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May Moonbeams

Dodo14
Member

Re: May Moonbeams

Trish - well done and glad all ok this time. Hope the SE are kind. x
Zuzy - Good luck for tomorrow. We will reach the car park together. x
Rachel - Thanks for the information, comparing different stories is helpful in making a decision. Not sure I could face further surgery for a reconstruction though. How is the kitchen coming along?
Barbara - No node involvement at original biopsy but they check further nodes when doing surgery I believe. I am not being offered reconstruction at the same time due to RT.
Penny47
Member

Re: May Moonbeams

Rachel-Personal independence payment =that's DLA's new name!!! I am watching with interest to see if you will get it! I am too old to claim it.

PS what has happened to the site- the font has changed!
barbara2013
Member

Re: May Moonbeams

Thanks Rachel- I've already done the phone call and now have lots of forms to complete- will try and make progress with that tmorrow- Hope your kitchen taking shape!
Jo- I wasn't offered the choice but I did still initially grieve for the breast and felt alientated by the recon (ld flap). The counsellor at the clinic told me not to see the recon as strange or ugly but as having saved my life. The recovery from the op is obviously slower but did not cause any particular problems. Do you have node involvement? This seems very significant in recurrence rate. I am also terrified of this ( as well as of a new primary in the other breast of course!) but it is possible recurrence can also happen after a mx as well as after wle. WLE's can mean several op's but then a recon (if you opt for one) also means more surgery. My understanding is that wle plus radio gives as good a chance as mx (not sure about mx plus radio in this tho') but you could ask surgeon to give you the latest research figs here, making sure it is relevant to your type of cancer and your proposed treatment plan.
I am not sorry I had mx and i do feel positive about the future now (better than last few months) but each individual has very specific situation- physical and emotional so no-one can give a definitive view. I do not feel any less feminine. Let me know if there are any questions you have that I might be able to answer.
Sleep well all moonbeams.
Rara
Member

Re: May Moonbeams

great news .Suzy!
Jo, I was initially told mx but then At last minute they decided on getting both tumours (-aliens) by
wLE as they decided they weren't joined......but during op they discovered they were joined.....so I should have had an mx really. I had even offered them a bogof! So my instinct would be an mx. I have a friend aged 40 and another aged 50 who have both had mx due is size of their aliens and both grieved for the loss of boob but both pleased with decision .... both say it reduced the mental anxiety Of cancer returning. Both used to their prosthetic now and both having recon next year.
I hope this helps but I can understand your deliberations

Barbara, I did the claim for ESA today by phone . The advisor was so helpful. It took 40 minutes! she also advised me to apply for Personal independence payment (well I think that's what it was called) on 0800 917 2222,. She also said that I will now qualify for council tax benefit.
I am glad I finally summoned the mental capacity to make the call!
fect 5/6 day 13 still achy and tired but brain less mushy. Taste buds improved. Nails still holding on! Baby hair sprouting all over the place! Appetite gone again but that's ok as have eaten quite well since been on this type of chemo.
Love to all
xxxx
Dodo14
Member

Re: May Moonbeams

Yes please Barbara. You can private message me if you like. Having seen the surgeon today I need to make a decision. Of course if I go for a WLE and there aren't sufficient margins I could end up having a second op which could be an mx anyway as I am not big. My OH thinks I should have mx to stop my worrying after its all done. I just don't know.
barbara2013
Member

Re: May Moonbeams

Jo- no I didn't have a choice because of where my first cancer was (behind the nipple) and had another small cancer plus areas of pre-cancer. At least they never offered another option- of WLE or of adjuvant chemo/drugs to shrink. And I knew nothing then-so didn't question whether there were alternatives, but I am not unhappy with having had it. So can't advise on making the choice I'm afraid but happy to tell you of my experience of the op and after etc. if helpful.
Zuzy
Member

