Busy bee today feeling more like myself! Did a social walk with my puppy clients and friends today then headed up to Epsom Downs for the Race for Life to cheer on Harriet who was racing with my name on her back. Gave her some flowers and then burst into tears. Couldn’t be prouder if she was my own daughter!! Might do the RFL myself next year that’ll give me time to get fit. And definitely up for a Warren Walk!!
Apart from that back to watch the F1 and then the footie!! We can but hope lol! Enjoy the rest of the day bunnies.
Sarabee xxx
Lisa, our posts crossed earlier - hope the info I gave about my TAX experience was useful. I haven’t managed to exercise as too exhausted, but have seen on other threads that some people recommend a 30 min walk or something each day.
Pixie - you certainly are a whirlwind! It makes me tired just hearing all the things you get up to - but good for you. You said the twins were the same - I think it is genetic actually… I fall into the ‘chill out’ category like Southpool (again…!). I can sit and daydream for hours given the chance and don’t feel a bit guilty. I know it’s healthier to be a fidget - research has shown that fidgets tend to be naturally slimmer and fitter than sloths like me but I really don’t think I can change my nature now. I worked hard for many years as needs must, but I enjoy my lazy life now just as you enjoy your busy one!
Anyway, I’m back from John Lewis, tired out, mission accomplished. Used my vouchers to get two new mugs and also a shiny new ice cream scoop (as vanilla ice cream was one of the few things that didn’t taste foul at beginning of cycle). I find it impossible to walk out of JL kitchen department without some gadget or other - same thing with Lakeland. Have to rest up now before going out to man the ticket table at a friend’s open garden day (she’s a genetic whirlwind too!). Hope the weather holds - it’s bright and breezy at the moment but we’ve had heavy showers as well.
Thank you bunnies. It is so good to know that whatever we are going through we are not alone. I had been feeling so worried about the type of pain I was having, thinking I had perhaps started suffering SEs from cocodamol. When I read Sara’s post, then Lisa’s I was in floods of tears of relief. I don’t remember ever feeling so lousy before as I do right now. Xx
Margie - I don’t think it’s possible to explain just how weird and lousy you feel with TAX to anyone who hasn’t been through it. My days 4/5 last weekend were absolutely awful and I thought they would never end. I think we just have to hunker down, take the max painkillers allowed and remember that this powerful drug is zapping all our cancer cells to kingdom come. I’m sure you’ll start to feel better in a day or two - more manageable anyway.
Afternoon all!
Haven’t posted for a while. Mixture of sloth and feeling rather low, I think. Maybe one feeds the other and vice versatile, who knows.
So, need to add my input on recent topics. First, yes, I was at a girls school and preferred hockey to netball. Should our findings be forwarded to the BMJ?!?
Books: have googled some titles so thanks for the recommendations. I find it very hard to read at the moment which comes hard as I usually read a lot and also work in publishing. Big pile of abandoned books by my bed but am at last managing to read The King’s Speech by Mark Logue and enjoying it.
Interesting fact. Errrrr… Struggling here. I was on BBC Breakfast News once and I have had a book published. Seems rather less interesting than some though! Must see what else I can dredge up.
I have my first TAX on Friday and very glad to read experiences of those further down the road. We’ll see what evolves
Hello Ladies - it has been a long while since I last posted but if you dont mind I would like to just say hello to ladies in the know. I am on my 4th chemo and 2 more to go followed by radiotherapy. Feeling a bit battered just now but not been as bad as others so lucky. Feeling low and lonely. I am out in Spain and I have no idea what medication I am on apart from Chemo but what it consists of I do not know - is this normal? Part of it is the language issue but also the medical profession although it is extremely good and throw everything at you do not give full details. Supoose I just wanted to touch base cause I do feel a bit down just now but no doubt this is all part of it. Usually I am a very positive person but not tonight. I am sure tomorrow will be better. Take care everyone.
Hi hope everyone is well, Margetee the way you describe that feeling you get soundS just like mine, little stabbing pains its really horrible, and like Sara I start the day feeling not too bad, then it all goes downhill, I am quite a fit person usually, but the tax is makeing me feel so tired, I am in bed by 9 930, and also don’t really feel like eating, so just making sure I get plenty of fruit, and fresh veg juices which I make myself.
