Marvellous Marchies 2012 Moving on

Hi Everyone
Hugs to Kitkat over your doctor/information issues! Poor you. What a nightmare. Hugs to Joan too for organising our meet up. I can’t stay for the evening meal as I will need to be picked up by hubby about 6pm. Hoping to have lunch with some of you though & a trip on the canal in the afternoon. Perhaps Joan you might like to collect mobile numbers from everyone who is coming so we can get in touch if we are lost/delayed/late etc & to find out where everyone is! Looking forward to it as the only person I have met so far is Chascat.
First day back at work today. Doing 2 days split over 4 half days & increasing hours to full time (& full wages) over the next 6 weeks. Felt self conscious with my short grey hair, hat & dodgy looking nails ( and extra weight too) but currently working with a new team of people who don’t know me so I look normal to them! Came home & had a nap this afternoon…slept for 3 hours before the phone woke me! Must have needed the rest.

Hugs to all

Twinky x

Carmy - I finish my “normal” rads on Wednesday, will be marked up by my onc tomorrow (whatever that means!) for the boosters which will start on Thursday x

Hello MM’s

Well, last rads done and dusted for me now! Woo Hoo! Its such a good feeling and whatever will I do with the extra 3 hours a day?! My armpit is quite sore now, cant understand why as its also numb! The scar under my arm is sore and I have a lump at the end of it, guessing that is scar tissue or an ingrowing hair or maybe a pimple! I wish I had known that my armpit would be affected by the rads, I only had rads to my chest wall, so didn’t put aqueous cream on my armpit until after it started to go pink. My chest wall is absolutely fine and I am convinced that is because I have applied aqueous cream ever since my mx back in January (all you ladies who have just had surgery, please take note!). My feet have also started peeling and I have a fungal infection on them (remnants of chemo?!). Both my arms are uncomfortable, one from having chemo and one from having rads. The veins on the back of my hand are still red from the transfusions. Other than that, I am absolutely fine!! Tee Hee! I was just thinking about the after effect of the treatment this evening and realised that I still have a way to go yet.

Megsmum, CONGRATULATIONS! Its good to hear baby and mum are doing well, despite the difficult birth. Xxx

KQ, how are your eyes now? I had to have some drops for dry eyes when I was having chemo. Although they were weeping, it was because they were in fact dry! Hope you had a nice time at the birthday party.

Waiting too, Clare, hope your cold subsided. Did you get your rads sorted? How many sessions do you have to have?

Beryl, how are you getting on with the house sitting? Hope all the animals are behaving!

EBHippo, nice to hear from you again and I’m glad that you are getting your life back again! Take it easy, you have been through a tough time and deserve to get back in the swing of work gently! Hope you are still able to join us in November.

Ceej, hope your nails sort themselves out! It sounds like your niece has really embraced a new way of life! That’s great, to learn something from a hard time in your life, well done to her, no wonder you are proud of her. I hope your shoulders benefitted from the sports massage.

Kitcat, that’s dreadful what happened to you! We shouldn’t have to worry about basic stuff when we are going through treatment. We should be able to rely upon being informed if that is what we have asked for. I am really sorry to hear you are still suffering so much. Your tiredness, is that mainly due to the double doses you had? I am sure there was someone else having double doses too, but cant remember who it was now.

Carmy, glad to hear you have spoken to your onc about your brachy and that she has put your mind at rest and answered your questions. Good luck with your decision and with the rest of your rads.

WS, glad to hear you have your drains out and that everything is going well with your recovery. I remember getting shooting pains along the line of my drain, but they did ease in time. I am soooooooooooo sorry to hear that Socks has not reappeared. Big hug, it must be so hard not knowing where he is. I agree with you, it does seem quieter on here at the moment, natural I suppose, but don’t worry, I am sure you will have plenty of company until you have finished your rads.

Twinky, glad you have gone back to work and hope you manage to increase your hours over the next few weeks ok. Yes, I will sort out mobile numbers nearer the time for our meet up. Sorry you cant stay to the evening meal, but it will be lovely to see you in the day time.

