Starting Chemo, June 2010

Hi Deb,
I’m still having periods and they’re weird, totally different to normal. Spoke to Onc about it last time as I was worried that I was still having them. He said that they do hope to get them to stop but that it is not unusual for them not to be able to stop them if you are young. I’m 34. I asked him is this mattered in terms of it coming back. He said it depends on the hormone receptiveness of the cancer. I’m only mildly hormone receptive so he said research has shown it won’t increase risk as the tamoxifen will take care of it.
I’ve had really bad cramps (I don’t normally get them) and periods have been v short compared to normal. He said it’s nothing to worry about and that the chemo would mess up my hormones.

Hope you feel better soon.

Joxx

Hi
Thanks for your responses ladies. Am not worried about the hormones as my cancer is not hormone receptive at all 0/8. It was just that my periods were so regular. I suppose I expected that they would stop, not that I would get more of them. Ta debx

Hi guys,
I’m really struggling at the moment. I constantly feel on the edge of tears and like everything I have been trying so hard to keep together is slowly crumbling.
My eldest (5) is sick with ear and throat infections and so I’m trying to stay away from him which is a nightmare. You know what it’s like sick kids want their mummy so there are lots of tears and a very anxious little boy.
My OH is really not understanding how my son is feeling and so just gets cross with him and thinks he’s being naughty. My little man has been trying so hard to understand about mummy and germs but just feels poorly and miserable.
I’ve decided to stop work too as I’m not sure if I’ll be able to manage it with the TAX. I know it’s daft but staying at work has helped me to keep feeling normal to forget about chemo and to use my brain and now I’m losing that too.
Things don’t seem great with my OH either we seem really distant and he just seems exhausted and fed up with me and the situation.
God I sound really pathetic sorry for moaning.
Take care everyone.
Joxx

Hi Jo

Have pm’d you. Debx

Hi Jo,
sorry you are having such a tough time. It’s really frustrating when you know how to defuse and mend your childrens problems and then have to watch whilst your oh steps in with their size tens and goes with the shouty approach rather than cuddles and understanding. Mine did it this morning with my three year old who was quite obviously to me starving and thirsty and needed his breakfast but my oh just didn’t get it and was telling him off, making it worse and wanting to have his shower first. I think because we have been the main carers for do long, and are more tuned in as mums anyway, that oh are just at a disadvantage. Doesn’t mean they don’t love us or the kids, they just bring different things to thd table. We have argued for years over how much time my oh has devoted to football but this season I am hush glad he has somewhere to go as a pressure release.

Poorly children make things so much practically and emotionally harder. My five year old had acreally bad chest infection and tonsillitis on my first post Chemo weekend. My oh had to take him to childrens ward not me and I couldn’t go near him. Even if I was just ill and unable to help in normal life, without cancer and all it’s implications, that would have been a hugely stressful event and time for our family. It makes you feel awful not being there for your kids. All o can say is that it is an acute phase of stress which will pass. My 3year old has suffered from ear infections since he was six months old and has had chronic glue ear, 2 grommets ops and languagddelay. I know how hard the infections are.

Chin up, you are doing a brilliant job. I feel like a rubbish mum a lot but then think how somehow I have managed to get thru to thd other end of Chemo with kids intact. I think I would have found it really hard to cope with tax, work and kids and perhaps you are right to go off work whilst on it. It’s great on my good days to be able to cram as much mummy stuff in as possible and has made me feel better on the exhausted days to know thT soon I can focus all my time on the boys.

This may be one of those times to go with your own advice and be kind to yourself. What you are going through is one of lifes most stressful events and you are doing well. Maybe focus on keeping your unit together over the weeks ahead, get as much help kn as poss and organise some time out with your oh on one of your good days. Big hugs going out to you, vickie xxx

Jo, you’re not pathetic for moaning at all. Hard enough to get through this, without having small children added into the mix, and even harder when they’re ill. Mine had really awful Chicken Pox recently so I completely get where you’re coming from. Not sure if this helps at all, but my DH’s mood improved when I sent him out to the pub with his mates. I realised he hadn’t been going out at all, as he was so into looking after me. Another thing which helped, was I got us a bottle of champagne and we spent some time with a few nice nibbles drinking it and spending time together. It’ wasn’t so much romantic as spending time and forcing him to stop being a carer for a while iyswim. Reading this, I seem to find solutions in drink though actually I can’t really drink alcohol at all for now! We’ve also started to plot a holiday for next Easter, when I’m hoping I’ll have my energy back. Hope your son’s a bit better today xj

Jo think we’re all feeling like bad mums at some point. My little boy (2) has had a chest infection for 3 weeks which i also managed to pick up and we all ended up on antibiotics. OH was really understanding and helpful… NOT!!! just moaned that he had to work and couldnt get up in the nights .

I stopped working when i had my op and glad i did as ended up back and fore the hosp every other day with a blocked drain. Know what you mean about feeling brain dead though. Im trying to finish off a college course which although it keeping my brain going makes me feel guilty about spending less time with LO.