Re: May Moonbeams

Bloods are fine so all steam ahead for final one on Thursday, yeah!
Jo,I had tamoxifen and zoladex before my surgery to shrink the tumours and increase chance of margins onWLE, got them and am happy with decision not to have mx. Good luck on Thursday xxx
Dodo14
Member

Re: May Moonbeams

Barbara - was your mx your choice or what was advised? I am tempted to have an mx (maybe a double mx) to lower chances of a return visit from the dreaded C but the onc and CS keeppushing for maximum shrinkage to minimise surgery. I am torn - am I being OTT in my thinking?
barbara2013
Member

Re: May Moonbeams

I'm tempted to celebrate both- also want to shout 'last chemo' but also want to have a moment when I banish the meds for SE's-( altho' suspect the meds for piles will have to stay a while longer-sorry too much info- but really fed up with this SE- seems just too unfair). Always keen for an extra celebration but the car park? Last day of chemo.
Penny I am thinking perhaps Tenerife or Lanzarote in Nov if possible. Tokyo has suddenly come into my fantasies for next year because my son is moving there- have never been much of a long distance traveller apart from US when my son was Washington and never considered Japan. Now thinking (in an ideal world) of Japan for Spring- cherry blossom- son no 2- and Boston for autumn -the fall- son no 1. Will have to plunder savings and investigate travel insurance (anyone done this?)- but it is these dreams keeping me going.
Good luck to those at the bar this week- well done Trish and Jo on yesterday's trips. Jo if you want to discuss mx I have had one- I think others have too.
Rara
Member

Re: May Moonbeams

Well done Trish! Glad it was better this time.
my vote is we reach the car park on the day of the last dose!
I know we still have the side effects to get through but wow, I can't wait to be able to say those words out loud " last chemo done"
xx
skatesmakes
Member

Re: May Moonbeams

F EC-T 5/6 Day 1 - Been at the bar today. Had a bit of trouble finding a vein to use again but got there in the end!

Had piriton & hydrocortisone before treatment today so no scary reaction but still there for 4 hours as had to take it slowly. A bit wiped out from the piriton but otherwise ok. Going to make the most of the next few days before the se kick in have a feeling it's going to be expensive though as need to go school uniform & shoe shopping....urgh, not my favourite job.

Rachel - very exciting times with the kitchen & thanks for the cyber hand holding, it's much appreciated.

Jane - I like the idea of last treatment as an achievement, I know you have the se to get through but it does feel like a milestone, can't wait for mine, just one more to go.

Hugs to everyone, stay well xx
Dodo14
Member

Re: May Moonbeams

I'll bet it did Jane. Anyone else out there wanting to vote?
JaneyW
Member

Re: May Moonbeams

Well, yeeees, you're right of course Dodo, but it still felt like an achievement. It's the same with the rads, too. They told me that the skin and tiredness could could get worse for up to a week before it started to get better, but dropping the breast top that I'd been carrying to and fro for the 15 days into the bin felt like the finish.

Jane x
Dodo14
Member

Re: May Moonbeams

You still have to get through the SE of the cycle though Jane...
JaneyW
Member

Re: May Moonbeams

Let's have a vote. I say car park is after last dose. I know the oncologists count end of chemo as the date the next one would be due if there was to be another one, but that doesn't seem like a good milestone to me as nothing happens.

What do you think, Moonbeams?
Jane x
Dodo14
Member

Re: May Moonbeams

Thanks Lola - Have been into chemo suite today for bloods and they had a feel - they think it feels fine. I can definitely feel it but maybe it just takes longer to get used to it? Mine isn't stitched in place so it can move a bit they told me and that because it is a foreign body inside it will feel a bit strange.
FEC T -5/6 Day 19 - Bloods ok and all happy with me so good to go this week for my final Tax. He did ask if I wanted to go ahead which I found odd. Of course I don't but this is the treatment they are offering me. Can cope with the reduced dose SE.
Not concerned about wrist - due to improvement and delay they are discounting extravasation and think it is more likely an insect bite reaction. Pesky bugs!!!
Also talked about delaying surgery further and seeing if can obtain further shrinkage with just the Herceptin. As I am already considering having an mx anyway not sure what advantages this offers me. Confusing! Will talk further to the surgeon tomorrow.
Zuzy - All good to go?
Trish - hope all goes well today. xx
Lola65
Member

