Starting Chemo in February 2013: February Valentines

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1521

FEC-T; FEC2 day 8

Jackie that stinks, hopefully having had the GCSF injections might mean that your neuts bounce back more quickly… here’s to a quick escape and you feeling better ASAP.

Elaine , what a nightmare to have all the eye stuff going on at the same time as chemo, as if you didn’t have enough stress. DVLA sound to be being very unreasonable.

Love the sleep fairy poem Kath. The sleep fairy did visit me last night and I slept much better, unfortunately she seemed to be neglecting my son, he was quite disturbed, until around 5am he just couldn’t be comforted, and I ended up spending the rest of the night on his bedroom floor, my hips really ache this morning.

Lisa , hope the your first night after chemo wasn’t too bad.

Chris good luck for today, number 2 at last, when I went in for my delayed number 2 last week I was almost excited after having had to wait for it, think I’m going slightly mad

I’m quite proud of myself this morning, I just flushed my hickman for the first time unsupervised. I was so scared of the line when it was first put in that I never thought I’d get to the stage that I was comfortable enough with it to flush it alone at home, but it was so easy I don’t know why I was so worried about it, much better than having to go to the hospital once a week to have it flushed.

Hugs to all

Jo
x

1522

Oye Jackie, so sorry love but I hope youre not thinking of keeping that bed warm for me because you can b...g..r off. IM NOT GOING.Take advanatge of being waited on. xxxx

1523

Oye Jackie, so sorry love but I hope youre not thinking of keeping that bed warm for me because you can b...g..r off. IM NOT GOING.Take advanatge of being waited on. xxxx

1524

Btw, just a thought, did they reduce your dosage because they have with me said for this very reason. ?

1525

Hi All
I’m feeling fine (day 12 of TC) although I’m still going strong on the period front. In a week or so time, it’ll be two months – wonder if I’m on for a world record? My only other difficulty is a herniated disc which was a slight problem before all this started. Otherwise, I’m really hoping that all of you suffer less on the TAX regimen.
Lavendersun – I’m very sorry you are back in hospital. I really hope they sort out your neuts quickly.
Annabelle – I’m glad they managed to get blood this time – I’ve had a similar problem. In the end the nurse just walked away and I had to wait ages of a doctor who had not difficulty sucking the blood out of me. I, too, use a sleeping pill occasionally – zopiclone and my onc is fine with this.
Xmaseve – I’m glad no. 2 is on the cards – hoping it all goes smoothly with minimum side effects.
Alison and Lisa G – I’ve had similar problems although someone in another thread mentioned proctosedyl could help.
Funki – Those pillows sound great – sleeping in a more upright position might help with my acid reflux.
Kath – Great poems over the last 2 days. Do you any spring/summer poetry. I love the sun so much and can’t wait for the weather to warm up!
Elaine – I’m really sorry you have this extra stress. Having other ‘major conditions’ as well as BC is really cr*p.
Linda – You are so right – dignity has flown out the window and everything is on show.
Karen – Hope today is better for you. The steroid dose does increase with TAX. I have to take 8 on the day before, the actual day and the day after – ensuring the second dose is not after 2pm. I also took mine straight after food with milk as they irritate my stomach.
Halo B – Hope your TC side effects are minimal.
Trying the word document copy and paste method as this appears easier to edit than typing the small ‘add a comment’ box.
Hope everyone has a good weekend. I’m going to be working over Saturday and Sunday - seemed like a good idea at the time…

1526

FEC1 day 16

Morning valentines,

Tuppence , are you ok? Not heard from you in a while. Will PM you.

Ohhhh Jackie I’m sooooo sorry to hear you’re back in Stalag. Here’s hoping they get you sorted quickly this time. Big hugs.

Good luck Chris and Annabelle for today. Keep Calm and Chemo On.

Welcome Val (I know you’re Karen but my chemo brain won’t get you mixed up if I call you Val - don’t think we have a Val yet but if we do please forgive me, I need to update my Valentine’s data base!)

