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May Moonbeams

Dodo14
Member

Re: May Moonbeams

Ann - glad you are back with us. I know you can do this. Great news it wasn't in your sentinel node. Good luck with heart scan today.
The indigestion is setting in again - I feel very uncomfotable today. Wish I could work out how to avoid this.
nanniereeree
Member

Re: May Moonbeams

Hi Ann
mine was 38mm grade 2 invasive and non invasive 2 lumps And in my sentinel node so lymph node removal. If not in sentinel node then very unlikely to have spread anywhere? the best thing is to keep busy and try to lead as normal a life as possible xxxxx
marie
Zuzy
Member

Re: May Moonbeams

Morning Ann, if it is not in the nodes then they would probably not do further tests as this is the first sign that it may have spread, so there's one positive! I agreed with others, if you can't delay then try and be positive, your oh will be there for the first day or so which is where you are waiting for the I unknown, hopefully you will be ok, as Marie says lots of us have been, I was back at work after a week. We'll all be there for you if you get down and there is the helpline as well, and your BCN sounds good so you can always talk to her. Good luck with your scan today xxx
Guest user
Not applicable

Re: May Moonbeams

Hello Marie and Faye, Thank you for such kind words. I am having 6 x FEC then radiation but no pills. I have been told what type of disease I have but it went straight over my head in my panic stricken pathetic state. Grade 3 invasive, 22mm, the sentinel node has been removed and no cancer was found in it. I don't know if it has spread anywhere else and have not been told if there are any further tests on bones etc to come. I am weakly positive also, but no idea what to.

I am under Worcestershire NHS. I have to go to the hospital today for a heart echo, they can't even leave me be at the weekend !

I have every intention of staying on the forum, you are all a massive help.
nanniereeree
Member

Re: May Moonbeams

Ann, you can do this don't waste energy thinking you can't you need your energy.. What chemo regime are you on?
Hubbie will be with you for the first few days which will probably be when you feel the worst if at all I only feel tired and have to say only taken half of the anti sickness tablets today.
The onc told me if you don't suffer sickness with your first dose you should be ok all the way through 🙂 I will keep my fingers crossed for you
where abouts in the country are you? Didn't know if there was anyonewho lives fairly close to you who could be a support for you if you needed them
Marie
Flip_flop
Member

Re: May Moonbeams

March13 - I have been feeling low the last few days, but I am trying to get myself back into positive mode by thinking that we are all frightened about what lies ahead, and we are grieving for the care free and happy lives that we had before this all happended, when not every minute of every day revolves around our diagnosis - BUT, the only we we can try and get back to this, is to go through the treatment that the doctors recommend. It will not be nice, but we need to and can do it.
My friend who had bc told me she called the time she went through it her 'glitch year', and has gone on to have a better and more rewarding life.
Stay on this site, you are not alone.
Take Care
Faye
Guest user
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Re: May Moonbeams

You are all so right. I have had my tantrum and all the toys are on the floor - and down the garden !!

I honestly thought they would understand and let me delay it until he was back home. The plain talking straight forwardness is probably better than fannying around me. They said I will be ok and they are the experts.

I really am not happy with the idea of taking the anti depressants, they are called Sertraline and having read the side effects of those I think I am better off remaining irrationally potty. I have opened a can of cider and a packet of the hula hoops that were meant for when I was sick, instead of opening the pills.
Dodo14
Member

Re: May Moonbeams

Ann you can do this - you need to focus on getting better and taking positive steps on the road to recovery. The answer is not in a packet of tablets. You are obviously struggling with the whole situation, not surprisingly, it is huge but you have a life that is worth fighting for - so start fighting. Your OH loves you and is understandably torn and under incredible pressure to do the right thing, whatever that might be. Hopefully there will be a compromise that can be achieved. You can do this and it will be ok, although lonely at times - but you do have us to talk to any time. We will help you through it. Lots of us have coped well with the treatments we have had, you may well do too. I know that I actually cope a bit better whilst on my own especially in the early days as I just want to potter at my own pace and not worry about anyone else - perhaps you will find that too. Please focus on the positives of starting the treatment sooner rather than later rather than the possible problems it may bring.
nanniereeree
Member

Re: May Moonbeams

March 13,
I can not believe they said that to you yes there are lots of people who are going through it on their own but maybe they are copiNg with it better than you. I really don't know what to say except speak to the helpline on here and see if they can help?
sending hugs
Marie xxxx
Guest user
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Re: May Moonbeams

Hello and thank you for all the responses to my query.