I am off to bed now, have a good night ladies, I still keep thinking about several ladies who we haven’t heard of from a good while.

Joan xxxx

Hi- hope you’re all ok. Was due to start 20 sessions of rads today but the first one was cancelled. I was so upset and got really emotional - the tamoxifen are also really affecting my moods - has anyone else noticed? Anyway hopefully start tomorrow and have a rads friend- someone I met on here so we will be going together which will be great.
The weather is going to be lovely all week so hope I get to have some time in the garden.
Short post as I am very tired
Nite Nite
Bettie x

Well done on finishing rads Joan x

Hello Marchies
Apologies for not posting sooner and in reply to Joan I will be joining you in the evening too in our November get together.
Am recovering well from surgery and wounds are healing although can still see couple of stitches that haven’t fallen out yet. Been told they will at some point. My next appointment with PS is 13th however my OH is taking me to Cornwall Wednesday for 5 days and am grateful of the time away for change of scenery.
I have oncologist appointment booked for 21st but am looking to get it brought forward as I want to know more about the clinical trial SUPREMO with regards radiotherapy.
We celebrated my OH’s birthday this weekend and safe to say he is recovered after much alcohol induced partying! He said it will be a birthday (and year) he will never forget.
To all who are recovering from surgery stay strong and to all who have finished Rads or about to embark on first course well done on getting this far.
Enjoy the Indian Summer!
Love Dani XX

Hi Dani,

If you would like to give the helpline here a ring they should be able to tell you more about the Supremo trial you refer to. Lines open at 9am until 5pm today 0808 800 6000.

Hope this helps. Take care,

Jo, Facilitator

Morning MM’s,
Raining here at the min. Party was really good on Saturday night but I think Instayed too long and wore myself out as felt sooo tired Sunday and yesterday. Am ok now though :))))
Ceej… Re Ipad…go to settings, general, then keyboard, you’ll see auto correction as second one down so just slide it to off and you’ll have an annoynace free ipad…it is so much better.
Twinky…think that is a goid idea re mobile numbers as I am terribly prone to getting lost/late or delayed lolol
Patchit… Whoooo Rads all done that’s brill, well don you…I don’t think I’ll even be stating till mid to end of Sept…shoild be finished by November lol Any combination for the meal is fine with me, sounds great having had a nosey at the menus already
Danigirl… Hope you have a lovely break in Cornwall, it is such a beautiful place x
Carmy… Pleased you fell better about the brachybtherapy…I too am haing the four booster sessions as my lump was close to the surface on the undersideof my breast.
BerylS… Hooe the dog behaved in the car and you had a lovely walk.
My eyes are still watering and driving me nuts so will ask onc for soemthing at next week when I go for Herceptin. Think am being threatened with some kindof drug too even though I was only slightly er/pr+ sowill have to see…
Have alovely day all
Love
KQ

Morning Ladies

I had a fantastic weekend away with my old schoolfriends and OH’s. Partied too much but really enjoyed myself. Not sure going down a zip-wire was such a good idea though!! Pulled my reconstruction a bit but all’s OK

A busy day ahead today - 8th rads session then a counselling session and then I am going over to the Olympic Park to watch the swimming this evening. My girls are back at school today for one hour only so then will enjoy a nice afternoon with them before they are back full time tomorrow. The house will seem very quiet without them.

Joan - well done on all your plans for our weekend. The restaurant linked to the hotel sounds great and good value. I did have a look at a couple of other options but to be honest they were coming out quite expensive to have use of a private room so I think the option of a cordoned off area is much better. Glad your rads have finished - I have another 18 to go!!! This week I have 9 medical appointments - it’s mad!!!

Carmy - glad you are feeling better about your treatment - its good when the medical profession take the time to explain in detail our options - makes things much clearer in our heads - then we only have to remember what they have said which is not always easy with chemo-brain!

Dani - enjoy Cornwall - hope the weather is good for you.

Bettie - Sorry rads were cancelled - will you start today now? I haven’t started on tamoxifen yet - am seeing my onc on Friday so maybe he will suggest a start date. Not in any great hurry - already suffering from hot flushes and don’t want them to get any worse.

