Starting Chemo in February 2013: February Valentines

Public Archive
3441

Dear All
I’ve been keeping a regular eye on how you are all doing and am pleased to hear most of you are coming to the end of chemo. I would definitely agree that the effects are cumulative and feel sorry for those of you really struggling. I still remember it all to well, unfortunately.

Really sorry to hear you back in the waiting room, Sandra. I had a problem a couple of weeks ago, but after lots of stressful testing it has been put down to scarrng and poor healing. I hope yours also turns out to be benign too.

I went to see the consultant yesterday and the good news is that I don’t have the BRCA1/2 genes. I’m still sure that there is a genetic link so I think I will be taking part in a research project, looking for undiscovered genes. I still find it hard getting my head around the triple negative aspect of my cancer, although my consultant believes we have overtreated my type of cancer; I disagree. Now, I need to decide whether to have radiotherapy or a one sided mastectomy - I change my mind nearly every hour!

It’s been over a month since I finished chemo and most of those horrendous side effects are just nasty memories - it won’t be long before you are all in the same boat. Chemo has flung me straight into the menopause with hot flushes nearly every hour and lots of different aches and pains. My herniated disc is also now more of a pain since the end of chemo and, mentally, I’ve been up and down. Nails have turned white and black and some acid reflux is still there, but apart from that I’m feeling fine!

As I said before, I read your posts when the one and only computer in the house is free and am willing you on to finish the chemo journey as quickly as possible.

Thinking of you all,

Diane

3442

Kath I am with you on diary fetishes. I am truly sad in this respect and have been so for years. I even love the smell of new paper notebooks- no blog can equal the sheer sensual joy of a good diary. When I was little we were given one of the old Bronnley Soap gift boxes which were metallic green and about the size of a Bible on the church lectern- I used to pretend it was a storybook and read aloud from it. I started writing in bound noteboooks when I was 15- have kept it up ever since. These days I use an A5 filoflex holder with my week to view (prayer) diary on one side and a little clairfontaine notebook for ex tempo notes on the other- and the shopping list at the back for any ideas that might float into my mind while I am writing! I mark the last entry in the notebook with a blue tag, and I have other coloured tags for different strands or projects. That way I don’t get lost in what is in effect a journal. I have a NEW filoflex folder in Magenta for my obs, appointment notes and leaflets (to help me keep the spelling sane). No tags in that one yet. Now, I have acquired a hard-backed 192 page Clairefontaine notebook in which I am jottiing down all my family memories when I can’t sleep (as a way of getting me tired enough to sleep it does work) - this one has an index at the front and page numbers for each topic, as well as coloured tags. I have to walk swiftly past the stationery display in Waitrose- they have those cool notbooks by Cath Kidston with coloured pages! I need no excuse to visit the office stationers…which is where we are going this morning. With us both working at home so much we go there much more often then the pub. BTW greetings to all you Val’s from a little May Moonbeam and good luck in June! We are working hard to beat this sucker!

3443

In The Eye Of The Beholder?

Whenever you look in the mirror
are you bothered by what you can see?
A pimple, a blemish, or even dry skin -
or do you look flawless - maybe?

There are so many rules about beauty,
should we care about what people say?
Is it wrong to wear day cream at night?
Or even wear night cream by day?

Moisturize, moisturize, moisturize
the gurus all advocate this.
They think you have time by the hour,
I think they’re taking the p***!!

So as we get older dear ladies,
oh, don’t forget gentlemen too,
we do all we can to keep looking good,
and cover our bodies with goo!

Love Kath xx
Will post properly later.

3444

_ chemo 6, FEC 5, Day 10, and counting. _

I’m feeling pretty good today, but still keeping my eye on what emerges from nether region. Completed pooh sticks and sent them off. Hope there’s enough of a sample for them to get a (good) result.

My finger nails look as though they have been stripped. Very patchy. I can’t understand why, considering I only had one Tax. Toe nails are a bit cruddy too.

Yvonne, I hope your seroma draining is successful. Mine keeps swelling a bit, but not enough to make me want to have it treated.

Sandra, what can I say. Bad enough you didn’t get Emend on chemo number 5, but to find another lump. I hope it is benign.

Paula, it’s lovely hearing you being so upbeat. My tits are lovely thanks, one had a battle with a wood pigeon over the nuts - the tit won.

Gill, well done for reaching the car park. Can you see my walking stick leaning up somewhere? I don’t have a car and they wouldn’t let the bus in. I hope you begin to feel a bit better soon.

Diane, I’m glad you don’t have the BRCA1/2 genes, but as you say, there must be others - sadly.

Penny, I was drooling over the stationery section in our local Tesco this morning. I was very tempted to buy an A4 tabbed project notebook, but resisted. Now I’m getting withdrawal symptoms. Our spare room is full of folders, paper of all colours, and other lovely stuff. I’ll never use it all, but still keep buying more.

