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Marvellous Marchies 2012 Moving on

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Re: Marvellous Marchies 2012 Moving on

Liz,

Just seen yours! Good luck, Chick - you'll be feeling much better in a few days! I just used to have a bit of light tea and then go straight to bed and sleep it off till next day. Worked pretty well usually. Just felt like terrible hangover on day 2.

Keep your pecker up, honey - it will pass!!

Nicolette xxx.

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Re: Marvellous Marchies 2012 Moving on

Hi there Marvellous March ladies!

It's good to know there's company out there! This is a recurrance for me, as already had WLE, axillary clearance, chemo (FEC x 8), radio, herceptin and Tamoxifen nearly 5 years ago. Luckily just small local recurrance under my arm with no spread - phew! Have had 2 further surgeries and now about to start chemo again on the 30th March (9 days before my big 40th - bummer!!). Still a bit new, as having Tax x 6 this time! Will be followed by radio and tamoxifen again, too.

I just wanted to encourage you, too, by saying it is totally doable! Yes, knackering and horrid, but you feel amazing when it stops and you start to feel better!! I had a 2 year old and a 3 year old and was on my own during the week (hubby trying to close down business in Spain - long story!), and I managed with a little help from my friends! We'll all get through it and be proud of ourselves for managing!

New challenges this time as I have a baby girl, 6 and 8 year old!!! SHould be interesting!

Wishing you all lots of luck and minimal side-effects!!

Nicolette xxx.

Historygirl
Member

Re: Marvellous Marchies 2012 Moving on

Hi All

What a huge thread! What a lot of us March bunnies there are!

I had my first chemo on Monday (EC). I think I've been pretty lucky with the SEs so far with fatigue combined with sleeplessness the worst it's been. Just been out for five minute walk and feel like I've climbed a mountain.

I was diagnosed in January and then within days they discovered I had secondaries in my lungs, so I'm obviously worried about that - but I've gone on about that on other threads here endlessly.

I was lucky in that my hospital bombarded me with anti-sickness drugs and, so far, they've worked although I'm now reaching the point where I only have one type left to take. Not so keen on injecting myself in the stomach to keep the blood count up but the thought has turned out to be much worse that the reality.

Sorry this is a bit rambly.

Hugs and minimal SEs to all!

D x

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Re: Marvellous Marchies 2012 Moving on

Thinking of you today Liz, the medication should be fine just remember to drink lots and take tablets religiously. Hopefully Imodium wont be needed either.

Carolyn

EBHippo
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Re: Marvellous Marchies 2012 Moving on

Hi All

Just put on a really long ramble and its not there, wont repeat in case it appears in a bit. All set for today but petrified..

Was told not to take immodium as it has magnesium in which affects the fec. Was also told I couldnt have Emend even though I explained I was phobic about being sick, was told I had to have normal medication and see how bad I was then they might review the situation.

Pineapple chunks in the freezer, ginger biscuits and fig rolls stocked up with tins of prunes and lots of bottles of flavoured water.

Am wondering if the hospital may ring and say its all been a big mistake and I dont have to go this afternoon. 5 hours of normality left.

Love and hugs to all - Liz xxx

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Re: Marvellous Marchies 2012 Moving on

Morning ladies

Catching up on late posts from yesterday.

Di fingers crossed for you I think sometimes it's easy to read the worse possible I to things so fingers crossed and hope for they are being overly cautious are overreacting. Take friday one step at a time and at least then you'll have started the chemo. As for feeling crap we all go through it, I'm a strong person but I remember New years eve hitting me like a sledge hammer and at times just like you wanting to tell anyone just to p**** off in a loud and rude voice. That's what we are all here for to share and rant and rant more.

I had my hair cut yesterday a usual 4 weekly trim and my hairdresser whose also a friend I've known for 15 years said she can tell I've started chemo as its lost it's shine and bounce and she's right don't know about anyone else but it feels like straw. Oh well.

Ah w359 that's exactly how I feel miss school dreadfully I'm now getting paranoid that I won't be given a class as well. Talk about sap confidence when I've visited a few times it's
been weird and trying to dodge children when I go in is even stranger. Same
as you I finished the week before Christmas so June/July is an eternity. Probably doesn't help that I don't particularly want to back in the same year I left I was teaching 6/7
year olds but got switched to that after 7 years of 11 year olds so definitely want slightly older children then it was announced yesterday deputy head is retiring so even more change., and you know us teachers we hate change!

Well I suppose I should Hoover as its sitting in the hallway waiting and pleading to be used. Maybe after Homes Under the Hammer then a bit of Phil and Holly, now can I take the excitement.

Love to all and big big big hugs to those who need them

Carolyn xxx

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Re: Marvellous Marchies 2012 Moving on

Thanks all for your support and comments. As you can imagine, I'm feeling very low at the moment - actually in tears now.
Things keep going through my mind, the main one is "how long have I got". My OH has diabetes and we were just saying yesterday, are we going to live to see our grandchildren (not got any at the minute).

I really don't know how I feel - everyone keeps telling me , you're very positive, you'll beat this, and particularly my mother saying, ooh you're very brave! Am I callous, I just want to tell everyone to ******off! Leave me alone!

I'm going right back to my dx, why couldn't I have found the lump earlier, why didn't it show up on the mammogram a year earlier. All these questions are going through my mind. OH has been brilliant though, but it's really hard for him too. Haven't told my immediate family yet about the results, just that chemo is delayed to Friday. I suppose I'll have to tell them.

Sorry for the rambling post. I have to get my brain in order - just carry on. Ooh Homes Under The Hammer again! I'm addicted!! Lol!
I've got Robbie the Robot vacuum cleaner rolling around the hall at the minute, better go and empty him!

