Hamley really hoping surgery will be end of March as last chemo 4th March and my daughter gets married 20th April so will push for it although not sure I am going to get what I want ! think if I have MX I don’t need rads and onc didn’t seem to think immediate recon would be a problem just hoping really. When is your last chemo and what sort of timescale after that for surgery. As you say everywhere seems to be a little different.
Cress - hot water bottle for half an hour while you are waiting always works for me n had a problem since first one. Worth a try.
Lolly sorry you have not been well again it is shit isn’t it
Day after Tax and first thing to celebrate is having a poo! Makes a heck of a change from the bag of stone chippings I accumulated after each of the EC chemo sessions. Maybe Tax has the opposite effect and could even reverse the rapid weight gain I have had so far? District Nurse coming to demonstate stabbing myself in tum later and I can then look forward to seizing up in pain I believe? Thank heavens for en-suite bathroom because if I do end up in agony and in bed, at least I do not have far to go! Hope everyone can enjoy their weekend - the sun us shining in West Yorkshire today and it feels positively springlike, which is always something that cheers me up at least. Hugs and love to all x
Wendy, my last chemo is due on the Tuesday after the Easter bank holiday. I’ll probably ask for it to be on the Wednesday though so I can get my bloods done on the Tuesday and hopefully all will be in order. My onc told me I’d be OK for surgery about 3 weeks after that, so late April. I’m dreading it, but at least it’ll be another big step on the way to the end of all this hell. I’ll keep my fingers crossed for you being well by 20th April.
After surgery for me it’s rads. I’m told that rads isn’t so bad, but it’s an hour journey each way to the hospital which is a bummer. I live on the English side of the Welsh border and it’s very frustrating that the hospital I’d go to if I lived less than a mile down the road is about 15 minutes away. I forgot to ask if I’m having 3 or 5 weeks of rads; they hadn’t decided last time I asked.
Lolly, I’m sorry to hear about what’s happened with you. You seem to be on a very rough road, but I’m sure you’ll get there.
There’s blue sky and sunshine here today, so I’m off out for a bit of fresh air while it lasts.
Cressida-Some might say the light is shimmering and golden. To me it’s quivering and watery looking and even though I can see it, it aint getting any closer!
Having a moth mouth slump today. Have given up on tea, and toast. Think it will be a liquid diet for the next few days. A liquid diet used to mean something quite different to me. Now it means soup.
Feeling teary too. Maybe it’s looking at that bald, colourless auld bugger in the mirror.
Shellebelle-For me, Tax has meant never straying too far from the lavvy-and having a supply of moist toilet paper. I will say no more on the subject as some folk will still be working their way up to breakfast.
Lolly-Sounds like you’re having a rotten time but look how you’re coping. Remember how scared we all were at the beginning of this and what we’ve endured! I’m not saying we’re brave but by God have we got stamina!
QD - what sort of scan you having? Good luck with it.
Wendy and Hamley - I warm my arm with a heat pad. I think I may have been a bit dehydrated due to feeling so ill and finding it hard to eat/drink. Will force water down myself next time (and take new drugs).
Hamley - the appointment timings do seem random. I will see my Onc for the first time since before Xmas next week. They are relying on the chemo unit feeding back to them. I think this does happen, as my injections were changed and drugs prescribed without actually seeing Onc. All this breast cancer must be very boring for them. As for Bras - I do mean it - there is an excellent bra shop called Betty and Belle in Manchester that I want to go to. As I am now long term unemployed I can do stuff like go to Manchester to get a good bra or 2 (and a Mx swim Cossy).
ShelleBelle - celebrate the poo!
Maire - I look forward to buying bras in Manchester and then carrying on to Scotland to rediscover a proper liquid diet. The light at the end of the tunnel has not been switched off, it’s just one of those economy bulbs, wait for it to warm up…
oh Lol what a dire time you;re having. hope the hickman line is better.
Hamley - i see my onc on the wed that i have bloods before the friday that i am poisoned. except this next one - becasue I saw him on monday he wont see me till the wed before poison 5. I will however see my bcn next wed before poison 4. She will check my bloods etc. why isnt it all standardised?
Wendy - hope you get your op and are up to the wedding. Fingers crossed!
Shellebelle - why are you having to stab yourself in the stomach? i found that 3 x movicol on day of, and day after tax got things moving nicely. oh and drinking loads and loads and loads. i averaged 7 pints of very weak cordial!
Maire - too true!
Cress - my scan is a “how is mr lumpy doing” scan. hopefully mr lumpy has given up the flippin ghost and is waving a white flag!!! when i had my CT they couldnt use my picc line and they ran my hands under hot water for 10 mins. (it made me want to wee!!!).
