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May Moonbeams

Penny47
Member

Re: May Moonbeams

Good suggestion. I have a tin full of herbal and fruit teas too. Like to ring the changes. Not sure how the old tastebuds will react though. Yes I too organise for a living...in a way ... but at the moment my list making is pants. I've got my mother of all lists to take to the nurse tomorrow! This week I am really preoccupied and just plain bone tired, probably depressed as well. My head knows I will survive this thing but my body is a bit wobbly about it. Taking the rest of the week off for some reason. Take care and stay well.
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Re: May Moonbeams

good evening ladies
Marleypop - I am like you on first FEC-t tomorrow and want to get on with it, but at the same time it feels very surreal too, I am not looking forward to it but having seen so many positives from you lovely ladies I hope I will be the same. I blow dried and straightened my curly hair tonight then realised that for a long time that will be the last time I will be doing that I know that sounds really silly and petty but its the little things that make you realise, onc said no hairdryers etc - can I get away with mouse to wet hair - is that allowed? that way my hair will just go into curls
Zuzy - hope your bloods are ok soon, xx
Aly - wonderful list I need to print that and the dates for us all
catch you all later, try an early night but not sure brain will allow it !
Karen
x
Dodo14
Member

Re: May Moonbeams

Zuzy - sorry to hear your bloods were low. It just goes to show that the injections are worth having. I had them and mine were ok.
Not sure if it is the same stuff - filigrastin - but I was ok with mine except for the day after the last one when I had leg pain. Apparently it is because it buidls and releases the wbc in a big batch. It did pass after 1 day though and pain relief made it manageable. I have to have days 4-10 though so might be slightly different?
Hope all is well and you can proceed on Wednesday - you are my chemo day buddy!!!
Aly1971
Member

Re: May Moonbeams

Ha! Thanlks Penny - I'm about to stick it to the fridge to encourage my OH to cook me healthy stuff when I can't manage it, have you tried the flavoured green teas? Not sure they come in decaf form, I can't stomach the normal stuff so go for mint or lemon - maybe you could just add a bit of that in to the decaff to give it some taste?

Can you tell I organise for a living - I love a list!!!

x
Penny47
Member

Re: May Moonbeams

Hi Aly that is a brilliant list, as ever you have boiled a lot of complicated info into a manageable chunk! I'm going to sellotape it to the inside of my kitchen cupboard. My only quibble with green tea is that it does usually contain caffeine and the decaf green tea to me is tasteless. Which is a shame cause I love it. (I don't mind caffeine but it is supposed to contribute to lowered calcium levels and the Letrozole increases your loss of bone density). And as for broccoli that appears twice on my shopping list too usually.
Zuzy
Member

Re: May Moonbeams

Help! I went for my pre chemo 2 appt today and bloods are low, am gutted as I've been so well. They gave me a booster jab and will have another tomorrow then bloods done again weds morning to see if ok to go ahead. I've also now been prescribed these injections for 5 days after each one, I know some of these had these from the beginning, apparently my hospital only give them on FEC if you need them after cycle 1, anyway, my question is did they give you aches and pains, I feel really odd since I had it this morning xxx
Dodo14
Member

Re: May Moonbeams

Thanks for that Aly. I do feel a bit happier about it now.
In terms of my diet, I am trying to have a healthy mix which I am pleased to say would include several of the items on your list. I am also trying to eat lots of iron rich foods to boost my red blood cells.
On another note, I have been sent an immunity advice sheet from Macmillan and they state that we shouldn't be eating pre-wrapped sandwiches or cooked sliced meats! Has anyone else been told that and why????
Also they mention not handling pet litter - another thing I hadn't been told or considered but makes perfect sense. I know there are a few animal lovers amongst us...
Aly1971
Member

Re: May Moonbeams

Hi Dodo - although I'm not having one a very good friend of mine who is also going through chemo at the moment has a portocath and I would echo exactly what Linda says - he thinks it is fantastic (as someone who has had chemo through veins before). I'm sure once it's fitted you'll be very glad to have it.

On a completely different note is anyone doing anything in term of diet to help boost their immune system / generally keep well / fight the cancer? A friend who has had a very long term battle with cancer (first prostate, now lymphoma) swears by his diet alongside meditation and yoga. I'm also reading a book called 'Anticancer: a new way of life' which basically talks a lot about lifestyle and nutrition alongside chemo / radiotherapy to help fight the disease.

