chemo kicks off 20 May - any good buddies?

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Hi all: Thanks for the response Lily - yes I get the folinic acid but not the Vit B - might add that myself although I am feeling OK so far. Yeah, think the brain is slowing up - keep forgetting names, have to do the “you know who I mean - blonde girl, lots of curls, goes out with the guy with the blue Rolls, he’s loaded, something in finance - oh you know!!!” Apart from that my short sight is slightly worse, have to use my reading glasses more but not so serious. Also have watery eyes in the wind - no eyelashes I guess. Thanks for the post advice - you are a fountain of information.

Angie: if it is the end of the world on Wednesday will be well p****ed off as I stil have money in the bank - should I spend it all in case???

Nicky, Bevy hope all gets better for you and for everyone else. The weekend will be crap but at least it means I won’t have to do any gardening.

Keep well all, and be back in touch next week.

LOL

Julia

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Nicky: Congrats on the last dose… gently fanfare for you, don’t want to damage you you poor thing. I didn’t get out until half four last time either but that’s because I started late rather than messing with neuts etc. Just think, you just did you last night after FEC :slight_smile:

Kirsty glad you’ve got the first Tax out of the way, hope it doesn’t kick the hell out of you.

Julia, know what you mean about the watery eyes, I’m actually glad it’s bucketing down today as the dust got in my eyes yesterday and made it really hard to work. Me happy about 10 days of rain in one go… urgh bad sign.

Bought a copy of cancer made me a shallower person from Amazon and a copy of “Coping with Chemotherapy” as a little pressie for the chemowards bookshelves. Its such a great book that I thought maybe the next round of victims for the vamipres might find it helpful to read before starting in Carlisle. The chemo nurses were impressed with it after all. Would like the get them a little pressie but not sure what would be appropriate?

Angie

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Here we go again,
Raaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
Raaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaa
Nicky I am so pleased for you, you super star!!! I know you feel terrible and had to go for bloods twice but you stuck with it and you have finished FEC. Olympic gold for you too. You sound proper poorly so we will all wish you the best and keep cheering for you. Are you anxious that chemo is finished because I think that will be a tricky bit for me, until I get used to it. I know it is more complicated for you and any changes in what we do bring more than their fair share of worry and questions. All those lovely events to look forward to. Keep your eye on that goal and don’t let your mind wander too far forward, if you can. Don’t forget when you have the scans that they gave me the dissolvable stuff in water that I could not even taste and I am fussy about medicine. Say you don’t think you can drink it as still have nausea and see what they say. Hopefully good old epi has blasted your ovaries. I hope so or at this rate we will all be back on a surgery thread!! Mine looks like being at the end of Nov/early Dec. Big big hugs to you and Lisa as you fight off the last dose. That’s 2 of you on the sideline for chemo, well done.
Kirsty glad you started off ok on Tax and hope you remain reasonable on it. It is really strange changing drugs, isn’t it? I have gone from being sealed up with quick drying cement to the trots too. Takes a bit of getting used to. Take care, it must have been very scarey for you on that first day and I was so hoping that it would go well. The doc thinks I might react more with cyclophosphamide, so on piriton, but nothing like you went through.Is your son enjoying the course? Mine is not reacting fast enough to homework and has a busy weekend now. He spent every free lesson, mucking about or at Tescos eating so will get reined in by school if he doesn’t settle quickly. Here we go!
Julia the folinic acid is vit B, don’t take any more without checking or you might OD on it. I have the watery eyes yes and a slight drippy nose too. I could not see a thing when out in the rain and wind today and I still have eye lashes. Research nurse told me one lady has to hold the tissue to the corners of both eyes all the time to catch drips, so feeling luckier than her so far. My memory is shot and I am saying very stupid things, that rotten 5FU does all of these side effects and we get a double dose so can expect to be cabbage like before the end, don’t you think? My friend who had 6 smaller doses of it on FEC told me that she had thought she was starting to get Alzheimers, but it is all coming back to her fast now off F for 2 weeks. My family don’t believe a word I say when there is a dispute about what was said!! Being taken advantage of I think. Joanne are you twinning with us on this and I hope you are ok and not poorly. Did they change your dose or medication this time?
Angie I really can’t have the world end unless it is immediately before my next chemo, but that would be bad timing for someone else! I expect you are surfing the net following it. My husband is an intellectual and was telling me all about it. Not sure I have surplus capacity to take on board new things at present. I am in the third year of my Masters and just cannot get my head down to write or even go the library, and that should be something I am really into. Is anyone else finding reading, apart from light stuff hard? I have to keep going back over the same thing. I really want to finish it, so I can say I achieved something else positive while off work for almost a year. Not sure whether it would be better to defer or soldier on really.
Hair is an inch long now but not covering very well as so fine and fluffy, but it is mainly black so relieved it has not gone white or totally grey yet. I have not been brave enough to have the remaining original hair cut off so some hair is still about 8 inches long. I just can’t bring myself to do it as they stuck with me like you good friends and even kept on growing!! Other hair I don’t want is sprouting everywhere like it was Spring or something!! Not so welcome!! I forgot how annoying it was not to use razors, is that just while on chemo? I only had one node removed so I thought maybe I could just not do it on that armpit. Anyone know?
Have a good weekend if you can if not hope Monday comes round fast for you
Lily x

