Starting Chemo in February 2013: February Valentines

Public Archive
1201

Morning ladies…it 6am…tossed and turned all night…could be that I just cant keep my eyes open past 8pm!!!.. well its round 2 today…kind of dreading it and looking forward to it??

Funki!!!..so happy you are back with a vengence and feeling more positive hun…I can relate that the treatment I kind of handled ok it was getting neutropena that knocked me for six…will be thinking of you today…decided to stay in my pjs till my appointment and hubby is going to experiment with my scarves today so that should be fun!!

lots of love to everyone today xxxx

1202

Funki, I am glad you got to see some caring and thoughtful people at last that were able to put your mind at ease. And I agree with Linda – I hope the nurses curtains fade too (and she gets stains on her carpets).
That’s a brave step going CC free and I applaud you – short hair takes some getting used to. But I suppose having none to begin with is a rather big crash course. When I cut mine short (half way down my back to a number 2) I soon realised I had ears!! Also the amount of shampoo to use took a while to get used to. It took ages to wash it all out initially.
Lisa, the first question I asked when being released from hospital was ‘can I have a bath?’. Granted it’s not as relaxing with my leg hanging out – but it was lovely none the less!!! You can’t beat a hot bath and some bubbles (except a glass of wine too – bloomin’ indigestion). Here’s hoping you don’t have too long to wait for your soak!!!
Sandra, good look today!!! I assume your OH is experimenting on your head and not his own!?!
Well – I had another idiot experience last night, but also a lovely person experience to balance it out!! I took my puppy to puppy classes as usual. We are doing ad hoc lessons at the moment as we missed our opportunity to book into the training lessons (which started last night). So we were asking about the next set of lessons (which are in June and will be at the end of chemo and start of radiotherapy). So I explained that to the ladies booking the lessons asking what happens if I have to miss some and one said ‘your treatment isn’t at night is it? So why can’t you come?’ followed by ‘your husband can come in your place’ and then ‘I know exactly what it’s like as my friend had 30 cycles of chemo’. We tried to explain that I may be in hospital unwell, very tired and my husband may not want to leave me alone. Thankfully at this point the lovely man that runs the lessons stepped in and let me join the March lessons – and any I miss I can do in June. I have paid my money and stayed an extra hour last night. I was shattered when I got home and had to stay up late as the antibiotics I take have to be taken on an empty stomach (so 2 hours after food or an hour before) – I had tea at nearly 9. The way I am at the moment staying awake until 9 is a task – but 11 was a marathon. Didn’t sleep in either. But I am really grateful to the lovely puppy training man for allowing me to go to his lessons. Let’s hope nothing else gets in the way of Monday evenings!!
Alison xxx

1203

TCH CHEMO , CYCLE 1 , DAY 18, CC
Good Morning Valentines
Its a beautiful sunny morning here which really cherrs you up. I,ve just walked the dog in th woods and taken some pretty photos of the Snowdrops they are so pretty.
Well for me its the dreaded day 18. My scalp has been getting more and more painful the last couple of days especially a big patch at the top and around the back hairline. I stood over the bathroom sink and rubbed it gently just to see what came out. OMG what a shocker I reckon about 300 hairs fell out. So much for the CC. I will see for round 2 on Friday how my hair looks and if to do the CC again. I do have very thick hair sp can afford to loose some but the fallout doesn’t bode well. How are you other Cold Cappers doing and what day are you on??
I had a lovely visit from 3 work collegues yesterday armed with choccies , flowers and mags also some belated xmas presents from the kids (I work in a school) . One of the presents was home-made xmas cookies all wrapped up wasn’t tempted to try them now thats its March!!!

Sandra good luck with round 2 . I know you dont want it but its better to be behind it then in front of it! Hope you feel ok??

Funki yes your Cold Cap deision is HUGE but you need to do what right. I may be making that decision myself too.

Xmas eve day 18 for me too. Hows it going? Your walk yesterday sounded lovely.
Alison your puppy is so lovely. Boy or girl? Whats their name. I want a new puppy too but can’t persuade OH at mo. I think it would be a good time as not at work and could oversee training and keep check on my older dogs reaction.
Well must go my sisters on the way she lives 60 miles away and I havent seen her since diagnosis.
Good luck to all having chemo, suffering SE’s , I don’t think any of us are in hospital???

