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Madjock
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01-05-2012
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09-08-2012
09:20
Hi StillRise
Sad that your friends are a a ‘wee` bit inconsiderate.
I had much of a problem a few years back. Elderly neighbour, took her shopping took her to hospital appts (and sometimes there were 3 or even 4 a week). I really didn’t mind doing it, took up a lot of my time but well I was the only neighbour who would do it, no children of her own and stepchildren didn’t visit often, and if I’m honest I didn’t blame them a bit as she was sooo rude to them. I’ll cut the saga short, my husband retired early (working with high voltage he was a danger to himself and others). He had quite a few hospital appointments while they tried to find out what was 'wrong', and I couldn’t split myself in two, my husband was still relatively mobile so I let him go on the bus a few times - then I sat back and thought ‘This isn’t right’. Told elderly neighbour that there would be occasions when I couldn’t take her to hospital as husband’s appointments often clashed with hers. Well she went off on one, started ranting about how was she expected to get to hospital. Told her I would change her appointments to a more suitable time for me but even that wasn’t good enough, had to be though. She did get a relative/friend to take her to appointments that I couldn’t do, surprising what can be done.
I will admit things were never the same between us, a lot cooler, I still took her shopping, doctor’s appointments and anywhere else she needed to go, but just never the same. Unfortunate.
You have to look after yourself, first and foremost. If you go down because of sickness/stress what happens to your own loved ones, who would look after them. Try explaining to your friends the extra demands on your time and that you now have to care for a relative with dementia, so for a couple of days/hours a week you will be unavailable to call round and to make a list of the small jobs needing done and you'll do them first time you're available. I would say don't tell them you have time on specific days, like Monday, Thursday or whatever, it has to be on your terms, i.e. when available. Sounds hard I know but you understand why.
Take a step back for a while and just don’t let it drift back. You don't have to cut off all ties, just call round less often, use the phone more.
Sorry got carried away with the rant but as someone who 's been there I feel for you.
As ScottishLass says, friendship is a two way street. Take care of yourself.
Maggie
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08-08-2012
11:45
Evening all
Smudge - I was given Dexamethasone and Ondansetron (and told to take these for 2 days only). I was also given domperidone and told to only take these if I still felt nauseous. Of course first time round I had no SEs so didn't need the domperidone and the sick feeling second time around came as a shock to the system and I didn't even think about taking it - brain dead. But I'll be ready for it if it happens next time!!
Sian - I took the last of my hair off the evening I had my second dose so I lasted the full 3 week interval between doses. I really couldn't have left it much longer anyway as it was coming out in great clumps - my daughter took great delight in starting it off by giving me a mohican (now I know what a grey haired punk looks like). I'm used to it now but it gets a bit nippy round the ears of an evening. I know exactly what you mean about feeling guilty that you're feeling good - that's how I felt first time round.
Jellytot - understand about the sore veins, my hand still feels bruised and a wee bit red round the wrist, also starting to get a pain in my upper arm (like I've been bruised although not bruised). Well I've got another 2 weeks to heal so they can batter my body again! Hope all goes well at your onc meeting and I'm really glad that you enjoyed your session with the support group. Enjoy the massage and take all the pampering you can get.
Goodnight all, sleep well
Maggie
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08-08-2012
06:32
Hi Hazza
I'm now 8 days post 2nd fec and I am only now beginning to feel human. I was OK for first couple of days but by Friday I was feeling rough, spent about 4 days mooching from bed to sofa to bed. I was even reduced to taking the domperidone (desperation) but I think I maybe left it too late and was probably on my way to recovery when I took them. I wasn't physically sick but I wished I could have been. Speak to your own GP asap as he should be able to give you something for the nausea,
Like yiou I had very little SEs first time round so wasn't expecting to be hit at all.
Sorry you're still feeling bad and can offer only sympathy but do keep drinking as much as you can and don't forget to keep an eye on your temperature.
Take care
To all the lovely ladies suffering SEs, chin up, it will ease (although I would have willingly punched anyone who told me that at the weekend!)
Maggie
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05-08-2012
11:39
Hi all,
Less than a week after my 2nd fec and I feel feccing awful. Haven't been throwing up or anything just feel bad. Feel as if I ate something that really disagreed with me, sore eyes, belly and bones, mouth like a badger's bum and all that. My left hand (infusion site) is slightly puffy and a wee bit achy as well. I have slept since yesterday tea time, and feel slightly better than I did yesterday (not much though). Temperature OK
This will teach me for being such a smarty pants about feeling fine through the first dose. Going to have another 40 winks.
Maggie
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03-08-2012
01:57
Good heavens Lesley just as well you took your temperature, and really sorry to hear you're in hospital, best place for you, plenty rest, boredom and tlc.
