I’m feeling okay but rather disappointed in my ONC, I had my rads planning session including the tattoos (very very very tiny rose and dragon the lady told me )which went fine until they gave me a start date…23rd sept. I was annoyed to say the least as my ONC has been telling me 2nd or 9th isn’t a problem for over a month but he didn’t actually book anything! Grrrrr, having pushed I’ve now got the 16th but that means I will be starting work 6 days after my final session which the ONC said wasn’t acceptable due to my 60 mile round trip but he didn’t book the sessions he had told me he was doing. On the up side I do now have 2.5 weeks of no appointments or treatments but this could lead to mischief I guess!
Angie, if you are going to be in Inverness for 3 weeks does that mean you will have McDonalds every day as a treat? They do have wifi don’t they? Good luck with it all and enjoy the shopping!
My eyelashes and eyebrows are still falling out, does anyone else have this? My hair is growing back a little but some of the longer bits from a couple of weeks ago have fallen out again…Angie, I was also told I’d have hair by Xmas but I was told it would be short and ‘usable’ so I took that to mean I won’t need hat or wig by then.
Judy, good luck with your op. I had the expander implant at the same time and I was up the same afternoon to go to the toilet which surprised even the consultant, the next morning I showered no problem but I was in hospital for 5 days until the drains were removed,that was private though so they do tend to keep you in longer but as you have your own room it’s not so bad.
Hope you all have a good day, I’m still sitting at the breakfast table with PJ’s on so today could be a nothing day if I don’t get a move on!
Kate
X
Morning Ladies
I have had my first rads this morning whole thing took about 15 mins including setting up of machine etc., it took me an hour to get there in rush hour traffic though and 25 minutes to get home !
Angie - three weeks away from home will be tough but I’m sure you will make friends with others in the same position as you whilst you are in Inverness
Judy - good luck for Tuesday, hopefully you will be out the same day or the next day at the latest .
I have started using the fast shampoo every day, we’ll see if it works :). I’ll stop using it once my hair is a couple of inches long. Like a few others I’m fed up of not having a normal head of hair. I’ve got plenty of fluffy white hair at the moment but I’m not sure if this will stay. My eyebrows and eyelashes are also growing again and they are coming through dark …no other hair growth coming so still not having to shave legs, etc
Sorry to hear your sad news Philomena, can they not move your appointments around to include a weekend so you can get to the family for a couple of days? The hospital I’m going to do Saturdays and can do early and late on weekdays so it may be worth asking.
Thinking of you and your family at this very sad time
Kate
X
Philomena I’m so sorry to hear your news. That’s so sad. I hope you can get something sorted with your rads appointments. Big hugs to you and your family xx
First let me say how sorry I was to read your sad news Philomena. Your sister and the family must be devastated. Hopefully you’ll get to see her soon.
Best of luck for Tuesday, Judy. A few days enforced rest and you’ll be up, fighting fit!
Don’t envy your three week enforced holiday, Angie. Hope you find plenty to keep you occupied or you could be tearing your hair out by the end of three…oops!
Well Kim, you were lucky this morning. My machine (no 12) was running 45 mins late so my 11.36 appt turned into a 12.15 appt. Waited around for about an hour before being seen yesterday too. Hope it improves. :catfrustrated:Odd selection of magazines as well.
Kate, that’s an awful long wait to get started on rads especially when you are all geared up to getting it over and done with. Hope you put your 2.5 weeks of freedom to good use.
As for hair, I still have fine covering of white fluff, half a dozen eyelashes on each side and short, spiky, growing straight up and out eyebrows. Not a good look!
Strange this talk of Big Macs. I’ve had more of them in the past three months than I’ve had in my entire life. Even when the tastebuds disappeared I could still taste that lovely yellow sauce they put on the iceberg lettuce and, yes, I eat the gerkin. I find it adds a certain piquancy to the best fast food known to man.
Philomena I’m so sorry to hear your sad news.I hope you can sort something out to be with your family. Look after yourself too. You’re right this disease is s***, sometimes there seems no end to the devastation it causes. Sending much love.