Thanks again
Hugs and xxx
Di

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Re: Marvellous Marchies 2012 Moving on

Thanks for your lovely welcome ladies 😃

My head/heart is on a bit of a roller-coaster at the minute. One second I'm thinking "YEAH! BRING IT!", and the next I just want to curl up in a ball and wake up when it's all done.

I've been writing down a lot of questions for the Macmillan nurse's home visit tomorrow - I think I'm going to bombard her a bit, but I guess that's why she's coming!

---

waiting too - I didn't think of the nausea like morning sickness before! I'll make sure I take the tablets, and make sure I drink lots of fluids.

berylS - I'm going to head out of PoundStretchers in a minute - I'm sure I saw some aqueous cream there hidden on a shelf! I've also heard they've come some "buff" type head scarves for a pound!

Carolyn1709 - I miss school... It's strange, but I just miss teaching. I've been off since December (well, the Christmas holidays really), and I've already missed half a term. I bet when I go back I'll feel like an nqt again, not like the hod that I am!!

Patchit - yep - the wound's completely healed now. No dressing, just a quick spray of iodine over it every day. Such a relief. They packed it to make sure that it healed from the inside out, and that hurt so much every few days!

Parsnip - I've got visions of someone stealing the hat/scarf off my head as I walk down the corridor...

Di - I echo what KC said about the bc cells still being bc cells. I'm still waiting for the results of my CT scan...

---

W359
x

megsmum
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Re: Marvellous Marchies 2012 Moving on

Morning hope you ladies who have started treatment are doing ok, i have been told i have to inject myself after chemo to help with bloods, i cant remember what its called is anyone else having it x

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Re: Marvellous Marchies 2012 Moving on

Morning everyone and a special message for Di

I agree with what as already been said and know of someone who was virtually in the same boat. I think she is about 6 years on now and a very good friend of my sister. She had chemo rads and the tablets and is doing fine. Sounds like a very good talk with your Ochologist, as soon as you can, will help get things back on track.

Thinking of you and more big hugs.

Love Beryl X

Off to the wig shop today and see if I can get the right colour wig.

Care_N
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Re: Marvellous Marchies 2012 Moving on

Di, I can't add anything to what has already been said, but just wanted to send a really big hug. Thinking of you.
Caren
Xxx

Patchit
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Re: Marvellous Marchies 2012 Moving on

Hello Di

I wondered how things were going for you.

As KC has said, its good that these areas have shown up on your scan. Your treatment can be pin-pointed exactly to where it needs to go, especially the rads. The chemo will mop up rogue cancer cells, no matter where they are. Its a shame your onc is away at the moment, but may be you can make an appointment to see them once they are back at work?

I suppose that if the hot spots were in your lymph nodes or axilla (like many others on here), you would still be having the same treatment as you are having now, wouldn't you? Is it that the registrar has told you that it is inoperable that is particularly worrying for you? It seems a bit of an insensitive thing to say and also that situation would be way down the line. You have your chemo and rads to go through first, which are excellent treatments, as we all know they have saved many lives and got rid of many ladies cancer.

There is no reason to suppose that the rads and chemo wont work because you have these hot spots in your chest area rether than in your lymph nodes / axilla. Chemo and rads work well for many many ladies.

Try not to panic, to keep things in perspective.

Thinking of you and sending lots of love and a big hug

Joan xxx

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Re: Marvellous Marchies 2012 Moving on

Hi Di

Loads of hugs for you - just the news you didnt want but the chemo will mop up the rogue cells wherever they have run off to. They have to tell you the worst case scenario but there's lots of ladies for whom the chemo works so lets hope the same will apply to you.

Good luck starting chemo Friday.

Twinky x

Lucy_BCC
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Re: Marvellous Marchies 2012 Moving on

Hi

I am posting the link to our 'Headstrong' service for anyone who is interested:

http://www.breastcancercare.org.uk/breast-cancer-services/talks-courses-local-support/hair-loss-advi...

Best wishes
Lucy

Kitcat
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Re: Marvellous Marchies 2012 Moving on

Hi Di,
Very sorry to hear this news and hope that the treatment you'll get will eliminate the hotspots.

I had a CT scan last week which showed up what could have been a problem under my arm but which was deemed to be scar tissue from the op, however, it gave me some concern and I'm still not sure whether a nurse was qualified to decide exactly what it was.

The best thing about your situation is that this has been discovered now and treatment can be targeted, particularly rads in exactly the right spot and chemo seems very effective in mopping up rogue cells so hope it will do that as it goes for the other bc.

I remember my oncologist saying that if the bc cells went to another part of the body they were still bc cells and should respond to the chemo I was getting.

Thinking of you.
Love
KC

Kitcat
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Re: Marvellous Marchies 2012 Moving on

Hi everyone,
Hope side effects haven't been too hard today, I'm now on day 7 of my first EC90 and maybe because I've been busy it's seemed a bit of an easier day.
I noticed that quite a few people have been mentioning scarves and I'd like to say you don't need to spend a lot on these. Primark have some fantastic spring and summer colours and they are about £3 each. I made a bit of a mistake of sending off for some quite expensive scarves, which are fantastic btw, from r and r confidence, but if I hadn't panicked myself into thinking I needed ready made ones I could have created some very stylish ones myself.
I've been out twice wearing the Primark creations and had lots of lovely compliments.
Today I got a beautiful wig in a copper colour, my husband says it's exactly the colour my hair was when we got married, he's obviously got a much better memory than me, but it is hugely flattering and I've decided much better than the dark colour my hair had become. When the chemo is over and my hair finally grows back I shall be keeping the lovely colour, it's made such a difference to me, makes me look years younger.
KC

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Re: Marvellous Marchies 2012 Moving on

Hi wonderful March Bunnies!

I think I need some help here please.