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hope everyone has a good weekend, or as good as can be. Rant first, aaarrggh!!! Why are some people’s trauma’s a walk in park to us and I get sooo p****d of. Its my friends birthday tomorrow and she’s having a sex and the city cocktail party and I always ensure I make the effort and especially now it gets to me when people that are supposed to be close friends and family are like… oohh Ive got to pick husband up in morning, oh daughters party during the day will be tired, oh pregnant tired, just had baby tired, cant leave hubby to babysit on own - if only I had their problems, Im going and making the effort for my friend and I feel like crap and got cancer - get a grip - soz rant over!!!

Nicky - glad to here you have had no. 6 - hope scans go well. Im really gonna push for scans as hate the unknown x
Lily - arm a bit swollen but hope its just chemo pressure and not lymphodema!!! Piriton eh, is that the stuff that makes you tired? Ive seen people flat out in the chemo suite on it so you might get a good snooze. Glad you feeling a little better!!
Angie - mite have to look up the coping with chemo booklet - I make handmade jewellery so made my nurses something individual - even got their tastes right.
Carrine ann & Kelly - thanks for the well wishes.
Kirsty - snap re veins on inside of wrist - yuk, but hey well worth it for my last one - just hope my viens recover before ovaries out!!!
xxx

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Hi all

Feeling a bit better now but have been very tired this time around, plus the steroids nights don’t help. Hand where they got the (last remaining?) vein is quite sore and a bit swollen so will keep an eye on it but at least it gets a rest for a while now.

Lisa - don’t blame you for the rant. I had a similar ‘story’ from a close friend about how hard life was - get a grip you’ve got 2 teenagers at uni for God’s sake, it’s not the end of the world when they come home and you have to cook and clean for them is it? - I just had to smile sweetly and say ‘is that all?’ Also glad the main holiday season is over so there’s no more friends and work colleagues coming back with stories and tans and asking, very insensitively, ‘Are you going away?’ - ‘No I’m bl**dy not’ My rant done with (for now!)
Lily - When I had my 1st dx I wasn’t warned about razors but had 4 nodes (or 5, can’t remember!) removed. I’ve used a Venus type razor ever since and have had no nicks or cuts, unlike an electric one that always seemed to catch me. I’m not looking forward to the joys of shaving and waxing again. I’ve had to do a few quick shaves on my legs but the hair has been so soft I may start waxing them when it returns for good.
Kirsty - anniversary is 28th Sept, so I really wanted this chemo over and done with so I can eat what I like rather than look at the menu and see there’s only 1 thing on it I’m good for! The only reason I waited for them to do my blood test again, determined to have last chemo on time, even if it meant me leaving the ward at 5.45.
Will not harp on about the end of chemo for all of you still going through it but will keep you posted on ‘what happens next’ if you want! Still got the usual 3 weeks post chemo watching the diet etc but at least after that I won’t have to drink cooled boiled water all the time. Also will still be having blood tests (post menopausal or not?), scans, results (arrrgh) and Pamidronate (every 4 weeks) so no leaving presents from me for the nurses! Will still be going in each month but will sort something out for Christmas for them all - they’re all so lovely.