Angie did you say you start rads on Monday? me too! 17 days now- it’s going up. Chemo tomorrow- 2nd dose of CMF. Side effects haven’t been so many and varied this time, but overwhelming fatigue. Have been reading but not posting, as keep getting logged out and just hadn’t got energy to find password ( which I can never remember). I have been mostly sleeping and lying about. No swimming, walking exercise of any description going on here. Also putting on weight. I lost 10lbs on epirubicin because basically I couldn’t eat anything- now eating everything that doesn’t move out of the way and am nearly back where I started.
I was so proud of my 15 yr old daughter today. She OFFERED to walk to the surgery, fetch my sick note for work, go to tescos and buy stuff for tea because i was feeling so tired. So proud of her kindness.
Hope everyone else is doing ok. Good luck Judy for Tuesday, I only had a WLE but honestly the surgery was the easy part, compared to chemo.
Philomena - Im so sorry to hear about your brother-in-law. All our thoughts and prayers are with you and your family. Stay strong sweetie and remember the more links missing down here the longer the chain gets in Heaven. Keep looking forward to those gerkins next year, and when we all meet, I’ll share one with you. Love and hugs from Sandy and Geoff. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Rads 2 today -quick and uneventful, which is good for me. I was told not to use deoderant on that side at all during the treatment period as it contains metal substances which could interfere with the radiation. I am allowed to use babywipes to freshen up though.
I started back on Tamoxifen yesterday as well, though I’m not as concerned about that as I took it prior to my surgery for a few weeks and was fine (famous last words!)
Katie it must be so frustrating that they’ve messed up your rads appointments. Enjoy your medication free time for a while.
Philomena I know it must be hard not being able to travel to the funeral, but as you say everyone understands and it’s more important for you and your family that you look after yourself and get well. xx
Mel I hope you get some energy back soon. I’m glad you managed to sort out the password problems.
I hold my hands up to liking gherkins too, especially on a cheesburger.
Sleep tight ladies xx
Rozz - I depart the Chemo train on Tues but i am absolutely petrified knowing what lies in wait a few days later. I already feel like a huge blob and very weak. It’s acutally getting scary but I have a heart scan on the 9th so that should pick up anything sinister going on. Judy I know you feel the same and like me you still have surgery to go. Best wishes for you on Tues. All we can do is look forward to healthier days. xxx
On the upside my auntie Margret Dickinson is signing books for our chemo unit as a thank you for me so i’m quiet excited too. That and a hardback copy for my lovely oncologist who’s been fantastic with all my moaning.
Philomena - How are you? I am being treated at Boston Hospital but as there are currently no BC surgeons there and they don’t do Radiotherapy so both are being done at Lincoln which is an hour from home. I have no dates for either yet.
Mel A - Im glad your Rads are going well and the Tamoxifen is SE free.
Hope all our other lovely Angels have a good and sunny weekend. Sandy xxxx
Can anyone explain to me why some days when I log on I’m signed in to this site while on other days I have to search for my password. Also, I used to like looking at the latest posts board and now I can’t find it!
I started taking Anastrazole (Arimidex) On Thursday 22 Aug - exactly three weeks after my final chemo. Waited for side effects but so far, touch wood, nothing unusual seems to have happened. Didn’t feel sick with chemo so unlikely to feel sick with these. Don’t do headaches anyway. If I am going to feel depressed I think suffering breast cancer is a more likely cause than some hormone suppressant and as for the thinning hair I may suffer from!!!
On the hair front. last night I did something rash. I really didn’t like the sparse white bum fluff so I shaved it off! Let’s see what happens now.
Went for zapping number three yesterday afternoon. Machine 12 was running 50 minutes late so settled down with a copy of Gardeners World to pass the time when almost immediately I was called from the other side of the waiting room and got to be zapped on machine 11. In and out in twenty minutes! Please let this happen again.
had 2 hours of sleep and up at stupid o’clock. Had CMF on Friday- guess it’s the steroids or the enormous quantity of diet coke I’ve drunk yesterday. Had to tell doctor about arm pain when I went for chemo- suspected blood clot- couldn’t use PICC line , had to have canula. well peed off. Because I had to wait for 3 hrs to be seen the ultrasound dept had closed so have had to have anti clotting injections just in case( which OH is relishing giving just a bit too much) and have to go back tomorrow to sit on ward and wait for ultrasound and verdict at 9 am, followed by rads at 1.30pm- there won’t be time to go home so another whole day in hospital- can’t wait. I really struggled not to cry when they told me and am now in weeping mode at home.