QD x
QD, I don’t have to do the injections myself if I don’t want to as the DN will visit to do them for me, but that just means sitting about waiting all afternoon for them to arrive, somewhere between 1-6pm…not that I have plans to go out to any Zumba classes mind! The injections are pre drawn and only take a few seconds to administer so I thought I might be brave and give it a go myself now that I’ve been shown the ropes.
As I’d suffered with constipation with the EC chemo, the Oncologist prescribed Movicol this time, but seems Docetaxel has had the opposite effect and my bowels are flowing freely…literally!
Was given the option about having radiotherapy, as I seem to fall into the ‘inbetween’ section. Although I have had a mastectomy and node clearance, I still have about a 15% chance of local recurrance due to being Stage 3 Grade 3 with lymph/vascular invasion. Oncologist suggested anyone with 20% chance or above of recurrance would be recommended radiotherapy, whereas 10% or less chance, then usually don’t…why did I have to fall into the middle??? Anyway, despite the slight increased risk of long term problems to lungs, bones, heart etc, I don’t think I dare pass up on taking all that’s on offer now. If I didn’t go for it and the cancer returned and had chance to break off and spread, I’d kick myself.
Then it’s onto Tamoxifen with it’s increased risk of bone thinning, blood clots, weight gain, thinning of hair (assuming it grows back) and being generally a fat, grumpy, sweaty old lady - oh the joys of middle age are endless aren’t they?
On that cheery note, I think I need to go find some chocolate now before I chunter on anymore - keep your chins up girls, we’re soldiering on together xxx
Hi, i know it’s a bit late to join in but wondered if it’s ok. I stared chemo in november but 2nd round was delayed as i was nutroprenic sepsis and in hospital for a week so i’m at the same stage now as a lot of you lovely ladies. I had 3 rounds of FEC and have had 1 Tax, next one due 28th. I thought it would get easier as you kind of know what to expect but i was so nervous at the thought of the dreaded tax that my blood pressure, pulse and temp were sky high. I eventually calmed down but get herceptin added next time as well and keep thinking how much more can my body take!!! I’m feeling it really hard to get my head around the fact that before the MX i felt better than i had in years and now i feel about 90, look awful and my middle seems to be spreading at an alarming rate and that’s before the rads, herceptin and tamox. I wonder if i’ll ever feel normal again It helps reading how everyone else is coping and know i’m not alone. Hugs to you all xx
Hi, all, am starting to get a bit stronger - my computer was knocked out by a virus , so I’ve been offline or a couple of days. Probably been good to stay off the computer for a bit and rest, actually.
Hope you’re all doing ok - wil catch up properly tomorrow xxxx
wellcome marge71
We all have ups and downs and it is good that we can voice it on here to those who know how we are feeling as most of us have gone through one thing or another.
lolly x
Welcome, Marge! I’m feeling exactly the same as you - last summer I was doing a lot of long-distance swimming, was really fit and in good shape, and now… I can hardly walk down the road, my weight is rocketing, and there’s years of hideous treatment ahead - I have reacted badly to every single drug I’ve been given, so am not holding out any hopes for a smooth ride with Tamoxifen.
It’s all just so horrible.
Before I start tamoxifen, I’m going t ogo back over all the medical literature, and make absolutely sure that a 5 year year commitment to this is really worthwhile. The doctors assure me that it is, as my oestrogen score is 7/8, but if it really has an adverse effect on my quality of life then I will stop it. If I’m going to be as miserable for the next 5 years as I have been for the last 6 months - why bother? I increasingly think I’d prefer to take my chances.
On chemo, I feel like a lab rat that is being tortured, and I hate the f***ing doctors more than I can say.
Sorry, I’ve had a terrible couple of weeks, and I’m feeling very weak, and very down. Finding it very hard to get motivated to do anything at the moment, and bursting into tears about 5 times a day. I think the one week delay in my chemo has removed all the Dexys from my system - I need some more steroids - at least they keep me cheerful.
Cybele I feel exactly the same as you about Tamoxifen. I have an unopened box sitting by my bedside. My biggest gripe is that there seems to be only one prescription: take for 5 years. Doesn’t matter if you are 22 or 49. Doesn’t seem to matter your tumour stage or whether lymph nodes involved. Seems to be the same dosage for everyone. This just can’t be right. And wait till you read the leaflet that comes with the box-‘damage to the optic nerve’ anyone?
So I am swithering. However at my last chemo session the woman across the bed from me had had her low grade cancer (only one node very slightly affected) return a year and a half after chemo. It’s now in her brain and lungs. Her cancer wasn’t oestregen dependent.
Another woman told them to stuff tamoxifen and she’s hale and hearty more than a decade down the line. Yet another friend has finished her 5 years and is desperate to move onto the next drug because she’s scared stiff of the cancer returning and she feels the need of a safety belt. Her side effects have been ok. My own sister took it for just 2 years because she was young and wanted more kids. She has had no recurrance but has had dcis on the other side which resulted in mastectomy.