I have spoken to my lovely bcn who fully understood my fears and reasons and told me to contact my chemotherapy unit who in turn, would speak to the oncologist.

The reply was 'what part of no do I not understand'. I was told there are many people who have FEC and live alone, there are many people who are frail have FEC, and live alone. It was suggested I move a friend in for a fortnight - tricky as I have a one bedroom cottage. Go to my mothers, she is 80 and can barely look after herself. So the conversation finished with me being told to get on with it and if I am ill ring for an ambulance.

I spoke to my GP and all she said was to make sure I take the anti depressants she gave me last week. I have not started them yet and at the present moment the whole packet looks inviting.

Naniereeree, we looked at him returning after the wedding, which is on the 6th day of the 16 days he is due to be away. Thomas Cooke is contacting us tomorrow but have warned us that the cost will be huge and the likely hood of a seat being available doubtful.
nanniereeree
Member

Re: May Moonbeams

Thanks penny it feels very strange lol
Marie
Penny47
Member

Re: May Moonbeams

Dodo LOL- you will probably have everyone wanting to buy wigs!
Marie-yes but I have just been outside and it's windy! But I have been feeling flushed and my temp went up ever so slightly. Down again now. I blame the chemo.
nanniereeree
Member

Re: May Moonbeams

Hi ladies, does anyone else's face feel like its wind burnt after chemo?
Marie
Dodo14
Member

Re: May Moonbeams

Zuzy like you I have very similar SE to 1st cycle so far. Going to be very careful with what I eat over next couple of days now whilst still on tablets. Have reduced steroid intake today so hopefully sickness will still hold off...
Been to wig shop and had frings shortened and thinned out and further coaching over how to put in on properly - that was why it felt insecure - I had it on too far back on head! After I went to say hello to my chiropractor and got her opinion on it. She said she felt like she wanted to get a wig so that's a good sign.
nanniereeree
Member

Re: May Moonbeams

Morning ladies, well survived the night only felt sick a bout midnight took som Dom and went back to sleep.
I have got a headache again must be se for me?
Ann I would speak to breast nurse and onc explain that it means no one to be there with you. Mind you sometimes you will be glad to be on your own 🙂 like someone said if you were I'll or wound not healed they would have to put it off. Just a thought could hubby come back any earlier I know it's his daughter but is he staying on after the wedding? As I said just a thought.
i told the onc on we'd that she will have to delay my rads as we are going on hol she didn't like it but I'm going lol 🙂
hope everyone is in a good place and those that aren't soon get there xxxxx
Marie
Zuzy
Member

Re: May Moonbeams

Sorry, pressed post before saying Dod, Janey and Marie, hope you are all doing ok xxx
Zuzy
Member

Re: May Moonbeams

Morning ladies,
Ann, I would talk to them again, you need to be comfortable with your treatment, and if you are worrying it won't help. talk to you BCN about your fears and why they don't want to delay. if you have to go ahead do you have friends or family who could come for a few days?
Cycle 2 is going well so far, SEs similar to first one, long may it continue. I have a friend coming around for coffee this morning, she'll be first person to see wig except for mum and oh, decided that if I don't start wearing it a bit I'm going to become totally paranoid! Have just been wearing scarves out and about but don't really want to scarf when back in work next week!
Dodo14
Member