Had first tax this wed and was feeling great until last night and now i feel like a bloated old woman. Nothing fits!!! Also cant sleep from the dexamethasome, hence the late post.Any one else get bloated on TAX? Any advice?

Hope everyone doing ok

sarah xx

Hi

Should have been at V this weekend- god I hate this f***ing disease.

Bloating was one of the things to watch out for on tax. I would def mention it to someone especially if it is feet and ankles.

Have to take my mega dose of steroids tomorrow. Quite worried about no sleep. Nurse said take at 8 and 2. I have small kids up early do you think I can take them at 7 and 1?

Hope you have all had a good weekend debx

I took mine at seven then one ish. Take them to the hosp with you kn Tuesday too so you have them with you to take in case you get caught up or delayed! Good luck with it

Thinking of you
vickie

Yes I bloated at stages . Is one of se but check with your nurse anyway. I put on and hhen off five pounds over two days, must have been water!

I took mine at 7 and 12.30 and Onc said that was okay. So long as you take them with food they don’t seem to mind.

Sarah, I did get a teeny bit of bloating, but not much. The others are right, you should call them to check though. I think my Nurse said it’s common though, so probably just annoying. Hope you’re okay today. xj

Hi all

Had first tax today. It quite ineventful. They took their time with me and kept things calm as I was nervous about either having the allergic reaction or having a panic attack and thankfully neither happened. So now I am just waiting to see what happens next as far as side effects. It is definately a lot less of a faff than FEC and no horrible red liquid- even typing that makes me feel sick.So will see- my medicine cabinet is full, just have to remember when to take it all.

Good luck to all chemosapians this week. Debx

Still cant sleep ARRggghhh. Nurse gave me some sleeping pills today so if Im still awake at 3.00 they’re coming out.

My first 2 days of Tax were great I felt brilliant but then aches and pains and hit by brick wall kicked in at day 3. Ive also passed out twice !!! Nurse says its normal.

Dont think they mind what time you take the steriods as long as no later than 2 and with food as it can upset your tummy. Back at the hospital on Thursday for herceptine so I’ll mention the bloating then as although its better still feel like a beached whale.

Hi all

Happy have you started herceptin already? I had my first tax yesterday but no one has mentioned when I will get that. I feel fine today even though I am awake early. I expect the side effects to kick tomorrow. So am going to try to enjoy today before the bus hits me.

Jo is is your first tax this week? Remember you steroids and take your afternoon ones with you if you have a morning app as you dint want to take them too late if there are delays and something to eat when you take them. I have to admit half a lorazepam and some debussy on my iPhone helped keep me calm.

Vickie hope you are feeling well now.

Good luck to everyone debx

Hi All

Have first herceptin on Thursday and if Im honest it came as a bit of a shock. Think I’d had a leaflet after the surgery but didnt have an apptointment or didnt know what it involved. Then had a call from the hospital to say they needed to arrange and when could i go in. I’ll be there for 5 hrs being monitored.

Think the SE are minimal they just want to monitor my heart which is good.

Midge/ Deb hope your SEs are ok,

sarah xxx

Hi Sarah

Only side effect so far is a hot red face but no temp. Have phoned unit to see if it is ok to take piriton. Maybe some sort of delayed reaction. No one has ever mentioned to me when my herceptin will start. The sooner the better for me. Debx

Deb

Sounds like you’re doing really well.

Think they can give herceptin either a week after chemo or when its finished. May be worth checking when you have your next appt.

Sarah xx

Hi

Phoned the chemo unit- hot red face no temp is a reaction to bumper steroids not tax phew!

Jo if you are having tax tomorrow let us know how you get on. Good luck.
So far no sickness, just waiting for the other se’s to hit.
Debx

Hi all,

I confess to being a bit of a lurker rather than a regular poster here. It is fascinating to see how we all react so differently to the concoctions we are given. I appear to be back to front to most of you on FEC-T and had the worst time on FEC but so far on Taxotere (had 1 full cycle and 2nd dose today) I’m finding it much easier to cope with. Only side effects I have to deal with now are fatigue, constipation, then diarrhea mid cycle, sore and dry mouth, itchy rash on hands, some rectal bleeding and one visit to hospital A&E for anti-biotics as I had flu-like symptoms which was some sort of virus. The key thing is that the nausea is nowhere near as debilitating as it was on FEC for me.

The only bone pains I seem to be getting are around day 10-11 from the G-CSF injections I get every day for 10 days after chemo to keep my white blood count up.

I seem to have been quite lucky in that I am at least managing to sleep at night with the exception of waking up to have a drink and go to the loo on average twice a night. A few nights ago I actually slept right through which was great!

Anyway, all the best to all of you with your continued chemo and post-chemo treatments.

Mia

Hi all

Herceptine today was a doddle you’ll all be pleased to know for those who have it in plan.

However the fainting and not being able to get out of bed for a week after my Tax was definelty not normal and now have a course of antibiotics to take.

Like Mia, ive had some diarrhea the last two days but they think thats a bug rather than SEs, but the furry dry month is driving me nuts. Everything tastes of metal at the moment. Any suggestions??

sarah xx