I need some serious convincing before I pop any of the buggers into my mouth. Ideally I’d like to take it with some kind of phasing out over 5 years, a bit like a natural menopause. To be frank. I’d rather have a bilateral mastectomy than 5 years of pills.
Welcome Marge, I know what you mean about feeling like an old lady. I am regularly overtaken by grannies now as I shuffle along.
ShelleBelle - it’s a nightmare when they ask you to decide whether to have some thing horrible done to yourself in case something more horrible comes along later, but they can’t give reassuring stats to make it easy. We often get accused of being “brave”, but it would really be brave to say no. Braver then me. I would ask them to do everything to minimise the side effects. They can often do more then they let on.
Lolly - good to see you back. Good luck on Monday, and I look forward to us both being well enough for frothy coffee.
Cybele - it’s come to something when you are desperate to have the drugs that unleash the chemo rats into your stomach. I felt pretty feeble and sorry for myself when my neuts were down, but they did come up and I enjoyed a little chemo holiday before it all kicked off again. I hope you have a few days when you can pretend to be normal. I have just received a “chemotherapy patient experience survey” in the post this morning. Now, I wonder what to say…
I am fed up of my swollen armpit. I have told the BCNs several times, but they are too posh to look at breasts, the chemo nurses have a similar view. Everyone tells me to wait till I see my Onc the week after next. After leaving a message for the BCN telling them clearly that IT HURTS they called at 6pm yesterday to tell me that EVERYONE who looks at breasts is off for half term, so I need to wait until I see my Onc. I give up.
I’m sorry to read that you are having a tough time at the moment. As well as the support you receive here you might find it helpful to give the helpline a call and talk to a member of staff. They are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
…oh and welcome Marge. If you haven’t read through all the posts yet, we’re hoping to have a Christmas party in the summer. If we’ll all arrive on our mobility scooters don’t be fooled, we’ll be packing some serious ammo.
Cressida. I feel your pain! When you come up to Scotland we can tackle it with some serious liquid painkillers!
Hi ya Marge!
Cress - thats shocking. surely there must be a nurse at the hos over half term - they cant all be on holiday!!!
Cybele - glad youve made contact.
I tried to cut my toe nails this morning. They are so soft and feel like they are made of jelly!!! yuk!
Have just finally got round to sending QD a scan of the green/amber/red chemo side effects urgency guide from the Big Red Book of Chemo. it’s very useful.
I remember there were a couple of other people who said they would like a copy - if you could give me your email address, I will send it.
Hi all.
Finally beginning to feel more like a human being…although think it could be a long time before I look like one!!
Welcome Marge - sorry you’re here, but welcome… where in the country are you? … sounds like we’re on the same day… i have my second tax on the 28th and then the last on the 21 March… i seem to be co-ordinating well with school holidays… my kids have three holidays now with me being sick - october when i had mx, christmas and now feb half term…
Nevermind and thank goodness for good friends…
Wendy - Brill news on the shrinkage… really!!!
Cress -sounds like you’re having a tough time and shocking that no one will look at your armpit!!!
Cybele - sfsff…to BC! Just hope that your wit and amazing sense of humour kicks all the SE’s back into touch. You really have had a rough ride…
I spoke to my chemo nurse the other evening who said onc wanted to see me on thursday night and said some cryptic message about he wants to discuss a RADs trial with me… I wasnt meant to be having rads, as they removed all tumour with MX but tbh I’ll throw anything at it. maybe it’s because I’m TN and wont be having hormones so they dont want me to feel left out!
Lolly - hope you’re on the way up and love to everyone else…
xxxxxx
Hi
Marge - welcome to the club! I know exactly how you feel but it’s good to let off steam here and realise you’re not alone.
Lolly - good luck on Monday.
Cressida - no one over half term is absolutelyridiculous!
Cybele - sorry you are having such a hard time but pleased you seem to be getting a little stronger. I would love a copy of your book I will try to send a personal message with my email address - if I can figure out how to!
I really am having trouble coping with all the side effects from TAX - emotionally & physically. Every day there’s seems to be something different Endecd up at A& E Wednesday when my temperature shot up to 38.4 - after 14 hours on a trolley they did let me home with 2 lots of antibiotics - got a throat & chest infections. Tonight we were supposed to be going out for a meal to celebrate my son’s engagement but had to cancel - I don’t feel well enough & was given a dire warning at the hospital not to go out for the next few days. Really can’t think that I will be able to cope with another 2 lots of TAX. The only good thing is the sun is shining and can think of spring coming - maybe tomorrow I will appreciate it! Sorry to be on a downer.
Hilary
It helps reading how everyone else is coping and know i’m not alone. Hugs to you all xx