Angie how are you?
Jackie xxxxxx

1204

Oh, forgot to say still incarserated, decided not to send me home cause still had infection. maybe today is the day. fingers crossed. xx

1205

B…s Just spent half an hour going through posts and typing in all my comments on one finger because other hand is in a straight jacket with these stupid drip things, and the b…dy computer or site has just gobbled up all the words.
Suppose i´ll have to start again.
Sorry ladies, good morning, hope you´re all haveing a good day.
will do post again but might take me some time. xxxxxxx

1206


FEC1 Day 6

Head throbbing and ‘juzhzhing’ all the time. It’s like I can feel my heart beating in my brain. I wonder if my blood pressure’s so high my head is going to burst? Sickness making me grit my teeth which is making the headache worse. I wish I could go to sleep. apologies for this moan, feeling very tearful and sorry for myself this morning so I’ll go.

Hugs to all

MMM

X

1207

1945(FEC3/TAX3)Cycle 2/Day5CC/UniHospSouthampton
Morning Valentines – another night of succeeding to sleep, but the unescapabe nightmares have returned! I cooked for a big dinner party all night last night – the guests were all here already and none of the food was ready. One of them was Brain Blessed and he kept bellowing that he was hungry and several were Kuwaiti women who wanted a sacred pool to wash in before they ate. What drivel my subconcious contains!!

Linda hope your appointment goes well today and that you come home armed with a start date

Chris and Jackie, solicatations on horrid Day 18. I’m about 10 days ahead of you (had a long first cycle as I changed days) and I’ve clearly lost the fight, despite the second CC with Cycle 2. I have large bear spots on the top and sides and everywhere is very thin. I am now wearing some sort of cap all the time – if only to control the hair flying around the house. I’m having a lot of trouble dealing with this, but I’m glad I gave the CC a try. At least it was an effort to have something under my own control and I think I had as much as I could deal with to handle at the first Chemo session, so I’m glad to have delayed this heartbreak a little longer! I have been using a hair loss serum called Natur Vital. It obviously hasn’t stopped it coming out, but I’m hoping that it will mean more enthusiastic regrowth. Redken also is supposed to have a product which enhances the hair when it starts to come back.

So sorry you are still in stir Featherbird – surely you will get out soon!

Hugs all round, Louise

1208

Hi Valentines

Alison your pup is adorable, I imagine a great distraction from what you’re going through at the min. Like Jackie, I would love another dog. My wee man died last May, and it nearly destroyed me - much harder than being dx with bc.

On the subject of cold caps. I had my long hair all cropped a month ago, and while it took a little to get used too, I now really like it which is typical as it’ll be gone within the next week. No one at my unit even mentioned a cold cap, and none of the other ladies were wearing them. Perhaps the nurses are reluctant to suggest it as it is more time consuming for them or maybe they know the success rate is minimal - who knows?!

I am currently on ciprofloxacin for my neutrophenia which I’m glad to say comes in tablet form. I’ve to phone my unit tomorrow to see if my symptoms have improved. At the min I’m still peeing acid but it’s still early days and I’m hoping for an improvement by then as I really don’t fancy being admitted again.

Stay strong Valentines
Dyane

FEC 1/6, day 14, Antrim Area Hospital

1209

Hi everyone,

Wowsers some of us are really going through it, stay strong everyone, in six months time no more chemo hopefully& summer is on its way :slight_smile: xxx

Thankyou to everyone for your good wishes after my stay in hospital, I’m feeling much better and having a good week. This afternoon going to get my line cleaned and attending a group called ‘look good, feel good’, anyone heard of it?
I shaved my head on Sunday with my husband, we did a sponsored head shave to raise money for our local Breast Clinic. It was really hard at first as I tried to contain my emotion for my 5 year old daughters sake, she said ‘mummy, you won’t be able to go outside like that, you’ll have to wear your scarves’ I think she had a panic wondering what others would make of it bless her, then she said ‘mummy you look really different but I know your still mummy’ - heartbreaking is not the word but I am sooo proud of how she is dealing with it. My 14 month old touched my head two or three times and then carried on as normal oblivious thankfully. I had a good cry when I went to bed that night but over it now…kind of ha ha.

