Marvellous Marchies 2012 Moving on

[system]

Morning everyone

Sitting here with ‘Frankie’ my wig on just trying to get used to it and see how long it’s going to last etc. I do find scarfs or hats more comfortable than my wig because it feels so alien to me. Had a good night and so far stomach is doing OK but does get a bit unsettled. Might be trouble brewing later.

That’s it the wigs coming off…Phew, that’s better!

I agree with Alloe Vera gel for scalp and I put it on after showering. I’m sure it helps to sooth and calm things down.

Marie - I’ve just had a lumpectomy but know what you mean about twinges and changes to scar area after chemo and then it settles down again. Also found the chemo is irritating my right ear and jaw line. The fact that I take Diclofenic for my injections s/e is probbly help with that as well. Goodness, I’m popping that many pills that I must be rattling. Four more injections to go for this round, thank goodness.

My hubby has gone to the supermarket as well and I’m glad I didn’t bother going with him because my stomach is doing a dance now. Must be off and will catch up with eveyone later.

Beryl XX

[system]

Mollie43 - So glad you are home and what an ordeal you have had. Will certainly remember you very strong advice and not even think about delaying for the slightest now. Well done to you for getting through this and finally being home. Big hug to you but wish I could do more. Glad to hear that you had a good team taking care of you!

Best wishes and thinking of you.

Beryl XX

[system]

Debbie…finally you escaped! Bet you’re glad to be home at long last.

Beryl - hope that tummy settled soon, you do seem to be suffering x

I’m off out to a Bank Holiday Market today despite the drizzle. Better wear boots I think though as it’s likely to be muddy.

Enjoy the last day of the long weekend

Twinky x

[Kittyqueen]

Morning xxxx

Pouring with rain here today. I have ventured to the supermarket as needed petrol too didn’t want to be panicking first thing in the morning as see Oncologist at 10.30…think for bloods etc… but didn’t ask as usual lololol.
Day 14 and my hair still intact at them min…can feel a slight twinge on my crown Spots settling down not quite as red and glowing.
BerylS…hope you feel a bit better later xxx
Mollie43…pleased you’re home safely and I will take note of your advice xxxx
Wintersocks…glad you had a lovely time and yes oh did do the roast dins and I was very grateful even though he was telling his Mum and I how wonderful it was every mouthful lololol
Patchit…Joan Pleased you made your weekend away and got back before the rain today :))

The weird dreams don’t really bother me as I’ve always had weird dreams from being a child :)))
Am oof to a lovely pub on the outskirts of Sheffield for lunch and then to see a neighbour’s band play for an hour on the way home.

Hope you all have a good day.

Love KQ

[system]

Hi there ladies. Please may I join you?
I was diagnosed early feb and have had a lumpectomy and sentinel node biopsy where they removed lump 24mm and found small cancer in 2 nodes removed hence onto chemo. I had portacath fitted and am having 3 sessions of FEC and then 3 sessions of T. I am on day 11 of my second chemo so starting to feel a bit better but so weak and tired. Some days it all seems such a long journey and others it seems a bit easier to cope with. When chemo is over I will have to have axillary clearance and then radiotherapy so in my head I think it might all be over by September although I gather it takes a while to get the energy levels back.
I am a supply teacher so although I don’t have any pressure to get back to a job I don’t get any money either!!
Anyway it is great to meet others going through the same and look forward to chatting with you all.

[system]

Hi Everyone

I’m OK and not really suffering but thanks for concern and comments. Tiredness, and occasional squiffy tummy is all, again fingers crossed. Bit superstitious so have to keep saying fingers crossed or touch wood, got it from my mother. They told me squiffy tummy is likely from chemo and take Immodium if nec’. Not taken Immodium yet but got some just in case. still haven’t ventured out because it is so cold and windy here. Rain has finally stopped and I think tomorrow should be a better day. Daughter coming tomorrow so that will be nice and we can do some bonding. We are going to have one of her favourite meals for tea - lasagne, salad and garlic bread. I intend to eat every bit of it because my appetite is certainly coming back. We have my friends funeral on Thursday but we won’t be going to the wake, I think I’ve already said that so excuse me repeating it. I have been reading quite a good book a murder who did it kind of thing. Bit of a puzzler and at the moment I’ve no clue and it’s keeping me turning the pages. Also like playing Scrabble on my Ipod (against computer), it helps to keep my little grey cells active, which is proving difficult at times with chemo.