Re: May Moonbeams

Hi Dodo,

Mine feels round, like a hump, and I think that is how they should feel. They are stitched in place so shouldn't move, but if it has moved the chemo nurse will know straight away when they draw some blood out before giving you chemo. I've had mine since the beginning of April and can't feel anything even though it protrudes quite a bit under the skin.

Linda xxx
Rara
Member

Re: May Moonbeams

Thinking of the moonies having bloods done, including Jo and .suzy and those having to go to the bar including .trish today.

one step closer to the car park

jane, your posts re radiotherapy have been very encouraging thank you
day12 for me and hoping my aches are going to go away today.
operation kitchen refitting commenced at 8am today! Whoop whoop!
A little bit excited. this time next week I will have a shiny new kitchen with bells on!
Marie are you home yet from .switzerland?
Have a good day all..... Trish, I am holding your hand through cyber space
Dodo14
Member

Re: May Moonbeams

You too Zuzy. x
Zuzy
Member

Re: May Moonbeams

Hope bloods are ok today Dodo xx
Dodo14
Member

Re: May Moonbeams

Port question - for Lola/Linda if you are around? When you feel the drum area of the port should it feel like the flat surface of a drum? This is what I would have expected but mine feels more like the round edge - could it have turned? I know this sounds really silly but that is what it feels like and it presses on my skin as if it is pushing out.
Dodo14
Member

Re: May Moonbeams

Zuzy - congratulations and good for you for still pushing for promotion whilst going through this.
Penny - Sounds a good idea but they don't use my arm veins any more now I have the port so I don't think that is going to work for me. I am going to have a long chat about my veins tomorrow thoughbecause of the wrist swelling etc. It os agony straightening the arm and when I look in the mirror my left looks very different to my right and it makes me feel very old.
I really have had my fill of chemo now I think. I know it has done well in treating the cancer but it really takes over your life. Worrying about everything I eat, do etc and being scared about my temperature and every little pain is really hard work. I am tired of it all. Only 1 more to go (all being well) and then I can put it behind me and move on to the next part of my treatment. Do you reach the car park when you have had the last dose or at the end of that cycle?
Penny47
Member

Re: May Moonbeams

Jo did you see my post about the vein problem? I asked for an extra washout having seen a post on another thread about this and the nurses were happy to oblige- it kept me there for another half and hour but one very well spent. So I had my usual plus another 500ml. Since then I have had very little pain and it feels to me as if the phlebitic veins are down and more flexible. I can reach and grasp and may try some gentle weeding this week when I've got my "puff" back. I can't believe it is this simple. Why didn't the chemo nurses say anything when I showed it to them? On the other hand, bless the sister who agreed I could have the extra washout.


Jo and Jane- Baby bird fuzz, me, but I can't tell the colour- it's either baby blonde or grey- I think grey. And the fringe in front is auburn, my original tone. So I expect a sort of tortoiseshell cat hair colour. I've always envied our tortoiseshell cat and tried striping my hair to match in the past. this hair growth started between cycle 3 and 4 and I am disappointed to see that facial hair is making a comeback. Oog.

Barbara and Trish you can't be serious about Tokyo...except I've just looked on my globe. Tokyo is in the part of the world (below 35N) where you can get beneficial levels of sun's rays in Oct-November! So it would be an ideal place to have a city break if you could get a good flight deal! Me, I'd probably plump for Bermuda...personal associations (my parents went there at Easter and I was born at Christmas...it was still the British Empire then!)