If my temperature reached 38 I would definitely be in trouble as I think I have a low normal body temperature. After first chemo, took on board all the advice, checked my temperature daily (well we all get a bit paranoid to start with). Trouble is my temperature never reaches 37, always roughly around 36.5 (highest 36.9) so I assume this is my normal temperature - even bought a new thermometer in case the other one was telling lies, but just the same.
You take care of yourself and hope your WBC rises quickly and glad that you're not feeling too bad with the high temperature.
Good luck
Maggie
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02-08-2012
10:12
Hi Jellytot - I take it you haven't had lymph nodes removed if you can use both arms for infusion Unortunately I had lymph clearance on right side so they can't use that arm and I'm stuck with having all in left arm. If it becomes a problem then they can put a line in for the last few, not particularly phased about that.
I think you should try the support group, sometimes its better to meet people your own age with the same problem and actually see how they are coping. If it doesn't work out, nothing lost and you can still use the forums to vent the feelings that you wouldn't/couldn't speak.
Go on wear your wig, if you're not comfortable with it on (too hot) whip it off, a lot of people there will be in the same hairless state so won't be bothered about it at all.
Have a good day.
Maggie
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01-08-2012
09:38
Hi CoackK, really sorry to hear you're not feeling so good. I had a look on the McMillan website and they say that aching muscles is a relatively common side effect of chemo.
You say you spoke to your BCN, do you mean the breast clinic nurse or the chemo department. Were you not given emergency numbers for the chemo clinic, I was told to ring them at any time day or night if I had ANY problems at all. Hate to say it but my BCN is pretty useless and I certainly wouldn't be speaking to her about any side effects of chemo.
Sorry I can't be of more help to you. Can you get some strong painkillers from your own doctor or even ask your BCN to get some prescribed for you, hospitals can give much stronger analgesics than your own GP.
Again feel really bad for you and hope you can at least get a night's sleep.
Maggie
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01-08-2012
04:24
Afternoon ladies
Jellytot - I had my second dose of fec yesterday and I asked the nurse about a mark on my arm (just up from the wrist) it looks what can only be described as a watermark and she said it's the fec affecting the veins - I had been trying to scrub this off as I had been cleaning out the loft and thought it was dirt! The veins on my hand certainly don't stand out as much as they did as before first fec the nurse said they were beautiful veins and they certainbly aint that now, they look different from the other hand (thinner). I don't have any pain though but you should speak to your nurse and get it checked out. Have you had your second dose?
Hair all gone now, took it off last night, got fed up waking up in the middle of the night and found I was eating it.
Still feel fine, no horrible SEs, bit of a dry mouth but daughter told me to get chewing gum to stimulate saliva (she's in dentistry). I hate the stuff but I will give it a try.
Got my wig yesterday, wore it today to go to Tesco but I think I'll stick to the scarves as much as possible as I feel more comfortable with them. I'll just put on a bit more lippy to cheer me up.
Chap 2 doors down from me was working on his roof and I forgot, went out the back with no wig or scarf, well normally nobody can see me there. His head is shaved, saw him looking at me strangely so just laughed and made some comment about the matching haircuts we have. I don't mind people knowing, just don't see the necessity of putting a poster in the window
To all of you who have had their second dose, hope you're all keeping good. To those who have the next one to come may your SEs be minimal.
Keep going ladies
Maggie
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01-08-2012
12:42
Saw oncologist yesterday and yes they have changed my treatment from 6xfec to 3xfec and 3Tax because of heavy lymph node involvement. He wasn't there last time because he was off getting married. He's Irish so I asked him if there was any fights at the wedding and he said no. Couldn't possibly be a good Irish (or Scotitsh) wedding without a bit of a rammy!
Had second fec dose today, took forever. Nurse got the needle in my vein but no blood was coming out (I gather they like to see blood flow so they know the cannula is in the vein). She got another couple of nurses over to check it raised my arm a bit and blood flowed, stopped, started again so she got on with it but was very wary and was checking every 30s. Told her it was my being a Scot, I was parting with nothing for free, but as she was Romanian she didn't quite get the joke. Other than that all went well.
Hair all gone, daughter used clippers on it tonight, gave me a mohican to start with, thought it was hilarious so did OH. It's been quite a while since we all laughed together and I didn't mind at all it was good to laugh. Wig looks quite good, grey all gone. OH says he wishes he had the courage to have a no.1 haircut!
Removed the last of the stitches myself, just worried them to death! I have even had a proper look at my wound, have been skirting round the edges for weeks and it doesn't look too bad. and I have managed to wear a bra, complete with comfie, all day.