So just in case your interested I've compilled a (very long) list of the foods which purport have 'cancer fighting' properties - apologies in advance for anyone who thinks this is total gobbledygoop!!

Green Tea
Olive oil
Turmeric with ginger & pepper
mushrooms - especially shitake & oyster
Blackberries, strawberries, raspberries, blueberries, cherries
Walnuts, hazelnuts, pecans
Plums, peaches, nectarines.
Mint, thyme, organo, basil, rosemary.
Brussel sprouts, bokchoi, Chinese cabbage, broccoli, cauliflower, broccoli
Garlic onions leeks shallots chives
Carrots, yams, sweet potatoes, squash, pumpkin
cooked tomatoes in olive oil.
Seaweed
Pomegranate juice.
Dark chocolate

Its quite a list and there's a few more - apparently the most potent ones are green tea, tumeric and the berries. I actually rather love everything in the list so quite frankly its worth a try, alhtough I imagine they will all taste disgusting come Friday ;(

Aly xx
Dodo14
Member

Re: May Moonbeams

Thanks Linda your words are very reassuring although I am not looking forward to having it put in and feel weird about it being there all the time. I have been worrying about this all afternoon so it is good to hear that someone who has one thinks it is a good thing.
Lola65
Member

Re: May Moonbeams

Dodo, I have a portacath fitted and it is my very best friend. They are automatic at my hospital for everyone on Herceptin because of the number of infusions. I had mine done under local anaesthetic, and was given the option of sedation but declined because they said I would have to stay behind an extra hour or two afterwards and I just wanted to get home!

It was done by a senior nurse specialist in the main X Ray department because they do it with the guidance of ultrasound. They make 2 small incisions, one in the neck (3 stitches) and one underneath just below the collar bone (5 stitches). They then insert this small plastic drum in the lower incision site, which is the port, which is attached to a narrow plastic tube that is threaded under the skin to the neck incision and then in to the large central vein that leads down to your heart. The advantage of this is that vein is wide and fast flowing, so the poison goes in and disperses much faster, so no vein damage.

It sounds horrific, but is completely painless although you can feel a lot of pulling and tugging. Your blood pressure and heart rate are measured throughout, and if you start to feel woosy they will stop for a bit. They are talking all the time, and a lovely nurse is holding your hand and chatting. I can't pretend it is pleasant, it isn't, but my God it is worth it. It took about 20 minutes or a bit longer, followed by an hour's rest in the day ward, then home.

The whole contraption sits under the skin, so no part of it is outside your body. This substantially resuces the risk of infection, and once the dressings are off you can bathe, shower or swim as normal. You can see and feel the port lump under the skin, but it is hidden by most of your necklines.

It is used for all chemo and Herceptin infusions, and also bloods etc. providing the person using it is fully trained. All chemo nurses are trained, but not general hospital staff, so if you end up in hospital you will still need a cannula. I absoluitely LOVE it. During chemo sessions I have no pain, I can't feel a thing. No hunt the vein, no sore arms. Bliss. I also have 2 free arms for toilet visits!

Hope this helps. It really will become your best friend.
Linda xxx
marleypop
Member

Re: May Moonbeams

Thank you Aly for your well wishes and everyone else, in some weird way I'm looking forward to it.......
I think it's just knowing that at long last treatment has started and I can begin my fight. Seems like a life time ago that I was smacked in the face with the news....
Will let you know how things go, will be thinking of fellow starters.
Speak soon, early night tonight me thinks.........all being that my little girls goes to bed.
Txxxx
Dodo14
Member

Re: May Moonbeams

Just had a call from the hosiptal. Apparently I need to have a portocath fitted in my chest for the herceptin treatment - has anyone had this done already? I am a bit nervous.
Dodo14
Member

Re: May Moonbeams

Yes Aly round 2 this Wednesday. Have seen onc this morning and all systems go. Blood levels have returned to normal limits and "happy" with side effects so far.
Have also found out that I am HER2 positive so will need herceptin treatment which will start with cycle 4 when I change to the second drug. Apparently will have 18 3 weekly cycles of that! This is going to go on and on...
Definitely seem to be surrounded by cancer stories - think Marie is right and we are just more sensitive to it all now.
nanniereeree
Member