Kittyqueen - Hope you enjoy/ed your trip out to Sheffield which is somewhere I’ve never been. You mentioning your OH roast dinner has made my mouth start to water, love roast dinners. We like to take our touring caravan all over the place and we do like the north. Living near the sea we tend to go inland and have the coast doable for a day out if necessary. When this is all over and rads have finished I/we would like to go back up to the Whitby area. Got to have their fish and chips again they were smashing.

Mary (Peanut) Hope you are having a good day and have managed to get out and about in Blackpool. The weather is probably not that good there either.

Cherio for now and take care all.

Beryl XX

[system]

Hi I am new to this so did post earlier but it didn’t seem to work. I have had 2 chemos so far after a lumpectomy and sentinel node biopsy. Coping ok but do feel down at times as it seems such a long journey and I seem to feel quite rough through the first 2 weeks.
Nice to hear all your positive comments

[waiting_too]

Hi Ladies hope you are all enjoying the easter holidays.

Beryl, - is this you on chemo No.2? is that why you’ve got a squishy tummy? I have chemo no.3 wednesday. I did try to change it so that my low days don’t coincide with the weekend, when my little kids are around, but because of easter hos they are short staffed. I will try to change it next time.

hugs,
Clare

[megsmum]

Hi hope everyone is ok , i wont be posting much as we,ve made it up to the Caravan in Scotish Borders and no free wifi for my phone :-),

I have a terribly sore mouth & indigestion and complete exhaustion but our lifelong friends are with us so hopefully we,ll have a nice week. This week was arranged Bc so i wasnt going to let it have that too

I cant scroll too far back so has anyone heard from Poppy she had her 2nd juice on 4th like me hope she,s ok.
Have a good week everyone xx

[fitter]

Hi went for blood tests etc today before chemo on Wed.

While there asked about my HER-2 results which one result had not come back the last time and the other one had to be retested and then sent off to cambridge for more testing. Results back and positive so will have to have herceptin. Feel very down and upset about this and worried about the herceptin. Is anybody else going to be having it and what are your thoughts.

[raechi]

Hi fitter,
I will be having herceptin too. 17 lots of the stuff. After the first lot mine gets administered at home. So please don’t worry too much. I am happy to take it if it helps me kick some bum!

So much to catch up on ladies. I have been away to Suffolk for the weekend. Where my hair decided to make its exit. I feel sorry for the poor person who had to clean our room. I did my best but there was so much!

I have now had the clippers on it.

Hope you are all well despite the crappy bank holiday weather.

Will catch up and respond properly when I have had a chance to read all the posts properly. Big hugs to all. Xx

Rae

[system]

Evening All

Here I am again having just had my tea/dinner and really enjoyed it. As I said earlier, starting to get my appetite back now.

Smilesnic - Glad you made it onto our Forum and we will help you along with us as much as we can. I have had two chemo’s as well but different type of drugs. Don’t know how they work out who gets what and how many, but they are giving me 4 sessions and I get both drugs at the same session, but put through separately. I’m now day 7 and picking up from tiredness which hits us everytime. My lumpectomy and snb was 9 Jan. Chemo started 13 March and when this has finised, hopefully mid May, I will be given radiation over several weeks but don’t no how many yet. You are right, it is a long journey and we all have our days when we feel fed up with it all. When you feel rough is it due to one particular thing ie sickness, general tiredness, loss of appetite or something else? Sickness has not been an issue for me because of meds they have given me. My biggest issue was aching in several places in bones from WBC injections but they resolved those with Diclofenic (ant-inflamatory). Like you and all of us tiredness has been an issue. I do get squiffy tummies but it was worse on session one than now, hope I’ve not spoken too soon. Emodium solves that problem which you take straight after the event. For me work isn’t an issue because I’ve retired and do not have the added worry of having to go to work. Have you got anyone giving you support at home or applied for any assistance with financial matters? Sorry, these are all personal questions and please don’t feel obliged to answer. It’s very difficult to know what to suggest for the best but there are several organisations that can give you advice and help along those lines. Please keep coming on here and we are here to help one another get through this to the very end. Big hug and take care. I keep telling myself that tomorrow will be a better day and before we all know it we will be out the other end.

Clare (Waiting too) Yes, 2nd session of 4 and my stomach gets a bit squiffy after about 6 days in. First session was worse so perhaps my system has adjusted itself more this time, hope so. It can all be managed but I feel like I’m blooming rattling with pills/drugs.

Megsmum - My mouth gets sore as well but so far I’ve controlled it with 50/50 water and codysyl. Chemo Helpline suggested this because I find neat Codysyl too strong for my mouth. Also drinking water as much as I can and have totally gone off warm/hot drinks until third week when mouth calms down. Also sucking ice pops and I find them very soothing. Probably won’t want to look at another ice pop after treatment finishes. Enjoy your week away in Scottish Borders. Love Scotland it is such a lovely place. Quite envious! Make sure that you let everyone spoil you because you deserve it.