Take care all, have a nice weekend.

Nicky xx

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Morning Ladies.

Hopefully off out to see hellboy this afternoon. That’s assuming there’s a route out of the village that isn’t flooded. That’s one problem of living in a valley between the mountains and the pennines. It’s Tommy and I’s 14th Anniversary (of when we met) on Tuesday. We were going to get married on that day but I changed my mind, didn’t want my wedding day to be in the middle of chemo. If I hadn’t had to wait 15 weeks to start the chemo then we could have done it but fate had different ideas.

Have to admit we were chatting last night about how I’ve been treated by the oncs and we’re both pretty angry about it actually. I mean has anyone else here not actually met the person who designed their treatment course. A very nice irish guy came in to tell me what the head onc had chosen for me but to date I still haven’t met him and I’m not sure I should now as I might just blow up at him, way to make you feel important… it’s not like it’s life or death or anything… oh yeah I had cancer… it ****ing is!

Sorry, just not sure how to approach it as I’m a pretty strong willed person and if I don’t complain about this then I dread to think how people who are feeling more vulnerable will be being treated in the future. I’m sure it’s from them being overworked or something but as my mum rightly says why is it I always worry about other peoples needs first.

sorry, rant over. I’m not even loaded with Epi… hellboy should help :slight_smile:

hope you’re all enjoying this fine sunny summer weekend (trying denial now :wink:

Lots of love

Angie

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Hi,
Lisa, I think it is because the diagnosis of cancer makes you think differently. I tell people it made me turn around and look at things from a different perspective. My idea of a good day is one without something sharp coming in my direction, feeling reasonable or better and no results due. Before this I would have wittered about ‘things’ mostly although i would like to think I always had the same high regard for time with my family. You are a good friend and I am sure your pal will just be so chuffed that you came that it will overshadow the more fickle friends. Not sure whether to laugh or cry about being flat out in the unit. Will now worry about snoring and embarassing myself!!! LOL My hubby is concerned that he will need a tractor to move me! Hope you are feeling a bit better and just remember whent hat day is done you will not be repeating it.When is your next appointment? Nicky I hope you are feeling better and your arm is calming down. I have no idea how long that takes, being stabbed in the chest instead, I get a bruise every time, which is worse now having it repeated a week later. Fingers crossed you can eat whatever you like for your anniversary and looking forward to Sky news and seeing you in your hat! Do you get side effects from the pamidronate, apart from the bother of going in and having the veins stabbed again. Surprised they haven’t bullied you into a port too!
Angie hope you got out to the movies, even if it was in a boat! Seriously though , I hope you guys in the floods are safe and homes not wrecked. I am disgusted you haven’t seen the bloke, ask why not.
Hugs
Lily x

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Hey movie star!!!
I saw you on tv today and you looked great. For those of you who don’t know what I am talking about and who have sky, watch or record one of the ‘news, sport, weather’ progs on sky news channel that repeat all day today. Nicky has 2 appearances and looks fantastic, wish I looked that well. A brief shot in a yellow hat and green jumper first and then a much longer part and one of her cannula in her hand having the drugs!!! Quite a big enough appearance to be paid for!
I nearly cried watching you mate but boy do you look well. I hope you have recorded it yourself and well done
Lily x x

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Hi Girlies,

how exciting Nicky to be a star! and mored importantly you deserve an oscar for getting to the finish line with chemo well done and what a relief that must be.

Lisa I think Lily is right being diagnosed with cancer has certainly made me feel differently about life (and Angie I don’t want the end to be on Wednesday I would be truly hacked off after going through all of this if that was to happen!!!) and it does become a bit galling when people start complaining about such trivial things like " the hairdresser has cut my hair too short (Aghhh think yourself lucky you have hair!!) but I have to remind myself previously I too would have probably felt miffed by stupid things as that is normal life and people don’t mean to be so insensitive they are just lacking in awareness.