I turned up for my first lot of chemo this afternoon, started with the cool cap which was AAARRRRGGGGGHHHHH! – tears to the eyes job for about 2 minutes, then I got used to it because my head was frozen!

The results of my PET scan were late arriving at the hospital. My oncologist is on holiday so his registrar came to me with the results.

May need to backtrack a little – I’m potentially on the Denosumab trial as I’m post-menopausal and triple negative, 5 lymph nodes removed but negative. CT scan to check that everything else was clear, but this flagged up 2 enlarged lymph nodes in my right neck/chest area, hence the PET scan to get a clearer picture.

It turns out that these are called active hot spots – being cancerous. It looks like the bc moved to the centre chest area rather than the axilla (armpit). My chemo regime will be slightly adjusted, then rads to both areas. The registrar says that this area is inoperable, if the chemo and rads don’t clear the C in this region then it’s potentially untreatable.

I’m devastated to say the least!

I have to go back on Friday to start the chemo (as we called it off today); the doc is hoping to talk to my oncologist to check the regime.

HELP!!!

Hugs and xxxx as always
Di

Parsnip
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Re: Marvellous Marchies 2012 Moving on

Hi Gabby, I've done a few things in preparation. One of the first things was together someone to stay down for the first few days at least. I think it's the unknown fear and the what do I do if I'm really sick in the night fear. I also had to consider my son and how well I would be to look after him. So if you can get your daughter to visit, at least the first time, that will ease your worry. As this can't be a permanent thi for the whole treatment I have also done a few other things (I'm ultra paranoid so have probably gone too far!). I have all of the numbers for the ward, gp, district nurses etc programmed into my phone, written in an address book next to my phone and emergency sheet on the fridge. I also have some key contacts prominent in my new address book. This is so both I, and any neighbour I call upon in desperation can easily find numbers to contact people. I ensure I have some friends who regularly check up on me (by email, phone or whatever) just to check I really am ok, even if I tell them to go away as I'm sleeping! Driving back was a concern for me so I arranged a lift and will do this throughout I think. They do say you can drive but I have a way to go and had such a headache after the first one I don't think I'd be safe on the road. It's just one less worry.
I think once you get through the first one the worry will be less and they should have tweaked any meds so you're not feeling SEs too badly. I have been fortunate and the most debilitating time was the first evening and then it's just tiredness, but I would want to have someone around the first night if possible as a just in case. Until you've taken everything the first time you just don't know how you'll react. I had just moved house and knew noone locally so I've introduced myself to a couple of neighbours who have been wonderful already.
On a more practical front I have plenty of snacks and meals in the freezer so when exhausted I can grab something at least, and going to be taking advantage of online food shopping to avoid that drama (too many germs and too tiring!).

Patchit
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Re: Marvellous Marchies 2012 Moving on

Congrats Slinky on completing your treatment! That's great! Thank you for post, its very positive and uplifting.

Gabby, you can phone your BCN for an appointment with Headstrong, that was what I did, so I guess it might be the same for you. Headstrong give you info and details about scarves and hats. You will also get a referral to a wig provider which you will get when you go for your pre start at the chemo unit (well, that's what happened to me!). You should get a prescription to either cover the cost of the wig, or to go towards the cost, but that seems to vary as to where you live. I am not having my treatment at LRI, I am in North Herts and going to Lister hospital in Stevenage for my chemo and Addenbrookes in Cambridge for my rads afterwards. I also have NEVER felt the need to clean with nerves!

Beryl, I dont think my rads will start till end July / beginning August. My onc said that it would be 3 weeks after my last chemo, but thats not till beginning of July, assuming everything runs on schedule. Are you on dose intense, Beryl?

Parsnip, glad to hear you are feeling better today.

Supersue and EB Hippo, good luck for tomorrow, will be thinking of you and sending positive vibes your way. You will soon have notched one up!

Love and hugs

Joan xxx

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Re: Marvellous Marchies 2012 Moving on

Glad to hear you are doing ok Parsnip, im with you as its only my wage paying the bills too.

Do any of you ladies who are single have tips on doing chemo on your own especially in the evenings/nights? I think my daughter may come and stay for the first few nights but I cant expect her to stay for 5 months!! and to be honest its feeling a little scarey to be alone with SE's.

Parsnip
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Re: Marvellous Marchies 2012 Moving on

Well it has been a busy day, hello everyone. Am feeling perkier today (quite possibly aided by my son being at preschool all day so I could rest!) and it's been good catching up on everyone's journeys, seems to be a positive day all round with people getting dates set. I like the idea of a touring caravan for holiday Beryl, just stop and rest when you need it, fantastic.
I'm getting set for a quiet weekend as my son goes to his dad's house, quite looking forward to the break but I do miss him terribly, he keeps me smiling even on the bad days.
W359 I know your desperation to get back to work at the six month cut off, I don't think I'll make it unfortunately as I'll have more surgery and rads to go still, not quite sure what I'm going to do yet as its only my wage paying the mortgage and bills as well, trying not to think too much about it as I keep imagining myself at work with drips still attached!

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Re: Marvellous Marchies 2012 Moving on

I'm afraid I haven't got time to catch up now (will certainly have lots more time to read and write once I'm off work next week), but for those of you with SE I wanted to wish you a good night tonight with lovely pleasant dreams and a nice Thursday at the other end, with tiny tiny SE.

Carmy xxx

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Re: Marvellous Marchies 2012 Moving on

Hello all our March ladies and Slinky for giving us all such lovely encouragement, very inspiring!