GET ME OUT OF HERE, I’M A STATIONERY NUTTER.

Pink bucket brigade were in our Tesco foyer too, I couldn’t NOT donate, could I.

Hope all have a good weekend - especially the lucky ones who have trips away arranged.

Love Kath xxx

3445

Just want to share my embarrissing incident! I went out to lunch with my family and one of my eyes was a bit itchey. I must have kept rubbing it and generally fiddling about with that area of my face while I chatted away through out the meal. It was only when we arrived back home that OH informed me I had rubbed out my eyebrow! My family had agreed to not tell me because they didn’t want to make me feel embarrassed . Goodness only knows what the other diners and the people in the High Street thought at the sight of this strange women with only one black eyebrow. O how I long for the day when I don’t have to draw on my face every morning.
Great poem Kath. Thank goodness beauty is in the eye of the beholder I say.
Hope all Vals enjoying the weekend.
Tup x

3446

FEC-T, cycle 6 (TAX 3) day 3

Diane : Lovely to have you still in touch and that memories of chemo SEs are fading (although not so good that the menopause has struck hard). Pleased to hear that you are not BRCA1/2, but impressed that you are going to join research project. A positive move to help yourself and others. Sorry that you’ve also got more decisions re. MX / rads etc. Difficult, I know. Take some time over it if you can.

Kath : glad to hear you are having a good day today and that pooh sticks are completed successfully. You will get the results you want, I’m sure. Great poem. Just made me think that I never put anything on my face until all this crap happened. Maybe I should have?

Tup : I’m reaching the stage where the eyebrows really need to be pencilled it (look distinctly like Disney’s Dopey these days). So your embarassing story is a lesson to me. I’ve aways been a face poker - maybe that’s why I never bothered putting anything on it before … but will need to avoid eradicating key features if I do go to all the trouble. I’m sure your family love you none the less for it!

Take care all,

Gill x

3447

GreatGreat poem Kath. I’m certainly covering myself with goo at the moment. Anything to disguise the Uncle Fester look! Was so glad to hear your tits are doing well :wink:
Tup, I’m very sorry to hear about your eyebrow incident and even more sorry to admit that your story made me cry with laughter. I came home the other day to find that far from erasing mine, I’d managed to spread it ‘Mr. Spock’ style up my temple! Oh how I’m longing for my brows and lashes to return. I miss them far more than I miss my head hair!
How are your nails doing everyone? I’ve kept mine thoroughly painted. Two base layers of strenghtener, two layers of black, topped with a less scary pearly purple. I’ve been oiling my cuticles and creaming my hands. My nails feel stronger than ever BUT they now really ache. It sounds strange but they feel tired like the rest of my body!!
Enjoy the rest of the weekend everyone.
MMM

3448

FEC3/TAX3 - TAX2 Day 11
Grrrrrrrr…still awake!
MMM x

3449

TAX 2 Day 12
Sorry you have had a sleepless night Mandy. This last cycle has been the pits hasn’t it. I did manage a few hours sleep but still feel completely washed out. Lets hope we can at least keep the finishing line in sight and drag each other over the last hurdles!
By the way I love your description of Mr Spock ! We should record all the incidents of humiliations that BC inflicts and write a comedy series for tv !!
Tup x