Kirsty I too have been using aloe vera toothpaste aswell as drinking aloe juice and so far (I may regret saying this!) I haven’t experienced the mouth problems. However my hair is now practically all gone but I like you Lily just can’t bring myself to have the few wispy bits I have left cut off and I even try to brush them how pathetic is that! glad to hear yours is growing back Lily.

Thanks Julia I am now feeling better I have been on medication for severe cold sores which cause a great deal of discomfort and in my case a raised temp and aching limbs as I have a particularly nasty strain of if living in my body bl—dy parasite! still I guess it does come back to the low immune system.

I am still experiencing the prickly sponge feeling under my arm and around my back due to the loss of lympatics as I had 25 nodes removed in total does anyone else still suffer for that or have any idea of how long it goes on for as at present I have to put my p.j.'s on at 8 pm as I cannot stand being in a bra any longer as it too uncomfortable as I feel it swells up even more my the evening. This is the reason I still cannot drive (which is so awful having to rely upon others) as my arm is too uncomfortable to do so.

Anyway girls wishing you all a good week and will be keeping in touch.

love Bev x

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Bevy… I have some good news for you re cold sores. I found a way to stop them surfacing. Could kick myself that I didn’t know about this decades ago.

I’ll send you a link to it in a mo but it’s a simple little lip balm. It contains a vitamin called lysine and the herpes simplex virus that causes cold sores simple can not live near it, so just apply a couple of times a day for happy soft cold sore free lips. Once you’ve finished the chemo you can do what I’m going to if you want and take a supplement, it kills the virus once and for all. Sadly you will almost certainly catch it again as 80% of the population has it :frowning:

anyway the one I’m using it Aloe Vera lip balm with tea tree and Lysine by Aloe Dent.

Another plus is the tea tree is antiseptic and antifungal. That must be how I got over run with thrush but not in the mouth, my mouth wash has tea tree too. It just never occurred to me at the time… sorry to be telling you all this so close to the end of treatment… you can hit me if you like :wink:

I don’t have sky news sadly but I have a vision of a dashing beauty swooning with colour… or is that epi :wink:

I’ve only just started to get proper feeling back under my arms bevy and my op was over 6 months ago.

I’ve been reading cancer made me a shallower person and I have to say it is funny… a little too close to home as she worked with databases too so the sketch of her worrying about cancer intermixed with worrying about having got an sql query wrong really is the kind of joke that about a tenth of 1% would get. freaky.

Hope you don’t all find this too crude but my complete lack of hair in the nether regions and eating far too well is producing some really quite amusing windy sounds late at night if you know what I mean… anyone else finding their body doing odd things … I’ve gained 8 kilos according to the scales ! gulp, that’s going to take a *lot* of walking.

Lots of love to you all wherever you’re at. Going into my good week at last but I’m getting quite whingy about the ulcers that are at the tip of my tongue, and I keep biting my tongue. I guess its got fat too or something. Very odd.

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Hi,
Nicky I have been replaying you to show my family and for some inane reason it makes me want to cry every time!! I have no idea why. They have been commenting that you are on a hospital bed but I am treated in a portacabin type separate building and get treated in an armchair. I think I might prefer a bed actually. You look very serene and calm although the close up of the cannula in your hand made them all squirm. You look very slim and attractive I thought too. Most of all I am hoping you are finding your way back up to the surface after your last FEC and you don’t have to do those days again. Of course we will all be following your next steps closely and I would be especially bereft to lose your calming words when I am blue or the side effects overtake me. I hope you like the programme too, I did.
Bevy, people keep recommending aloe vera but I have not been brave enough to try it yet. I have visions of it tasting like I bit a big juicy cactus/succulent. Tell me it is not, so I go to buy some. You love your wispy bits, mine kept me feeling normal even if it did not appear that way to the rest of the world.LOL I blow dry mine and turn them under and the fallout has stopped. How nice to not have to prepare myself for how much is in the comb each morning. Before you know it, yours will be spreading right across too. I had to move to cotton soft bras as I got a sore area that I mistook for something nasty and nearly had to get it tested (ouch) from a wire in a bra. It was hard to find some in larger sizes but good old Asda had 2 for £3 soft, white cotton and they are sooo comfy I am now a boring comfy bra wearer. I think it was my port that hurt most as it was pushed into a new position. Sorry to hear you have got a nasty herpes and the arm to put up with too. Gosh that must get you down when both fire off. I only had one node out so cannot really be of any use to you. You could start a new thread to find out more.
Angie, that sounds like another good tip from you, have managed to evade cold sores fortunately and no mouth ulcers so far but I think I might suffer as I go further on with 5FU. You can get that steroid cream to heal things up if it lingers.It totally numbs the area like it is covered in wax so pain stops really quick until you wear it off. Yes it is windy in my end of the world too since on CMf!!! It must be C or F. F for fart sounds like a likely candidate. LOL
Hope you are all ok everyone else , let us know how you all got on this week when you can. Bevy, Angie and I seem to be on a different time zone with the doses.
Hugs all round
Lily x