Zuzy I am so impressed to hear of you getting a job at this point! Really moving on...I keep getting tempted by jobs but the way things are I will have a few scores to settle with my boss when I do go back to work (after Christmas sometime-phased comeback!) and I only have 3 years left to work in Local Government before I have to retire, so that tends to focus my thinking about a new job a bit.
skatesmakes
Member

Re: May Moonbeams

I've also joined the fuzz gang! Mine's baby blonde mixed with a little of my normal brown so may end up like a tabby cat!

Well done Jane, lovely to hear of you moving on.

Zuzy - congratulations on getting your new job, when do you start?

Barbara - I hear Tokyo is warm in November....just a thought xx

Well I'm back on the steroids today & at the bar tomorrow for number 5.

Good luck everyone for the coming week whatever it holds for you & stay well, Trish xxxx
Zuzy
Member

Re: May Moonbeams

I'm at 10, just tax so hopefully willbe in and out....will be thinking of you! I also have fuzz, yeah!
Dodo14
Member

Re: May Moonbeams

Penny - my onc wanted me to see CS between numbers 5 and 6. Don't knowif a further scan is involved or not.
Jane - do you have any further scans at this point or have you been given the all clear? I also have fuzz on my head - mine is baby blonde! Not sure that will suit me at my age.
Zuzy - I am in at 10am Thursday as am having second herceptin as well as last Tax so need 4-5 hours again. Another long day! What about you?
Was reading about extravasation on the Internet last night (big mistake). Scared myself silly with thoughts of skin burning off and possible skin grafts or amputation! Couldn't see anything about such big delays though - it seems to mostly happen during infusion or occasionally a few days later - not seven plus weeks later! I am trying to comfort myself with the fact that it doesn't seem to be getting any worse at the moment and possibly slightly improved. I wonder what onc will say on Monday?
Zuzy
Member

Re: May Moonbeams

well done Jane, glad it's all done for you
Barbara, lanzarote is nice, we've been a few times, enough to do to occupy you for a week or so without feeling that you need to rush about to fit everything in and miss out on relaxing!
Dodo, good luck for bloods on Monday, mine ar Tuesday. What time are you in on Thursday?
My other news is that I had a job interview earlier in the week and have been offered the job! V excited, feels like I will be completely putting this behind me and moving on now!
Have a lovely weekend everyone xxx
JaneyW
Member

Re: May Moonbeams

Barbara, if you can, take a friend to the scanning/planning appointment. They give you lots of info about RT, two pairs of ears are better, and it can be up to a couple of hours in the hospital. Nothing bad, but tedious on your own. There's lots of very useful discussion in the radiotherapy forum on this website. Talk to the radiographers about anything and everything that bothers you, and ask (and take) their advice as you go through.

There were no trumpets when I finished, but I did drop the little cotton 'breast top' that had been mine for the duration into the bin with some satisfaction. So it's on with the next 17 Herceptin infusions, and Arimidex for 5 years.

And I have peach fuzz on my head! Not all of my head, mostly just at the back, but it's there! 5 weeks after last AC. Hope it stays gone from all the places I've been removing from all these years, but I bet it comes back there first!

Stay safe, Moonies. You are all wonderful, and I feel lucky to have you as friends.
Jane x
barbara2013
Member

Re: May Moonbeams

Well done Jane! I have CTscan appt at radiotherapy clinic next week- Jane is this a long appt and is it one where you need support? My OH has a hosp apt himself then so wonder is it helpful to take a friend or is it an easy one?
Penny and Zuzy- I'm hoping for a hol in November too as expect rads to end late Oct. Someone mentioned Lanzarote to me but I don't know Canaries or Cyprus at all- (seaside towns in Kent or Essex -now you're talking!) so any tips for good places welcome here too.
Welcome back Jo- glad hol went well and your kitchen work will be exciting Rachel- great distraction.
Had quite an intense emotional day today- long meeting with Onc and some new understandings for me about the uncertainties of this BC life (will perhaps unload another time) and then back home my lovely son was delighted to hear he had got the job he wanted. In Tokyo. So pleased for him but quietly heartbroken too- he doesn't go till November- will def need a break in November.
Enjoy your weekend all of you whether home or Hope Cove( in its many locations)
Penny47
Member