3450

Hi Vals just thought I’d check in. Hopefully, if all goes to plan I should reach the car park tomorrow. Feeling very nervous in case bloods not ok or delayed for any other reason and of course don’t want to end up in hospital again or have anything else go wrong! At the same time trying not to get too excited about finishing, still got rads and tamoxifen to look forward to and the worry about reoccurence and /or secondaries. Although I really want to brush this all behind me and make the most of whatever time I’m lucky enough to have to live life to the full!
Yvonne I can relate to your disappointment in your Mum, I have not seen my parents since Christmas, they do live 60 miles away but they make it to their caravan regularly which is at least 60 miles the other way. My Dads health is not good and my Mum says she can’t leave him but manages to go away with her friends. Whenever I’ve said it would be a good time for them to visit or offered to go see them they have a cough or sore throat and don’t want to give it to me, yet I do feel they are avoiding me, I could be wrong but think they find it hard to handle. Doesn’t help that my Mum always seems to phone on days 3 -5 of cycle, when I’m feeling low and has twice finished the conversation reminding me of a neighbour who had cancer of the ovaries, went through what I’m going through 3 times before they died. Grr, really not helpful! Thank God for friends and I’ve realised how truly blessed I am on that front :slight_smile:
Kath and Penny a life without notebooks, journals and pens is not worth living! It is not sad at all and I have repeatedly had to ignore my family laughing at my list making, garden journal, recipe journal, daily journal, story note book, holiday notebook, DIY notebook, craft ideas note book etc. etc. I cannot resist note books, Paperchase is my favourite shop and I cannot sleep until I’ve written in my journal and made a list of the things I want to get done tomorrow. We are planning on moving house and area from the beginning of 2014 and I’m already buying notebooks for all the lists and planning I will have to do for that:-)
Louise I hope you are feeling better now and I wish you weren’t so worried about possible future with MI5 that you aren’t comfortable joining us on Face Book. Take good care of yourself and I will keep checking in here to see how you and all the other non Face Bookers are doing xx
I hope you’ve foud the car now Gill, or if not that you do very soon xx
Great poems Kath, as always, bet you have loads of notebooks for them :slight_smile:
Tup I’m afraid the eyebrow story did make me laugh :slight_smile: I miss my eyelashes the most but eyebrows are a close second my face just don’t look right without bushy uncontrollable brows!
I only had 1 Tax before going back onto FEC and I used black nail varnish with bottom and top coats but still lost a toenail (the one next to big toe) and big toenail looking dodgey :frowning: Still, as have to stay covered up to avoid sunburn I don’t expect to wear sandles this year.
We have booked 2 holidays :slight_smile: first is a week in Devon at the end of August, proper seaside caravan holiday :slight_smile: The second is a cottage up near Skye at the end of October, hopefully I will have enough energy by then to walk up a slope or two! Very excited especially about the Scotland trip as never been at that time of year and the Autumn colours are supposed to be beautiful :slight_smile:
Hope all Vals not suffering to much with SEs and staying positive, hugs to all
Elaine x

3451

Notepad fettish - must be a girl thing. I love notepads and have a few of my own. There are the ones for saving recipes in, the ones for walks and bike trips… you get my drift. For my 40th I got a old fashioned photo album and made a scrap book of the year. I did a remarkable amout that year so filled it easily. Passed my PhD, got a new job, kids got married - it was easily filled. Cost a fortune in ink!!! Lovely to look back on though.
I have been getting excited about this all being over. I am hoping radiotherapy won’t be anywhere near as terrible as chemo so it feels like the end of the bad part. I know radiotherapy will take it’s time and be tiring - after all every day for 4 weeks is like a full time job!! I still hope it will be better. I plan on popping to the New Forest with the dog and OH for weekends away after treatment on Friday and would hate for this to be ruined by nasty SEs.
Me and OH were treated to an evening out by friends last night - and it was lovely. We had a pub dinner and a few drinks and they came back for coffee (and mad overexcited dog).
I have also booked my holiday to Kingsbridge in south Devon with friends tagging along too. I cannot wait. I have looked into things to do and we are going to do this: http://www.dartmouthrailriver.co.uk/days-out/combined-trips/round-robin
I am also going to treat myself to a new bike and camera. Exciting stuff. Not that I think I could sit on a saddle right now - poorly bum again. We looked back through my chemo diary (another notepad) and realised it flares up this part in the cycle each time. Only one more time left - I think I can manage it!!!
I hope all you lovely ladies are having a lovely hot and sunny weekend - we have been walking the canal this morning and it was lovely.
Alison xxxx

3452

I’m with everyone regarding stationery obsession. Being a teacher, there is always a lovely cupboard full of lots of colourful stationery regalia for me to stare at and rummage through - except when the stationery nazis lock the cupboard and then expect us to write down any acquisitions!

Alison - I love the New Forest too - especially to cycle around. We are still thinking about getting a dog, but don’t have much space so wondering if it would be feasible.

Elaine - Pleased you have nearly finished, and really hope the side effects from this last cycle are minimal. Like you, I haven’t seen my Dad and his wife since Christmas. He is in his 80s and is now suffering from poor health. He used to run ultra marathons but now can barely move because of a degenerative condition - it’s really sad. We going over to see him this afternoon but I’m a bit apprehensive about seeing him so incapacitated.

For those with dodgy eyebrow problems, I haven’t had any for about 12 years because of alopecia. So once drawn on, I brush on some ‘weather everything’ liner sealer - you can buy it from Debenhams. Although they can look a little shiny, they do stay on all day and don’t smudge.

Tup and Mandy - I’m willing you on to finish the chemo journey as quickly as possible.

Gill - Thank you for the kind words - at the moment I’m veering towards surgery…I think!

Kath - Fellow stationery nutter here too. I used to go to WHSmiths to buy their entire stock in late August so that my children were ready for school - lots of ‘just in case’ items too that probably got lost or were never used…so sad!!

I’m back to work tomorrow after this half term holiday. Wishing you all well for the coming week.