Re: May Moonbeams

Hi Ladies,
yes Aly1971 2nd chemo on thurs at 11.30. I think re cancer we just seem to be more sensitivtoto it where as before because it didn't affect us we let it wash over us a bit, I'm not saying we didn't care but it seems since i've been diagnosed there are more adverts about it and more people on the telly are portraying they have it. Hopefully your children wont take it on board xxxxxx
Today I have been and got my prothesis fitted and it is so much better than the softie was, it feels almost real...
Hope everyofeel into feeling too bad
Marie
Penny47
Member

Re: May Moonbeams

Thanks Aly and best of luck to all my fellow waxing moonbeams, and those of you coming back to give it another try. Px
Aly1971
Member

Re: May Moonbeams

Morning Moonbeams,
Littlescoot - I REALLY hope things are improving for you and sending you a massive virtual hug, I'm sure that your onc will be looking at what they can do to ease the SE's next time round - maybe this drug combination is just not for you and they can switch you to something else - from what I've read there are many options out there. I'll be thinking of you and hope you are out of the hospital very soon.

Ann - I would definitely speak to your Onc about your concerns - maybe they can give you a bone scan to put your mind at ease. Back pain is so horrible and I know that I'm now paranoid about every little niggle that I get. My mother has suffered from back pain for many years and finally went for x-ray last year when her chiropracter could no longer help. They originallly thought it was arthritis but the x-ray showed that one of her verterbrae had worn away and bone was touching a nerve - she had an op to take away the bit of bone that was pressing and hey presto she was no longer in pain - it was miraculous, she was up and walking about the next day having been virtually crippled for months. I believe its very common.

Karen - well done on doing the race for life - I really want to do that or the moonwalk next year when all this is over - seems like a fitting thing to do a year on, and a good way to get fit too.

We survived the sleepover - although i think there was anything but sleep involved - I've had to apologise to the class teacher for the 4 little zombies who turned up at school this morning! So relieved that my chemo appt got put back to Thursday - I'd have been a wreck having to go there today.

Finally does anyone else feel that cancer is all around them at the moment - following on from my daughters friends dad passing away on Friday (she still came to the sleepover and was so amazing - inspirational how kids cope with these things) one of her other classmates rocked up to school this morning with the words 'my aunties got cancer and is going to die and mummy can't stop crying" - so awful and of course I worry so much of the knock on effect this will have on my daughter - no matter how many times I tell her that I'm not going to die (well at least not for the forseable future) it must seep in and play on her mind.

Good luck all those ladies starting this week - Namaste, Angela, Marleypop, Karen, Penny, Penash - its a big week for all of us, I've got 'The Final Countdown" playing on a loop in my head this morning.

Caz, Bad Bambi, Mchales - I hope the SE's are being kind to you

Alex, Deborah, Jane, Zuzy Dodo14, Marie, Jill & Barbara - do you start round 2 this week???? - my goodness I can't believe how quickly the time has gone good luck.

Aly xxx
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Re: May Moonbeams

morning moonbeams
I ache lol - but well worth it
I have 2 cats Penny (Lilly and Peppa) and they are little monkeys too, when I walk Jessie we have Peppa follow us, so quite amusing to take both cat and dog for a walk, I wonder if George has now decided to eat the bone too? mine bring gifts in and let them go urgghh
well I am just enjoying a quick sit down before panic sets in what I need for tomorrow, will probably clean the house then at least its done for a day (well less with kids around isnt it)
good luck for anyone starting treatment today and those with appointments today and this week
Karen x
Penny47
Member

Re: May Moonbeams

Jo you are right- half term is next week for most of us but I think they are coming the week after half term which gives us a little (ahem) breather!
Dodo14
Member

Re: May Moonbeams

Penny - half term is not very far away -next week isn't it?
Off to see the onc this morning for my first chemo review. Have lots of questions for him -will share what he says when I get back.
Jo
Penny47
Member

Re: May Moonbeams

Karen- yes you look beautiful and so does Jessie!
If anyone's interested in the cat saga there is still no pong in the bedroom (and the little ones have now gone home!) but I did notice a suspicious crunching noise on Saturday when George strolled up to the attic and disappeared. So maybe he has eaten all the meat off the bones? Another thing- it has not been hot weather, so maybe I am speaking too soon. I really don't have time to worry about this. We won't be having guests again til half term!
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Re: May Moonbeams