Re: May Moonbeams

Jo- do you need to ave another scan before you and CS can discuss your options? I'm trying to time things so I see the CS and have the scan about a week after Cycle 6/6 and then steal away for for a short break just before the op, to get some rays to take us through into the winter. OH could use some warm weather as well.
Dodo14
Member

Re: May Moonbeams

FEC T 5/6 Day 17 -Hi Moonies - We are home from our short break. I had a lovely time but am shattered having done more in the last 4 days than the previous 3 months! My wrist hasn't got worse although not much better either. Will speak to the oncologist about it on Monday and keep moisturising in the meantime.
Congratulations and well done Jane - is that the end of your treatment now? What happens to sign you off as it were? I am so pleased for you and thanks for all your RT tips.
Penny and Zuzy - most places are still warm in October - lucky you! Not sure when we will be able to get abroad.
Trish - Glad you finally met your new niece. Good luck for Monday...
I am back in the bar (for the last time) next week. Onc and bloods on Monday, Chemo on Thursday and also meeting the CS on Tuesday to discuss what and when my surgery will be. Need to get my head round whether a mx is a better option than a WLE or not (just in case I have a choice) - any thoughts?
Aah it is good to be home - makes me appreciate my 4 walls all over again...:)
Penny47
Member

Re: May Moonbeams

Great to see you in the car park Jane! Those reflections on RT have given me lots of hope! Fabulous.

Fec-T 4 day 3: I have had a great day and my vein pain has almost gone! Hope this is not just temporary! My back aches a little but that may have been trying to keep up with YD who has longer legs than me and can't walk slowly...
Rara
Member

Re: May Moonbeams

CongratultionsCongratulations Jane!
Yay!
what next for you?
X
JaneyW
Member

Re: May Moonbeams

Another landmark - I can now talk about radiotherapy in the past tense! Last of 15 today. And it's been so much easier than I had feared. Worst bit is trecking 20 miles in each direction every day, but we found a lovely little coffee shop nearby and tried to visit there a couple of times a week to make a treat.

There is no pain, you feel that the radiated boob is rather hot inside for a few hours each time, and the skin gets a bit pink. My nipple did get sore and swollen, but when I stopped wearing a bra that settled considerably. And of course the cabbage leaves helped when I was still wearing a bra. The leaf sort of turned into one of those thin blister plasters and stopped the rubbing on the nipple. I was advised to stop wearing a bra because even with a soft crop top it was getting a bit red under the band that goes under the breast.

I know we are all different, and some ladies do get more skin reaction. Indeed, I've been told that my skin may get worse for up to a week after the end of radiotherapy. But I am firmly convinced, as are the radiographers, that my moisturising has helped. They recommend E45, I've been using vitamin E because I had some and my skin seems to like it. Some use Bio-oil. In truth I don't think it matters - the important thing is to start a few days before, do it twice a day at least, and be very gentle.

The radiographers are all very knowledgeable so ask them all you need to know.