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I just want to clarify that herpes simplex is the common cold sore virus and *not* herpes the sexually transmitted disease… could lead to some confusion there :wink:

More steroids… oh god no thanks. I’ve only just calmed down after a fascinating afternoon of research re diet that I’d probably get shouted at for saying here because yet again I’d have to crypticaly give you the words to google for when a link would do the job but essentially it comes down to this…

I went and harvested a load of lovely foods in the garden this afternoon including some beautiful rainbow chard (I love spring greens so thought I’d try chard too) I had a huge craving for greens last year when the cancer would have been growing by some pure chance (really was actually looknig for othre greens to grow) I came across a 1998 peice of research that indicated that eating the brassica family doubled the efect of tamoxifen… yeah sure this was in mice and invitro (ie cells in a dish) but a serious piece of research and trial anyway. So that started me thinking. this adjuvant data we’re all supposed to trust so much… how many of the peopel who survive have changed their diet etc, are getting excercise etc, laughing a lot. None of this is part of the data, just the drugs like that’s all that counts… is it f***.

Sorry tempering myself now.
Anyway all the diet advice I’ve heard so far is don’t do x y and z eg dairy, soya, wine… I’ve heard NADA about using diet to help, ie increase our immune systems etc.

All I’m saying is do your own reading because there’s a LOT you’re not being told because they haven’t done the research so we have to decide for yourselves.

Maybe in 10 years I will write that book after all… mad as hell and really looking forward to being back in control.

This is the last time I will mention it, do your own reasearch eg. brassica breast cancer… it’s hard to know what’s right and wrong but I’m going to print a load of papers out and take them to the onc and ask his opinions and if he doesn’t know I’m going to ask him to read them and get back to me. Ignorance just doesn’t wash anymore.

You wouldn’t believe that I’m actually really happy right now apart from the treatment would you… honest this isn’t epi anger this is pure stunnedness at ignorance.

I sooo hope I’m wrong and they do know about this stuff or else I’m in an awkward place as to who to trust with the next big decisions… gulp.

Angie

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Hi all

Just raised myself from my beauty sleep ha ha! Well, managed to miss my big moment as I really couldn’t stand the thought of seeing myself get Epi! Glad I looked OK and love the comments Lily about being serene! As I said before we were laughing like drains before they started filming so had to calm down a bit! If it had been this week it would have been different though, I felt like cr@p all the day and was sitting in a chair looking very uncomfortable and no where near as slim! I hope you noticed the strategically placed arm across my stomach? Mine I might add to anyone who didn’t see it! I’ve just received a text from my Ma and Pa who are in Berlin at the moment saying was it me? I’ve so far spared them the image of me with no hair so they haven’t seen me without my wig for ages - good job I kept my hat on - they may have had heart attacks seeing their poor little bald girl :wink: Funny thing is they don’t have Sky at home so quite a big commitment for them to travel all that way to see me!

Lily - don’t worry, my words of wisdom (?) will be around for ages, after all I’ll be logging onto the secondaries board fairly often `I should think. Plus all you lovelies having rads - been there, done that - loads of ‘advice’! On the subject of bras when I had rads I stopped wearing wired bras. M & S had some good soft ones that gave good support and also I wore soft crop tops that helped - no tight straps etc so you and Bevy may find they help.