Campo glad you have come back and so sorry you are feeling lonely, it must be hard dealing with bc and living so far away, but we are all here to listen and support you, even if you just want to have a good moan or share your fears , anything. Some days this forum has been my lifeline, and I am sending you a massive virtual HUG.
As for interesting facts, I flew worldwide for a major airline for 27 years, did many wild and interesting things, went up Machu Picchu , Appeared on a Brazilian Generation game show, a bit worse for wear, partied with a few famous bands that flew with us. So quite a varied life, only wish I could remember it all LOL. Hope everyone has a good night and no se. Love to all Elainexxxx
Forgot to add days four five and six were the worse for me, felt so very low,Sara is right just have to accept it and go with the flow, at least next time I will know what to expectxxx
Poor Myxi-taxi bunnies, it sounds so miserable, a very different experience than FEC. I can’t imagine that kind of fatigue and it must be so hard if you had previously been an active person.
Campo, good to see you back in the warren - though the doggy picture is a bit scary to us bunnies why don’t you consider asking your doctors to write down the name of the drugs you are having? I know it must be difficult but the drugs have universal names so you will be able to look them up on McMillan or Cancer Research. This forum is an absolutel lifeline for many of us, especially when we have our rough days and we are never all down at the same time, there’s usally a few bunnies feeling perky. So its lovely to have you here again, there’s pleant of room.
I must admit, the loss of appetite sounds appealing. Since starting chemo I am permanently hungry and have put at least half a stone on and still 2 chemos to go. I hear herceptin and the hormone tablets lead to weight gain so at the end of this i shall be cancer free but clinically obese!
I would like to strongly recommend a book to the warren:
The Cancer Suvivor’s Companion by Dr Frances Goodhart and Lucy Atkins.
It is almost like a workbook and deals with all the emotional stuff we are facing during and after our treatment. I cannot recommend it highly enough and wish it was given to everyone who has to face cancer diagnosis, treatment and living with the after-math. It is available on Amazon.
Right, need to get lesson plans and resources readu for a full day teaching tomorrow ‘Change Management’ for 6 hours. Some of the stuff I teach has a special poignancy for me just now… dealing with the changes i am facing since diagnosis.
Hope everyone is okay and if you are not, hunker down, keep cosy and warm and just know it will pass in a few days or so and your whiskers will perk up again.
To those on TAX - I’ve had 4 cycles and the worst thing I find is the terrible taste in my mouth. Nothing tastes as it should and by the time my taste buds get back to normal, it’s time for TAX again! I also get stabbibg pains but I also get a feeling in my legs like something is gnawing them from the inside out. Horrible drug but if it keeps me in remission for a reasonable amount of time it will have been worth it.
I went to a mixed comprehensive secondary school. Hated hockey. i was one of those wee wimps who just about ran the other way when someone was coming towards me wielding a hockey stick.
Have had a busy weekend but am still feeling good as I am into week 3 now beforte TAX no 5 on Friday this week.
Interesting/not so interesting Fact: I write poems in rhyming Glasgow slang and made them into a book and sold them for charity.
Re: a link between schools we attended/hockey players. What about a link between occupations? I have been a teacher and am now a nurse.
Hope you have all had a good weekend despite the SEs.
Christine xxx
Dear Ladies Thank you so much for your kind words Libby12 & persteringpixie12. It really was a huge tonic and brought a tear to my eye to feel such support from you bunnies inlcuding the virtual hug. I was lying in bed thinking why I had not asked the question as to what medication I am on - realised of course concerntrating on answering questions and concentrating on what the Onco is saying plus I have seen my original Onco twice and two different Oncos on other occassions. Must admit I read previous postings after I posted mine and realise how lucky I have been. So I apologise for my self pitying posting but I guess it must hit us all at sometime. Sorry about the doggy picture - forgot re dogs & bunnies - glad to say that “Amber” would not harm bunnies. Promisse I will leave her outside the warren when I visit plus she is way to big to get into the entrance. Just want to say a big thank you again to all Bunnies for support and comfort - sad we are all in this position but nice to know you are there for each other.
I am not good today, feeling very weepy and I really don’t know why. I am at work today and find myself sitting at my desk wiping my eyes every now and then where I just seem to well up and set a few tears free. I hope that it stops soon because I am going out to dinner tonight. Can’t be crying into my meal now, can I!