Hope all you Moonbeams have a good weekend. Hugs to you all
Jane x
Rara
Member

Re: May Moonbeams

Hey lovelyMoonies
well done Namaste, you are amazing, I don't know how you have coped so well with all your treatments.
Penny, I am so glad you are doing wel on the t. Remember not to overdo it as the fatigue may yet hit you. I hope it doesn't.
barbara I have the same problem when in a group of friends , they all chat and behave normally which is great but sometimes I want to scream at them, "do you realise I am going through mental and sometimes physical torture and anguish here! "
Thats why this group is so invaluable because we all understand each others anxietiS etc. we also understand each others hope for the future.
So who is at the bar next week with Trish? i am losing count! I still prefer t to Fec!
Fec t 5/6 day 9 beginning to feel more energetic which is lucky as I have to finish clearing my kitchen in preparation for the new one being started on Monday. If I end up selling the house, at least the kitchen will be perfect! I haven't applied for ESA yet as my brain a bit foggy this week. The most foggy so far, but then I have had 5 chemos! My tattoo and ct scan are booked for 3rd sept with rads to start 16th and finish 9th october. My friends husband has rads at same time as me so we are going to travel together as neither of us want to do such a long trip alone. he has a brain tumour which they mostly removed but some left.
Have a good weekend everyone and hope all those managing to get away have enough fun for the rest of us and I look forward to hearing about the best bits!
Lovve and hugs to you all
Team Moonbeams athe wonderful xx
Penny47
Member

Re: May Moonbeams

Zuzy Cyprus would do me fine with some great archaeological attractions but I'd be happy just to sit in a sunny/shady place for a week!

Skatesmakes- nothing like a cuddle with a New Person. Safer than schoolkids! I have to make do with James the incredibly smooth cat.(and my OH of course!) Hope your second T goes as smoothly as my first. Try to get a window seat!

Speaking of outings, YD is driving me to the dump this morning to get rid of all the cardboard in the garage which has turned it into a death-trap! I would never have contemplated such a trip on FEC. Maybe it's the steroids?
Zuzy
Member

Re: May Moonbeams

ditto Penny, I'm also looking for somewhere, prob for Nov. we usually go to the canaries in winter but wanted somewhere different, needs to be within 4ish hours flight and reasonably cheap and was thinking maybe Cyprus, got a guide book fom the library yesterday and am going to do some reading over the weekend!! Will report back!
skatesmakes
Member

Re: May Moonbeams

I feel so proud of everyone with everything we've been through/are going through, it really is heart warming to read the genuine support given & that together we can beat this no matter how long it takes.
The last few days have been lovely for me, I've felt well, met & cuddled my new niece & spent some really happy days with my husband, children & friends.
Back to reallity...blood test in the morning & fingers crossed all is ok for the 2nd dose of T on Monday. They've promised to give me piriton & cortisone before starting treatment on Monday so hopefully I won't have the same kind of reaction as last time. It's definitely not an experience I wish to repeat.

Good luck to everyone xxx
Penny47
Member

Re: May Moonbeams

Hey Moonies any ideas about good places to go to get a sunny holiday in October?
barbara2013
Member

Re: May Moonbeams

Really well done Namaste and Penny- sleep well- hope SE's treat you well.
Penny47
Member

Re: May Moonbeams

Hi all you moonies, I have finally staggered through my first T and it all went without incident. Except that I did stub my toe on the way out (those fishnet tights and open toe shoes don't protect you very well from bumps and knocks do they?). With all this concern about losing toenails I cannot afford to knock them about like this!
My worst SE so far was blurry eyes from the Aircon in the room- which was roaring away! I had my heat pad again but missed my Hot Water Bottle and the furry friend who comes and sits on it to really press it home. Whole thing took 2 1/4 hours because I asked for extra steroids and for an extra flush for my veins- there was a post on the painful veins thread I saw this morning so I asked them to do this for me! Somehow I think that will be more beneficial than the extra steroids.
As with the first FEC I am feeling elated it is over and resolved to cope somehow so off I go to take my bedtime meds and curl up with a good book.

Best thing about the afternoon was meeting up with my friend from church and her daughter after her first RT session- painful for her as she has OA. DD and I tried to persuade her to ask the GP for stronger Co-codamol or Tramadol. It was great seeing her. Although Cheltenham is a huge unit I have seen people I know 3 times out of the 6 times I have been there. The nurse who did me today is even the sister of a workmate!

I am now having a chemo moment. Am I the last of us to have the first T? If you know what I mean? Sort of a familiar feeling as I was the youngest in my class at school, the youngest in my family, the younger partner in the marriage etc etc so lagging behind is a lifestyle for me!

