About to start chemo

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Hi All

Well I am still stuck here could not go to van today either as had diarrhoea yippee now on immodiums glad I never took stuff DR gave me for bowels, can’t decide if its IBs flared up, reaction to one of many medicines I have been prescribed all include D as a side effect!!!, or just a build up of the constipation so I will now be back to square 1!!!

At least the mouth is better, it was brill stuff he gave me it was called NYSTAN it is a liquid you squirt on tongue and swill round mouth, it is an anti fungal antibiotic, tasted nice too!!!

Glad your next ones went well Ann and Louise, hope Lynn’s and Paula’s go ok too.

Ann you are brill going in to work, I have given up even asking now as I still get told NO, it is going to be really difficult returning I have just been reading a thread on here about phased returns to work. They have still not appointed anyone to do my job, so nothing has been done since I went off sick in Dec, I have had a new manager since then too, so that is not going to be easy either, especialy as I hear what is going on or not as case might be!!!

Is TAXOL the same as TAX? Or is it different I have been told to paint my nails black!!! So I really wanted to be a GOTH (no offence to anyone who is)

sfor power naps its more like comatose, I have been asleep again this afternoon did not get up till 11.30!!!, me and cat had cat nap!!! Then I did stagger in the greenhouse and put more plants in think I am going to be competing with KEW this year or Chelsea flower show!!!

Yes the time is passing quickly I have to say, some of us are half way through now amazing isn’t it?

I was offered the line but so far have refused it!!!

I have been thinking about your dilemma in the toilet Lynn, I think it wsa best to ignore it and pretend you did not notice, if someone actually asked me (whom I did not know) if I was wearing a wig I would be mortified and upset, refgardless of whether they had hair or not, it is a very personal thing isn’t it hair loss? I’ts probably the one thing that sticks in people’s throats the most about chemo the hair loss. Does anyone else find that it affects their spacial awareness when driving or judging distance of things near your head?? I kept banging mine today in the greenhouse!!!

Any way Ladies for the third time I endeavour to set sail into the sunset (in my dreams) to Wales tomorrow, if I don’t go tomorrow I will have to unpack my clothes as I have nothing to wear.

Sarah X

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Please forgive me for intruding upon your conversation but I just wanted to thank you, Sarah, for helping to end my evening with a little giggle - my sense of spacial awareness has been affected too - a very odd sensation. I hope you didn’t bang your head too hard.

Nice talking to you. All the best with the rest of your treatment. Love Naz

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Hello again

Naz, you are welcome, you’re not intruding, I know it can sometimes feel like that when there’s been a few people chatting away.

Sarah I bet you are well n*ffed off, esp the toilet business, it’s either dragon’s egg or snail trail (keeping the Slugsy metaphor going here lol) Hope you feel better soon, I am sooooo tired and a bit sicky today but have been out for a walk, big achievement. Hope you get to go to the van soon. I haven’t had any altered sense of spatial awareness at all, mind you my hair was quite short and thin to start with. I certainly see people looking at me more, though. I return their gaze steadily and smile. Keeping up the noble suffering persona, ha! I think Taxol is different to Taxotere, your nails are less likely to split/fall out with dark nail varnish so that’s why you have to be a Goth!

Lyn I think you did right not to mention re the wig, she probly wouldn’t have wanted you to know she was wearing one. Hope you and Paula go on Ok with your treatments, let us know

Love to all

Louise

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Hi ladies,
Paula how are you doing? Thinking of you and sending positive thoughts your way and a ((hug)).
Sarah, i hope you actually manage to get away and have a really relaxing and refreshing time!
Hope Ann and Louise are doing well this week?
I’ve seen Onc and been given a date to start chemo. Next Wed.9th April. 3xFEC and 3xTaxotere,then 16 x rads.
I’ll get an appointment re fitting for a wig in next 2 or weeks.Would have liked to have it sorted sooner. I’ve bought a Buff and really like it. What do you wear in bed? Going to ask a friend to cut my hair shorter, in stages.
Taking strong multivit and mineral to boost my immune system before I start, and hoping to eat healthily, appetite permitting! Hope I don’t put weight on, I need to lose 2 stone! I expect that will be the least of my worries, however.