Iv’e been wondering about all the ladies we haven’t heard from in a while. Do hope they are all OK and will be back updating us soon.

Fitter - Nothing has been said to me about Herceptin but mine was HR+ so that is probably why. Then again I don’t know about who does or doesn’t get it. No doubt you have to be receptive to it othewise there’s no point. They did say that after chemo and when I have rads they are going to give me tablets but haven’t confirmed what yet. At the moment if they told me I had to take another tablet I think I would throw up. My body is just not used to taking all these meds and must be in total shock. Normally only take multi-vit, anthistamine daily (sensitive nose)and something for headache as and when. My husband is keeping on track with meds otherwise I’d be all over the place. I know a lady who is on Herceptin until August and she said they are fine and hasn’t had a problem. She has to go every 3 weeks for an injection at the hospital. She sailed through chemo (didn’t lose her hair with cold cap)and 4 weeks radiation. She’s been a real inspiration to me from diagnosis and takes everything in her stride. She’s a retired lady and refuses to let anything beat her. It’s probably the right attitude but not always easy to adopt. You take care now and I’m sure one of the other Marchies or someone from another Forum will be able to comment ref’ Herceptin.

Off for another rest.

Beryl XX

[Kitcat]

Hi Everyone,
Sorry to hear that Mollie has been so ill, I’m a bit cavalier myself over contacting the hospital although I had to do so a couple of weeks ago as I had such bad side effects. Glad she is better now and she’s given good advice about acting quickly if anyone is ill.

I’ve had to contact my Macmillan nurse as I’m due another chemo on Thursday and I’m not over the last side effects yet. When I had to go to hospital there was some talk about only having half a dose next time (I’m on double doses of epirubicin and cyclophosphamide) but not sure I want to do that as the double doses have been prescribed for a reason.

The exhaustion is the worst thing at the moment, not to mention the forgetfulness which meant that tonight instead of putting tea towels in the drawer, I carried them out to the car with me instead. A lot of the things I do at the moment show my mind is a muddle.

I’m going in to work tomorrow to see my friends but I don’t think I’ll be staying long, I feel too unwell which is very disappointing as I had almost no side effects from the first dose.
KC
x

[system]

Hi All and Happy Easter.

Firstly replies…

DULCIE - I love the doggy pushchair story - how cute !
BERYLIS & Wolsty - Loving your wigs !!
MOLLIE43 - Sorry to hear about your infection and hospital stay. Hope you get a chance to recover before the next session.
PATCHIT - I can’t find the post about your son but sorry to hear you’ve had some upset. I hope things settle down for you.
PEANUT1955 - Looks like I’ve joined you with the sickness/nausea this time. Really interesting to hear about your daughter being an actress and great she makes a living from her passion.
MARIE67 - Seems you also found session 2 harder like me. Hope you are bouncing back now.
JAMESY - have you considered getting your little girl to draw pictures of what mummies new “magic” hair might look like when it grows back. Turn it more into a fun experience and explain it could be a different colour and style and what does she think it will look like. Art Therapy is very popular with cancer patients and their families so perhaps you could take some ideas from that.

ChoccieMuffin - Hope you are well and sorry you are having issues with Social services. Daren’t even get started on here about them but they were in my life as a child due to my dads mental health issues and they were the reason he was all alone the day he died!. Hope things get better for you.

CARE_N - sorry to hear your arm is painful. Mine is very sore since Chemo 2 and pulling under the armpit and swollen round the wrist (so basically knackered !). Hope yours improve ASAP.

KOJAK - Hope you are feeling fine after Chemo 2 and glad to hear you recommend Emend as I will be having it next time

RAE - Thanks for sharing your Blood results ! - Nobody else wanted to play ;-( Hope you counts remain high.

CHASCAT - really sorry to hear about your concerns for your husband. I hope it proves to be something minor so try not to worry.

ELKE - Welcome aboard. Sounds like you’ve had a really tough time but I’m impressed that you manage 7 kids with your partner ! You deserve a medal. I am on the same treatment as you and similar financial nightmare. I just focus on one day at a time at the moment and wish you all the best.

CAMIE - Welcome too and sorry you are feeling down. It is very normal to feel that way and I don’t have a magic answer. I prefer to let the tears out and keeping busy on better days.

