Hi - I’ve been following this forum for a while and as I have now been given a date for chemo I thought I’d join if you’ll have me!
I was diagnosed in January and have been waiting for what seems like forever to get going. I have had 2 ops, a MX and ANC and am recovering from second one at mo. Like some of you I have had a seroma but seems to be getting better now (must be the exercises!) and they seem to have got rid of it all - hurrah! My first chemo session is 29th May so may actually end up being a jugless june! I’d like to say Hi to Sooz as I am also on the Oncotype Dx trial at Cherrybrook, Exeter so may bump into you at some point. I signed up yesterday and am currently waiting to hear whether I am in group having chemo or not. Apparentely I won’t hear until day or two before chemo starting so am preparing to have it and if I don’t have to it will be a BIG BIG bonus - don’t seem to be having much luck so far though so won’t hold my breath!
All the tips and experiences you are all going through are so helpful and positive that it definately takes away some of the scariness. We are all in this together and hopefully in a years time it will all be behind us. Will post a photo when I can find one and whilst still have hair.
Jane xx
Hi everyone! I’ve been following your posts for a while and as I now have a date through for chemo I thought I would like to join you if you’ll have me.
I was diagnosed in Jan so having been waiting for what seems like FOREVER to get going. I have had 2 ops – a MX and ANC as sentinel nodes had traces in them. I am currently recovering from second one and, like some of you, have had a seroma which needed draining. It’s much better now (must be all those excercises!) I was interested to see some of you are involved in the Oncotype DX trial. I signed up for it yesterday – Sooz, I am at Exeter, Cherrybrook as well so we might bump into each other at some point. I have been told chemo starts 29<sup>th</sup> May so may end up being a jugless june! As I won’t know which group I am in (chemo or not) until a day or two beforehand I am preparing for chemo. It will be a BIG BIG bonus if end up in the other group, but luck hasn’t been too good so far so won’t hold my breath!
Just wanted to say how reassuring it is to see such positive posts and support for each other. You look like a great bunch who this time next year will be looking forward to a C-Free life and back at the friends you’ve made on here who are so inspirational.
Welcome Jane- you are so blessed with the Oncotype opportunity. I’m down to start on 22 May after a long story but no surgery yet. So annoyed-I’ve been waiting months to go to the “Talking Heads” session at Maggie’s on the 21st (that’s their version of Headstrong, about hair loss and headgear etc) and now they’ve given me an appointment with the ONC Nurse for 11:05 when the session starts at 10:00. I’ve decided to go anyhow and to scoot across the car park to ONC in those extra five minutes. Good luck for the 29th!
Caz- speaking of old dogs going to the vets (great image!) I won’t go out for less than a large chocolate truffle. Spoiled, me! Good luck both of us for next week!
Gosh so much has happened to us Moonbeams in last 24 hours
Welome to the new ladies, but obviously sorry you have to be here at all!
My main side effect of the chemo yesterday was actually shock! I thought I was having chemo through a drip via cannula but had it in these syringes which were pushed through by nurse over about an hour and 20 minutes I think. Felt a wee bit sick last night but think more shock and worry then actual real. Had a ginger biscuit. Thanks for the tip about tonic water as until i had some i had been feeling a bit dehydrated.
Feeling tired today as not a good sleeper at the moment!
Am using the difflam and the baby toothbrush and toothpaste in order to stop any ulcers forming. Am going to eat some pineapple later too.
my friend is coming over to Encourage me to inject o myself with the immune booster. If I fail, she will do it for me as she is a school nurse!
Talking of school, quite a few of us seem to work in schools! I do miss work but I have a new albeit temporary job “fighter at kicking cancers butt”
liitlescoot I am thinking of you today especially…
love Rachel x
Rachel- you mean the nurse just sat there with you injecting you continuously for 1hr 20 mins? Wow! You must get to know each other quite well!
These injections you have afterwards- are they intramuscular or subcutaneous?
They are subcutaneous injections Penny. I also have my chemo put through by syringe and as I am a big lady I glad 5 of the E and I think 3 of the C but we were talking all the time she was doing it.
Rara I have been doing mine since the second day and i never thought I would be able to do them but its a piece of cake …
Marie.xxxx
It’s amazing Home and away and now Neighbours have characters DX with cancer
Marie it must be the same down under. Let us know about SE as I’m mainly watching DVD’s at the mo. BTW thanks for the info about injections. I used to be a nurse and if I can stick needles in people’s bums I can stick it in my arm.