Jane-
despite the roaring of the Aircon I could hear the cheering in the waiting room quite clearly!


Namaste - do you think they gave your dose to me instead? I hope you feel that the treatment is resolved now! You certainly have had a packet and I have just been reeling in admiration at how you have stuck to it. At the rate you're going I'll be having my op about the time you start your RT!

Karen, Teresa and other T ladies - thinking of you and the k(g)nomes with little hammers...where can I get some anti-gnome ointment? But seriously I do hope it goes off the way its supposed to. I have 3 additional hot water bottles all ready to load....but only two cats and they don't always get on...
namaste
Member

Re: May Moonbeams

Evening moonies.... gosh, things are moving on quickly for you all 🙂
I was due to have my 12/12 pacletaxol yesterday but it's been decided I shouldn't have it. One of the side affects is nerve damage which may or may not become permanent... the last couple of weeks the numbness in my fingers, toes, legs and feet has been getting worse and after tests it was decided that the risks of permanent damage outweighed the benefits of having the final dose. Over 11 weekly doses I've had more chemo than someone having one dose every 3 weeks for 4 cycles anyway... so trial or no trial, that's me done with this lot of chemo.
Now I just need to spend some time recovering before my op which should be in 4 weeks. I'm exhausted (you all know how that feels) and desperate to get the feeling back in all the numb bits.....
Also, I feel strangely adrift 😞
Thanks for the reassurance about the ESA form too, my Macmillan nurse completed it for me, I sent it back with the 'fitnote' from the surgeon and I finally have some money coming in. There are further hoops to jump through but it's ok for now.
Will try and catch up with everyone... xx
Zuzy
Member

Re: May Moonbeams

Karen, Poor you, My fingers and nails were so sore after tax1 that I could hardly do anything, I originally had my usual brown nail varnish on but changed to black and haven't had any finger pain after no 2, might just be coincidence because some of my other pains have been better after no2 as well but I'm sticking with it until the end now. xxx
JaneyW
Member

Re: May Moonbeams

Good luck for tomorrow Penny (or today if you've gone to bed like sensible people!) We'll all be there with you - you can see us sitting round the room in rows - all rooting for you. You will have the strength.

Jane x
Penny47
Member

Re: May Moonbeams

Aww thanks Barbara! ..and Karen don't worry about sounding off about the pain-I've had arthritis and shin splints for years so I am prepared. I think I atill have a wee tray of tramadol left over from my op 3 years ago...wonder if it's still in date? (Don't tell anyone!) I have squirrelled it away so my family won't find it! Not that they are hooked on it just that co-codamol tends to melt away in this house somehow. Gosh I hope they aren't reading this!

Come to think of it I wonder where I put it.


Zuzy West Wing is going to become my favourite programme very soon. It ticks all the boxes for me- it makes me think, it makes me laugh out loud (that's because of all the American in-jokes mainly) and I really like the characters. I liked Madmen, but I found it rather painful and didn't really identify with any of the characters. Too close to real life! Feeling very mellow after curry and TV and just settling down and bringing the cats in. :&)
barbara2013
Member

Re: May Moonbeams

Lovely to hear from you Karen and sorry to hear about the aches of T- good that you have better pain relief now. Hope Whitby is the break you need- it is a realy great place (I love my English seaside towns!!) and there should be plenty for the kids too- can the teenager entertain the 10 yr old for you You are being a very strong woman in a very difficult situation. A friend of mine wore soft gloves through T treatment. to help her hands.
Penny- hope the curry perked you up and the very best for tomorrow- we're all thinking of you too.
Guest user
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Re: May Moonbeams