Re: May Moonbeams

Ann - Only you can make this decision. It has to be right for you. It could be that you go ahead with the treatment with no real problems and it would be good to get going however noone knows what will happen and if you feel you don't have other support around you I can see that would be a concern. You need to voice calmly and clearly your feelings and get some answers soon.
I can confirm the day 4 (although for me last cycle was day 5) crash. I felt very low and tearfulall day. This time I have discussed reducing the steroid dosage slightly over the 3 days to try and minimise those feelings. So today I will take only 3 and tomorrow only 2. This was recommended by a Macmillan nurse as a good strategy and having discussed it with my onc they were happy for me to try.
Feeling bloated and trouble passing again same stage as last time. Only hope I can avoid the terrible indigestion I had on day 4 last time through eating less over next couple of days. Off to the wig shop shortly to be adjusted and hopefully will then be able to wear with confidence like you Jane.
Rara
Member

Re: May Moonbeams

So glad you are ok Sooz. I have been worrying about you! I have tried to up my fitness before cycle two next Thursday. Been walking daily but muscles are weak after xtended inactivity in April after second op! You have inspired me to try harder!
ann, I hope you get your problem sorted About the first cycle and your oh being away. I would delay. However, i did spend every night alone after first cycle aalthough it it wasn't pleasant, it was bearable. But I am used to sleeping alone! I had various visitors during the day who helped with practical matters. Good luck.
Good luck to those having treatment today and to those who have already had it this week.
Rachel x
Penny47
Member

Re: May Moonbeams

Sooz so glad to hear from you again and that your symptoms are under control!
Ann good luck tackling the doctors. Would it help to chat to the Med Sec for your onc? If it was me I would probably tell a white lie on the day be saying I'd been up unwell all night....but that wouldn't really do as I would probably be found out!
Guest user
Not applicable

Re: May Moonbeams

Day 4 of Docatexal, wide awake due to steroids, not sure what softer means, but hope it is positive. Oncologist on Tuesday so hope for some news. Only two more cycles to go before surgery, so light at the end of the chemo tunnel. I hope you are all ok xx
Sooz
Member

Re: May Moonbeams

Hi ladies
Just catching up reading past posts. I must say a lot of 'positive' comments and how quickly time is moving on! You are all doing well! March13 stay strong and confide in your BCN they are so helpful & caring.
Very pleased to say my throat cleared up after a week.
I was asked to go back into hospital for a check over, I had mouth ulcers and possibly down the throat also, later developed acid reflux and thrush, was given some great medicine which cleared it all.
Was given a gentle mouthwash to ease the ulcers
Nystatin to ease the thrush.
Lansoprazole to ease the acid reflux.
All cleared up a treat and been feeling great since, got back to jogging in the mornings (a fantastic physical and mental boost, not allowing this s**t get you down).
My hair started falling out from day 13, been wearing scarfs, don't feel confident with the wig, been so windy outside!!
1 down 5 to go! ......my mantra is 'go go Pacman, munch those nasty cells away'
Cycle 2 next week. Good luck & good days to everyone else.
Sooz x
barbara2013
Member

Re: May Moonbeams

Ann- my chemo was delayed for other reasons- wound problems, skin graft etc so gap between mx and 1chemo was outside the guidelins- however the oncologist said he was very relaxed about it and cited evidence that delays were not problematic. However, none of us are experts and all cancers are different so I'd suggest you talk it through to get their reasons. Good luck
Well done `Aly and Penny and Jane for stylish wigging!
Have got head shaving tomorrow before chemo 2. My friend has knitted me a chemo cap!
Aly1971
Member

Re: May Moonbeams

thanks for the heads up on the steroids. Will be warning the family about the day 4 crash. At least it's a bank holiday and my OH will be home.

Ann I totally agree with Namaste, it's your first treatment and you have no idea how you will feel/cope the added stress of being on your own is not something you should have to deal with. I would insist that you at least talk this through with your onc it's just not fair. There are plenty of medical reasons why treatment gets delayed and your psychological and physical wellbeing should be one of them.
xx
Guest user
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Re: May Moonbeams

Thank you Namaste.
I am thinking about ringing them tomorrow and asking again. It is the simplest solution to delay. I get 2 weeks at home and work alone, in good physical and mental health, he enjoys the wedding and holiday then on his return we face the treatment together.