Oh, nearly forgot to say, good news at this point, CT scan was all clear for chest and abdomen. Phew! I’m to go for an MRI scan of right breast soon, at Oxford, because there is a high risk same type of ca may start in that one too. I may elect to have that removed later, rather than worry for rest of my life. Invasive lobular type doesn’t always show up on mammo’s, apparently. I’m on tamoxifen, though, so maybe I’ll be ok. I’ll talk it through with my lovely consultant after all this is done. I may be too fatigued to face another op!! Definitely not looking forward to taxotere, from what I’ve read on here. Oh well. Did any of you see Casualty 1907? A bit too graphic in parts, but otherwise I loved it. Interesting! Glad we have all these medicines to help us these days, aren’t you. Even when they make us feel so poorly for a time.
I’ll probably be on here a lot more once my chemo starts next week. I’ll be glad of your support and encouragement.
Take care, and ((hugs)) to you all. Love, Ann

p.s. Shamefully, I admit I have not done a thing yet in the garden, due to weather. Maybe tomorrow? Just want to get some summer bulbs into tubs,that’s probably all I’ll manage to do. And maybe sow some seeds. Nice distraction, therapeutic!
I’m trying to stay calm and get plenty of rest before chemo starts. No point worrying is there? Day at a time!

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Lovely to be warm enough for shorts early today, though it got cold by the time I walked the dog late pm. Got through the day without a nap too! Portacath inserted yesterday under IV sedation, just below collarbone beside right bra strap and just as I’m getting used to the funny left arm following axillary clearance, last night my right armpit and shoulder felt as if a needle was stuck there. Sore night but ok since this morning, just took a couple of ibuprofen, not too much bruising either. Ann, you’ll start 2 days before me (I’m having Epi-CMF). Brilliant about CT, good luck with the MRI and FEC, and wigs! I told my 16 year old she can chop six inches off my hair, before I get the wig people to look at it.

A friend in Oz has recommended Olive Leaf Extract to boost the immune system - I’d said some professionals advise against Co-Enzyme Q10, which I’d thought would be ideal. Anyone heard anything about it? Really anxious to stay on top of tiredness and tummy trouble during 4x Epi, just to manage to drive the school run until after GCSEs! Lyn xxx

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Hello all

Well it is day 4 for me and feeling not brilliant but not too bad. My 13 year old is “trying to be helpful” in assisting in our regime (daily doing of surfaces with Dettox and clean cloth) and he has gone mad with the spray and the house smells like a hospital. I had a bad night and staggered down at 4am to be met by the STINK. All the windows are open now. My husband has had a hideous virus for the last 5 days, coughing everywhere and raging temperature. He is sleeping separately from me and not even sitting on the same settee at night as we are desperate for me not to get it. Apart from that (!) everything is great lol.

AnnaG: Great that you know where you’re batting now and excellent news re the CT scan! I don’t know about the gardening, there is sleet and snow forecast for the weekend so I am leaving my pathetic attempts for a couple more weeks. You asked about headgear in bed, some people have chilly heads and wear a turban or beanie, I have always been plenty warm enough and if you get going on the Tamoxifen then hey, no worries, I have an electric fan on my bedside table for overnight flushes. Yes I did see Casualty 1907 and the biggest impression I was left with was thank heavens for antibiotics.

Lyn: I haven’t heard anything about whether we can use the Co Enzyme stuff whilst on chemo, the thing I had recommended was Manuka honey, however get it in at least 10 strength as any weaker than that hasn’t got the immune-boosting properties. One spoon a day! Mind you, it might not be equal to shrugging off my husband’s virus. WOW shorts! I am impressed. By the way, thinking about the school runs and GCSEs, let’s hope you will be fine to do it but I would urge you to think about back up plans, even if that means a taxi, you never know how you may feel.

Paula: Hope the chemo wasn’t too grisly honey , let us know how you are going on

Love to all, including AnnMc, Sarah and Naz

Louise

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Louise.

Can I suggest you decant a little of that manuka off into another jar and give that jar to hubby, make him eat a teaspoon a day.