Wintersocks - so pleased you are recovering well and have had the drains removed - that was one of the weirdest experiences I have had. Felt like one of the tubes was so far inside me that it had to snake its way out.

Kitcat - sorry to hear your news and that information has been kept from you - very upsetting. Hope you start to feel better symptom wise - lots of rest xx

Off for a shower now and to apply stuff to my rads area - I have been given a mixture of aloe vera and an oil which seems to be doing the trick so far.

Enjoy the sunshine

Jane x

Morning lovely ladies
Just a quick post because we are due out shortly. Hubby is taking me to a shopping centre because he thinks I need some retail therapy and do something normal. We hace terrible shops where we live and we either have to drive to Norwich or Peterborough which is over an hour away. I love John Lewis so we will certainly be going in there.
Socks - So lovely to hear from you and glad that you have now had your drains removed which much be such a relief. Also that you had a caring nurse which would have made all the difference to you. Sorry that little Socks hasn’t made an appearance yet but you never know. I’ve been watching a lot of the Para Olympics and they have been brilliant to watch so far. The athletes are such an inspiratrion and I get quite emotional wathing them all achieve not matter how well they do. I wish they would be more positive about the colour of the medal they win. To win any medal is fantastic and I think the presenters should instill that to them instead of making them feel otherwise. I’m especially thinking of the table tennis player who said he’d let everyone down and that he was sorry he only got the silver! He should be proud of his silver and move forward and celebrate his achievement. It will be nice to meet you in November and all of our other ladies, before we know it we will be upon us.
H

WHOOPS hadn’t quite finished and must have caught the post key.
Have to go now but I will be back later to catch up and post again. Just realised that there’s another page of messages I haven’t read yet!
Best wishes to all and take care
Beryl XX

Joan, very happy with all you have sorted re our meet up. I will be having evening meal with you all, and I must now look at the times the trains leave to get me home!! Thank you thank you thank you!!
Glad you have some answers Carmy and are feeling calmer!!?? :slight_smile:
I am very sore under my boob now and the nurse gave me some gell and a dressing to wear. My nipple area on that boob is more raised and red, did anyone else have this?
Lost half a finger nail a couple of days ago, very uncomfortable and unsightly!
I havent met any of you from here, and not really had anyone face to face to talk to who is going through the same, until I went foir rads yesterday and sat next to a lady who is in the same place currently. It was lovely to talk to her and helped me such a lot, I envy those of you who have been able to meet up, and cant wait for November.

Joan yes a meal a the hotel sounds fine for me, I have googled their website and checked out the veggie options.
Catch up with posts later
Jane

Hi ladies
Another sunny day and I’m in my windowless office – oh well – a job is a job! At least I’m leaving early for the hospital today. My sports massage was great tho I seem to have pulled the muscle in my bum cheek (hamstring she says) so I’m really stiff today! No gym for me tonight! I’m almost thinking about joining a local running club as I’m the sort of person that if I cant do it and want to learn to do it – I just get out of breath too quick! So we will see.
WS – Yeah life is getting a “bit” back to normal – once the OH’s parents go home in a couple of weeks then I will relax a bit more. OH is in Hull today – I know the festival starts on Thursday and continues over the weekend so I am ASSUMING that he will drive back down here and pick his parents up and take them back to Hull for the festival. I don’t know if that will be Thursday or Friday – so obviously if it’s Thursday he wont be asking me to go with him as I have rads and work – he MAY well say he wants me to go on Friday – all depends on the sleeping arrangements in his flat ! don’t think Ill know til the last minute as usual! We WILL catch up there. Glad to hear you’re getting there slowly.
Pachit – I’m thinking I may just be with you for lunch as it’s a Sat and normally the only time I get with my OH, but I’m not absolutely sure about that, I’m still wondering whether I’ll get the train too (New Street am guessing) as it only takes 20 mins and Ive never driven in Brum. I MAY however be in Worcester, in which case OH would drop me off and pick me up. Sorry wish I could be more concrete – but that’s what happens when you’re with someone like my OH! Who never seems to know until the last minute what his diary holds! Am looking forward to it tho!!
KQ – I too suffer with “dry eyes” – I was told years ago that my tear ducts don’t work properly, and my eyes are always having blurring, watery moments. Pachit is right, it is cos they’re dry, and I use drops every morning (I got loads free from the GP too) and that just helps. Oh and thanks for the Ipad settings – done!
Bettie – Tamoxifen is weird for me – my neck is definitely hot all day! And I’ve realised it’s not hot flushes in bed anymore it’s just constant hot and I cant sleep with the fan pointed at my head! It’s quite worrying really, as I’ve always felt the cold, and now I feel like a lighted match!
Gabby - yes it’s comforting to speak to someone who knows EXACTLY what you’re going through. I’ve found that noone in my immediate circle really understands, and even a friend from my old work who had a MX 20 years ago only had radiotherapy so I didnt feel I could talk to her about chemo. Oh well onwards and upwards!!
Virtual hugs to everyone xxx