Angie - I agree with reading about foodstuffs to help rather than avoid. There are trials going on with prostate cancer patients for watercress and pomegranate juice, separately I might add! When I had rads after 1st dx the men being treated for prostate cancer were having Zoladex, like me, as it’s hormone linked. Therefore my view is if they are responding to these types of foodstuffs in a positive way I may as well give it a shot. Will start on daily pomegranate juice once the taste buds are back in force and the chemo is not longer killing the little b*ggers! Also the noises from down below are awful aren’t they? I keep looking round to see who could have made such a loud one! However, can’t keep them in, and I’m never usually like this - just goes to show how chemo affects us all!

To all I’ve not mentioned, sorry, and I hope you are all doing well. Lorraine, I hope you are OK as we haven’t heard for a while. To all on good weeks, enjoy them, those on bad weeks, let’s hope we get over them quickly.

I’ll now sign off — mwah, mwah, darlings

Nicky xx

ps Song of the Day - Superstar by Jamelia!

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Thanks Angie for all the advice! I will be checking out that website. Regarding the food I think you are completely right we do really need to look at our diets (can’t cope with doing that whilst having chemo but intend to afterwards) I bought a good book by Dr DAvid Servan-Schrieber called anti cancer a new way of life which is basically about how we can help ouselves with food. The Author had cancer himself and it makes interesting reading.

Also has anyone heard about having their oestrogen (prob spelt wrong!) levels tested. I read the level can be tested by a saliva test (sounds painless) as the theory is the higher the level the higher the chance of cancer developing (not only hormone receptive cancers but all cancers) I think it would be very useful to have the level checked now and then again after two years use of Tomoxifen to see if it had dropt. Has anyone any opinion of the usefulness of this not sure where you get it done though as the book I read suggesting it was written by an american.

Lily the aloe is perfectly palitable if you get one that is already mixed with some juice I buy the forever living aloe with cranberry as I thought that might help the uirinary tract too. Probably grasping as straws but hey ho why not.

Well done Nicky once again!

love to you all and thank you for all the support as I do know you all really know how I feel.

x

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Hi,
woops sorry, I do know the difference but did not realise I might be suggesting anyone had the other type. These things do not occur to me in these times of mental deficiency from 5FU.Today I have said camera instead of candle 3 times and everyone thinks I have gone bananas! Well so do I. I am also retaining water and I refuse to take my wedding ring off, even if my finger falls off from it! It has not been taken off since I got married 28 years ago - at a very young age, of course, despite operations, scans, etc!! Anyone else got this? My toes hurt they are so swollen some nights so sleeping with my feet on a pillow every night to try to reduce it.
Bevy thanks for the advice re aloe, might get some tomorrow if I remember, not likely unfortunately unless I remember to write myself a note after this! Very interested in the book and the hormone test if you find out more. Glad to hear you sounding a bit brighter. Long may it last. Angie, will try to look that up to, my daughter must have read something similar as she tries to bully me into eating the dreaded brocolli when she is round!! I don’t even like green sweets! I need to start a new life style really. Got a great excuse at the moment can’t even eat one of my favourite cherry tomatoes on the vine without getting the trots on CMF. Answering your post on diet, I guess Roche and the rest of the chemical/medicine industry don’t get much dosh from us eating veg, so not much incentive to find out if that works!!! Sorry that was rather cynical. Nicky I am so surprised that you did not record it or watch it. You would have been a real tonic to anyone about to start chemo, with you looking so in control and relaxed, make up was brill too!! Def did not notice a hand over the tum, must have been the angle of the camera (nearly typed candle grrrrrrrrr). Sorry it went downhill on the next one but at least it is done, rather than heading for it again now. Hope you are on the up soon and glad you will be loitering around this thread. Still hoping you will have zapped another big chunk off you hip trouble next time they look at it. Are the bone treatments the same, a cannula in the vein or is it a smaller needle? Hoping you say it is a bit better. Will pick your brain when I get to rads in December - oh my what a long time to go on CMF. That is a long time without any fruit or veg, hope my guts get used to it over time and give in to having a few occasionally. Lorraine I am anxious too. How did it go? Can we help in any way? Sending you a big hug no matter what.
Love to everyone else,except tank top terror who gave me a lingering kiss on the neck after applying a 2 handed grip to stop my escape. Threw the dribble drenched tissue away in the wheely bin and applied anti bacterial hand gel twice to be safe!! Gosh how tough life is to be a sex symbol to the oap population!! Nicky he wants your number!
Lily x x