I say this because that’s how I know of manuka, I’ve used it (an echinacea) for the last 5 years to stop me getting colds and blurgies. It’s worked, I nearly had a cold 2 years ago and that’s it :slight_smile:

So it might help him clear up faster and I bet you need your cuddles (lord knows I do).

Right off to eat my Manuka and omega oils (what a regime I’m on and it’s 6 weeks before I start chemo if I do).

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Hi ladies.
I’ve made a suggestion on the thread two slots above this one ( starting chemo, 7th April by polly ), about trying funny movies during our “low” days, to boost our immune systems. Go on there if you have time, and let me know what you think! It will be a sort of experiment for us, of the nicest kind, and I hope it will do us tons of good!
I am taking manuka honey, immuneAce supplements and co-enzyme Q at the moment. I may not be allowed to continue the Ace during chemo, I hope to ask my onc again, as the onc nurse wasn’t sure.Are you allowed to take a supplement, Lyn? I may use milk thistle after my chemo all finished, to help my liver.I’ve not heard about olive leaf.Like me you feel that you want to do something positive, don’t you, and not just sit back.
Speak to you later.
Enjoy sunshine today!! Ann xx

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Hiya,

I’m with Ann - I spent the entire day yesterday watching episodes of Gavin & Stacey and really giggled - it felt so good!

Can’t wait to hear other people’s suggestions.

Lots of love, Naz

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Hi there friends,

Well that’s 1 down and 5 to go!! All went well yesterday chemo nurses really helpful and caring all my questions were answered and I have loads of anti sickness drugs to take, which for now are doing the job. I was quite impressed about the length of time it took I was hooked up at 2.15 and home by 3.30pm not bad going for first time around. Have felt a little tired today but have managed to walk the dog and do some housework. I’m having FEC100 does anyone know what the differnence is between that and FEC75, then I go onto Taxol for 3.

Anna I’m so pleased your Ct scan went really well, her;s keeping fingers crossed for you MRI too, so pleased you’ve now got a starting date, there is a light at the end of the tunnel - hugs xx

Welcome Naz, never feel your intruding we are all in the same boat.

Lynn, well done with your toilet episode, you did right! I admire you having a portacath put in your so brave!

Hope your keeping well Ann and Louise and good luck with your next stage.

Hugs to you all

Paula xx

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Hi all, just been looking at chemo scarves, bandanas etc on ebay, there’s a seller based in the USA with some lovely patterns and postage isn’t bad, especially if buying a few items, the seller name is ‘englishtraditions’. Why do I get the feeling the wigs on ebay are aimed at cross-dressers, or fancy dress…?? Hope the salon ones are nicer!

Favourite DVDs in times of stress are usually good old Disney, fast-moving comedies like Airplane! or Blues Brothers, or chick flicks. Ann, how about a thread listing suggestions?

Well done Paula, and thanks, but I think the portacath is the easier option than them trying to coax my veins out of hiding! They told me I had to have one before starting chemo, I didn’t ask for it. Hope it works well, it sounds a good idea in theory, the site is a bit tender now but it won’t show much once the bruise has settled.

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…Louise, the references I’ve read are only on here - if you search ‘Q10’ in comments, it seems some people have been encouraged to take it, some warned not to, I’m not sure if these are all ER+ but I think soya comes into the argument too. I have a list of possible supplements to ask about. I have always taken a multivitamin and mineral, plus Vitamin C, want to make sure it’s ok to carry on with these, and check Co-Enzyme Q10, Vitamin B complex, and the Olive Leaf Extract my Aussie friend mentioned. Googling it is quite interesting, though the oncologist will probably never have heard of it and will just say eat sensibly… but he tells patients the cold cap rarely works, so only 10% of his patients try it, yet his nurses say it works 80% of the time in those that do persist… who can you trust? Sometimes I’d rather trust my own instincts, and research, but I guess it’s sensible to ask. Lyn xx

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I know, Lyn it can be be very confusing. I take a multi vit and also a garlic and the onc said it was fine to take those but to stop taking the ginko biloba I was having before. I am ER+ and HER- by the way. My onc was very sceptical about dietary things and said I should do whatever I think makes me feel better whether that it dairy free or soya free or whatever.