We would never split up, but the pressure of trying to please me and his previous family is immense.
namaste
Member

Re: May Moonbeams

Thanks for the info about the yoghurt ladies.... I guess I'll have to not have my beloved soya yoghurt for at least 3 months 😞
Yep Penny, there's a crash after the steroids. I have to take them when I get chest infections because I'm asthmatic, usually for a 4-5 day boost with antibiotics. They're great when you have them but a nightmare when you stop them. You especially need to be aware if you're prone to depression cos you can end up in that black hole PDQ!
Anne, I'm really sorry to hear of your predicament... must be an absolute nightmare. I don't think any of us would choose to be on our own at this time, no-one knows how you'll react till you start your treatment. Have you thought about ringing the helpline or do you have a macmillan nurse you can talk it through with? Would they really deny you treatment if you absolutely had to postpone? I would've thought that ultimately the decision about what action to take or not would be yours. After all, your emotional health is just as important especially now.
Big hugs x
JaneyW
Member

Re: May Moonbeams

Thanks for all your kind comments! Blushing clashes so badly with my new hair colour!
XX
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Re: May Moonbeams

Ladies I need some sound and honest advice. What would you do in my position. Please be frank and open I will not be offended, maybe I am being an hysterical idiot.
First FEC set for 1.30 on 30th May. My husband has to leave the country (to other side of world, no hopping on a plane home possible) on 2nd June not back until 17th June. I asked my BCN and the chemo nurse to delay my first treatment until he was home because I am frightened of the treatment and of being on my own. They would not and told me I would be fine and if I wasn't I would have phone numbers to call. I have no family and my mum is 80 and not mobile.

This evening my husband and I are at each others throats, I want to tell the hospital I cannot cope alone, he is feeling guilty about leaving me but wants me to start the treatment and get on the road to recovery. The trip is to his daughters wedding in Bali and has been planned and saved for over a long time, he is giving her away (child from a previous marriage). There is no claim on the insurance because I was never travelling.

I know he will really struggle to leave if I am ill after the treatment, but he has to go. I can feel myself getting bitter. I really want to delay until he is back.

Am I being irrational ? all I can imagine is being ill in the middle of the night alone. If I end up with an infection and in hospital there is no one to come into me or for me to go home to. Maybe I will sail through the 2 weeks without a problem and reread this question with total embarrasment.

I am really wound up to breaking point now. I have actually said to him to go and forget about me for a fortnight, he won't know what is happening to me anyway. We both ended up in tears and the whole thing is not going the right way.

What do I do ? - tell the hospital I am not attending and they must re-schedule for me - bet that would go down like a lead balloon, could they refuse to treat me 2 weeks later than originally planned ? Or do I accept being on my own, tell my husband to have a wonderful time and not worry about walking out of the door 48 hours after I have had the treatment and just get on with whatever happens whilst I am on my own ?
nanniereeree
Member

Re: May Moonbeams

Wow Janey you look great( not that you didn't before)
No wig for me they asked me today again I said I wouldn't wear it so it would be a waste I have scarves hats and bandanas but when it warms up will be wearing my baldness with pride ( and a big badge "yes I have cancer" lol )
Chins up ladies we are kicking its arse 🙂
Marie xxxx
Penny47
Member

Re: May Moonbeams

Beware of Day 4! My nurse hinted this and ED who has 2 kids on steroids from time to time for croup confirms this. Regardless of your physical symptoms it can affect your emotions and her kids (who don't know what day it is) can become very tetchy and miserable after their three dose course. I'm saying some cheerful things for when I reach that.
Dodo14
Member

Re: May Moonbeams

Jane - you look stunning. Hope I can sort mine out so that I can wear it with confidence soon as I am also a bit of a baldy underneath.
marleypop
Member

Re: May Moonbeams

Jane you look fab, loving it x x
Wishing everyone here a more restful weekend, lets hope the sun shines soon and gives everyone a lift..and good luck to those who've got up and coming appointments........
Positive thoughts and love x x x Looking to pick up me wig next week will keep you posted...
Aly1971
Member

Re: May Moonbeams

Hi all. back from my first dose and so far so good....mums up so relaxing in bed listening to the girls playiNg downstairs. Jane, love the new wig it looks fabulous.
Penny glad the sickness subsided, I too will be mostly fighting cancer from the sofa.