KITCAT - Sorry to hear you aren’t feeling great. Is forgetfulness an SE then as I often put the milk in the bin and the teabag in the fridge ! Thought it was just me lol. Seriously I hope you pick up soon but each dose seems so different so just listen to your body.

Big Virtual Hugs to everyone else and anyone that I’ve forgotten. I’ve enjoyed all the updates and stories.

Re my son audition. He went up to Covent Garden with his friend and got back safely and so I am very proud of him. We don’t expect anything from this casting because the character is only 14yrs old and my son is 5’10" tall and probably can’t get away with playing 14 yrs now but the casting lady is so important and casts loads for ITV that he really needed to meet her. Also having to say “my mum couldn’t bring me because she’s having Chemo” did ensure he stuck in her mind. Has to be some perks with this cancer crap !

Will do Chemo 2 update as another post as this is getting long :-0

[raechi]

Quick question? Does anyone have a port cath fitted. I have come home to a message to say mine s going to be done on the 17th. It moves my chemo by a couple of days but that’s fine. My veins had reacted to the first FEC and I could not face even more needles. I have got 22 lots of iv drugs to go!
Just wondered if the port cath hurts?
Rae
X

[system]

I had Chemo 2 (FEC) on Weds and it was totally different this time. Hit me immediately and I was feeling sick before I even left the unit and by 9pm I was being violently sick in a scene that looked like something I’m sure I’ve seen in a spoof horror film (think projectile !).

I also felt like someone had unplugged me before I even reached home and couldn’t move or even talk from exhaustion, queasiness and blinding headache. However, the good news is that the headache was gone by 10am the next morning (earlier than last time) and the vomiting actually was less stressful than the “trots” I had for days on end last time. Sickness / Nausea / Heartburn was pretty awful again on Saturday (Day 4) for some reason but I am drinking gaviscon regularly now and have my appetite back completely - even had Easter Egg.

I found I just had to give in to it this time but the long holiday weekend made that easier anyway. Hoping to feel quite “normal” from tomorrow (day 7) and just have to avoid infections. Have a reflexology session booked for Wednesday which I am looking forward to and have been referred for some counselling sessions. Also seeing the Onc before next one to get sickness meds changed.

Reading the posts someone mentioned their % of reoccurrence and that has played on my mind because I never got that information and now can’t get it out of my mind ;-( I had thought the Chemo / Rads / Surgery / Hormone stuff was the gold standard treatment but made the mistake of Googling chemo and not impressed with stuff I’ve now read.

Just hope this Chemo makes a HUGE difference to improving our reoccurrence risk and think I might ask my Onc before the next session to explain my prognosis. I had 8 out of my 19 lymphs with cancer and worry that increases the reoccurrence risk but then I am more worried about what happens when you stop taking the Tamoxifen if it’s hormone positive and you are still producing that hormone. Guess I need to stop thinking ahead - 1 Day at a Time.

Going to update pic to show the wig now. Take Care everyone
Angie xxxx

[system]

Evening Ladies,
Simlesnic- hello and welcome to us Marchies
Beryl - hope you have a lovely time with you daughter tomorrow
Dulcie- big hug for you tomorrow and hope you get all your questions answered.
Mollie- glad you got home and hope you are now feeling better, any news on your next chemo?
Megsmum- have a lovely time in Scotland, as well as nystatin for my sore mouth I have found that drinking pineapple juice has helped to.
Kitcat- I am sure popping into work will give you a nice chance to catch up hope you start yo feel better soon, this miserable weather doesn’t help
Raechi- glad you had a lovely time in Suffolk.
Fitter and Waiting too- hope you get sorted out for your chemos on Wed
Angelherts- chemo 2 has definitely been harder, though now feeling better and getting appetite back.
Hello to everyone else hope you are all doing ok with SE’s.
Jane

[Ceej]

Evening ladies
Am back home from OH in sunny Worcester not!
Not much hair left now at all as it was very fine to start with and now he’s cut the clumps out there’s nothing at the back! Beryl - thanks for the wise words I am so glad I went short first as I’ve got used to my face with shorter hair my partner says my problem is that I read to much about side effects and I prepare to have ALL of them but I think women do that so we’re not caught out!