While I’m wingeing ,really fed up with waiting times in chemo ward. not nurses fault, they are rushing round like blue arsed flies trying to get people through, just not enough chairs or staff. They had 91 patients on Friday and I was the last but one to go in. They should close at 5 but they have to do everyone obviously so there till 7 every night. when I left at6.45 there were still 3 patients being dosed. no wonder they’re short staffed!!! The nurse who did me started at 7.30 that morning- no overtime of course! winge over:smileysad:
Moira - my chicken fluff seems to be dropping out again now I’m on 2nd CMF cycle, in patches this time, and one eyebrow which is bizarre. I think I may follow you and just shave it off again, It’s depressing looking for new bald patches! Also I have been logged out everyy time I come on which is a real pain, and although I’ve ticked the box the system has not saved my user name or password, and I have to look for it every time.
This has turned into a right moany epic so on the bright side:
Sandy - last one on Tuesday:smileyvery-happy: good luck!! I’ll be thinking of you and we’ll all be cheering you and Judy on through your surgery.
Debra - are we the only 2 on the train now?- I think we are. How you doing girl?
oh and i finally got a reason why i’m having rads in the middle of chemo ( from nurse) Research has shown that CMF enhances the effects of rads so they get better results in the middle than they do at the end. So there’s a reason for the crap 4 weeks I’m about to have!!
Hi everyone
Hope you all had a good weekend.
sandy - good luck with the last chemo
Philomena - perpetual help is very appropriate
Judy - Will be thinking about you on Tuesday, fingers crossed you’ll be home the same day.
Moira - you are so brave shaving off the fluff
Angie - hope your time in Inverness passes quickly, I’m sure you will meet others in the same position as you.
Pauli ne. - having my 3rd rads to orris and So far I’ve been lucky with the appointments being on time and no problem getting a parking g spot, I just hope it continues.
I have started my tamoxifen today so will keep you posted if the hot flushes, night sweats get any worse etc
Hi everyone
I’m glad the funeral went well Philomena. Lighting a candle was a lovely idea.
Good luck tomorrow Sandy and Judy xx
Moira you’re brave to shave off the fluff again. Hopefully it should grow back nicer. I left mine and it’s just starting to settle down a bit and not stick up so much. Hopefully I will be able to ditch the headwear in 2 or 3 weeks the rate it’s growing. I can’t wait.
It was my mum’s 60th birthday party on Saturday and I can’t tell you how much I enjoyed letting my very sparse hair down! I even managed to dance for a bit. I’ve got nowhere near your energy levels Carol. Well done you
Judy I’m at the same stage as Angie. My legs are getting better, though still weak and there is more stiffness than pain now.
Angie I’m glad Inverness is nice and you have someone there to look after you. Think of it as a holiday with a patch of sunburn you forgot to put the cream on
Mel I’m sorry you’ve got it rough. I hope things get better for you soon.
Sorry if I’ve missed anyone. My poor brain can only retain so much info. Xx
It’s rather late, I should be tucked up in bed but thought I should just wish Judy all the best for tomorrow. Hope it all goes as well as these things can. x
Hope you’re keeping your spirits up Philomena. Grandchildren certainly help.
How’s it going with the chemo, rads and poorly arm, Mel? At least one too many things to deal with there!
Glad to hear your rads session went well Angie. Soon be home for the weekend.
See you on the platform tomorrow, Sandie. How long till your op?