Alex - I totally get what you say about the hair, and I am not even there yet but sure I will sob in the shower when it comes out
Penny - it was brilliant, the atmosphere was lovely, even more so with it meaning so much to me this year, the dog is mine Jessie, she constantly got dognapped and my friend is holding her and she wore her best pink coat, I am in the middle of the photo and my daughter is just off the photo on the left of the photo, she is on the original so dont know why it has cropped it down. I think my legs are going to ache in the morning, well worth it, I thought about all you lovely ladies and that helped me get there

Karen x
Penny47
Member

Re: May Moonbeams

Karen- what an achievement! You done good girl. Nice picture. Love the dog. You look beautiful.
Lexi - another page turned eh. Since I had mine shorn people really been flattering but I know this is a stop-off on the path to no hair, and try to enjoy the moment. Sad.
Jo Thanks for your thoughts- this will be a hard week for some of us. Right now I'm wondering how to live without natural yoghurt!?!?
Lexi42
Member

Re: May Moonbeams

Hi everyone, just to let you know I'm still around.
Karen - I did the race for life two years ago, when my father-in-law died of prostrate cancer, and my new work colleagues, who have been absolutely brilliant asked if I wanted them to enter this year, (about ten of them are regular runners), but as it was a bit late and I wanted to run too, I said let's do it next year and I know I'll be sobbing over the finish line too! It is quite an emotional day.
I've had a bit of an emotional weekend as hair started to fall out on Friday. I had it cut really short, but Saturday morning I just howled in the shower as it all came out in my hands. I've accepted my new look now, I have a wig (no name for it as yet) and many bandanas and scarves. Also bought some new hooped earrings to complete the gypsy look. Lol!
2nd round of FEC due on Thursday, hopefully bloods will be okay, seeing the onc too, guess he just wants to check I'm doing okay.
Cyber hugs to anyone who needs them.
Alex
Dodo14
Member

Re: May Moonbeams

Angela - All the best for tomorrow and to all everyone else having treatment this week.
Ann - Just looked up bone cancer - there are about 400 cases a year - the odds seem very low.
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Re: May Moonbeams

You are all so sensible, I used to be, what is happening to me ! Thank you for taking the time to respond to me and my senseless panicky ramblings. Ann
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Re: May Moonbeams

little did I know that when I did race for life last year it would be so personal this year, but I am glad I did it, felt really good to help and everyone was lovely, reading everyones back notices was so moving, I am sure they were reading mine too
keep on in there girls - we are worth it
Karen xx
ps photo is from today
Penny47
Member

Re: May Moonbeams

Mandie you have been in the wars. Now is the time for a bit of peace isn't it and you sound as if you will beat it.
Ann after a certain age for us joint pain is our badge of honour, especially if you ride horses. I started my bad back career when I was 32 (I rode as a child when I livs in SW USA) and it took years for me to work out a way of coping but now instead of going off work for weeks at a time I have learned to sort myself out in 3 days. Of course, when you are ill or apprehensive you feel pain more- this is a FACT! I do Pilates which helps a lot (I couldn't get on with Yoga, long story, it's not for me!) and I notice to my joy that our Maggies does Pilates sessions. Meanwhile I am trying to exercise at home and get walks in the daylight (or sunlight like today) when I can. I also use Ibuprofen and also Paracetamol. I was sent on a pain management course and half of us were still working...the people still working had worked out ways of coping which were an inspiration to me then and I'm harking back to it now I've got cancer. See what works for you - a discussion with a physio is often helpful as most PT's in my experience have back trouble. (what do you think Aly?) We have Physio direct in our area- you can juist ring up and they will give you advice over the phone and then send you exercises!
nanniereeree
Member

Re: May Moonbeams

Mandie you poor thing keep your chin up lets hope they sort it before next cycle which I'm sure they will..
Marie
Dodo14
Member

Re: May Moonbeams

Poor Mandie it sounds like you have really been through it these past nine days. Hope they sort you out very soon and adapt your treatment to stop this happening again.

I have been told to be very careful with takeaway and restaurant food, and to not order salad or raw fruit (in case it's not washed) or eat rice (in case it's batch cooked and reheated), but not too avoid it completely. Nothing said about spices just soft cheeses, pate, soft eggs, shellfish and live yoghurts (must not eat).

Well done Karen for doing something so positive just before you start your first chemo. It must feel good.