I had a really lovely lunch and I won't bore you with what I had and now I feel well and truly stuffed! My poor husband sat down to leftovers but he's not complaining. My friend gave me some lovely flowers as a pre-chemo pick-me-up and they are lovely. People can be so thoughtful. Been looking at the different websites and must look at getting some headwear sometime. Had my Headstrong appt' last week and have tried one of the ways shown and it worked first time. They were very nice ladies and I came away feeling much better about things and the choices I have. I think I look awful in hats and very rarely wear one, and I envy those that have the right shape face to carry them off. Maybe it's the glasses that get in the way, I don't know. Going to town on Sat' so will take a look in Accessorize to check out their selection. Doubt I will get any bargains though, but you never know. Going to hit Holland & Barrett to get some stocks.

Patchit - We have a touring caravan that we are thinking of taking down to a site near Addenbrookes, so we can spend some of the time down there to break the journey times right down. Don't know how soon after chemo that they start rads. Hopefully, will be through chemo by mid May if I stay bug free and bloods OK. You just have to keep everything crossed at this stage don't you?

Better get off this message before this gets too lengthy.

Will let you all know how I get on at my wig place tomorrow. It's called Hair World and is based at Wisbech, Cambs. The chemo nurses told me I wouldn't have to pay for my wig, so we will see what is on offer. If I like one that is not in the price bracket offered then I hope that they will let me pay the difference? I'd rather come away happy and knowing that I will be wearing something I like.

Once again, best wishes to all.

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Hi all!!
Well I saw onc today and I will start FEC-T in two weeks. How strange how different hospitals do different things - although my stats are similar to yours megsmum apart from my lump was grade 3, I was told I would definately have radiotherapy and hormone therapy too. I had hoped they would start it next week cus the waiting is killing me, and there is still a chance if there is room, but im not holding my breath!

Chascat - so glad your wig referal went well. I was hoping that I might not lose my hair, but onc today said I defintely would, so I suppose I better start looking into keeping my head warm and covered! Do you have to make an appointment with Headstrong? Do the hospital give you details and a prescription?

Rae - love your 'dead ferret' comment!! Whilst in clinic today I saw the most bizarre comb-over ever!! My daughter and I were in stitches and I wondered if I could re-create it with my wig?!!

Patchit - great about your job paying you, im waiting to hear how long I can expect to get paid, although I do hope to go into work when I can. Can I ask who your oncologist is, as I assume you are at LRI? Mine is ., she is nice but very business like!

Thank you to slinky for such a positive message

Love to Parsnip, Carolyn, Wolf359 and Beryl and Lots of good wishes to Supersue for tomorrow, but I NEVER feel the need to clean with nerves!! Carmy and KT23 I certainly feel for you two being so young. Although my ONC told me twice today I was ONLY 51!!

God bless you all
Gabby

slinky
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Re: Marvellous Marchies 2012 Moving on

HI everyone,

I had to jump here and wish you all smooth ride through chemo.
I was diagnosed last July and started chemo in August(hence our name for thread) and after chemo, surgery and radz I had finished with all my treatments last monday....Just taking Tamoxifen for next 5 years..

Now I dont even think this all happened to me, time has gone by to quick, it will be same with you all.

I wish you all loads of luck and easy SE's.....

oh and a good website for headwerar is... http://www.annabandana.co.uk
xx pavlina

Patchit
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Re: Marvellous Marchies 2012 Moving on

Newc43 (Di), didnt you start today? Hope it all went well, and also the scans you had.

EBHippo, are you still on for tomorrow?

Joan x

Patchit
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Re: Marvellous Marchies 2012 Moving on

Afternoon Marvellous Marchies! Our thread is growing every day!

Beryl, I am having my rads at addenbrookes after chemo, so maybe we will cross paths later down the road. Luckily I live much closer that you, about 30 mins each way, if that. Hope you had a lovely lunch!

I am going back on Saturday to finally choose my wig. Choice of 2. Caren, didn't you say there is a tea shop in Ware? May have to check that out!

Welcome Wolf359. Hope your wound has now completely healed? It must be really hard trying to cope with a young family, work, sick pay etc. Luckily (?) my boys are grown up (?), 20 and 24, and my work is great, just paying me throughout my treatment. I am trying to work around it all though and have been in for a few hours most days. That's really my choice though.

Rae, good luck for tomorrow, hope it all goes well for you. May meet up with you in a few months too!!

Lydia, I have my headstrong appointment next week, and am looking forward to it. I bought a long scarf and a sleep hat (dont want to wake up to a pillow covered in hair) from suburban turban. There are some really nice scarves on there and the material is nice and soft. They have also been great at customer service, sent me a couple of welcome emails etc. Blimey! Your accessorize hats seem a bargain!! Think I too will be getting carried away although I have never been a hat lady!

Carolyn, where have you got your headstrong appointment? Is it at QE11? Last Easter I walked Hadrians Wall with my OH. We raised funds for our local hospice funnily enough. That all seems a world away now! We had intended to do another long walk this Easter in Yorkshire, but that has been postponed for now!! I have started on the lucozade today as like you I am feeling quite tired.

Off to cook spag bol...... hope we have some garlic bread!

Big hugs all, Supersue, hope you are hanging in there?

Joan xx

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Re: Marvellous Marchies 2012 Moving on

Hello and welcome W359

Snap, I'm also a teacher but primary, but my pay also goes to half on 14 June. Likewise I'm going to try to get back before the summer so I can get paid. Similarly my diagnosis was November with WLE on 16 Jan, now one week on from first chemo. It's really not as bad as you may imagine. I'm now at the stage of just wanting to get through each one. Like call the advice here says make sure you drink loads, and I mean loads of fluids, and make sure you take the anti sickness tablets they give you. I'm not feeling too bad today the tiredness seems to be slowly going, although I may need to put off running the marathon I had planned for tomorrow!!

Good to hear from you Rae, I think the wig choosing is hard because of the emotional factors. But I suppose the more its worn the easier it'll get. Before you know it you'll be here discussing the dreaded side effects as well.