Ha penny I’m a nurse and it’s easy to give to others but will have difficulty giving my own I had to do my blood sugars while pregnant and it’s hard to do with your eyes closed and fingers held at arms length lol FEC is through the syringes and docetaxel is drip as far as I’m aware good thing about that is any se at all and they can give it a bit slower your not trying to get someone’s attention as you slide to the floor
welcome jan you must have been going mad at times waiting since jan but its great to have the oncotype test I wish we all could have it and hopefully sometime it will be readily avail to others when you think the cost of 6 lots chemo,nursing staff to give etc oncologist time and for some it might not be necessary it would pay for itself so you all are pioneers stay well moonies I’m away to get some sort of chemo kit together coz I’ve been a bit remiss in getting organised
Lots of love caz xx
Penny you have to give them in your tummy sI find as I have a bit of fat lol it’s painless
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Relieved to hear I don’t have to give it to myself in the bum. That could put my back out !
I have a friend who is a nurse giving me my injections. It is relatively painless but I am not sure I could actually do it myself. I admire those of you who have.
Can I ask what sort of activities people are doing in their lives? I am playing things very safe with regards to immunity at the moment but have a 10 year old daughter to keep happy at weekends and in school holidays. The oncologist was very blase about the whole thing but reading posts on here and hearing stories of being hospitalised worry me a bit. Where is the happy middle ground? What sort of places is it ok to go to? Any advice?
Hi just a quickie to say welcome to the new ‘moonies’. I’ve finally been given a start date of the 20th May, had a final meet with my Onc today, Wig fitting and look around the ward which was all very reassuring. However the nurse tried to take bloods and couldn’t get a vein. She said I had very thin veins and it was probably rehydration and to come back on Monday but now really worried about having FEC by injection. Marie and Rachel how did they do it, was it by a cannula in the arm or hand? It’s the first time I’ve had a problem but as with everything these days I’m now worrying!
Warm welcome to new moonbeams- sorry you’re here but it really helps to hear what/how we are all doing. Jan34- I was also diagnosed early in Jan and it has seemed an age to get to this point but I do think a lot of us feel better once it gets going. For those of you concerned about injections- I had FEC and this was put in by syringes rather than a drip (either cannula or PICC) and the nurse is there all the time and can slow it down as administered- the E (red one) can sting a bit and one of them gives a funny sensation in nose and/or in bum!
On hair- I went out briefly this afternoon really worried about meeting anyone with my new shorn hair. Actually wore dark glasses on a cloudy afternoon!! But will feel better for next time. Best thing for me (this year!) my fab son flew back from US yesterday and brought me a lovely silk bandanna from a charity they have there which is sent as a gift to cancer patients with lots of handwritten messages of support- I think it is called Goodwishes and he thinks they might send to UK too.
Have a gentle weekend (for those who have started- the rest might want a wilder one!)
What I meant to convey was that the syringe method is a good thing not a worrying one- a person sitting by you is in control.
Aly, if you have tiny veins, ask if they use warm oat pads in your unit. If they don’t maybe you could bring your own. When I had my first chemo they brought out a nice toasty oat pad - the ones you use when you have sore muscles (opposite of ice bag!) - and wrapped my hand and lower arm in it while they got the drip and drugs ready. After about ten minutes every single vein was huge and fat and squishy, so the nurse had good choices. Then she put it higher up the forearm to keep the veins open so that the drugs could flow in easily. You can also get electrically heated pads, so if your unit doesn’t have a microwave for an oat bag they may let you use a plug-in version.
Have the other Moonbeams had this?
Jane x
Barbara-Thanks for that! I am getting used to the idea. Just as well because I won’t have the session with the ONC nurses until the eve of the first treatment! My questions thanks to all of you ladies’ helpful posts now covers most of one side of A4!
Jane-I’ve never used an oat pack, sounds great-we don’t have a microwave I guess that’s why. I wonder if a hot water bottle might be similar? I could secret one away in my chemo bag and whip it out if they don’t do the oat bags. Something I’ll add to my growing list of questions.
Aly have a lovely chilled weekend! I’m sure nerves don’t help with veins.
Aly I had the red stuff put in by syringe, I think that is standard practice. The nurse controls the speed and it goes through a cannula in the hand in my case. I also was told I have tiny veins, the first attempt at inserting a cannula was a disaster and a senior nurse came and did it on second attempt. My hand is now one big bruise! Concerned this may be an ongoing problem…
Anyway nothing to worry about - the syringes mean you get good nurse care through the majority of your treatment. At one point I felt a slight burning sensation and she stopped, checked all was going through ok and then did it more slowly after.
Hot water bottle (well wrapped to avoid burns!) would be fine too I’m sure. You just need warmth. One other thing I was told, if you take a cold drink in with you, DON’T hold it in the hand they’re going to look for veins in. The cold will cause the veins to shrink down.
Jane x