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Lily

Don’t you dare put him in touch! And I hope you’ve erased your copy of my starring performance! I’d only have to whip my wig or (now famous) jersey ‘hat’ off to surprise and repel him!
Am re surfacing now (me, not the road outside) and made myself pick some damsons yesterday. My Mum (God bless her, now in Prague on one of their retirement sprees!) makes a mean damson chutney which my youngest loves so insists she makes each year. I did the hard work and picked 2kg yesterday, she can do the rest on her return! Luckily they are growing in masses just in the fields outside our house so it wasn’t much of an expedition but it was nice to get out of the house. generally feeling OK, especially once proper sleep comes back, I hate the steroids even though I take them early enough I still am awake at night. Plus I have been worrying about my hand as well. I said it was swollen after chemo and was really worried I’d have to have my wedding ring cut off before my finger dropped off! Luckily things are subsiding now and not quite so ‘blown up rubber glove’ look. I have been keeping an eye on it by the way and would report in to bcn’s if it was getting worse or not improving. I definitely get swollen veins/area after chemo so it could be one of F or C as you seem to get it as well. I started off using the seabands to help with anti sickness but realised they also cut into my wrist a lot on that side so I guess it’s happened each time.
I’m also hoping my ‘areas’ have improved - otherwise I’ll be well p*ssed off! Having said that I have read that the improvement may not be as much over the 2nd half of treatment so I’ll just have to wait and see (arrrgh). Having said that my view is they are already smaller than they probably were a year ago so I’ve gained a bit of ground which I hope continues with the hormone therapy and pamidronate. I get the Pam by cannula but my veins are so bad at the moment it is possible to have it in tablet form each day. This sounds OK but in reality you have to have it 1st thing, on an empty stomach, and nothing except water for half to 1 hour, and stay upright! Hmmmm, between the devil and the deep blue sea me thinks!
I’v not had any problems with the gut on F and C part of FEC, so maybe it’s the M that’s doing you in? Another annoying thing to watch out for though in terms of what to eat, hopefully it will ease the further away from each dose you get. Are you now on 4 weekly after your 2 weekly dose? Hope you’re keeping well in between apart from chemo brain! All I can say is thank God (or Microsoft) for spelling checkers, my posts would be awful without them. Plus my Nintendo DS has kept my brain trained! There’s a few of us each time on the ward who take them in and the nurses all have a laugh at us. Having said that they all seem to have them at home and all seem the enjoy the Germ Busting game - wonder why that is and maybe that’s a good thing?
Don’t worry about picking my brains about other treatments - they’re probably full of cotton wool at the moment anyway - but your treatment is a long way to go isn’t it? When I had my 1st dx, because I didn’t have chemo, it all seemed to be over so quickly - dx, op, rads, DONE - a very weird time for me. Although it is so long at least you know you’ve attacked IT on all sides. Maybe we’ll have to organise a Southern get together, like Lisa and Angie are doing in the Lakes? Don’t know where we all live (except you) but there might be a common area, or several, if we’re all spread out.
Take care, watch out for the tank top terror!

Nicky xx

737

Hi Ladies

Sorry I havent been on much but lots happened since last week and it takes ages to read everything everyone writes. So If i forget anyone I’m sorry but by the time i got to reading the last one I forgot what everyone has said LOL.

Anyway got my second CMF last wed and they gave me the C through a drip over an hour I also refused the steriods they give you with it as I had a funny feeling that this was causing me a lot of problems.