Dyane- I am now wondering whether I had the same side effect as you- I’ve pm you.

Millymolly- Hope the sickness eases off soon :slight_smile:
Hope everyone who has started round 2 are ok, anyone about to get your gloves on, will be joining you Tuesday 12 th all being well.
Sarah xxxx

1210

Hi Valentines - FEC cycle 2, day 8, cc (but no more!)

Finally gave up and took clippers to hair this morning, now have no3 all over with lovely bald patches on top and above ears, so no more cold cap for me. I still had quite a lot of hair but the large bald patches were ever increasing and there was no way of covering it up, and on top of that trying not to wash or touch it just made me feel really dirty. I hope everyone perservering with cold cap has better success. But for me I know I need to move on from this as I have been depressing myself as well as family/friends with my constant tears about it!!

MMM - I have found so far days 5 - 8 to be quite hard both physically and emotionally but hoping like last cycle that i start to pick up round day 9, hope u do too xx

Hugs to all valentines xx

1211

Hi Valentines,

Are you getting used to the head yet Sandra, I hope the chemo goes well today. I’m getting used to the bald head now, though I haven’t had it out much as I get cold. Mum and Dad haven’t seen it yet, and after my son’s response to it when it was just a number 1 I haven’t dared to show him it bald. OH kindly said last night “it doesn’t look too bad, you don’t look like a man at least” !!!
Hope the ultrasound goes well today Funki, your oncologist sounds lovely.
Totally with you Jackie on the flowers. When I first got diagnosed I got sent so many bunches of flowers, I hated it, I was trying to stay positive and take it all in, and it reminded me that there really was something to be worried about every time I looked at them. It seemed like such a waste of money too, so I felt guilty for not appreciating them. I didn’t want to deal with them, they just upset me, infact I’m ashamed to say one bunch, which I’m sure were probably quite expensive never came out of the wrapping, though they did get shoved in a vase. Conversely last week some friends who we haven’t seen for a while found out about my cancer and sent a bunch, the note on the card was “something to brighten your day and let you know we’re thinking of you”, they really made me smile, I’m in a much better frame of mind to receive them now and the note attached wasn’t all doom and gloom.
Mandy, your friend with the food sounds fantastic. Sorry to hear you’re feeling pants today.
I went to get my Hickman flushed at the chemo unit yesterday, and decided to take the plunge and learn how to do it myself. I did it yesterday under instruction, I go in on thursday for bloods so will probably get another chance to practice then, and then they’ll send me home with all the kit to do it after my chemo on Friday. Considering how freaked out I was by the line initally I’m really pleased I’ve got to the stage where I feel I can do this.
Lovely sunny day here, think I’m going to get my arse off the sofa and take the dogs for a walk.
Hugs to all
Jo

1212

Hi everyone x missed a few days on here & wow what a lot of posts !
So sorry Funki you have certainly had a rough ride , so pleased you are ok , I had a gp receptionist who was very condescending & it’s really put me off ringing the surgery, hopefully u won’t need to ring that ward again but if u do don’t let her put u off , loved the faded curtains quote from Linda !!
Louise took me a second read to realise Brian Blessed was in your dream , thought you were doing well having a dinner party on day 5 then I twigged
AML I’m with you it takes me to day 10 to feel good again on both cycles
acid pee sounds dreadful !! Know it’s not pleasant but you can always wee in the bath or shower which will help the pain
Sorry so many are struggling with hair loss , must admit I really want my hair back how it was , i totally love my wig though , had to dash out mega rushed on the school run & shoved it on in seconds , wore it until 8pm & really getting used to it . However I still get emotional over it . My oh cried when he shaved it off but now isn’t bothered in the slightest altho he was reading the newspaper & had a large picture of a bald man on front page , he turned it in half & put the bald forehead on his head & asked everyone who is this an impression of !! Ha ha , just aswell I was having a good day but he still got the evil eye & two words far to rude to type but the 2nd word was " off "
Sarah , my daughter rubs my bristly head & told me she loves me even when I’m bald , it’s very emotional , she keeps asking me if I will be her mummy forever , she just needs that reassurance but first time she asked I was heartbroken
its day 14 & been ok apart from split sides of mouth , thank you Alison I’m trying that blisteze cream , I went on a huge shopping spree yesterday ( wig stayed in place even after many outfit changes ) but I’m tired today , watery eyes & feel a bit fluey so taking it easy
sorry Mandy you are feeling bleugh hang on in there & FB hope u get released soon
tale care everyone
Karen x