yes do not faint - it really is me, 1000 appologies for not coming on here that much
its taken me ages to read all the posts and try to keep up with everyone and what stage you all are, brave brave ladies 🙂
I am FEC-T 4/6 day 8 on 1st T and boy do I know about it 😞 my legs are so painful that I have demanded better painkillers as cocodomol just wasnt touching it and it felt like little knomes were hitting my shins with hammers, so so painful, after a day on the higher strength ones and it is nicely in the background although still there its now bearable. I know people said youd get bone pain but I must admit I thought I would be ok with just paracetemol etc never realised how painful it was, one night I honestly did not know what to do with myself and walking was near on impossible.
I feel quite a lot better today, still very tired and finding the school holidays tiring trying to occupy a 10 year old etc plus a teenager, I am supposed to be going to Whitby on Friday for a week and in a way looking forward to a change of scenery I am dreading anything going wrong as it will just be me and the kids, so if anything happens in the night etc I have no alternative but to take them with me. oh well I am sure we shall be fine
I really do not like the T part, I think I coped better with the FEC part and didnt really want to come on here and be negative so that plus the personal stuff I have laid low, typing at times is hard with fingers that hurt - anyone else finding that?
well I promise to keep up to date on here a little more although not sure if I will get signal in Whitby or not
take care you lovely moonbeams
Karen
xxxxx
Zuzy
Member

Re: May Moonbeams

penny, good luck for tomorrow, I know of people who have forgotten their steroids and had the increased dose on the day so it's not unheard of....hope all goes well and enjoy who west wing, it's my fave programme, I've watched it about 6 times!
jo, glad you're having a good hol, hope everyone else whose away is too
It's funny about docs notes isn't it, my GP just gave me one for 4 months to cover the whole of chemo which says that I might be able to work and might not!
Hope everyone else is ok
xxxx
Penny47
Member

Re: May Moonbeams

Finally heard at 6:15 tonight that I'm up for my first T at 3pm tomorrow. No time to start the Dexomethasone today so...."If you mention it to the nurse they will increase the dose they give you at the session." Now I don't know anything about pharmacology, but I know what I like, and I do not like the sound of this! I'm not taking the Dexamethasone tonight(so I can sleep), but will tomorrow am and at lunch, but I hate to think what a mega dose will do to my sleep tomorrow night! And I'm not sure how this will lower the risk of shock. This is the first time I have had a problem with the way I've been treated. Up to now things have been okay- whenever there has been a problem I've had a helpful nurse who has had a can do attitude and got through somehow.

I suppose really the worse thing that will happen is I will faint and because the space is so tight there I'll wind up in someone's lap! How to make a new friend! Just hope I don't throw up at that point!

End of rant for now. I am more apprehensive than I was before the first FEC. I will have a lovely evening tonight (chicken curry and West Wing Series 1-it's my first time round and I mean to watch them all! ) and by tomorrow I will have been given the strength to face it all cheerfully. I had a good cry at 3:00 when I began to think I was not going to go to the Ball. Now I know I am going I should really be grateful and not ranting...but....
barbara2013
Member

Re: May Moonbeams

A lovely summer evening Moonies!
Felt much better today if very wobbly legged all day (anyone else now have legs that are part dumpling/part aching wool?)
I have awful chemo brain- the massaging arm advice was I think for helping lymph drainage- glad your arm is no worse Jo. I really do have a mind like a thick fog at the moment and I hate it! I can't get any names for anyone/anything right.
Penny I think that scared person inside is one of the most powerful aspects for many of us at the moment- certainly for me- and it is the least visible (or understandable) to anyone outside our situation. I was aware of that inner sad and scared me today as I was visibly chatting and laughing with my friends sitting in the park cafe admist sunshine, toasted teacakes, gossip and hearing their excited plans for holidays, weddings, houses etc- all the usual stuff going on- and then this other parallel life which feels like only mine. I know you lot will understand however.
And managed with nurse's help to inject myself so will go it alone from tomorrow!
Rachel- I'm filling in the ESA stuff too- am about to get my BCN or GP to complete the med section- did you do this?