Anne - I think they can tell if a tumour is primary or secondary so they must be confident that the BC was primary to treat as they have. It is only natural to link all aches and pains to this one thing but you already explained why you had them. Lots of older women have lower back pain - I do. Of course, if it is concerning you, raise it but don't let these thoughts consume you. You need to believe that you can and will get through this.
nanniereeree
Member

Re: May Moonbeams

Ann, you need to stop googling you probably have arthritis as I do have some morning I can hardly walk down the stairs,
can you take ibuprofen if so try that and see if the pains get better if so it is probably arthritis but ask your oncologist if you are so worried but I'm sure it's not what you think....
Good luck to everyone starting this week and to those of us who are having their 2nd dose xxxx
Marie
Melrose15
Member

Re: May Moonbeams

Mandie I really feel for you. What a dreadful time you've had. I'm sending you big hugs and hoping that things get sorted for you next cocktail. Xx
Well done Karen on the race for life. I've done the Moonwalk twice, 26 miles at night through London. Little did I know what lay ahead for me at that time. Definitely wouldn't be able to do it now!
Good luck everyone this week xxx
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Re: May Moonbeams

Oh my word, Mandie you poor poor thing. Surely to react so badly is rare ? I am now doubting my decision to go ahead, or am I just being irrational.

May I ask more questions please. For probably the last 8 years I have had lower back pain, the simple reason being I am too fat and I ride horses and do a lot of heavy farm work. Over the past 12 months it has got worse and I have general pain that moves around my shoulders, elbows, wrists, fingers and ankles. I wake up in the mornings and wait to see what hurts each day. I spoke to my GP long before my BC arose in February, she did a blood test and announced I had raised ureatic (spelling sorry) and therefore would treat me for gout with a drug called allpurinol. Gout my backside and the drug has not touched the stiffness/pain at all which is getting worse by the day. The pain is controllable with a lot of paracetomol.

I rasied the subject with the chemo nurse and she said she would speak to the oncologist. Of course I have had time to brew on the problem and have stewed myself into deciding I have bone cancer that has not been found and the breast cancer must be secondary. I have not helped myself by googling and now I am bouncing off the walls.

Is it possible to have undetected bone cancer for years and years and then the BC as secondary ? I had a lumpectomy with no spread to lymph nodes and start FEC on the 30th May. sorry in advance if i am being ridiculous. Ann
marleypop
Member

Re: May Moonbeams

Well done Karen, I too start Tuesday so I will be thinking of you x x
I have decided against the cold cap, for various reasons.
I wish you well, and keep my fingers crossed that we don't suffer too much, long road ahead but we will get there
Txxx
barbara2013
Member

Re: May Moonbeams

Well done Karen! I did Race for Life for several years and always found it a moving and uplifting event. Hope to do it again- will aim for next summer! Littlescoot/Mandie- so sorry you've had such a bad reaction- sounds a nightmare do hope you start to feel better soon. Rachel I had 2 sessions with the counsellor at the Cancer clinic which were very helpful in making me relaise that the anger/ disbelief and grief I felt (feel) were in a way a healthy thing. Good luck with it. I lost the post I wrote yesterday- beginning to think I need a new netbook but the rest of you gave some great answers to the questions asked. Hope all goes well with Angela and others starting this week- I have 2nd FEC Friday.
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Re: May Moonbeams

afternoon Moonies
well I did it, took me at a dawdle 52 mins which I was so proud of (race for Life), I cried coming across the finishing line holding hands with some lovely ladies from work, I was so shattered though - but WE HELPED KICK CANCERS ARSE
so sorry to hear of mandie (littlescoot) how poorly you have been , cyber hugs coming your way, I hope they get things sorted out for you very soon
I am thinking I have pushed myself so near to chemo a little too far, but hey we are all worth and for all the people in the world touched by cancer, it truly was a very emotional place to be, I am not fit in the slightest and everything aches etc
I am now back down to reality that Tuesday is my start day and keeping everything crossed that its ok, I have a massive bruise on my hand from failed cannula attempts that I am wondering if they will even bother and go straigh for the Picc thingy
decided definately against the cold cap - I can not stand -25 so not worth even trying, it will probably bring on a migraine so just going to go with the flow
well it was a lovely sunny day in lincolnshire, but clouded over now but just chilling waiting for tea to cook
I was told no spicy food too, especially around chemo time, and also avoid take aways as you never know what their hygene is like, I was also told not to be more than 2 hours away from the hospital - anyone told this?
well few little jobs to do if my aching body and blisters will allow - lovely day and I feel so proud I have done a little to help us ladies along the way
take care moonbeams
Karen
x
Zuzy
Member