You sound like your getting prepared Lydia, like you I have my Headstrong next week, definitely need scarf and hat advice. I suppose luckily my children are grown up, 25 and 22, but I do admire those of you with young ones.

I've now realised the need to keep reading regularly here as the posts are exploding. I love it, you're all great and it definitely helps.

Now my mouth feels like the inside of a busby cage so I'm off to hunt something nice.

Hoping all feeling well and bear hugs to all you marchies.

Love

Carolyn xxx

megsmum
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Re: Marvellous Marchies 2012 Moving on

Have seen oncologist today and will be starting FEC-T next wed (14th), i,m going on monday for bloods and pre asessment, at least now i have my date i can prepare myself and stock up on things i might need. My tumour was Grade 2 Multifocal Invasive Ductal carcinoma, mildly ER + ve but HER -ve, I had 3 out of 17 nodes affected. He is undecided about Radiotherapy as i am borderline so we will wait until after chemo to decide on it, but if there is a chance of it being helpful i think I,ll go for it. I will also be having an Injection to help with white blood cell production. I dont really know how i feel now a combination of relief, fear etc.
Oh well onwards and upwards xx

chascat
Member

Re: Marvellous Marchies 2012 Moving on

Hi all

Welcome to BerylS and Wolf359, apologies if i've missed anyone.

Beryl, you're so right, this forum is an absolute lifeline and has certainly saved my sanity since my diagnosis. My diagnosis was 13th January, 19mm tumour, grade 2, micro met on one lymph node, ANC, chemo, radiotherapy and tamoxifen, I start chemo on the 19th March, I'm 44 with a 22 year old son and 4 year old daughter - mad or what!

I had my wig referral yesterday and it was fab! I thought I might find it quite hard but the lady was lovely and so were the wigs so made it much easier. Rae, i've also chosen 2, I've had a long one for going out - like my hair was a week ago, only nicer, and a shorter graduated bob how i've had my hair cut now, both brown with lovely caramel highlights. I've been to headstrong today at Coping with Cancer in Leicester and all the ladies were lovely, it was a very worthwhile hour learning how to tie scarves and all the scarves, hats and hairpieces I liked the ladies wrote down the supplier and cost so I could order online. I also bought 3 great hats in Accessorize yesterday, reduced from £17 each to £3, what a bargain, I can see me getting carried away with all this headgear!

Wishing everyone few SE's.

Love and hugs to all

Lydia x

raechi
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Re: Marvellous Marchies 2012 Moving on

Hi beryl,
I will be going to Addenbrookes for some of my treatment too. Surgery and rads...
So you never know, our paths may cross.
Rae
x

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Re: Marvellous Marchies 2012 Moving on

Welcome Wolf359, It would appear that we are virtually the same dx apart from the lymp involement. Starting chemo on the same date as well, but my mix of drugs are slightly different and likely to have Arimadex (may have spelt that wrong)and not Tamoxifen. Can't imagine how you must have felt having the post op' problem on top of everything else.

Things are starting to move along for us now and once we get our first sessions out of the way then we will know more about how we will be affected by the poss' SE's.

The good thing about this site is that we are able to put our thoughts down and lovely ladies, who are in the same boat, can give us advice and support to help us through these though times. I will be thinking about you as well when Tuesday looms and making sure that I drink plenty of water before, during and after treatment. Sounds like a good bit of advice to flush it through and out of the system.

It must be tough having to worry about your little ones, work and pay issues whilst going through this. I know people that have had rad' treatment and they said it was easy and carried on working. They just said slap on plenty of cream to keep moisturised, pref' not perfumed. I found a big pot of Aqueous cream (500ml) at the Super Saver shop for £1 - what a bargain!

I've only just joined this forum and it is helping me so much, and I hope that you will find it so too.

Best wishes.

Beryl

raechi
Member

Re: Marvellous Marchies 2012 Moving on

Hello lovely March Ladies,

I really need to read this more regualry as i had quite a bit of catching up to do today.
Welcome to all the new ladies who have joined us too.

I went wig shopping yesterday and i decided i am going to get two..One brown and one a kind of auburn colour. One of my friends was cute cool about it - she said - just think of it as an opportunity to try new styles with out the commitment..and she is right. If i dont like it i can whip it off!
I did say i'll be happy as long as it doesnt look like a dead ferret or any other kind of road kill on my head!
I was pleasantly surprised. I think i picked one called Charlie (cant remember the name of the other one).

Did anyone else find the selection quite limited? Or am i just a bit fussy 🙂

I'm gearing up for my sentinel node biopsy now - thats tomorrow and results in a week. Then i can finally start chemo - all this waiting.. its driving me bonkers..some of me just wants to get on with it now.

I hope everyone is coping with the SE's - its so nice to read such positivity on here. You really are an inspirational group of ladies.

Rae
xx

waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

welcome W359 (maths you say... couldn't tell 🙂

re: being petrified about side effets.
I'm one week into my first chemo and I was petrified too. What happened was this.. the day of and immediately following were fine, which was such a sense of relief. I was taking Emend for nausea. A few days in I missed taking my nausea meds first thing and didn't eat enough and it spiraled downwards. It's a little like during pregnancy you had to always be ahead of the nausea? So in this case take your tabs regularly and eat energy giving food, little but often. I also had been prescribed a mild sleeping tablet and that night it was my savior, it put me out of my discomfort and the next day, though still shakey, I knew i was over the worst and have got steadily back to myself. I have fatigue, but that's bearable and I bet if you've had surgery you understand tiredness well.

I too was self conscious about the kids and I may ask to change my treatment schedule so that my 'low days', if indeed they turn out to be like that, don't fall on the weekend when the kids are around al day.
Can you organize (in advance) for someone else to help and to give them activities so they aren't 'looking' for you and so that you can then rest.
Good advice: Drink lots of liquid before, during and after.