1213

Hi All,
Dog information - skip if a cat or non pet person!!!
I have to agree with you all (or those who’ve mentioned him) - my puppy is adorable. His name is Laity and he’s around 14 weeks old now - but the photo was taken when he was 9 weeks old.
It takes ages to go for walks as people just want to cuddle him. The pet shop can be quite time consuming too. He’s having a growing spurt at the moment (or about to) as he spent the last few days eating and is now sleeping loads. He’s flat out in the sunshine and has been like this on and off all morning so far. After lunch I will take him out to the park and exhaust him and hopefully he’ll sleep some more.
He is our first dog together - we both grew up with dogs, but haven’t had the opportunity to get one. This is the one good thing that cancer has done for me!!! My husband wasn’t too keen on a dog - but I managed to talk him into it (after 15 years of trying/nagging) in October (before I was diagnosed). We were going to wait until an opportune moment to get one and then this all happened and it seemed like the right time. It was important to get a dog my OH would like as he wasn’t too keen and this is why we have a spaniel - but I chose cocker (he’d have liked a springer).
He is my little ray of sunshine!!! Which is what it’s doing outside right now - I am hopeful to also get into some snow drop woods with the dog and my camera later on.
Hope all are well - and get released soon if incarcerated!!
Alison xxx

1214

FEC-T, FEC cycle 1, day 20
(Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals)

The rollercoaster of chemo seems to continue for so many of us. Really sorry that the cold cap doesn’t seem to be performing well for anyone. I thought about it for a long time, then decided I’d rather spend less time on the unit. Losing hair of any length is going to be tricky, but I must admit that I have enjoyed the freedom that a short crop has brought over the last couple of weeks in terms of quicker washing and drying. However novelty has worn off: thinning definitely all over now, and dread the “fall-out” in the shower. Like Amanda , there’s a risk I’ll be tempted not to wash it, just to avoid the inevitable. Hummmm. May need to opt for a shave sooner rather than later.

Lisa : sorry to hear that you’re not so comfortable. It took me a long time to find the right combination / position of pillows etc. after each of my ops. At least I was spared infection. Must be horrid for you. Hope it clears soon and that you can get some rest before chemo starts.

Funki : so glad to hear you’re back with us. I hope your onco appointment went well today. He sounds lovely. Seeing mine tomorrow. She’s also very caring, but I can’t see her shaving her lovely thick dark locks in solidarity!

Sandra : I hope cycle two went well for you and that you manage to avoid the dreaded N this time round.

Featherbird : hope they release you soon. Incarceration must be awful.

Alison : puppy is gorgeous (I’m a cat person – but couldn’t possibly skip over the post). I got myself two oversized rescue cats shortly after diagnosis (at the time I had been told that chemo would not be needed, ha ha). They keep me sane – well, relatively; get me out of bed and occasionally make me laugh. Wouldn’t do so well on a lead, I fear … that’s where puppies / dogs have an inherent advantage. Enjoy!

On the flowers front: my elderly father (still in shock from the news) sent me a small cheque the other day with a note. “I can’t be of any practical help, so at least let me brighten your days with flowers”… So I am. Friends have held back on flowers, so I am much appreciative.

Friends have actually held back on most things in fact. It seems as if they are coping less well than I thought they would. I spoke to one who lives abroad yesterday who said she was scared to email me with “trivia” – so hadn’t emailed at all. Trivia is exactly what I need! Just to know there is life beyond BC, no matter how trivial. Maybe I need to let the rest of them know how I’m feeling. I have found cycle one to be incredibly isolating. I don’t want cycles 2-6 to be the same. Apologies to all for ending on a “down note”.