While I was at clinic yesterday met a lady who used to work in a shop just round the corner, and she was there getting nuked today as well. I did say a few words to her but she had someone with her so didn't like to chat too much, but a familiar face is always welcome.
That's it chapesses, going to bed now feeling OK but a bit tired, bit of a taste in my mouth, other than that still fine, see how it goes over the nxt few days.
Goodnight all,
Maggie
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30-07-2012
06:32
Hi all
Saw oncologist today, asked him why docetaxel (Taxotere) is mentioned on my consent to treatment form. His answer was, that I would be having the docetaxel. Asked why and he explained that I was originally put down as 6 x fec, but having discussed at their team meeting thought that I might benefit from the docetaxel as I had heavy node involvement, but that they were waiting to see how I fared on the fec. As I have no bad side effects I will now be having 3 x fec and 3 x tax. He also said that I might experience side effects on the tax, being a different chemo. Hmmm, just as I thought I was getting away with only hair loss, what do I mean ONLY!!! I’ve decided I’m going to lose what is left of hair tomorrow evening, I will get the hair clippers out and get OH to give me a no.1. I can’t do any cooking (no bad thing) without wearing a hat or scarf as my hair is shedding so much.
Being nuked again tomorrow assuming bloods OK and hopefully will see wig chap while I’m there.
Smc - good that you’re feeling well and getting over any side effects.
Coachk - ditto
Smudge - hadn’t thought of naming the wig, no doubt OH or daughter will come up with ‘smart’ thing to call mine.
Everythingisrosie - wash your hair while you can as by the looks of things most people don’t start to lose the hair until about 14 days and glad you’re feeling as OK as is possible.
Hazza - know what you mean about tying the scarf, I looked as if I was about to take off the first few attempts but got better.
Jellytot - I had acid reflux and ate cheese - helped me. Didn't suffer too much from constipation but I had a fresh coconut on standby - I love fresh coconut but don't eat it much as I know what it does to me!!
Quinny - how are you faring after chemo no. 2?
To all - keep well, keep going and hopefully this will soon be nothing but a memory..
Maggie
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26-07-2012
10:36
Hi all
Coach K - sorry to hear you’ve not been good but hope that you will be feeling back to your old self in a day or so. You seem to be quite a positive person so SEs must be bad to keep you in bed!
Daysy - glad you’re feeling not too bad - my hair is only now starting to moult and it’s been 16 days since my first dose, trying to keep as much as possible until Tuesday (chemo day) and hopefully the chap who does the wigs remembers to come and see me with a couple to try. I didn’t think losing my hair would bother me but now it’s starting to come out I realise that it does bother me, not a lot I can do about it though.
Everythingisrosie - would be good to hear how you’re getting on.
Quinny - good luck for tomorrow, hope you’re SEs are little ones.
Those I haven’t named - hope you’re all over the worst of any SEs and enjoying the sunshine.
To all those looking forward to the Olympics, enjoy - I will not be heading anywhere near London for at least 4 weeks. I hope the tubes aren’t packed when I have to go to appointments next week cos I hate standing on packed trains as I have enough trouble with hot flushes (could definitely flush for TeamGB).
Goodnight all, sleep well
Maggie xxx
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26-07-2012
09:53
Hi ladies
Am now losing hair - thought it might last until I see the wig chap on Tuesday but looks like I'll have to wear a scarf for my next hospital visit. I see onc on Monday, have bloods done and get nuked (2nd) on Tuesday.
Hope everyone is doing well and SEs are bearable, especially in this hot weather.
Keep well all
Maggie
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23-07-2012
10:13
Hi everythingrosie
Sorry you're here. You will find plenty of support on this site.
There is a thread for people starting chemo in July where you will find lots of younger women with young children (I'm one of the oldies who started chemo in July).
The thread is 'Starting chemo in July' have a look and read through and I'm sure you will find a lot of comfort knowing that you're not alone. Whatever feelings you have at the moment, we've all been there.
I only had my first round of chemo at the beginning of this month and I still feel fine it's usually not as bad as the thought!
Good luck tomorrow
Maggie
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23-07-2012
08:37
Evening ladies
Mlesley I hope your chemo went well today and that you're not suffering any SEs.
CoachK good luck for tomorrow.
I am 2 weeks into my first FEC and I have had very, and I mean very minimal SEs. Get a little bit of gastric reflux but I just eat something and it goes. About a week after fec I would have eaten anything that resembled food but this increase in appetite only lasted a couple of days as did the reflux. Hair still attached and doesn't seem any different but I expect it to go somewhere in the middle of second round. I did take the anti-sickness drugs so they must have helped. Was a little bit constipated but left it to nature and only lasted a couple of days although I had the movicol at the ready!