Clare

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Re: Marvellous Marchies 2012 Moving on

Hi Ladies 😃

May I join you??

My vitals: 34yr old married mum of 2 (DS is 8, DD is 2). I'm a maths teacher at a secondary school.

DX was on 14/12/11, and I had a WLE on 19/12/11 to remove a 21mm grade three lump. They did a sentinal node biopsy, and one of the nodes had a 5mm tumour in it. I went for a ANC on 23/1/12. All of the 17 nodes they found were clear.

Before the ANC, I had a quite dramatic seroma explosion which meant that my boob wound split open. I've been waiting for that to heal completely before starting chemo.

My path is - WLE > ANC > Chemo > Rads > Tamoxifen

The Macmillan nurse is coming to do a home visit this Friday, and I'll start chemo, FEC-T, next Tuesday 13th.

It was a whirlwind at first, but then everything slowed down and I've just been waiting and waiting. I've got cording too, so that's been a right pain in the Arm!

I'm petrified of the side effects. I don't care about my hair, or anything like that - I'm worried about my kids seeing me poorly =(

I also need to get back to work at some point. My pay goes down to half on June 15th, and I'm putting money away every pay day. I really need to get back before the summer hols if possible, maybe even during my rads. DH is a "student/stay at home dad" looking after our DD and doing an English degree so he can be a teacher too. But that means my wages are our only income. Pressure. Pressure.

So that's me...I'm so glad I can come here...

W359
x

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Re: Marvellous Marchies 2012 Moving on

Sorry forgot:

Sam43 - thank you for the info ref cold cap and additional items to take. Thought about taking a towel for my neck, goodness only knows how long I will be able to stand it on my head. Lady I know who has had it said 'If I can stand it for 10 mins then I should be alright'. She lasted through her 4 treatments and didn't lose her hair but I don't know the combination of drugs she was on. Must give them a ring and ask if they provide hot drinks but I take on board what you said about the food.

Thanks again

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Hello everyone it's me again,

ChoccieMuffin - thanks for the tip ref Immodium, something else to add to my list. Going to the local town on Saturday armed with my list and an ever supportive OH. We live on the Nofolk coast and can see the sea, which is just down the hill. When we eventually get some better and lasting weather it will be nice to walk along the front and take in the sea air. Just what the Doctor ordered, I hope.

It's alot to contend with when you are working and have to think about when your pay is going to be affected etc. I suppose some employer's are more understanding than others. Where I used to work they were quite generous with sick pay and time off. Unfortunately, a few employee's started to take the mickey and so they changed everything to stat' sick pay, which was a shame for those that were genuinely sick. Thankfully I'm retired now and don't have that to think about anymore.

I've got my wig fitting tomorrow and a friend is coming with me so I can get another female opinion. My husband is going to drop us off and come back for the final result. My friend went through all of this 10 years ago and another 18 years, so every encouragement being given by example.

The next step after chemo with be rads and I will have a 3 hour round trip for that to Addenbrookes, Cambs. Let's hope that I will not have to do that for too many weeks.

Going out to lunch with a friend today at a really nice place to give ourselves a little treat. The weather is awful outside which will put the damper on it a bit, we will just have to make a quick dash from the car!

Big smiles to everyone.

Beryl XX

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Good morning ladies

Carolyn, this site is driving me MAD! Yet another post lost in the ether, then I cant remember what I had written!! Think I will have to copy them before posting as they keep disappearing! I too am feeling a bit brighter than yesterday. Last night I slept for 10 hours and that was after 2 hours in the afternoon! We seem to be counting our days differntly, as I think I am on day 7!

Supersue, sorry to hear how you are feeling, you have counjoured up a lovely picture in my mind though, ha ha! I was totally stressed out before my first treat, partly because of a big trauma concerning my tooth (not very good with the dentist!). Lord, I was in a state, crying at the dentist, in the hospital! BUT, I got through it and although it was only a week ago, it seems much longer than that now! You will cope and come through it ok. xxx

Clare, I had a lumpectomy & sentinal lymph on 31st October, then an mx & more lymph nodes on 5th Jan. It seems quite a long wait for me to get to chemo, but then again, at least I hasve had loner to get over the surgery. Beryl, sounds like my story is similar to yours. I am also keeping up withthe exercises as I have rads after chemo and I know you ought to be 'flexible'!!

Parsnip, hope your tastebuds come back soon!

Well, I have just got dressed and am now going to pop down to work for a couple of hours.

Have a good day everyone.

Joan xxx

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

Carolyn, you describe it perfectly. I liken the tiredness I felt to what Harry Potter must've felt like when the Dementors were attacking him. (Good thing the antidote for that is chocolate!)

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Re: Marvellous Marchies 2012 Moving on

Morning ladies

Gabby by champagne I mean the name of the anti sickness tablets Domperidone. Hope that's clearer.

It's taken me ages to scroll back, and this site is a pain so I find myself using I phone and I pad so I can read posts but not lose what I'm talking about. I know I've tried to post before and because of referring back keep losing posts.

Like you Joan feel tired but actually a little better than yesterday. I think I can cope with the tiredness although it's not like anything I've felt before, like having all the energy sucked out of you. Day 6 now so hopefully upwards now.

Hope the weathers better in Rome Clare, it's drizzly, damp and horrible here. What a lovely thought lunch with friends in Rome.

Supersue before you know it everything will be over, and what an image you've created in my mind.

Your situation sounds similar to mine Beryl. I too had one date pre Christmas, then more tests because if new consultant then finally op on 16 Jan. It's the waiting that's hardest. I'm only 48 but was flattered when the registrar told me I had young boobs, the thugs we cling in to.