Diane xx

3453

Hi Valentines

I’m in absolute agony with mouth ulcers, have tried gargling salt water, bonjella & now on difflam mouthwash, which has been the best of the 3. If anyone has any tips/advice please fire away as I’ve been reduced to tears by them. Eating, drinking, talking all too sore to want to do, yes it’s that bad! Thankfully this is not something I have ever experienced before, & I hope to God, I never do again.

Hope everyone else is fairing better than me.

Love to you all

Dyane
FEC 5/6, day 12, Antrim Area Hospital

3454

Diane,
I am so sorry to hear of your pain. My leaflet says to go to the hospital if mouth ulcers stop eating and drinking - do you have an emergency number you can get someone to phone for you? The hosptial can probably prescribe you something much stronger and give you antibiotics to stop any infections. Infections in the mouth are treated seriously as they can lead to blood infections which are life threatening. I would sort it out ASAP.
I hope you feel better soon
Hugs Alison xxx

3455

Good advice Alison. Hope you get it sorted soon Dyane, sounds terrible for you. Hugs xx

3456

Thanks Alison & Elaine, I’m going to give it to tomorrow & see then. I’m not one to make a fuss, so put it off until I’ve no choice. Difflam & pain killers have eased it slightly but not enough to be able to talk comfortably. Hopefully by tomorrow there might be some improvement, fingers crossed.

Dyane

3457

Ohhhh! Dyane, your mouth sounds really dreadful. I’ve had a couple of days where mines been too sore to be bothered to eat or talk but nothing like yours sounds. Do get hold of some professional help, there’s got to something to take the pain away did nothing else.

Thanks for the advice about the eyebrow sealer Diane. I’venever heard of such a ting and am going to look for some tomorrow. Makeup is the one thing saving me from staying in bed all day or wearing a paper bag on my head. Now, don’t get me wrong, even with a full face covering I’m no oil painting but at least it gives me something to hide behind!

Well done on reaching the car park Gill, and all the best to you tomorrow Elaine. Those of you who are already there, make sure everybody parks pretty so that there’s room for the rest of us ;-).

Yvonne, buying chocolate in Manchester sounds much more exciting than buying clothes to me too.

Hope the side-effects are still holding off Paula. Apart from lack of sleep and the horrible taste in my mouth I don’t seem to be doing too badly this time. I feel like a very small child who keeps falling asleep and getting grumpy if I don’t get my afternoon nap.

Your allotment sounds fantastic Chris. I’d love to have one but don’t think I would ever be able to make anything grow. I’m just not patient enough. I have however spent the afternoon planting lots of things in my garden. I bought some growbags and a friend has given me tomato plants. We do have a small pretend sort of greenhouse and I’ve put them in, hoping that something will happen. My biggest problem is I forget they’re like babies and need looking after. I also have a bean plant and two courgette plants which I have put in large tubs hoping that I’ll be able to harvest some sort of crop in the near future.

It’s lovely to hear people making holiday plans. Devon and Sky are two of my favourite places. We spent many happy holidays in Salcombe with friends when our children were young, so Kingsbridge is a familiar haunt of ours. My brother’s church have a property on Harris and Lewis and we go up there whenever we can travelling by boat from Sky.

Right, I’ve rested enough now, time to go back in the garden and do a little bit more potting up.

Take care everyone.

MMMx

3458

Diane, that sounds just like me when I had my one and only Tax and was rushed into hospital with zero neuts. They gave me a mouthwash called Caphosal, which had two parts to it. I had to mix the two parts together, then swill, gargle and spit. Pain was in my throat and up to my ears when I swallowed as well. It didn’t taste too bad, which was just as well as I had to use it four times a day. It worked though.

3459

This is my diary entry for today:
"Yesterday we stripped the beds and washed the bedding. Today I hung it out and we washed some clothes. I hung that out too, as the bedding had dried. All the rest dried too.

Weather has been warm so sat out for a while. Had tea out here too, in fact we are both using our iPads out here - how cool is that? Typing this diary while outside too.

A little Great Tit keeps coming down to the nuts hanging on the bird feeder. Every time one of us moves, it flies off!! What a lovely day."

how sad is that? I’m sharing my diary entries with you now!!

love Kath xxx

3460

Hi all x
just wanted to wish Elaine good luck for tomorrow x
Emotionally im a bit brighter , my party has kept me busy !, my main se is my aching legs & I’ve realised I’ve got a really bad posture suddenly developed a stoop ! Not good, other than that I’m not sure what’s a se or hangover related so next week will be able to judge better.
its my daughters birthday onwednesday , she will be 7 , family party on Wednesday then a pamper party with her friends on Sunday so more party planning this week !
i really miss my eyelashes , tried false ones on Friday but my eyes watered so much the glue congealed & looked like I had conjunctivitis so I took them off !
i would normally be having chemo on Tuesday it’s such a nice feeling knowing my good week will continue onwards !!
hope everyone has had a lovely weekend
karen x