Glad yesterday went well Lisa. Try to rest as much as you can over the next few days. I think I carried on as normal a bit to much over days 1-3 and ended up feeling very rough all the following week. Round 2 next week and I’m going to play it much more steady.

Thank you so much for the sleep fairy Kath. She really did her stuff - got a full 7 hours last night and feel a lot better for it.

Featherbird , you can now consider yourself one of the great Gremlin warriors having found a way to beat the little blighters. I couldn’t abandon my lovely new toy (iPad) 'though so I got OS to show me how to keep both ‘notepad’ (which saves automatically as you minimise it) and ‘Safari’ open so I can skip between them to read and write,then can copy and paste. I’m quite proud of myself, as an oldie, for getting to grips with new technology.

Jo congratulations on your flush! have PM’d you re Sheffield.

Hope I haven’t missed anyone who needs special TLC today. I’m going to update nay data base later today so I can catch up properly with where we all are.

I’m off to a Macmillan coffee and pamper morning at the local hospice soon. It’s being held as a fund raiser and ice breaker for ladies undergoing chemo. Wish it wasn’t at the hospice but that’s just me being silly. Hey ho am going 'cos I want to be sociable.

Hope you all have a good day.

Xx

1527

Oye Sue
Now thats not in the spirit of things. I did see the bed next door with your name on it but told them they’d have to drag you in kicking and screaming.
At least Jo was nice to me. LOL.!!!
On a serious note hope you are all feeling ok SE wise.
The doctors here have been fantastic this time round.
J xxxxxx

1528

Hi,
Can I just say how much help this thread has been for me as I started my chemo (3 xFEC 3 xD ? Unsure of spelling but I think you call it TAX?) on the 19 Feb. I’ve just had my 2 nd session on the 12 andante although I breezed through the 1st session I’m now really struggling. I feel so low emotionally and so so upset about my hair falling out. I’ve obsessively read others threads about cold cap etc and it seems that everyone is so different no one can really tell who will lose their hair etc. I have been using a cold cap and my thin hair I has already really thinned. This is the hardest thing about the horrible chemo.
At this precise moment I’m not sure how I can go on. I’m 36 and had started thinking about having children with my new partner. I sadly lost a partner 4 years ago and thought this was finally my time for happiness but sadly it seems not. My partner is so supportive but I can feel myself pushing him away. Who wants a bald sick girlfriend!!!
I thought I’d had my bad luck so feeling very angry with the world right now and can’t see anyway out of my gloom … Any words of wisdom?
Lucy x

1529

Hi Lucy, welcome to the BCC forums where I’m sure you will find lots of support and shared experiences from your fellow users

In addition, our helpliners are on hand with a listening ear and further support so please feel free to call for a chat, it may help to share with someone in confidence. Lines are open 9-5 weekdays and 10-2 Saturdays on 0808 800 6000

The following link will take you to the ‘Treatments’ section of the website, here you will find lots more support ideas such as our ‘Headstrong’ service along with publications about hair loss and the treatments you are undergoing:

breastcancercare.org.uk/treatment?utm_source=Homepage&%3Butm_medium=help_you&%3Butm_campaign=treatment

Take care

Lucy

1530

Hi Lucy,
Are you in the Younger Breast Cancer Network on Facebook? I have found it to be really helpful as well as these forums as there are a lot of people on there around our age facing the same things, and I’ve found that just knowing that I’m not the only one going through it has really helped.
I’m 32 so understand what you’re going through with the kids thing, I found out I was pregnant with our second child the week before I found out I had cancer, after trying to get pregnant for a year. After a lot of soul searching we ended up having an abortion once we got my pathology results back. The loss of that pregnancy and the likelyhood that we won’t be able to have another child in the future is the thing I’ve struggled with the most throughout the whole process since I was diagnosed before christmas, and we already have one child, if we hadn’t had any yet it would be even harder. It’s shit, but it’s the hand we’ve been dealt and we just have to get on with it.