Had a letter from work today pay goes to half from June ( the date of my last chemo) so think I'll try to get back to work for the last two weeks of term then at least I'll get paid through the summer. More hassle that's not needed. Also have to see occupational therapist so probably only go back part time for those weeks so shouldn't be too bad. Mustn't grumble I suppose, it's just it seems such a long way ahead.

Hoping all ok today and love to anyone with appointments.

Hugs to all

Carolyn xxx

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

Personally I couldn't do the pineapple as it was very acidic and my mouth was very sore, but not everybody gets that and a lot of people find pineapple very refreshing.

For Tax, they generally give you a lot more steroids than if you're on FEC, but that's because the steroids are very good at counteracting potential allergic reactions. It can mean you're rather wired, but better that than having an allergic reaction to the chemo.

Beryl, don't go mad on laxitives unless you find you need them. You might want to get in some immodium as well, because Tax can be a bit tricksy in the bowel department and makes some people constipated while giving others the runs - Tax Trots! I'm afraid you're just going to have to see how your rear end responds and treat accordingly.

Parsnip
Member

Re: Marvellous Marchies 2012 Moving on

Thanks Joan for the pineapple advice, it really is helping and actually tastes of pineapple still (nothing much else tastes good at the moment!) I also picked up some melon slices. I imagine I'll be so souped up on fruit by the end of this I'll be healthier than when I started as its the only thing that tastes normal. Feeling slightly more energetic today but have to hang around for the district nurse to flush my picc line today. Like supersue I keep cleaning! Started just before the first dose, almost like nesting before I had my boy, very odd things we do 🙂
Hope everyone is doing ok today
X

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Re: Marvellous Marchies 2012 Moving on

Thank you ladies for responding to my messages it means a great deal to me!

ChoccieMuffin - The drugs they are going to give me are Cyclophoshamide and Docetaxel (Taxotere) and I will need four sessions before starting my rads. Hopefully I will be finished chemo by mid May if I keep well for each visit. They told me I will get anti sickness drugs during and after by tablet form. Didn't mention any anti clotting injections so perhaps I will not need them. The chemo nurse I saw was very nice but she does have one annoying habit and calls everyone 'My Lovely'. If I'm going to be seeing her for all my visits I think I'm going to have to just blank it out. If that's the only problem then what do I have to worry about - at least she's frindly and that's got to help.

Patchit - I had my WLI on January 9 which nearly didn't happen because the night before they phoned and cancelled due to no beds. I nearly lost the plot at that stage because of all the delays due to the Xmas and New Year holidays. Left a message on the BCN answer machine to say how disappointed and upset I was etc. The next morning I got a phone call at 8.00am stating that the Consultant had thrown a wobbly about losing his ladies beds. He was trying to co-ordinate with the day surgery unit, to see if he could get any recovery beds for ladies that would be going home that day after surgery and could I get to the hospital for 10.00? Didn't need asking twice and off we went (had to get my husband off the golf course)where I had dispatched him for a break. It turned out that there were only two of us having surgery out of the original seven, so I think I was fortunate. Met a lovely lady called Pauline who had a another occurance after seven years. Thankfully it was picked up on a follow up mam and very small. She was so up-beat about everything having been through this before(she only needs rads), and just lives along the road from me. We will be keeping in touch and plan to meet up as soon as we can.

I had my post surgery appointment with the surgeon on 19 Jan and then referal to Onchologist which was on 24 Feb, so quite a wait. When I start my chemo I will be 9 weeks post op'. During this time I have virtually returned to normal life and just doing my daily ex with my arm. I have changed them slightly to suit myself but at least I'm still doing them. Only had one lym removed so not too much disruption in that area.

Sorry, I have rambled on enough about my experiences but the above just about sums up my journey so far.

I have made a note of the tips given ref pineapple and ice pops, laxatives and a few more.

Carmy and Kt23 - We are starting chemo on the same date and I will be thinking of you both going through this at a young age. I feel young in body and mind, well mostly in my body (61 years young).The Onchologist asked me to confirm my birth date and I was quite flattered, got my mothers good skin. No matter what our ages we will be strong together - sounds like a war slogan.

That's enough - hope you have managed to get through this without yawning?

Love to all

Beryl XX

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Re: Marvellous Marchies 2012 Moving on

Morning all well today is Chemo EVE, i'm shaking like a leaf, didn't go to bed till 2.30am lay there till about 3.30am before i got to sleep. Now i tired but had to get up as off for wig fitting this morning.

I can tell when i nervous i clean! 🙂 i not even in my own house as staying at my boyfriends whilst having treatment as i live above my nursery and works kids and chemo don;t mix.
i cleaning you could eat your dinner off the toilet its that clean now, funny things we do, i was naked doing the immac thing on my hand and knees cleaning the bathroom.

BIG group hugs for everyone xxx

waiting_too
Member

Re: Marvellous Marchies 2012 Moving on

Morning Ladies,

BerylS and Camy I think others have assured you can have company. I would just say to Drink water as much as you can from today until the end of this whole thing… This was advice from my oncologist and I feel the benefits.

I had my haircut so it's too late for the littleprincesses.com site but it’s a lovely idea. Today I go get an injection to boost the white blood cells. I’m just feeling myself again so I hope it doesn’t bring out any SE's. The drug is called Granulokine. Since I’m in Rome, some of the meds have different names. After this I have lunch with my friends then also to see a hypnotherapist – I’ll let you know whether its useful or hocus pocus.

So have most of you already undergone some level of surgery to remove lumps? I’ve only had investigative surgery (sentile node and then the fitting of the port in my chest). I can imagine its tough for you ladies that have had surgery. I have grade 3, triple Neg with a few big lumps. My oncologist wants to do 8 chemo sessions and then assess for surgery followed by Rads.