Well I felt loads better although I did sleep for 36 hours lol so by the time I awakened I was fine even went on the razz of sat. Slight problem with stomach but Zantac soon solves that and had to big fry ups at the weekend. No other side effects to report so far feel better so long may it continue.

I have learned to flush my Hickman line ,myself so first time today hopefully I wont give myself a heart attack lol I’ve asked my son to be with me just in case, will let you know how I get on.

Lily and Nicky was reading your post and your making me hungry just thinking of your wee fat fingers put me in the mood for some lovely sausages hahahahahah so souldnt laugh must be a nightmare apart from looking like my daughter in law who is 6 months preganant I haven’t had much swelling.

And miracles of miracles my hair has come in it’s about half inch now and so soft kids laugh at me as I’m always brushing it. it’s a strange colour don’t think it can make up it’s mind what it wants to be yet sort of white with black ginger and blond and before this I had sort of dark gingery blond which I dyed blond so its quite wierd to see the origonal colour now thank god for organic dyes lol.

ok will shut up now and let someone else in

Take care all

Joanne

738

Hi Joanne

Good to hear from you and that things are going OK with your CMF. Can’t believe you can eat fry ups after chemo - it takes me about a week to get my true appetite and taste back but then there’s no looking back! Talking of fat sausage fingers - guess what we’re eating at home tonight? Hope it’s not making you too hungry :wink:
Sounds like you’re turning into a tabby cat with your hair - all those colours! I’ve got to wait for my next post-chemo drop but then hope it starts returning, what colour I have no idea but I think it will be my natural (unlike the last xxx years being highlighted) dark brown hair with more than a sprinkling of grey. Better get some hair dye in - where did you find the organic dyes as I think they will be best for starters?
You’re doing well flushing out you line as well - what we have to do as part of this I don’t know. I’m still giving myself GCSF injections as I’m sure my neuts are nearly non existent at the mid way point and I managed to get a prescription for them even though I don’t have chemo again. When I told my best friend, who’s a district nurse, that I was giving them to myself she said she could never inject herself! Needs must I’m afraid and better than hanging around for a nurse or going to the surgery to be sorted out. Take care and make sure you get it right each time - scary stuff!
Hope you continue to feel good.

Nicky xx

739

hi everyone,

im still around, thanks for everyones concern.

just been so busy getting out and about lately. the weathers not too brill though, need to invest in some wellies, feel like some really bright ones, then i can go and be mad and splash about in the puddles… done my six fec now, just waiting to see what delights theyve got for me next. was supposed to be lined up ready, but the hospitals organisation, is not so good.

have you girls who have sore mouths tried pineapple juice, dont ask me why but my oncologist, suggested that. i have only had a few mouth ulcers so im lucky,.

lily 2000

glad to hear your feeling cherppy, thanks for your concern, ive just been so busy.
i did write a message a few days ago, but the stupid computer lost it, and i fell out with it then, and went in a sulk. it makes me sooooooo mad!
how are all the family coping after the loss of your mother in law, hopefully you have pleasant memories, and can be thankful that she is now at peace.
i have a chance of a break from treatment for a few weeks, which im so thankful for, just hope it doesnt hinder my recovery, this disease is so frightning, a lot can happen in a few weeks sometimes, but im not going to worry, and just enjoy the next few weeks.

Nicky 08

hi nicky,
bet you glad youve completed that stage of your treatment. have you got bone secondaries like me? i keep forgetting. in fact i keep forgetting a lot of things lately. as youve probably read on my other threads im waiting for scan results, and appointement with oncologist… but im a little concerned because ive had some discomfort in my bones… i was told to tell them, but i just feel i need a few weeks let up at the moment…
what treatment is next for you? i missed your appearance on the television, i really wanted to see that. never mind perhaps youll be on again, maybe a prime slot this time. glad to hear your on the up now, keep going and have lots of fun and laughter.

take care girlies, do something for you,each and every day, you deserve it.
Remember
Today is a Gift, thats why they call it the PRESENT!

LORRAINE X

740

Hi

Nicky and everyone who has hair returning wierd colours Sainsbury’s and Tesco does the organic hair dyes which I’m told is ok to use while or after chemo.

Joanne