I understand that the effects of FEC can be cumulative so the fact that I have had an easy time first round doesn't mean that the second round is going to be the same, I'm trying to salve my conscience here because some of you are having it bad and I really feel for you as I know I'm not a nice person when I'm ill, as my OH can verify!!
I truly hope that you all get over any SEs quickly.
Take care
Maggie
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22-07-2012
12:02
Hi ladies
Thanks Mezzomamma and Lavender for your response.
I should say that I don’t have a problem asking onc questions. I didn’t notice the scribbled note about the docetaxel until the other day when I was clearing out the bag I took to hospital. When I was at chemo clinic for my look around the sister told me that she didn’t have the consent to treat form (seemed to be quite a big deal) but that she would make a note and get the doctor to complete. I saw the onc the day before treatment, she duly filled in the form and put it to the side. Had chemo next day and just as treatment was finishing and nurse was filling in various forms I said to her I don’t think I actually signed that consent . Was she not a happy bunny!
I did try to get an appointment with our local practice nurse to have a look at the stitches but reception only offered an appointment early August and as next chemo is end of July might wait until then, on the other hand if I’m in a stroppy mood next week I will speak to practice nurse personally as I know she will see me (known her for years). Actually just remember when I last spoke to GP nurse - I was at diabetic clinic (last February) and as we were just finishing, she had a look at my notes, saw the referral letter and said are you worried about this - I said ‘Nah’ - oh those halcyon days!!!
Take care all
Maggie
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20-07-2012
09:53
Evening all
I have a question I am sure someone will be able to answer. Is there a difference between FEC-5 and FEC75? Is it just that different hospitals call it different names - just curious as my treatment plan says FEC-75 - I think the 75 is 75mg epirubicin but don't know if that's the normal dose.
I need to speak to oncologist next time at hospital anyway as on treatment plan it says FEC-75 x 6 but on the consent to treatment form I signed it states FEC-75 & docetaxel (this is in physicians handwriting and barely legible but that's what it looks like). The consent form was written by a different oncologist who was running late and in a hurry!
10 days since 1st chemo and only minor SEs.
Another silly question - how long does it take for the mastectomy stitches to dissolve (mx 29th May)BCN removed a couple of them last time I was there but she couldn't get them all out, they're still there and starting to annoy, can't wear a bra for long as it rubs/catches on the ends. Again BCN was in a hurry as she was finishing lunch time that day and then off on holiday - you know places to go, people to see.
Have a good weekend all and keep well.
Maggie
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13-07-2012
12:47
Sorry to hear about your troubles.
First appointment at clinic was for me the same just a look and a prod and then a letter dated the following day came through with an appointment for 10 days later, which I know can seem like an eternity but if you haven't heard by Monday I would phone clinic to check if appointment is in the post. The waiting is definitely soul and mind destroying. Everyone on here will tell you the same. They may even phone again if an early appointment comes up.
Hang in there girl, and I do hope your ultrasound is clear.
Maggie
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12-07-2012
12:13
Hi all
Day 3 after chemo still no SEs but taking the anti-emetics and they're obviously working as I feel fine. Maybe felt a tad tired yesterday but I'm putting that down to less stress now that the first one is over.
Just playing the waiting game to see if anything happens - when my sister had chemo (albeit for lung cancer) she had absolutely no problems with SEs, apart from the obligatory hair loss, she just carried on as normal, so I'm hoping it's in the genes!!
Good luck to all.
Maggie
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11-07-2012
11:19
Evening all
Had my first chemo yesterday, wasn't nearly as bad as I thought. Side effects not kicked in yet, not felt sick at all, pills are evidently doing the job. Chemo nurse positively salivating over the lovely veins in my hand, I suppose it makes her job so much easier. I'm maybe a tad more tired than normal but I'm putting that down to losing some of the stress now that first chemo is over.
Saw the chap about a wig, I think he works in the hospital as he said he will bring me up 3 or 4 samples to try next time I'm there - I'm going blonde - fed up being grey. Daughter thought it hilarious when I asked her to look around for a couple of bandanas/scarves in case my hair started to fall out before my next visit, said that everyone would know it was cancer so why try to hide it - wear a baseball cap! Such sympathy. I'll dig out my husband's West Ham cap and wear that - I might even wear the shirt as well!!!! I wonder if Partick Thistle sell caps, must google that.
Sleep well all, good sleep is nature's blessing.
Maggie xxx
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10-07-2012
06:22
Had my first FEC today, no problems and feel fine at the moment, but obviously a bit too soon for any SEs to kick in. Everyone really nice and helpful at the clinic and answered all my silly questions.
See how it goes over the next couple of days!!
Maggie
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