Take care, stay well,
Gill

1215

Gill I know exactly what you mean on the friends front. I was dx on 28th Dec & this was the first year I didn’t get any ‘Happy New Year’ messages, phone calls or texts. For a few moments I was hurt, but when I thought about it, I totally understood. I made the first move doing the phoning/texting etc, and then everyone answered. I think people don’t know what to say, but there silence hurts more than their fumbled attempts at conversation. I’ve had to remind people that I’m still me, I haven’t changed and that the world doesn’t revolve around me and my bc, and that I still want to hear their niff naff and trivia.

Dyane
FEC 1/6, day 14, Antrim Area Hospital

1216

Gill, I set up a round robin email to let everyone know how it was going and tend to email when anything happens, i.e. had first chemo last week and so far not too bad. Then I go on to tell them how the pup is doing, what cakes I have made and other mundane stuff. I get recipes back and general chit chat. I asked what my friends and family thought of the idea before I started – perhaps this would be an idea for you. You can add on the first one that you are interested in what they are doing as this aids sanity… It also lets my friends now that my sense of humour is still intact.
Dyane, one of my friends texted ‘I hope 2013 brings all you wish for’. Funny – I don’t remember wishing for a bald head etc. Round robin text – be careful!!!
Alison xxx
PS - went to get the bins in and forgot I hadn’t got my hat on - I bet that scared the neighbours!!

1217

Thank you for all your support girls. Roll on a few more days so yucky might pass. X
Hugs,
Mandy
x

1218

FEC 1 day 7
Good to read all the posts - I didn’t get on line yesterday as felt so sick.
Mandy Im one day ahead of you and how you describe SE’s today is exactly how I was yesterday. I managed to get a change of anti- nausea tablets about 6 o’clock last evening and I started to feel so much better. Still have “jutzing” noise in head but can cope with it when not feeling like death warmed up. Nurse on chemo ward reminded me to write SE’s and exact dates in my diary because we soon forget the rough times when we start to feel better. Have also wrote note to self to start the “exlax” sooner next time.
Im still getting used to using my Ipad and at present haven’t got the hang of cut and paste so please forgive me not replying by name to you all. But be assured I do have your names and profile pics in my mind - in fact in many ways you all actually live with me in my rather tiny cottage! And you each come into my mind and I find myself pondering how things are with you.
My OH set up heaps of apps for me on this ipad and I now read ebooks, listen to my iTunes , look at photos of my family and even catch up on TV programmes. Oh and read a newspaper . How AMAZING is that! Gosh, nearly forgot, I ALSO use it to communicate with this wonderful new lot of “chemo sisters”. Perhaps it’s worth sharing with you that earlier in my life I was a nun in an enclosed order. The experience of having my head shaved a few days ago brought back so many memories of when I took my vows. The difference now of course is that it doesn’t represent my withdrawing from the world but in fact the opposite. - the journey to protect my life from harm.
Enough of my rambling. Sending hugs and thoughts to all valentines.
Tup x

1219

Alison your puppy is gorgeous , I’m a dog person , had a staffy, know they get a bad reputation but she was lovely ( 16yrs old now !!) had her from 6 weeks old , she had to stay with my ex so i hardly get to see her now, me & OH keep considering whether to get a dog from rescue centre but with us both working full time put it off , now I’m off it seems a good opportunity but not sure about what would happen when I’m better , my oh has OCD think he would freak with a dog he’s only just coping with a 6 yr old with toys & glitter Everywhere but we all love walking & sooo tempted to give a dog a good home , enjoy the snowdrops x

1220

Dear Mandy and Tuppence – hearing what you are going through yesterday and today makes me remember last Cycle. What nearly finished me off was thinking, do I have to go through this again next time and then the time after that? Just wanted you to know it will be a lot better. Take good notes for the Docs and remember what you do wrong this time, and it should be really different.

Tuppence what you said about the difference in shaving your head really got to me, I almost started to cry, thanks for sharing that with us!!!
Hugs XXXX Louise