Hi Everyone
Remains lovely and sunny here, been out for a walk on the prom and am not getting ready to go for my last lot of massages as back to work next week!!
Beryl- Enjoy john Lewis, hope you get some good stuff, some sales still on, called in to Monsoon this morning and bought a top for hols reduced from £32 to £16 so am happy!
EBHippo - great to hear you are back to work. Thats the only thing i am worried about is the tiredness, going to be working part time for 4 weeks so hope i cope!
Ceej- Great to hear you are begining to do normal things like getting your nails done and dying your hair. My nails are a mess and my hair still very slow growing but I suppose after all we have been through its not too bad!
Kitcat - Sorry to hear you have been poorly and how awful for you to have such poor communication with your medical staff, you think they of all people should know what they are talking about but at least you have had reassurance from onc.
Marie67- hope you had a fab birthday. I spoke to HR and I will have to use my A/L for phased return, its policy, bit of a bummer but will have to go with it.
WS- bit of a hassle having to chase district nurses but at least your drains are out now and you can move around better. Where do you live if train goes past your house?
Carmy- great to hear you are feeling better getting more info on Brachytherapy and you are able to make an informed decision on what to do, thats the way it should be. dont know why the medics dont share enough info with us.
Patchit - Restaurant at hotel fine with me, I saw that deal for £22, would be good if we got that but no worries if not. Last rads for you Yeah! My armpit is very numb also as is part of my arm, back and boob!
Twinky- good to hear you are back at work also, goodness you must have been tired sleeping for 3 hours! I am going to do mornings only to start with so i could sleep in afternoon if needed. I can imagine it will be tiring!
Bettie- My moods have been terrible on tamoxifen, OH was getting annoyed with me the other njight as i exploded at him for no reason and I do know there was no reason but onc says moods may settle down! If they dont I am not sure i want to continue with them for 5 years!! Will have to see.
Danigirl - Enjoy Cornwall!
KQ- Great to hear you enjoyed your party.
Wolsty- Zipwire!! Goodness last time I was on one if them was at GoApe in the Lake district!! Got stuck half way and had to swing about till I got to end, never again!!
Gabbylamb- My skin has broken under my boob, have to dress it every day and got some cream for it also my nipple was raised and very red and is now peeling but my boob generally is sore with stabbing pains, I am now 2 weeks post rads but doc says it should settle, hope so!!
To everyone else hope you are ok and lookingt forward to meeting up in Nov. Thanks again Joan for all your organising.
Mary xxx

Carmy, have been marked up today by my onc for my rads boosters, just using a pen, nothing to worry about. I asked her about brachytherapy, she said we haven’t used it for BC in the UK for about 30 years and that the external beam booster is actually better, she said for some reason they do like to use brachytherapy in Europe but there’s no need to anymore so don’t worry about choosing not to have it, sounds like you made a good choice