I also find myself pushing the other half away, but I just have to remind myself that he does love me, and make myself stop doing it (often easier said than done).

Hugs

Jo

1531

Jackie, sorry to hear you are back in. I have a feeling of DeJaVu today after going back up the hospital to see the doctor and being sent home with tablets (all to similar to last time). I am not bothering unpacking my o/n bag this time. I hope your stay is a short one!!
Elaine , I would get a complaint letter off to DVLA about your treatment by them. Also contact your MP about it – make as much fuss as possible so they know not to mess with you. If they messed up the first appointment that’s their fault and you shouldn’t be made to pay for it. Make sure you point out their short comings in no uncertain terms and that if they had not messed up you wouldn’t be in this situation. Explain the importance of the hospital appointments – and if possible get your doctor to write to them too. They may have policies – but if they hadn’t messed up you wouldn’t be in this position (I am going to Rant Rant Rant on your behalf). A good well written letter to the correct person may just swing it for you – I would hate you to lose your licence because of unfortunate circumstance and not medical reasons. Go get them!!!
Oh Lucy , I so feel for you. I wish I could wave a wand and make everything better for you. I am sure your OH is not at all bothered with your lack of hair or low days – my husband certainly doesn’t bother about it. Why not sit down and tell him how you feel and let all that pent up emotion out. I am sure he’s keeping his concerns in too – none of us want to upset other people and we don’t do ourselves or our partners any good bottling it up. I would give you a big hug if you were here – you’ll have to make do with a big cyber hug instead. I don’t know if my words are wise – but I do hope you are feeling more yourself soon xx.
On me bum – back to the pooing razor blades this morning. My OH stayed home and we phoned the hospital to see what to do. We were told to go up and have it checked. They are not totally sure what it is but have given me lanocaine and immodium to hopefully stop the pain and the frequent going. I have to keep an eye on it (not sure I’m that flexible) and go back if it gets infected. Having a quiet day on the sofa now with the pup chewing on a pig ear – it’ll keep him going all afternoon I think.
I hope everyone has a good weekend and don’t get washed away by the terrible weather.
Alison xxx

1532

Jackie - that really sucks. Swear and rant away. Fingers crossed they let you out sooner this time, and that they get to the bottom of why it’s happened twice and even with the injections.

Jo - I am so sorry to read your post in answer to Lucy. That must have been the worst time ever and made me cry just reading about it. The biggest cyber hugs on their way to you. xxx
Well done for flushing the Hickman though. Another skill to add to your CV!

Glad you are feeling fine Diane. I have disc problems too and wonder how it will react to Tax.

Hope you enjoyed your coffee and pamper morning Mandy. Sounds just the job. I understand what you mean about it being at a hospice. The physiotherapy classes I was supposed to go to were at a hospice and I felt a bit nervous of it.

Welcome to the Valentines club Lucy. I can’t imagine how you must feel, but you say your partner is very supportive, which is brilliant. If he really didn’t want a “bald sick girlfriend” he wouldn’t be so supportive and would have shown himself by now. He loves you, and that is all that matters, and you won’t be bald and sick forever. I hope you feel more like your old self soon. xxx

Alison - keep on taking the tablets and stay out of Stalag. keep that bum clean!

Love and hugs to everyone xxx

1533

This one is just for you Penguin.

Summer Dream.

Hot dust on well worn paths;
Crickets chirrup in the grass.
Lime blossoms heady perfume
Signal that once again it’s June.
Shoes cling to melted tar;
Ice-cream bells chime from afar.
Rose weeps petals, droops her head
Kisses Lavender in her bed.
Swifts swoop and soar on high;
Welcome Swallows to their sky.
Swans pause mid-glide to preen
Like cloud pictures from a dream.
Cheeky Sparrows seem to laugh;
Rolling in their dusty bath.
Watched by Cows with sleepy eyes
Chewing cud and flicking flies.
Tide ripples as it turns;
Browing skin blisters and burns.
Beaches glimmer in the haze
Crowded full on Summer days.