Ann. I can honestly say I was dreading today far more than the surgery, I was so surprised how calm the reality was. They got the cannula in with very little bother, apparently I have 1 good vein lets hope it stays the course! The environment was really calming and the nurses all so lovey. Had a volunteer make me a cup of green tea (own bags) and a free chicken sandwich. We even got the bus home. I like Penny have been using positive imaging to help me through chemo, this is not poison this is an army of highly trained militia heading into my body to take out the enemy. I really think it helped.

i asked my nurse about the live yoghurt and she said anything 'bacterial' is a no go at the moment even if its 'good bacteria' however she laughed when I mentioned not drinking tap water. Think Londons water has been blasted to oblivion and is so hard nothing could survive long in there.

rest well Moonies, look after yourselves.

aly xx
Penny47
Member

Re: May Moonbeams

Janey-totally stunning.
Marie well won't we all be happy to see the back of all this!
Thanks again all of you for your best wishes.
JaneyW
Member

Re: May Moonbeams

Ah yes, all this talk of wigs - here's my updated picture. Now a complete slap-head underneath, but a mixture of scarves, bandanas and this when going out stop folk staring. In the house, bald and proud!

Hope everyone gets to enjoy at least some of the long weekend.

Jane x
Dodo14
Member

Re: May Moonbeams

And that you are feeling better Penny.
Dodo14
Member

Re: May Moonbeams

Glad all went well Marie.
nanniereeree
Member

Re: May Moonbeams

Afternoon ladies, just back from hospital had a trainee today all went well my veins played up ended up with it in my finger but it was o.k.
Thats two down two to go
live yoghurt it's about the bacteria..
Now to remember when to take what tablet when 🙂
have a good day
Marie
Lola65
Member

Re: May Moonbeams

Penny, that is the very best place to be in weather like this.
Penny47
Member

Re: May Moonbeams

Yes much better thank you all. This afternoon I will be mainly fighting cancer on the sofa!
elliedog
Member

Re: May Moonbeams

Hi everyone. Just read through the last couple of days of post and it seem like we are all going through our ups and downs.
Penny sorry you didnt have a good night but keep a good check on your temperature thats the one thing my nurse kept saying to me it is so important.
Dodo sorry you had a bad experience with your first trip out with your wig. I have to admit that I am dreading my first time but other ladies that I have spoken to that have already been through this and come out the other end say they grew to love their wigs and from time to time still wear them. So we'll all be brave together and get our wigs out there.
Marie good luck with your next treatment hope it continues to go well.
I am now on my 2nd day after my 1st treatment and so far so good. No sickness, not to tired, steroids seem to be giving me a few problems with sleeping but I can cope, and then just a little problem going to the toilet butnow the steriods are finished till next time that should put its self right. Been able to still go out walking with OH and take kids to school even in this horrible weather today (where is our summer). Next hurdle is the hair falling out nurse said it will be 2 to 3 weeks so being very careful when handling hair. OH said if I carry on like this he is going to book a couple of nights away just the two of us before my next treatment. We had to cancel our holiday to Scotland over half term so it would be lovely just get away and relax. Not going to tell ONC because she seems to be over causes with everything. Anyway better go I seem to go on and on. Hope the weekend is a good one for everyone hopefully the sun might come out for a while.
Angela xx
Dodo14
Member

Re: May Moonbeams

Yes Barbara I have got a wig cap but it needs to be tightened or something as it isn't holding well. I am going back to the shop tomorrow for further advice. Good luck for tomorrow.
Jo
x
barbara2013
Member

Re: May Moonbeams

Dodo- I was given (well had to buy) a liner like a popsock for head to go under my wig- I assume this helps hold it- do you got one of these? Someone also mentioned wig tape ?I am also very unconfident and have not even tried wig at home yet. I didn't think the hair would matter to me but found myself weeping this morning as I tried to clear up the stuff- on clothes, pilllows, neck everywhere. I want to get it shaved off starightaway but hairdresser not answering his phone. Feeling quite low- probably because of chemo tomorrow but mostly because I don't want my life to be like this- still get those feelings of rage!!! Jane- you are right must target it at the cancer cells. Penny hope you pick up today- all of you be gentle on yourselves.
Dodo14
Member