Ciao ciao (as they say in Rome)

Clare
p.s. laughter is good medicine so.....

KEEPING A STRAIGHT FACE AS A COURT REPORTER- These are things people actually said in court.

ATTORNEY: What was the first thing your husband said to you that morning?
WITNESS: He said , 'Where am I, Cathy?'
ATTORNEY: And why did that upset you?
WITNESS: My name is Susan!
____________________________________________

ATTORNEY: What gear were you in at the moment of the impact?
WITNESS: Gucci sweats and Reeboks.
____________________________________________

ATTORNEY: Are you sexually active?
WITNESS: No , I just lie there.
____________________________________________

ChoccieMuffin
Member

Re: Marvellous Marchies 2012 Moving on

Good grief, you are a chatty lot!

Beryl, you can ask your onc what your chemo regime is, and then people here might be able to give you a bit more info. Also give the helpline a ring, and take a look at the publications section of this site and on Macmillan's website. There's lots of interesting info out there.

As for bringing someone with you, I brought my lovely OH with me for my first one (is it REALLY nearly a year ago? WHAT a year!) but went to the others on my own.

There are lots of drugs available to cope with side-effects. A very common one it seems is a corticosteroid called dexamethasone (often called DEX on here). If you get an intravenous dose, be aware than it can give you an "ants in your pants" sensation which is really weird. If you do get that, ask the nurse to slow down a bit.

The one that can be extremely irritating to veins is epirubicin, which is a bright red liquid so it's a bit alarming. You can also expect to pee red the first few wees, but if you've been drinking lots of water before and after, that helps to flush it through.

If you need to attend to the call of nature in the middle of your chemo, you are allowed, honest! They can unhook things and disconnect things while still leaving the cannula in if you have one, and then just plug you back in when you're ready. Or do what I do, and when they call your name for your treatment, just say "can I go to the loo first?". If you're not having the cold cap that should do you ok.

Somebody asked something else but I've forgotten what it was. Sorry, I blame it on how prolific you are on this thread! And the fact that it's nearly midnight...

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Just managed to go back through the rest of the posts from today!

Angelhearts, you should get a referral to 'Hair to Wear' when you go for your pre-start appointment at the hospital. Hope all your SE's and the other SE's and settling now! Oh, and yes, those SE's will get better! Hope you will soon be SE free!!

Caren, Carolyn, yes, wouldn't it be funny if we all turned up in the same wig! Hilarious! It would be like a Les Dawson sketch! I have been confused about what to do re the shaving thing. Decided I am going to speak to someone at Toni and Guy (they offer a service via Macmillan for cancer sufferers).

I have felt quite tired today and yesterday so have had a nap in the afternoons. On the whole though I seem to be coping ok with most of it so far. The senokot did the trick too! I hope that the ladies starting now will see that this is doable, although it is scary, just take one day at a time and go with how you feel. I feel a bit odd posting that as I don't want anyone to think I am handling it better than anyone else, but I just wanted to say what my experiences have been like. Just hope I don't live to regret saying all that!

I don't think there is anyone starting tomorrow, is there? Hope you ladies from yesterday are doing ok. May all your SE's be tiny!

Have a good night everyone, sleep easy1

Hugs and xxx
Joan

GeorgieB
Member

Re: Marvellous Marchies 2012 Moving on

I was wandering about drinking loads and going to the loo whilst having the treatment and at night but then laughed as i remembered last time I was in hospital I had a drain and was having a transfusion and managed to get to the loo with both things and as I was on a ward with ladies who had gall bladders removed and they couldn't move ended up doing things for them as well!
Good luck to anyone starting tomorrow or anyone who started today. Is anyone same as me on the 20th March?
Love Georgie xxx

Patchit
Member

Re: Marvellous Marchies 2012 Moving on

Hello ladies

What a marvellous lot of marchies we have now! Welcome to the new ladies. I expect I will be doing 2 posts as I cant scroll back far enough to read everything and my brain cells have diminished in the last few days!

I must firstly pass on a tip for those with sore mouths or mouths like the bottom of a builders bucket, like mine. Pineapple! Freeze chunks of fresh pineapple and suck one to allieviate mouth soreness. Pineapple is a natural ***something, I am not sure what, but its good***! Or try an ice pop.

Welcome to the new ladies. Beryl, the waiting is awful, I had an mx on 5th Jan and started my chemo on March 1st. Its being in limboland, but it does come to an end and you will move on to the next stage. They will go through everything when you go to your prestart appointment, and you will probably get a printout of what they tell you, so please dont worry about remembering everything. I have phoned the chemo nurse a couple of times since my first treat with 'silly' queries, and they really don't mind taking time to go over things with you if you need it. Please dont ever feel that you are being a nuisance or demanding, you are not being either of those things. I didnt take anything with me really for my first treat, other than a bottle of water. The time went really quickly! One thing I would totally agree with is drink, drink, drink your water! I guzzled mine while I was having my treat, and, yes, I did need the loo, but I just took the drip with me, it was no problem at all. Remember to keep drinking water the day before, on the day and the day after. My OH sat with me through my treat and I expect he will come with me each time, but that's just our choice.

Parsnip, try pineapple for your throat. If you haven't got fresh, maybe you might have some tinned? Hope you feel better soon. x

Hi KT23, welcome to the train ride! We are all in this together and try to help each other along the way. I hope you will get some comfort from the rest of us, we are all here to send you virtual hugs and hold your hand. Big hug to you from me! xx

Joan xxx

kt23
Member

Re: Marvellous Marchies 2012 Moving on

Hi Carmy,

haha i am 24 in 3 weeks but when people ask me my age i still go to say 21 lol. i will hold your virtual hand if you hold mine. I will stay in touch the whole way 🙂 xx