Fitter - I really don’t know what caused my hair to do that but there was no way it was coming out without being cut ! I see we are both up for chemo on Wed and your only in Warwick? Maybe if you feel like it we could do a coffee one day x
Angelherts - am really not looking forward to no 2 having read you’ve had a worse time with it xhope you’re feeling better now x I hope the counselling helps you - I didn’t really find my counsellor inspirational - she said my negativity was fine and that she was the same sort of person - so much for me being told to be more positive ha ha x

Kittyqueen - sorry for delay on hair dy - its Daniel Field natural colours free from peroxide and ammonia - I think I paid 6.99 - just google it and you’ll find it easy - am planning to use mine after my hair cut on Thursday - my hair was really hanging on in there until it welded Itself into a big knot ho hum I’m actually looking forward to a new style

Mollie - really hope you feel better - what a horrible thing to have gone through ! I bought an expensive thermometer in readiness as I’m so scared of getting an infection x
Chascat - still have fingers and toes crossed for your husband x
Smilesnic - doing same regime as you - second Fec this Wed and not looking forward to it! But hey that will be 2 down and 4 to go!
Gabby - I know what the shedding of hair feels like I just left most of mine at my boyfriends ha ha

Rachit - hope your son works it out - my son has ADHD and even at 24 he is a challenge - it costs me loads of money to keep him in his own place as it’s just stressful to have him living with me anymore - sounds cruel and I’ll e him to bits but day to day living was just too difficult

Ok bit of pizza and then bed - gym in the morning

Goodnight all xx

[Ceej]

Angelherts - you said about percentages I asked and was told 70 per cent chance of non reoccurrence which made me wonder if the chemo rads and stuff really are precautionary in my case then why do I not have more chance that than - I don’t think it’s a good thing to think about
I also never asked about this HER positive thing - to be honest my onc couldn’t even read my notes and said didnt a need tamoxifen until i corrected him and said I’d been told I do! To which he replied on yes I must get some reading glasses! Not sure I’d get the right answer if I asked but I think you should ask away!
X hugs

[Patchit]

Hello ladies

What a miserable day! I went down to work for a few hours today as will not be in on Thursday or Friday due to 2nd treat. I just have that feeling of dread at the moment! Last of the Fec for me, then I have 4 Tax. I suppose that will be the next thing to worry about, what the SE’s will be for that!

Carolyn, hope the head is better today!

Dulcie, good luck for tomorrow, will be thinking of you. Xx

Marie67, sometimes my mastectomy scar feels quite tight, especially if I don’t keep up with my exercises. I am still quite lumpy and bumpy around that area, but guess that will be how it will be now.

Mollie43, glad to hear you are back home again after your hospital stay. Thanks for the advice, I would certainly act on it. Must admit, I would also be one to leave things in the hope they get better on their own!

Beryl, I know how you feel about rattling with all the tablets we are on! I have to say I am happy they took me off the GCSF injections as that would have been a lot more medication to take. Hope the tummy has settled now. I use Bio oil on my scalp every day, I thought a nice shiny scalp would suit me very well! Ha ha! Hope you have a lovely time with your daughter. I also hope Thursday goes as well as it can. These things are really hard to get through, I hope you cope with it all ok. xx

Twinky, loving the new picture of your bunny!

KQ, hope you had a nice time at the pub and a nice lunch.

Smilesnic, welcome to you, sorry you had to join us, but we will keep you company on the chemo rollercoaster! Its my third fec on Thursday and while I want all this to be over, I am dreading having the treat again. I haven’t even had bad SE’s this time, but you just don’t know how you will be from one treat to the next!

Rae, glad you managed to get away for the weekend. Sorry about the hair!

KC, sorry you are having a hard time of it. Double doses must be really hard to cope with. Hope it works out with your next treat. Hugs to you. Xx

Angelhearts, how lovely to hear about your son. You never know what these things lead on to. I hope he gets to live his dream one day. Sorry to hear about the reaction to chemo 2. Are you having the GCSF again this time? I also don’t know about my prognosis, I am not sure that I really want to know! I just thought my treatment is more preventative as I only had one lymph affected, which strangely was in my breast tissue and not from under my arm. Just try to take each day as it comes and not worry about the future. And DON’T GOOGLE CHEMO!!!

Ceej, I totally agree with you about the son thing! That’s a good way for you to cope with it. Good for you! You know he is safe, but you don’t have to put up with all the aggro, like it!

Chascat, thinking of you and hubby tomorrow xx

Chocciemuffin, not heard from you for a few days, thinking of you and sending you big hugs xxx

I went back to the prosthesis lady last week. She changed it for me for a smaller one, which I am much happier with. I am not that impressed with the whole thing though! She told me I need a 38, which I have never been and am in a 36 at the moment (which I have been for ages). Then she tried to do my 36 up on the tightest setting and shortened the straps so I felt like a trussed up chicken! On top of that, the lady in John Lewis thought I might need a 34! Heavens!

Have a good night ladies, hope the dreams and SE’s stay away.

Hugs to all
Joan xxx