Love Kath

1534

Hi all x day 4 Fect round 3
Wasn’t going to post today as still feeling rough but after reading Posts from jo & Lucy my heart just goes out to you both xx
Jo that must’ve been such a difficult decision to make one just adds to the heartbreak this ordeal brings , I’ve had to come to terms with only having one child although not as distressing as yourself & I bet you treasure your little one even when he does keep u up all night xx
Lucy, ,i was a single mam for 4 years after a very unhappy 12 year marriage , im 41 & two years ago met the man of my dreams , proper love at first sight! , he loves my 6 yr old daughter & last year we moved in with him & had the happiest year of my life , fantastic family holiday, saw the Olympics etc then my world fell apart on Dec 11th when I was DX . I feel like am I not to be happy on my low days & like you think my oh would rather be with a pretty, healthy woman . I cried last night those exact words & he is getting used to me now on my low days ( usually day 3 ) & a big hug & a few words of care put me right , it’s better to let him know how you feel , my oh is not overly emotional &its helped him knowing the steroids & stress of this can make me have the odd wobble . Still find it hard to look at my holiday photos when I was sooo happy but oh says we will be making happy memories next year & will be stronger together cos of this , not sure I can help but your definately not alone in your feelings xx
As I’m here sorry Jackie you are back in the clink & Chris pleased you are getting somewhere ! & Elaine I’ve just cancelled an eye test for my lenses as I don’t feel my eyes are in full working order so I can’t imagine the stress you must be going through & like others said it sounds like you’ve had a right jobs worth ! Ring back in a strong day & try to get another appt that suits you
take care everyone
Karen ( laughed at your comments Linda !! )

1535

Poemsgalore - absolutely love it! So many of my favourite summer things!
Now, I can’t wait for my summer days, walking and cycling in the countryside, going to the beach…
Thanks for making me look to the future rather than dwelling on the present.
Diane xx

1536

Thank you Jackie, I am feeling a little fluey ish, but upbeat today. Sure hope you`re back ontop soon.xxx

1537

Lovely poem Kath reminds me of childhood summers especially the melted tar 1970’s summers were fab !

1538

Hi Valentines
Thank you for all the words of encouragement after my rant yesterday.
I have known about my eye condition for 11 years now. I was sent for tests after an optician noticed some pigment at the back of my eye. No one told me what they were looking for and I went to get my results oblivious and alone. I was given my results by someone who was not qualified to answer any questions he told me I had Retinitis Pigmentosa and I should stop driving until the DVLA had confirmed it was ok to continue as I might be going blind, he told me the specialist would answer any questions but I would have to wait a while as they were very busy. Well you can imagine the shock (very musch like the day you were told you had cancer) but can you imagine having to wait indeffinately to get questions answered?
A week later I found out I was pregnant. I spent most of the pregnacy worrying and having appointment after appointment cancelled due to “unforseen circumstances” a year later and 3 months after my son was born I had my appointment where I was told there was nothing more they could do and nothing deffinate they could tell me about my condition! Since then I have considered myself lucky that the DVLA have insisted on regular field vision tests and have not had reason yet to say I shouldn’t drive. Not everyone with my condition is so lucky.
I spoke to an optician friend a few weeks ago who said that there is now progress being made with gene therapy and that trials are now showing the progress of the tunnel vision can now be halted but not undone by injecting a virus into the retina to kill the gene causing it. Not something that can be done while having chemo! Timing sucks!
I went out to Rock Choir practice last night and some of the ladies there advised me to phone DVLA today to see if I got someone else on the phone which I did. A lovely lady answered and was very apologetic and said it was because they are only allowed to keep cases open for a set amount of time which they had already gone past, so they have already given an extention due to their mistake. She explained I would just need to ask them to close the application and re open a new one, which would mean I’d have to fill in a few forms again and might not be allowed to drive while it is being sorted but if then had the test and was ok., i would get my license back. Phew! Sorry for the long tale but really helped to type this!
Lisa I hope you are feeling ok today and SEs are behaving xx
Many and Karen I hope you are feeling less down now xx
Funki I hope the Diclofenac worked and you are not in pain xx
Chris I hope you got through nd chemo ok today especially after your unwanted delay xx
Jackie, I can’t belive you are back in again! That really sucks. Let us know if you want me to bake a cake with a file in it! xx
Lucy you have reasons to feel low but please remember the chemo makes you feel more low, unable to cope or conect with peaple and like you’ll never feel better during the first few days of each cycle. You will feel stronger in a few days and more able to cope and deal with things. Hugs xx
Jo your post reall got me! Massive cyber hug! And pat on the back for flushing your hickman! Well done! xx
I too am sad to say I have joined the sore botty brigade . Germaloids 3 in 1 helps as does andrex washlets and good ol’ Aquaeous cream!
Keep those poems coming Kath! Each one paints a picture in my mind. Beautiful! xx
Hugs to all
Elaine xx