Glad you are Ok Paula, I find day 4 the hardest (day 1 being the day of treatment) but everyone varies. Are the kids behaving?

I have been on the other thread re the movies and made some suggestions, it is the thread about chemo on 7th April.

Louise x

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Hi everyone,
yes might be a good idea to start a thread just for suggestions, I’ll do that tonight then i must go to bed, can hardly keep my eyes open!

Ann : )

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Hi all

How is everyone? Sarah are you due back from the van this weekend for Number 4? I have been better physically this time but truly mentally in the dregs of the world, amd going to ask if there’s something I can take which will stop me feeling I want to jump off a cliff, it only lasts a few days but is just terrible. AnnaG I am glad you are Ok, following you on another thread. Ann Mc where are you? are you OK? Lyn How did it all go and how are you feeling? Sophie and Naz sending you a hug. Paula, glad you got through that terrible time, how are you now?

Louise x

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Hi all, I’m losing track of which threads to keep up with…! First Epi yesterday went really well and (touching wood) I feel absolutely normal at the moment. Bowels haven’t woken up this morning, not a worry just yet but I’ll take Senokot later if no action this pm. Slight heartburn probably from two large glasses of pineapple juice, no change of taste, no nausea, no tiredness - but it’s very early days. The BardPort (portacath) was brilliant, didn’t feel a thing. Lucky so far, I know. Hope you are all ok - am on other threads too - still can’t get long posts through, even typing them into Word first! Lyn xxx

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Hi Lyn,

So glad you are ok. Was thinking of you last night,hoping you would sleep alright. You are lucky to only have the Epi.
Maybe it’s a bit harder to have a cocktail of three at same time. i certainly had a fuzzy head from it all, for 24 hrs.

As the nurse had trouble with my vein i may ask if it would be wise to have a line put in at some point.see what they think.

I’ll have a look at your other posts and catch up more with you there.

I’m feeling fine today, though didn’t sleep very well. my steroid tablets are finished now. no nausea to speak of, just a vague feeling of indigestion sometimes. ginger biscuits seem to do the trick, and ginger ale went down nicely during the night! I have rosy cheeks from the steroids and that,coupled with my fake tan, makes me look really well at the moment!
lol. Actually, i do feel a lot better than the week before my chemo. Feel more relaxed.Though i know it will get harder. I’m enjoying the moment!

love, Ann x

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A friend just popped in, haven’t seen her since just before my surgery, and she said I look less tired than she has seen for years! Bring on those steroids…!!

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Louise, I wanted to add that having done some more internet-based research on Co-Enzyme Q10, the anti brigade cite the fact that the capsules are in soya as the reason it should be avoided by ER+ people. The jury is clearly out on the pros and cons of soya anyway. The Breakthrough website possibly has the most sensibly laid out facts, but the research in any case has been done largely on laboratory rodents, not on women with ER+ cancers. It may be 40-50 years before their ‘Generations’ research has anything definitive to say. For now, it seems sensible not to massively increase the soya content of ones diet in the belief that it will cure anything - that seems to have been promoted by the US soy companies, who have now been denied FDA approval as their evidence is not proven. Equally, there is no sound evidence to rid our diets of it either. So, I’m taking the CoQ10, with its soya coated capsule, also olive leaf extract capsules as another antioxidant, manuka honey, Vit C and multivits and minerals, natural yogurt, plus Sunday roast beef, the odd glass of Baileys, and still nibbling through Creme Eggs… Lyn xx

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How interesting Lyn, thank you for sharing that, it just goes to show that it is not cut and dried!.Re following different threads, if you look at the menu on the top left of the page (after you have opened a thread) the third one down says bookmark this thread. Click on that and then when you open the main thread page, those you have marked will be highlighed in blue, clever eh? That sthe only way I remember which ones I am involved in.

Yes ladies the ironic thing is that you may look really well, everyone keeps saying how fab I look and how my skin is glowing (this even when I feel like a piece of dog p**!!)

Glad the ginger is doing the trick Ann.

Take care

Louise x