Hiya WS,
Los glad to see you seem to coping well post surgery. Its has put my mind at rest a bit. My surgery had turned in to a bit if a farce. I was all set to have it doneThursday with ore op today. I then got a phone call last evening to say they want to do my surgery at addenbrookes so a change of hospital. It’s all to do with my clot which I have had since may so why they didn’t make this decision earlier I don’t know. The reAston they gave me for it is that I mnot need access to a clot specialist if there is an emergency and they don’t have one at the private hospital where I was having my surgery.
Its all so last minute, I could have cried last night. I do know it’s In my best interests, but I was all psyched up.
Ah well , roll on the 11th now.
Love to all,
Sorry for whinging.
Rae
X

Well I’ve been typing all this for ages and had better finish.
This is all I have left of my messages after inadvertantly pressing the wrong button! I’m so mad at myself I could swear! There’s no way that I can repeat it all again. Needless to say I’m thinking of you all and when I can get my fingers to act properly on this laptop I will try again. Love to all Beryl XX

Hello ladies, quick post as I am off out for a meal to celebrate end of active treatment!

I have booked the colmore restaurant for our meet-up! The table will be set up as an L-shape so that they can get us all on the same table. We need to make our food choices and pay them a £5 per head deposit as they will be in their festive season by then. Deposit and food order need to be with them 1 month before the booking so by 10th October. I haev asked whether we can book our food choices from the meal deal menu and will lety you know when I hear back. Goodness, I hope this is all ok?!

Rae, just wanted to say sorry you have had a delay with your op. Addenbrookes is great though and I am sure you will get first class treatment there. Are you still having the same surgeon? Also, did you give any thought to joining us in November? Be lovely if you could…
Joan xxx

Hello Ladies,
Rae : That is just annoying when the hospitals are disorganized, especially over something so important as the clot issue. I don’t think they have any idea of just how much it messes with our heads when they change things last minute. You are NOT whinging! I have beeen exactly the same (upset and cross) when it has happenend to me. Hope fully all will go smoothly now for you on the 11th. But more waiting…
The district nurse came today to have a quick look where the drains were removed and she said it looks fine, re-dressed it and is coming back on Thurs. My upper arm is quite swollen and numb and I asked her if it was Lymphodema and she said no as it usually goes hard. She advised to keep my arm elevated where poss. So, no hair/eyebrows/eyelashes/breast/nails - and now with the arm in the air!!! -
I am taking brufen/para for the pain which is manageable. Any one else had swollen/numb arm stuff? with mx and ANC. bit worried that’s all. Joan I see you describe numbness etc , was this following your mx or after RADS?
Carmy : Thanks ever so for your lovely message. No, the pesky cat has not returned. He is on a number of ‘wanted’ posters now placed at various sites - but nothing doing, I think if he was knocked down someone would have found him as I live in a small town. Have you made a decision re brachy-thingy?
Twinky : Do you feel settled into work now? I don’t know what I will do when more recovered as I had to stop my job (full -time gardening). My employers did behave rather unfairly towards me , but I was in such a state following dx, that I did not feel able to challenge them.
Bettie : Has your tiredness passed? did you meet up with your friend and get RADS1 done? was it ok?
Ceej : I can’t decide whether to go to OH. he doesn’t live in Hull but that’s where I get the train to. I am in 2 minds.
Peanut : have pm’d you my exact location as don’t want to be identified cos of my son.
There are a few ladies who have not posted for a bit Poppy, Dulcie, JayJay, Amylou. I do hope they are doing ok.
As the district nurse is not coming now until Thurs I might try and motivate myself to go for a walk tomorrow. I must confess I am finding it difficult to get out of this ‘slump’ sometimes. I really wish the hair was longer so I could go out without feeling self-concious (sp?) There still seems so much around the sides, but not on top!!
Dani : Lovely! Cornwall! I do hope you enjoy yourself and that James’s is recovering too!
KQ - I had the watery eye thing with TAX and swollen they were too. My BCN told me to put a hot flannel on them.
Woolsty - did you really go down a zip Wire??? yes, 9 appointments is bonkers! - but is like that sometimes - I have none this week.
Beryl : buy anything nice? Yes, I am so much looking forward to meeting every one as well. Gabbylamb : I too have lost 2 1/2 fingernails and my toenails on the right foot look very bruised (TAx again). Yukky yuk.
Chascat- I hope things are ok with you.
Love
WS