick last night and not had a lot of sleep, thumping headache this morning but think that might be because I couldn’t keep down my BP meds !! Hoping today is a little better !!! Josie Jo hope you are doing ok xx
Hi Anni, regarding the hair issue I was advised by a hairdresser and my wig man not to jump in too soon and shave it off as he knew of a lady that clipped her very long hair to a grade 1 in preparation but didn’t actually lose her hair in the end!! Very rarely it can happen that you don’t lose it. I had mine cut shorter so that when it starts to come our it won’t be messy. I’m now day 15 after first chemo and hair is starting to shed and thin. When it get too annoying I will crop/shave it off completely. It’s really an individual choice though to take steps when you feel ready, Em x
Ginger1, myfanwy, josiejo, giraffe50 and Gillian - glad you are over the first one and you are not suffering too much, x Merc - I hope they sort out the BP issue so that they can continue your chemo - were you due to have docetaxel as well as FEC? I will be waving hubby and kids off later on their holiday- dog gone to kennels this morning and I miss him already !!!
Hello buddies,
Well, I managed to get up-just about. Feeling bit uugh this morning. Ginger, I didn’t get much sleep either, and can totally sympathise liquid seems even harder to tolerate than food. Like Gillian holding on to the fact that it could be worse… Josie how are you doing this morning? Anni, re hair loss, completely agree with Em. You have to do what is right for you. First time around, I had my hair shaved off as soon as I spotted the first signs of hair loss, this time waited for a weekend!!! The advantage of waiting was that it was alot easier to move on- the hair loss just became too much of an irritation.
I had to laugh at your post Julie - bet those insects were sorry for biting you?!! They must be feeling very poorly. Hope the cream works.
Hope harry duck and ambarose are doing okay? Doggirl - did I remember a trip (daren’t go back and check). Well, hope you are having fun. Fear it might be a bit too hot for me out there today but it is nice to see the sun.
Know there are people I have forgotten, but cyber hugs to everyone.
Take care, Rattles
Hi Ladies. Ginger1 sorry to hear that you were sick. Hope you are feeling better now. I felt a bit sicky but the 3 lots of tablets they have given me see to have helped keep it at bay. I know it’s early days but fingers crossed it stays at bay. Rattles Sorry to hear that you are feeling pap today. I’m feeling oddly ok. The picc line in annoying me as the bandage is in the crook of my arm. I’m hoping that it only big as they only did it yesterday. Other peoples I’ve seen didn’t seem to have as much dressing. Otherwise I’m feeling just a bit odd. I’m not really sure what to do with myself. It’s too hot to go out and as it’s Friday I would normally go to the pub with my friends tonight but I am stuck indoors. This lifestyle change will take a bit of getting used to.
Hope eveyone else is feeling ok today.
Hugs x
Hi there
I’m due to have my first chemo session on Wednesday (6 x FEC), so just make it in May for my first dose. I had a mx, SNB and reconstruction 4 weeks ago. Off to the hairdresser tomorrow for a short ‘do’. Nice to hear about everyone else’s experiences - hope you all have good weekend and can enjoy the sunshine.
Alix xx
Welcome Alix, I too am 6 FEC. One done and still alive!
Hello josiejo. I too felt ‘odd’ but it stopped when I stopped the steroids and anti sickness. I’m sure it was them making me feel so out of body and restless rather than the FEC. Was back to normal on Friday (FEC Tuesday) and it felt sooooo good.
Rattles well remembered! Off to cornwall Monday. Hope you get a decent sleep tonight. That’ll do wonders.xx
Emylou, I can lend you a dog. I’ve got far to many anyway! Make to most of it and relax. Sorry you are kissing your holiday. Special one next year in order I think. This time last year I was in Florida. Sigh. Thinks a bit different this year. Bloomin cancer!!
I have a sore mouth at the moment. Was a bit worried this morning that it was getting worse as my temp had gone up. There are no ulcers it’s just. Bit rough. Not interfering with eating (gorging, so greedy at the moment). Am rinsing with salty water as advised by onc unit. Cheapskates
Anni, good question about hair. I’m day 11. Nothing yet so I’d definitely wait for it to start falling out. Although last weekend I nearly shaved it because I’d dyed it such a bad colour!! Was red, blondey/green, pink, plum, brown and now ginger. Wore a hat all week on the school run until it got too hot! Sometimes my own stupidity amazes me. Will blame The Cancer!