Re: May Moonbeams

Zuzy - Glad you are ok. I too am feeling very similar to last cycle so far so fingers crossed all will be well.
Marie - All the bext for today.
Ann - I have not been offered anything to relax me but it sounds like this is available if you ask. Be brave and stick with it. The thought of it is worse than the reality.
Namaste - Live youghurt contains bacteria - that is why we shouldn't eat it. We shouldn't be putting any type of bacteria into our bodies just in case.
Penny - sorry you have had a bad night. Hope you are feeling better soon.
I have just had my first trip out with Wigfield. It wasn't a good experience. Whilst it felt tight and secure when I had a head of hair, today it felt slippy and I fiddled with it checking in car windows etc. If it didn't look obvious before the fiddling certainly made it clear I was wearing a wig. Have contacted wig shop for advice as found it quite traumatic.
Rara
Member

Re: May Moonbeams

Penny I am so sorry hear that you had a bad Night . Please don't take any chances re temperature! Hope you improve soon xxxx
Penny47
Member

Re: May Moonbeams

Oh dear I had a sickly night and then my temp spiked. Waiting for me meds to work curled up with water bottle and child's sippy cup. Helpline will ring back and we will see if I need injection but I don't think I will. Really thankful to have MD here to support us (she is working at home this week so she thought she might as well stay here!) her fundraising is £635 of her £1000 target and she bought a new pair of trainers for her walk. Great!
sending Exocet-shaped vibes to Aly and fellow FEC people!
i'm told Lorazepam is lovely-never tried it myself.
Ann the live yogurt this would be good to understand a bit better. I think having staphococcus with a depressed immune system upsets medics. Hoping Marie can get some sense out of them!
nanniereeree
Member

Re: May Moonbeams

Morning moonies,
Round two today, the onc told me if you are not sick with first chemo you should be o.k for the others ( will wait and see)
March13 I think it worked for me you must look at positively and weigh the options chemo and live, no chemo and well you know the answer to that!
I have been in and out of hospital for the last few years so am used to cannulas but still don't like them.
will try and remember to ask about live yoghurt for you namaste today
will be on later meanwhile busy day xxxxxx
Marie
Guest user
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Re: May Moonbeams

Morning Penny,
Yes it is called Wills Wigs. I am lucky as I am in Bromsgrove. The fitter was lovely. It was interesting in that what you might think is suitable or looks nice in the photo's is totally different when tried on. Buying on line or without expert help could be a real disappointment.

My mare is due on the 30th, the very same day I am due to have the first FEC. She has gone to a professional stud to keep her safe.
Nanniereeree, does the sedative actually work ? I am having real doubts about whether I will be able to sit still and allow it to happen. When I had surgery I walked to the theatre (never been in theatre before) and had to be held onto to stop me legging it.

Even though I have my wig, ginger nuts, a vast supply of constipation potions and a silk pillow my brain is still telling me 'No' it is not happening and I am not going ahead with it.
namaste
Member

Re: May Moonbeams

Morning moonies.... second day in a row I've been up at 4am then been unable to get back to sleep 😞
Glad to see things are moving on for everyone. When I'm having a bit of a rough time I just keep telling myself 'everything passes' like some sort of meditation mantra! Seems to help a bit anyway.
Can I ask, does anyone know why we can't have 'live' yoghurt? I make my own from soya milk and cos DS is vegan we eat it a lot. I can understand why we shouldn't have soft cheese etc but I thought live yoghurt was good for your gut.
Zuzy
Member

Re: May Moonbeams

Morning ladies, had such a lovely sleep, think the stress of the last few days trumped even the steroids!! No nausea yet so looks like I'm hopefully going to repeat the pattern of cycle 1.
marie, I had the same tablet as Marie this time following the cannula issues first time around, I think it!'s lorazepam, speak to your onc about it as they can't give you anything in the chemo ward that's not been prescribed ahead of time.
dodo and Janey hope you are booth feeling ok today
Marie, good luck with no 2.
Hope everyone else is well and good luck to e anyone I've missed
xxx