Have appointment with consultant tomorrow evening so that he can check on my portacath wound again before chemo on Friday. It won’t heal properly and chemo nurse sent me to see him last week as she was worried it was infected. It wasn’t but I don’t think he was happy either. I am really worried that he will say I have to delay…fingers crossed.
Hi Bunnies,
Natalie, I am so sorry you are tearful, some days it just seems that the hill is too blooming steep. Tears are just a release valve so you cry away little bunny. Portacaths, insertions and removals are becoming the bane of my life, I don’t think they are as straightforward as we are led to belive. You saw the state of my chest where they had inserted and removed the first one. That went in on 24th April and it has still not healed. The phlebitis in my jugular is horrid and becasue blood cannot flow through it, I am getting breathless at the slightest exertion.
The second one is more towards my shoulder and through my arterial vein. I am very bruised and aching still and should be having chemo through it on wednesday. If your port is not okay, providing it isn’t infected, you can have chemo but it would be a cannula again. Defies the reason for having one in the first place doesn’t it? The delaing with cancer and chemo is hard enough without portacath fiascos.
I am also worried chemo may be cancelled as the inside of my nose has split. yes i know, myxi pixie has developed another wierd SE. Of all the drugs, the one I struggle with most is the cyclophosphamide and have to have it in a bag over 2 hours as it effects my sinuses so badly. Well over the last couple of days, it has felt like i had a cold sore inside my nose (not that I have ever had a cold sore) and today it has split into an open fissure inside my nose and gosh is it sore! The glands in my neck are swollen as well. Have just finished teaching so am now home again, OH is out until late tonight so I intend to eat chocolate and pack up some Happy bags.
Don’t know about other bunnies, but I am fed up of cancer now… or to be more frank, i am fed up of chemofriggingtherapy and the bloody sodding awful side effects. Ahem, sorry bunnies but me portacath one wound is oozing, me nose is so sore and tomorrow i am teaching in the morning and then off for bloods and what with 2 general anaesthetics and ops in a week, the swollen glands and me nose, I am not hopeful. Wish they would give me one of the booster injections but they don’t seem to be on offer in my area.
Oh well, mother and auntie here tomorrow so fully expecting a poultice shoved up me nose.
Right, where’s that bar of Lindt?
Pixie
xxxx
Campo - no need to apologise - it must be so difficult dealing with this illness and understanding what is going on when it’s not being dealt with in your first language. We all have our ups and downs.
Natalie, sorry to hear you’re feeling down. There must be something in the air today. because despite this supposedly being my ‘good week’, and the fact that it’s a lovely sunny day, and that Wimbledon is on TV, I have stayed in bed all day dozing and reading. Have only just got up (with a headache), and feel generally out of sorts. I have also committed to going out tonight and rather wish I hadn’t… but perhaps I’ll be OK once I get there.
Hope everyone’s OK and that the dreaded SEs are subsiding.
Pixie, Natalie & Sara sending virtual hugs your way. Sometimes it is just all very crap, crying, staying in bed & swearing seem to help us cope and doing all 3 together can be very therapeutic!
Campo dealing with is a foreign land must be twice as hard & I really feel for you. This Warren is fantastic & has kept me sane over the past 9 weeks. I really think I would have gone into meltdown without it.
I am having a good day. Am on the train back from work and have remembered today why I love my job. Despite the 1.5hr journey each way I feel much better in the office with my team rather than 2nd guessing stuff on the end of a phone line. I had lunch at Jamie Olivers with a friend I haven’t seen since diagnosis who didn’t say how fab my wig is & don’t I look marvelous but said I looked lovely which was so much better!
I am now going to see Dance to the Music with the strictly come dancing band & dancers which I am very excited about. Another fact about me is I am a SCD addict & was learning to dance ballroom & Argentine Tango before bc. I am going to take AT lessons again as soon as bloody treatment is finished.
Keeping everything crossed that myxi bunnies feel better soon.
am also a SCD addict… did ballroom danicng as a child and got medals - would love to take it up again but OH just can’t follow the beat, never tried Argentine Tango, would love to flick me legs about like Flavia!
So Southpool, which professional would you choose for a partner? For me, it would have to be Robin as he seems such good fun (Artem would get me all in a dither as he is all Russian and gorgeous and very intense, I would want to wallop Brendan, Vincent is too short, Ian is too tall, I loathe James arrogance, Anton would be nice… he is very elegant…)
Any other bunnies into SCD???