You’ll all be pleased to know that I now have stubble. Very, very short stubble but at least its got a bit of body to it and I’ll swear some of it is coming in dark rather than white. I’ve noticed when I go for rads at St James that a lot of the women there are quite happy to walk around with no hair or bovver boy haircuts. I still have to apply the full make-up and wig before setting foot out of the house. Like you Mel, I seem to be quite a few hairs short on one eyebrow and they seem to have thinned out even more over the past few days.
It’s just over a month since my last chemo and my energy levels do seem to be getting better. I’m managing a 30 min walk each morning and today after rads there was a queue for the lift so walked up about 60 stairs to get to ground level. For me, that was equivalent to 60 laps of the pool, Caz! But I’m afraid the healthy eating is still in the planning stages. Mind, the other night I opted for a Nando’s rather than a McDonalds so I must have saved at least 50 calories there. Trouble is that food tastes so good now that the tastebuds are here to stay. I just want to eat anything and everything.
One problem I have had over the past few nights is really vivid dreams, not quite nightmares but enough to make me feel anxious. Has anyone else had this? I don’t know whether to blame the rads, the anastrozole or just the fact that I’m sleeping properly for the first time in months and I’ve a lot of dreaming to catch up on.
Hi Lynn
I was told not to use aqueous cream within an hour before rads as it will cause more burning. They told me to use it twice a day, but I’m trying to put it on 3 times a day to keep the skin well moisturised.
Moira, my eyebrows have also thinned more this last week or so. The effects of this chemo are very strange. I’ve noticed I’m not hearing very well at the moment, especially when there is background noise. I asked my GP to check my ears yesterday, thinking they may just need syringing. However the dr said they are clean and to mention it to the oncologist in case it is a side effect of chemo. Has anyone else noticed this?
Hope the op has gone well Judy and that you are up and around already.
Welcome to the platform Sandy, hope you did a good happy dance!
I have just spoken to the gp surgery and am getting aqueous cream on prescription and he’s put it onto repeat so I can have as much as I want for free. Might be worth asking your own gp’s for some rather than having to buy it. My rads still doesn’t start til 16th, got a message from the ONC on friday saying ‘they had brought it forward as much as they could’…he didn’t do anything to bring it forward I did! Good job I wasn’t here to talk to him as I’m sure I wouldn’t have been polite about his incompetence.
Angie - how is the enforced holiday, done much of your knitting yet or are you still getting to grips with your new location? Hope there is a group of you and you can keep each other company and happy during the 3 weeks.
I have been taking Tamoxifen for a month now and the only SE I have is the heat, hot flushes day and night that seem to almost blend together and just make me hot. The sage tea isn’t doing much and having just spoken to the gp he doesn’t have any clue about anything to reduce/stop them - he even said that he didn’t know hot flushes was a side effect of Tamoxifen! I don’t think I’ll be going there for any SE solutions without knowing the drugs I need!
I have just removed my dark nail varnish from my fingers and my nails still look okay, there is one that looks like it has a bruise that is growing up the nail but its about half way up and the nail looks okay behind it. I’m hoping this means I’ll keep all of them. I’ve seen a couple of you have lost one or two, hopefully you have kept the rest and they are now growing normally again.
My eyebrows are still fading away, my eyelashes have gone and my hair is about 2mm long and doesn’t seem to be falling out anymore - but its white in most places and dark in a few areas. There is more of it so hopefully this lot will stay and actually start growing properly…I’m still hopeful that I’ll have a good head of hair by the time I return to work in mid-Oct but it doesn’t seem to be growing very quickly! Before all this I had about an inch cut off every 6 weeks, if it started to grow that quick now I’ll have an inch by mid oct so I’d be okay to go without my hat/wig but not sure its growing that fast!
Hope you all have a good day and that the SE’s are manageable
)which went fine until they gave me a start date…23rd sept. I was annoyed to say the least as my ONC has been telling me 2nd or 9th isn’t a problem for over a month but he didn’t actually book anything! Grrrrr, having pushed I’ve now got the 16th but that means I will be starting work 6 days after my final session which the ONC said wasn’t acceptable due to my 60 mile round trip but he didn’t book the sessions he had told me he was doing. On the up side I do now have 2.5 weeks of no appointments or treatments but this could lead to mischief I guess! 