1539

Fec T
Fec 2, day 16

Enjoying the good days I’m having, while building up to Fec 3.

Paula, love the idea of you making a ‘scrapbook’ of my poems. I hope they are helping you along the way. Especially now you are (whisper)losing your hair(whisper).

Karen 2, have to call you that so I don’t mix you up with Karen 1. Glad you have made yourself known, there may already be a lot of us, but every little helps to quote a certain retailer.

Chris, good luck for tomorrow, hope the sleep fairy is still sitting on your pillow so you get plenty of rest before treatment. I always think that every hair shed means another cancer cell killed off, dead!!

lavender, a woman after my own heart, I can swear like a trooper when I want or need to. This damned disease is enough to make the new Pope swear. Sorry you are locked up again. Hope you have plenty of large sheets for escape.

Jo, glad the sleep fairy paid you a visit, maybe she ought to bring a friend for your son.

Lucy, so sorry to hear of your situation. Advice, yes, please don’t push OH away. He wouldn’t be there if he didn’t want to be, so he must love you. Lots.

Hope the sleep fairy visits you all tonight, sounds like we could all do with a good night.
Nobody said they would like a spooky poem, but I’m going to put one on in a seperate post anyway. Don’t read it just before bedtime, it will scare all sleep fairies away.

Massive big hugs to all.
Kath xxx

1540

Wuthering Heights

Heathcliff-like, you haunt my dreams,
central force of all my schemes.
Each decision carefully planned,
manoeuvred by your guiding hand.
Seeds you scattered long ago
only now begin to grow;
germinating slowly first,
unfolding with an unquenched thirst.

Across the barren wasteland calling;
as the burning sleet is falling;
Kathy walks with silent tread
through the lowlands of the dead
where ancient ghosts with hollow eyes
search the endless, sullen skies
and icy fingers pierce the skin,
trying to reach the soul within.

The air is filled with Ravens’ cries
and jilted lovers mournful sighs.
Their bitterness will not be shaken,
nor their torment be forsaken.
Call your Kathy from her cold
and wasted, moorland road.
To Wuthering Heights, bring her back home,
no more these twisted paths to roam.

Out onto the frozen moor
where deep snow lies and north winds roar,
Heathcliff passes through the vale
with eyes so black and skin so pale;
as kathy waits beneath the Elm,
to welcome to her lonely realm
the one whose love she once rejected,
who now her heart shall keep protected.

When the day is quiet and still
look out towards the heathered hill
just as the Sun is going down
and shadows swathe it like a gown.
Two lovers walking hand in hand
across the shimmering, whitened land.
Where they are going, no-one can know -
they leave no footprints in the snow.

love, Kath xxx