Re: May Moonbeams

Sounds awful LS, hope you're home soon and they get it sorted for next time.
re food, I asked if there was anything I shouldn't have and was told no.....have not had takeaway bu have been out for Chinese, to the pub and to a couple of cafs! I've found spicy food good as can actually taste it, I think maybe it depends on us all individually?
good luck tomorrow Angela
xxxx
Rara
Member

Re: May Moonbeams

Good to hear the sun shines on kings Lynn for you Marie.
Angela, no takeaway food after chemo according to my notes in official chemo printed book from hospital. Drink lots today and tomorrow, it really will help. Not sure re spices though! I will be thinking of you especially tomorrow.
Poor mandie aka Littlescoot. Now that sounds terRible, truly awful for you . I was moaning about one day in hospital since chemo! And diarrhoea for days but yours sounds horrendous. I am so so sorry for you and would like to offer virtual hugs across cyber space. I will pray for a recovery sooner rather then later for you. I hope the drugs can get sorted for you for next cycle. Sounds as if you are allergic to something in the cocktail. Xxx
Littlescoot
Member

Re: May Moonbeams

Hi everyone I am now day 9 post FEC 100 and still in hospital. Came in on day 1. Severe uncontrollable vomiting > 40 times in 21 hours. Have had spiking temps rigors ( horrid) infections nausea picc infection chest pain constipation delirium. For first 4 days not even lucid. Am now pulling round ( after being called "crispy" due to dehydration and " looking greyer than the bedpan".). I can honestly say I have never been or felt so poorly in my life. And today which has been non D&V etc now sees me neutropenic with neut count of 0.4 and platelets of 64!! Xxx not looking forward to round 2 as non of the anti sickness worked ( all has been iv) and I still have a 24hr syringe pump with anti sickness attached and am still on fluids. I really hope everyone else has had a far better 9/10 days. Love Mandie/LS
elliedog
Member

Re: May Moonbeams

Hi everyone
Thought I would do a post today just incase im not up to it in the next few days. Well its 1st treatment day tommorrow, feeling anxious but glad to be getting on with it. Think I have everything ready, drinking water (should I buy bottled water or is from the tap ok), ginger biscuits, hola hoops,anti-sickness bands, I think my list goes on and on. Also just read some info on the drug Peruzemab which they will be giving me and I cant believe how excited the medical world is about it, so lucky to be getting it, has made me feel so much better. Nurse told me how excited they were about this drug but you dont always believe them, but I really do think it might be a wonder drug. So I am going to stop the self pity, get the next few months of chemo out the way and start living again. So Im of for a walk with kids,OH at work,to get some fresh air.
Rara glad your feeling better and I think it is good that you are speaking to someone to help get you through, because us ladies will get through this I have a positive feeling.
Marie Its good the tiredness has eased not sure how I am going to cope with that with two mad sons running about the house.
Finally one last question and I will leave you all alone. I had a lovely curry last night thinking it might be my last for a while because I have heard you cant tolerate spicey food. Is that right?
Good luck to everyone who maybe on their 1st or 2nd chemo next week and those that are not have lovely full days and do lots of smiling.
Big Hugs
Angela xx
nanniereeree
Member

Re: May Moonbeams

Morning moonies.
Rara glad you are feeling better today positivity is the only way! I never think this is going to beat me ! I'm going to kick its arse and I've said that all the way through xxxx
lovely sunny day in Kings Lynn
Id better go get dressed oops
Marie xxxxx
Rara
Member

Re: May Moonbeams

Morning everyone and hope you all have sunshine today!
i have been catching up with the thread and am amazed by all that has happened but even more amazed by the fantastic advice given.
insipirational.
I am now on day 11 post first cycle. I have recovered from the tonsillitis and the diarrhoea caused by penicillin I think. I ate a normal meal last night and feel normal today. Am hoping it lasts ! Will pace myself today just in case! Any excuse not to do housework. . .
my appointment with the wig lady at the hospital is tomorrow and I am now looking forward to it although have been practising with scarves and hats so might not even use the wig.
On Tuesday I have an appointment with the clinical psycologist (can't spell that word)! She gives coping strategies for the down days which I have had many of since diagnosis. But this morning I am one positive and forward thinking woman. I have the power to get through this chemo malarkey because I want and need too.
Caz I am sorry to hear you had a bad few days but happy to hear its passed.
bless each and every one of you Moonbeams xxx
Zuzy
Member