Big Rant !!! All worked up for FEC2, blood count too low, have to try again Monday.
Really sick of the way this SH***Y cancer plays with my emotions
Don’t Know if i’m P***ED off by the fact i wanted no2 out of the way or that i have spent the last 2 days getting blood tests then sitting around waiting to get the go ahead from ONC… only to be sent home to have to worry about it and go through it all over again on Monday
On the good side i won’t have to be sick all weekend again and this rotten chemo must be killing something in my body.
Already taken my Emend pill so will do a trial on myself if i have SE’s from sickness drugs or chemo They will need to give me new Emend on Mon.
I am now off to do something nice in the garden to cheer myself up!
Luv viv x
I have spent almost all day in bed wondering why drinking is even harder than eating?
Anyway, enjoyed catching up- Vivibell , so sorry your chemo has been delayed. It really is as hard psychologically as physically isn’t it? You get all psyched up for it. I am trying to adopt a different approach which is to count them only when they have gone- so, warned my friends not to start talking about the half way point until after its happened! On the plus side (sometimes clouds get a silver lining) you can enjoy the sun -this could be our summer! Top up your Vit D-good for the immune system and fingers crossed that you will be good to go for Monday… Em- hope you are doing okay after saying goodbye to your family. Like doggirl, think a special holiday needs to be arranged post treatment! Remind me when your next chemo is due?
Welcome to Alix. Doggirl , you must be really excited about your holiday- where abouts in Cornwall are you going?
Take care and lots of Rattles, xx
Merc, Rattles and Viv - sorry to hear you are having a rough time. Merc - I have the opposite problem, low blood pressure, so perhaps if I connect myself to your PICC line…!
Em - thinking of you, I remember you posted earlier that your family were going on holiday
Hope everyone else is having a reasonable weekend. My hair is starting to go (day 15 since fec1) - no visible bald patches yet but leaving a trail of hairs everywhere I go. I am desparately trying to keep it for the weekend as the hospital FEC’d up my wig referral so no wig yet. I am trying to avoid brushing it, touching it, and I am wearing a hat so that it doesn’t rub against the car seat headrest, pillow etc. and come out faster. However I would recommend the free NHS Brazilian I seem to be having to anyone - much less painful than waxing!
Squeakymouse xx
Hello everyone,
I’ve enjoyed reading your posts.
Ginger1, sorry you felt so sick, hope you’re feeling better and next time they get the anti-sickness drugs right for you.
Thank you Emylou9, yes, still so far so good, keeping my fingers crossed, each morning I now wake up thinking am I ok or not, much relief when I stagger out of bed (low blood count before chemo so spinny head when I get up) and am.
AlixJ, good luck with your first lot of chemo, I have to say I haven’t felt sick, or had any side effects and my energy levels seem surprising good (so far) so I hope you will be the same.
Doggirl, regarding the sore mouth. I was really worried before chemo because I had a swelling under one of my crowns, can’t really go to the dentist short notice as I’m on zoly acid for bones. I went to a shop that ends in S.Drug and bought something called Retar Dex oral rinse. A bit expensive but it cleared up the swelling and I use it now after eating and my mouth seems fine. Just a thought.
Vivibell, sorry to hear about the delay. My first one was nearly delayed because my temperature was 38. Tried to pursued them it was ok when I took it at home. Had to wait for them to phone my oncologist who was in a meeting but in the end he said continue with the treatment. Hope you’ll be fine next week and you will be able to enjoy your garden in this lovely sun this weekend. I’ve been in mine this afternoon, I find it so relaxing.
Anyway, good luck to all.
Claire x
Its a bummer isnt it- you don’t want the chemo, you do, then you don’t, but as soon as they say you might not be able to have it, you REALLY want it!
I only wish I had the energy to get the d…m book as I shan’t do it justice. It goes something like this:
