me again. Doggirl, I didnt have any scans this time, although I did have one node involved whereas last time I had the full works (a bigger tumour, more nodes involved). I am sure that there will be some sort of criteria that they use to decide whether scans take place. someone may know it? Be interested in what your onc says about 6 as opposed to 4. I had 8 first time.
Re. neut count- do they use different ways of counting them? Mine were around 2.7 post op but yesterday the nurse said they were 14. That cant be right can it? My red was 10. Squeaky- I was told that patients have water-skied and ridden horses with their picc (incase you have forgotten I am very nervous about mine…)! Josie- sorry you are so tired but it isnt a week yet. I know I am on a diff comb but I just have to write off the first week. I dont have a (swoon) onc like doggirl but he put it really well- he said even though you cant ‘see’ it our bodies will be working flat out to cope with the demands the chemo is putting on it - heart, lungs, trying to cope with lack of nutrients, making new cells, not getting anywhere. Dont forget you were in work the week before. Be kind to yourself. If after all this, you are still worried, contact the team. Trust your instincts. BTW a KITTEN - sounds so cute. Hope she/he is cheering you up. Ginger- sorry you had such a bad reaction. I think maybe our bodies wise up to what is happening. I only have to pick up a box of domperidone and I feel sick!
Ambarose- your walk sounds fab.Well done.
So, I had a GOOD day!! Yes, a GOOD day everyone. Best day in weeks, Managed to eat and ENJOY a meal out! Wow! Even wore a BRA ! Not a success, comfie rides up but I was having so much fun, I didnt care!
Get the foo fighters on!
Rattles, x
PS trying not to think of 4, 5, or 6…(gulp)
Pps Squeakymouse- fingers crossed for tomorrow.
Thanks ladies. You have reassured me a lot. It makessense really and as you say Rattles, I we forget about all the work that our poor bodies are having to do behind the scenes.
Doggirl, I’ve not had any scans. As they got the lump and no node involvement, I presumed there was nowt to scan as we aren’t shrinking anything.If you get an answer from your onc re it going in the blood can you let me know. Thanks Well meaning friend ;)))
X
Hi again
Scans - I had them I think because although I have not had op yet it was obvious from the start that it was in lymph nodes as they were swollen and painful when I first saw GP then biopsy confirmed it was cancer. Also maybe they do them as a routine for inflammatory bc like I have because of its general weirdness. Perhaps if you have had op and they are certain your nodes are OK and you are having chemo as a kind of belt and braces rather than to shrink tumour before op its considered less likely to spread.
Well meaning friends… yes I know, trying not to sound like one myself!
Thank you ladies. Reassuring as usual. I didn’t expect a scan for belt and braces chemo but ‘friend’ planted that seed. Some people aren’t that helpful. I’m generally not on e to question ye wise medical people.
Right I’d better pull my finger out as son has school trip which means
Getting him to school early today and I’m stood ‘talking’ to you guys in my dressinggown and he is snoring in bed. Mind you he isn’t too keen on going to the Olympic Sings Festival ‘an exciting and engaging musical exoerience’. He has inherited my musical abilities…
Hi Doggirl, I’ve not had a full body scan at all. I’ve just had mammoand ultrasounds done on my bad boob. I have node involvement (at least one) so I guess they only do full body scans if they have reason to suspect it may have spread as cost is probably an issue, as always in the nhs. A friend of mine who had TNBC did have an MRI at the beginning of treatmdnt but she was also a private patient not nhs. Hope your son isn’t too bored at he Olympic sing-fest, haha, my boy would hate it too!!! I don’t know about you but I’m getting abit sick of all the Olympic themed school activities!!! X
Afternoon everyone. Justvafter a bit of advice as still feeling very nauseas. I’ve got 3 lots of sickness tablets but they don’t seem to be cutting it. Have any of you found any other things that help"? Any foods or natural remedies?
Hope everyone isn’t suffering to badly today xx
Hi Ladies hope your all keeping well i have not been on here for a while as had loads to deal with with the passing of my nan and sorting out the wedding.I had my 3rd fec on fri and have felt really bad since it’s been the worse so far no energy feeling really sick cant eat.Had district nurse out today to give lenograstim injections to boost white blood cells.Just hope i start to feel better soon big hugs to you all xxxxx
Hi Ladies hope your all keeping well i have not been on here for a while as had loads to deal with with the passing of my nan and sorting out the wedding.I had my 3rd fec on fri and have felt really bad since it’s been the worse so far no energy feeling really sick cant eat.Had district nurse out today to give lenograstim injections to boost white blood cells.Just hope i start to feel better soon big hugs to you all xxxxx
Hey Zumba, hope you are doing okay. I was where you are this time last week. Its horrible. Remeber it does not last for ever though it feels like it at the time.
Josie- some people swear by ginger (sweets, cordial, drinks etc). I find sucking a boiled sweet, lolly helps. Seabands? They are like elasticated cuffs you put around your wrist. I find I just cannot stomach water and go for elderflower and fizzy water. Hope this helps a bit. BTW Nora is very, very cute and photgenic.
Em, Doggirl- when do your children break up? My daughter is off school from tomorrow. Know what you mean about the olympics.
Rattles, xx
Afternoon ladies, I feel so much better knowing that I’m not the only one that feels like I do at the moment :-),I will carry one with the other 3 FEC,it’s so hard pyschologically, and I’ve never been so knackered, so frustrating, I start something and can’t finish it, I’ve got the concentration span of a goldfish :-D,got spoke to one the chemo nurses on Friday, and it’s because treatment is not being changed and on same treatment FEC x 6 and had op before chemo, that I’m not having scans and appointments to see onc, as long as things carry on the way they are I.e no major probs, I wont see onc. So fingers crossed that all stays ok, still not looking forward to having the remaing 3 FEC, but as Em said, we are tough, we’ve got this far we CAN do the rest :-/, hope everyone is ok, love to all Toni xx
Thanks rattles, I was thinking about trying those seabands, I’ll pop,to get some tomorrow.
Toni and Zumba, sorry to hear that you are feeling crap too, I’ve done 3 days of injections now so hopefully be on the up soon. It does seem to drag on but it won’t and hopefully well,get some up days before number 4. Sending a hug to you both xx
Finally got the missing docetaxel! And persuaded the very reluctant hospital staff to reschedule the rest of the appointments to keep the 3 week gap but had to refuse to leave the hospital until they had sorted it all! Now so completely off my face on steroids so probably won’t be able to post for a while.
Thanks for all your support, take care, and hope those of you feeling poorly are better soon. Love the little kitten.
Hi All,
Squeaky, thanks for the info re PICC and I feel much more reassurred now. I hope the next few days are not too dreadful for you…
I also have not had any scans and assume that is because it is a belt and braces chemo with no node involvement and all removed BUT I read in one of my letters which the hospital copy to patients when communicating with the GP, that mine was vascular invasive so I was definitely going to choose chemo when given options as i did not want a little b…r of a cell going anywhere else in my body even though they said it was highly unlikely. So we are all right as we are having the magic juices or sparkly stuff as the April thread call it. It is difficult to keep in mind the struggle the rest of our body cells are having when they did nothing to warrant this!!.
Bickerchic- I know what you mean-everyone who has not got this disease is so positive saying" halfway, only another 3 to do etc etc" but it is such an effort now to be positive as we know how horrible it makes us feel and I absolutely dread the week after chemo now. The thought of doing it twice more makes me want to run away from the whole thing. I won’t but thats the reality.
to all the other wonderful May buds who are so quiet at the moment -I hope you are ok. and talk to us soon. We need to know you are ok.
BTW had a call from surgery to say my insurance cert was ready for collection so made 6 mile journey to get it. Opened envelope in car to find it was as I had submitted it, no DR signture or any thing else. Not best pleased so it is back in there waiting for it to be done properly!!.
Do do do do do do doooooo!!! That was a fanfare for squeakymouse. About flipping time eh? Am still gobsmacked at your hospital treatment.
Sorry to hear so many are feeling so pants. Zumba when is your wedding?
I hope you get to enjoy the Planning and fun parts in-between the bc stuff.
Our schools don’t break up until the end of the week. So should get FEC 4 in before holidays. Then FEC 5 and 6 will be in august. The chemo will be FINISHED!!! Light. End. Tunnel. I find it easier during school term as ds is sorted for childcare. I am not sure what it will be like having him around during those first couple of days of FEC when I am monging out?!!
So saw the onc (swoon) today. Last time he is returning to the Marsden. I got a bit silly. Didn’t know whether to hug him or shake his hand lol!! Anyway asked him about the 4 FEC lark. I did make it clear that I was up for doing all of them. He said they haven’t done only 4 since 2001. He explained the reasoning behind doing six and mainly it was a mathematical equation to do with getting maximum effects on the cells.
So have my positive head on and am looking forward to number 4 Wednesday (liar). He did say my bloods were only just good enough last feccing
Rattles. My husband is also a Tour watcher. It has just cost us a small fortune as he has been down the bike shop today to pick up a new bike £&@#** is what springs to mind!
Still mutton chops Wiggins is doing well and I do like him. Such a gentleman!
Squeaky-mouse - let me know how your SE’s go with the dreaded docetaxol, a week on friday for my first one. Ridiculous that you have to be so bolshy in order to get what you want at the hospital, it is not fair!
Talking of hospitals - I went to see my GP this morning about the sore chemo arm/phlebitis - and she was shocked at the size of the vein in my elbow, it actually looks like a small bone! Anyway I got packed off up to A & E - 30 plus miles away - so the rest of the day was ruined, after being seen by several young doctors, running around to ask for second opinions they decided to leave well alone. Not to attempt to straighten it in case it causes a blood clot! Got home 5 hours later in a pretty bad mood. I mean the GP phoned the specialist there, and they said go straight up and then they don’t even send me to that dept! Maybe I should have tried the squeaky mouse approach.
Bought one of those wheat microwave pillows that someone recommend on here today - lovely lavender smell and seems to help as well.
Strange how everyone was finding the 3rd FEC the worst, it definitely was for me as well.
Hope everyone is ok, and gets a good night’s rest.
K M xx
Hi all
My FEC3 was cancelled last week because my neuts were too puny - OH and I went to Wales for the weekend to make the most of me feeling good. We even had some sunshine, and I managed a (shortish) walk up a (smallish) hill! Sounds like number 3 isn’t anything to look forward to, doggirl you’ll be a whole FEC ahead of me on Weds!
Squeakymouse - well done for winning the fight with the hospital - ridiculous that you’re having to battle with them, but good that you’re able to take them on.
I’ve been getting into the Tour de France too (though I haven’t spent silly money on a bike as yet…) - I’m sure I’ll be watching the Olympics when they come around too.
Love to everyone,
Alix xx
Kitten-mad, sorry you have been given the run around, had a wasted day, and still have a sore arm. Maybe you could ask about getting a picc line before your next chemo is due?
Ambarose- you had had a run around too. How hard can it be to sign something? Squeaky-mouse- it is a strange time indeed to be congratulating someone for having got their chemo (!) I read a sobering book in the waterstones cafe (as you do!) which detailed how women were campaigning to be given docetaxol when it first came out as a treatment for breast cancer. That really gave me a kick of the bottom! Most people find it hits after a couple of days. It doesnt seem to make you as sick as FEC but the fatigue is harder and the general feeling of uugh! It also causes more neuropathy, so tingling of hands and feet. Doggirl, that bike must be really something. Even my daughter is a fan of Bradley Wiggins. He is doing brilliantly. I too am dreading daughter being off and being ill at the same time. Not sure how we will manage. Sorry you have to say goodbye to your onc esp as he is (swoon). When you have a good doctor, it makes all the difference. I cried when I had to say goodby to the doctor who gave me rradiotherapy. He was so lovely. He came to see me when I was admitted with an infection even though he had just got back from his hols. and it was 10.30pm. At that moment I thought ‘this is a man I would marry!!!’ These are the heroic individuals who make the NHS, not the c…p beaurocracy and madness that comes with so many parts of the system and makes you feel you are nothing.
Good luck for Wednesday. The only way I know to deal with it is to put a big cross through it…It will be done. When it is in, you just have to keep going.
Rattles, x
PS I am thinking of the quiet buddies too, esp Polarbear, Myfanwy (how did you get on with your temp?), Harry duck, who was struggling in her last posts…
he is returning to the Marsden. I got a bit silly. Didn’t know whether to hug him or shake his hand lol!! Anyway asked him about the 4 FEC lark. I did make it clear that I was up for doing all of them. He said they haven’t done only 4 since 2001. He explained the reasoning behind doing six and mainly it was a mathematical equation to do with getting maximum effects on the cells.