Re: May Moonbeams

Morning moonbeams, not checked in for a couple of days and so much has happened! Dodo, thanks for noticing, I'm fine, just been busy, had head shaved yesterday so suddenly feel like a proper cance patient and realised that all my going out and doing things in a bid to pretend it's not happening hasn't worked, I've just exhausted myself, think need to take it a bit easier after number 2 :-(( also have decided I don't like my wig, even after my hairdresser trimmed and fafed with it out just doesn't feel like me, I'm scarfing at moment, just not sure what to do when next at work.....
Aly, hope sleepover goes well
Ann, I was v tired for the first 3 days, I just had no energy to do anything much but lie on the sofa, I wasn't sick though and after 7 days was back at work. Remember that we get free prescriptions and can get stuff like mouthwash, constipation relief etc from your gp
Hope you all have a lovely weekend. Xxx
nanniereeree
Member

Re: May Moonbeams

Ann. It's hard to describe the tiredness but I just couldn't be arsed and just sat and watched telly for about 3 days ( days 11 and 12 I think) but feel better since then.
I never had any problems with constipation and was supplied with 3 bottles of mouthwash 2 to use every day and one to use if I got a really sore mouth ( which I didn't this time). I also got 3different anti sickness tablets one lot to take 4 times a day and then if they didn't work stronger ones then if still sick even stronger ones. Now been told if I'm sick I will have to be admitted as I'm on steroids for adrenal problem and that will make me more poorly :-(.
Hope this helps.
Marie
Dodo14
Member

Re: May Moonbeams

Ann - I start to feel droopy eyed at some point in the afternoon/early evening but I don't take naps - have never been able to in the middle of the day. When it happens I just sit quietly and watch a film rather than do other things. I am sometimes in bed by 8 o clock but usually manage to last until 10ish. I found the clock watching through the night, tossing and turning stopped for me once I started my treatment as I finally knew what was happening and felt something was being done. It is far easier to deal with the known than the unknown I find.
I had terrible indigestion on day 5 of my cycle, this was probably my fault as I ate too much take away pizza the night before but as I was also constipated at the time due to the anti-sickness meds it wasn't much fun. Since then I have learned to eat light and try to keep liquid intake, mainly water and herbal teas for me, and fibre/fruit/vegetables high at all times. It improved very quickly. The hospital advised me to take Gaviscon for indigestion but try dietary changes for constipation as a first point of call.
Zuzy - Are you ok? Haven't heard from you for a few days. Hope all is well and you have just been busy.
Have ordered a silk pillowcase, burts beeswax cuticle cream and a crystal deoderant from Amazon - thanks to all of you for these tips.
Aly1971
Member

Re: May Moonbeams

Hi Ann, there's a brilliant thread on the BCC website called preparing for chemo or something like that the first post on that has a brilliant list of essentials and then in following threads there's Some additions. The basics seem to be:

immodium & senna as you never know which way it's going to go. Someone also suggested madjool dates as they are delicious but also very good at shifting the digestive system

Ginger - crystallised, cakes, biscuits, tea all to help with nausea

soft toothbrush, mouthwash - difflam & corsydol daily both recommended, igloo ulcer gel

icepops, boiled sweets, pineapple all to help sore mouth

in the drink front i think its trial and error, ginger beer. Ginger and lime cordial, tonic water and fizzy water all seem to be favourites, and green tea with lemon.

oh and plastic cutlery & straws can help with the weird taste in mouth.

theres loads more tips but these seem to be the main ones along with drinking 2-3ltrs of fluid a day especially just before / after chemo

thanks so much again for your lovely comments yesterday, I had a long chat with mum last night and a good cry, I think she didn't realise how anxious I was about chemo and didn't want to get in the way, we both agreed we need to be more open with each other about how we are feeling, so feeling much happier today.

on with the sleepover preparations I have 4 x 8 year old girls descending in a few hours, if I can get through this chemo's going to be a breeze! 😉
Penny47
Member