Envious of you going to see Dance to the Music… hope you have a wonderful evening
Hi Everyone
I really thought i was being mardy when i got up yesterday and felt like i was dying the pains in my legs are horrible and then caught up with all the threads on here and realized its the TAX how can something make you feel so bad i couldnt even be bothered to turn laptop on yesterday i wish i had as i now know we are all going through the same
Natalie big hug sorry you feel so weepy
Sara, margietee, and Elaine sorry you suffering with Tax i read your se and was glad as i thought surely something cant make you feel so ill what is the best pain killer to take the pain away i have tried to manage without any but dont think i can anymore it is getting me down
I went to a mixed school i think i lead quite a boring life to you lot i really am going to look at doing something exciting when i finished this treatment i cant wait to meet you lot im a supervisor in a restaurant pub so i know how to party
Speak soon
Tracy xxx
Hello to all the myxi-taxi bunnies! Virtual hugs to all the ones feeling tearful and down, it strikes when you least expect it and can be very upsetting. I know I’ve had my fair share of it since this all started!! Hunker down in the back and look after those ears! Hello to all our new bunnies! We seem to be attracting a good crowd girls - get the bunting out…!!!
Hola to Campo too! Must be difficult dealing with stuff in a foreign language - I tend to not ask much and leave it up to my OH to read up on everything so don’t feel bad if you don’t know much about treatments etc. TBH I find it easier NOT to know before it happens otherwise I’d never have got this far! LOL!!!
Someone mentioned having problems with their nose? I’ve had it since I started chemo. Feels like I’m stuffed up and then a nice bloody bogey appears when I blow my nose. Hasn’t changed much so am expecting it for the duration. Talking of which I get a really strange sensation in my mouth and lips sometimes as if my mouth has swollen up and my head feels like a balloon. Almost like an allergic reaction. Comes and goes but can be a bit frightening if I’m just waking up and haven’t come too yet.
Scars and wounds - well you know that mine took AGES to heal. Now nicely scabbed and healed but I get the odd twinge in my mx boob and the nipple still itches a lot for no reason. Feeling in the left underarm is there but still feels very bruised and not normal. I also feel like I’m waking up with a big tight bandage round my chest most mornings. The boobs are now nice and perky and tight but it does feel a bit odd after a long time of having jiggly big boobs.
SCD - I have a bronze medal in the Cha-Cha-Cha… and intermediate in Latin Dance. Amazingly I can’t dance these days to save my life lol!! And no salacious interesting facts either I’m afraid, so Tracy and I can sit in the boring but lovely corner! Although I did once get dead drunk in Leeds with a friend while hanging round with the band Go West (from the 80s)… ended up lambadaaing with one of the guys to “Who let the dogs out”… don’t ask… lol!!! Oops, sorry back to dancing… I’d like to dance with Anton or Brendan. Anton because he’d be nice to me stepping on his toes and Brendan… well he’s just a naughty boy… lol!!
Went for my wig appointment today only to discover that the wig man wasn’t at the hospital where he normally sees me and I should have been somewhere else which he didn’t mention before. Am trying again on Wednesday but really am wondering if this is going to be worth it! I’d better look good and feel better lol!!!
Finally, am looking forward to hearing more about the twins arrival from Pixie. There really is a sit com in this you know…! And Natalie, put the 50 shades book down… I don’t think it’s doing you any good. Try and nice Mills and Boon dear, as my mother would say! Something a little less raunchy! Don’t want you getting overwrought before your next session. I haven’t read the said “naughty” book yet, just finished The Other Boleyn Girl and straight into the next chapter in the series. Historical fiction is my big passion.
Okay bunnies hopping off now to have some dinner.
Hugs to all from me,
Sarabee xxx
Sorry to those of you who are feeling down at the moment. Emotions seem to fluctuate with this horrible disease and its even more horrible treatment.
I love SCD. Have never been able to dance and my favourite partner would be Anton. I think it’s shocking that he always gets partners who will never be able to win anything but he always manages to turn the dances into really good acts.
Christine xxx
why don’t you consider asking your doctors to write down the name of the drugs you are having? I know it must be difficult but the drugs have universal names so you will be able to look them up on McMillan or Cancer Research. This forum is an absolutel lifeline for many of us, especially when we have our rough days and we are never all down at the same time, there’s usally a few bunnies feeling perky. So its lovely to have you here again, there’s pleant of room.