Re: May Moonbeams

Caz- thinking of you- hard to take bad news when we are feeling down. Sounds like you have a brilliant Plan B for SE's and can't wait to hear how you get on top of the sickness. I've got all of this to look forward to...keep fighting we will win!

x
Penny47
Member

Re: May Moonbeams

Hi Ann I wonder if we’re the only two still up-I’ve only had hormone therapy for 6 months (starting chemo on Wednes so I’m really new here) and wondering how much better or worse I’ll be on Chemo (I’ll have to come off the tablets while I’m having chemo). The tiredness has been really hard. I need to take a nap 5 days out of 7. I need to explain that I have two jobs and there is a lot of hard physical work involved with one and a lot of driving and stress with the other. So I have re-learned how to take naps. These are like crawling into bed for relative comfort (I’m not averse to a hot water bottle) and removing myself from all situations for 20-30 minutes. I have a set pattern of things I do before hand and I always sleep better after a light meal. The rambunctious lying in bed tossing and turning when you are really tired thing – I’ve been there and looking back to it just before or after some kind of non-expected event like a biopsy. There’s a very good introduction to sleep hygiene on NHS direct (http://www.nhs.uk/livewell/insomnia/pages/bedtimeritual.aspx) Basically we find our own level and for me it’s a book in bed by torchlight and drinking lots of water. In fact drinking water is the clue to a lot of digestive problems (to answer the next question) and I’ve got in the habit of following Janey’s brilliant idea of having a full 2 ltr bottle and emptying it out as you have glasses of fluid/cups of tea coffee, a no-brainer way of boosting your intake to 2-3 ltrs a day. I thought I was up there and I wasn’t- no wonder I was suffering. Mouthwash- for me with a slightly sore mouth all the time and a slightly raised chance of cold sores a sodium bicarb solution is the best (1 tsp per pint of boiled water, although some take it stronger) This is cause I hate the taste of the commercial kinds. I’ve taken the advice in this forum about overcoming taste problems and my cupboard is like a strange barkeepers cupboard with ginger and other fruit extracts and tonic water. I hope you start to find some answers as time goes on and I’ll try to update my experience as I get into Chemo. Meanwhile rest well and stay well if you can!
Guest user
Not applicable

Re: May Moonbeams

Can i ask some more questions please. My mind is at warp factor speed again !
Everyone is talking about the tiredness. Can someone explain what sort of tiredness it is. Is it the weary, climb into bed and snuggle down comfortably out like a light, restful sleep and wake up whenever. Or is it the agitated tossing and turning panicky, mind doing horrid things - ie, what I have had since my diagnosis.
I have been told to stock up on imodium and constipation meds. What type of meds should I buy and is it a good idea to start eating much more fibre and take the meds for the few days before the 30th ? I had constipation after the surgery and all but fainted in the bathroom, pain beyond belief and something I have never suffered from before and have no wish to revisit.
Which mouthwash is best for a sore mouth and which shampoo for hair that is going to be frozen at minus 27. has anyone had any success with the cold cap ? my hospital have a new design and tell me it has been succesful with some ladies.
I think I will be able to drink plenty of water/juice but I understand sometimes the taste may be odd, what do you all drink please.
Thank you
Ann
barbara2013
Member

Re: May Moonbeams

Hi Moonies
Aly I have just got off the phone to my mum and dad too- sometimes every conversation has potential for upset or misunderstanding on both sides. My mum also sounded very upset about my hair being short- as if I had any choice! Daren't show her the wig- actaully it's me- can't yet get it out of the box! Good to have an updated list- I'm two weeks post first FEC now and I am so tired!! Best wishes for a restful weekend- specially to thise who have had sickness, tonsilitis, stress etc and to those starting soon- please believe those of us who found the reality much better than the fear we'd built up.
Barbara x
barbara2013
Member

Re: May Moonbeams

Hi Moonies
Aly I have just got off the phone to my mum and dad too- sometimes every conversation has potential for upset or misunderstanding on both sides. My mum also sounded very upset about my hair being short- as if I had any choice! Daren't show her the wig- actaully it's me- can't yet get it out of the box! Good to have an updated list- I'm two weeks post first FEC now and I am so tired!! Best wishes for a restful weekend- specially to thise who have had sickness, tonsilitis, stress etc and to those starting soon- please believe those of us who found the reality much better than the fear we'd built up.
Barbara x