Day 65. Hiya Liz & Louise, glad to have been of some help. These forums have been a great help to Sue and myself, even though Sue doesn’t come on here she has reaped the benifits I feel. How are you both getting on with the Epi ?? As detailed, Sue has had a reasonably side affect free time since her meds were sorted after the first Epi. Tiredness has been the main problem all along and the hair loss of course. Her weight is gradually creeping back to her usual 9 stone (she went down to 7.8 in the early monthes) We are now planning a walking holiday for the new year, chemo ends on 27th November.
I’m hoping that her “head” probs will decrease when her hair starts to come back,she still doesn’t like crowds. I still think she would have benifitted if we had had family around us to take her mind off this crap. I have set Sue a bit of a challenge by buying 2 tickets to a gig in 3 weeks. Will she have the bottle to come ??!!
Anyway, it’s a smashing day and we’re off down the seafront for some fish’n’chips. Best wishes to you all and I shall keep this diary going,even if there’s not much to report.
So glad there’s not much to report - that’s a good sign and the seafront + fish and chips sounds good. Where are you?
Hope Sue makes the gig although I’m much the same about crowds at the moment and not sure I’d thank you! Just going to the shops I feel as though everyone is staring at the wig so wait outside when it’s time to pay (another way of getting OH to pay!).
Collected my first lot of Xeloda this morning to start tomorrow and came away with the DVD outlining all the scary side effects. Hopefully after the dreaded epi it’ll be a breeze.
Hope life will return to normal (I think ‘normal’ will have changed for ever) and Sue gets back to enjoying life. Hopefully we will all put it all behind us and get on with life.
Hiya Mal, not the old “gotta go outside cos everyones looking at me trick”…he is so gullible !!! We live in Torquay,been here for 20 odd years,kids ripped us of at Uni then never came back !! they are settled in Edinburgh and Worcester.
Take no notice of the side effects warnings on the packet, have you ever checked out paracetamol ?? they have all angles covered!! Sue has planned for the main problem (based on these forums)by smothering her hands and feet in E45 and wearing white socks and gloves in bed…these also match the white hat she wears to protect her stubbled head !!! I know it should not be funny BUT I’ve had an ongoing battle with eczema and have slept with white gloves on which has often brought a smile to her face…revenge !! As long as you have the medication at hand for the other possibilities its a case of wait and see.
Regarding having a normal life, I do tend to forget that things will not be the same for Sue. Every ache and pain will bring fear and concern. I’m lucky because I get out to work and I have filled the rest of the time as a “researcher & diarrist” to her illness. Never been one for tatoos but I may get “Remember 2008” on the inside of my arm !!
Day 70. Final day of the first session of Xeloda. No complaints,no side affects except for a slight runny nose and tiredness. Hopefully the next 2 monthes will be spent watching her hair grow and NOT waiting for some chemo sideline to take hold.
Weekend looking good and it’s Sue’s birthday on Saturday so we’re off up North to Worcester to meet up with the kids for a few days.
Best wishes to all ,enjoy the weather.
Oh yes,I’ve got a spare ticket for The Hold Steady in Bristol on saturday week…Sue has declined my offer,which is a shame because she looks smashin in her snazzy turban.
Hi John/MAL
Glad you are getting away. Had my third epi yeasterday and am feeling ok again.
Felt quite chuffed when the doctor said ’ I see you havn’t lost your hair yet.’ To which I replied yes I have this is a wig.
It must be quite good cos peple I havn’t seen for a while keep saying like your new hair do.
Doc also said most people who she has had on the trial with Xeloda have had none or nearly no side effects. Hears hoping I’ll be a lucky one as have managed quite well on epi
Have a good weekend everyone
Liz
Well was really sick the other night after the xeloda but have kept it at bay since with the anti-sickness pills. Otherwise OK. Very tired though but managing to go into work for 4 hours a day.
Glad Sue is perking up and hope she has a good birthday in Worcester. It’ll be lovely spending time with the family. We have a family celebration this Saturday too. I’ve got a new grandson, Lucas, born last Saturday. I know I’m biased but he’s so cute. Just what the doctor ordered.
Also glad you’re coping well with the epi Liz. Onward and upward!
Day 78. Good to hear positive vibes and happy news on here,I guess Lucas is not your first grandchild Mal ?? We had a smashing weekend away…just what the doctor ordered.
So, 2nd lot of Xeloda starts today and we haven’t even mentioned it. I think Sue is sort of used to feeling slightly under the weather,bit of a sneezy,runny nose and tired BUT not so bad if you get the drift.
We went to see the Oncologist yesterday,just to let him know how the xeloda was. He was on holiday so we saw a nice young lady who,after telling us she was pleased with the lack of side effects, then mentioned radiotherapy !!!
Our oncologist told us at the start that Sue would not need radiotherapy BUT his notes read…“on reflection it would be wise to have a course of radiotherapy.”
He hadn’t told us , which i thought was a bit thoughtless.
Anyway,Sue will be “blasted” 5 days a week for just 3 weeks,probably in december (her chemo ends at the end of November)
Oh well,best start researching radiotherapy…I guess this is what people on here call “rads” ?? Due to Sue letting me down, my future son-in-law is coming to the gig. We are having a “man day” in Bristol and have booked a hotel because its not safe to drive late at night…hic ;o)
So glad you had a brill week-end away. It really does you good to get away and do ‘normal’ things.
Strange about the xeloda as I’ve had the sneezes and runny nose and thought I had a cold. I tell everyone I’m feeling great, and I do by comparison to epi. It’s all relative isn’t it? And my hair IS growing even my OH agrees now. You do need a magnifying glass to see it though. What about Sue’s?
I too have been looking at info on rads, but I’ve known all along it was on the cards. Strange they didn’t mention it to you before. Did Sue have a WLE?
You’re right. Lucas is my 16th grandchild and I’m only 56!
Hi John
So glad you had a great weekend
Enjoy your gig when it comes. What a shame about the rads though. Poor Sue when she thought she was nearly done. At least it should all be over by the NEW YEAR FOR A NEW START.
Mal good grief I’m56 next month and have zero grandchildren - mind you my kids are 23, 22 and almost 14 so don’t really want them yet. Christmas and birthdays must be a nightmare for you finding all those presents. Still I bet they are all lovely and special in their own way.
Have had poblem with my veins this week my gp thought they would delay my last epi but my clinical trial nurse thinks they may well go ahead as its may last epi. I do hope so. That will teach me to book a week away wont it and I have great faith that thw weather will be glorious ??? It must be my chemo brain as the weather has been attrocious here for the past 4 days. it’s even been too wet to bring my washing in to redo it.
Tale care all and have a good weekend -
I’ve got my oldest daughter home for the weekend, she’s doing a 10k run on Sunday for our INVERNESS MAGGIES CENTRE. She suggested that I tried it !!! Don’t qite think she understands TIREDDDDDD
Liz
Come on now - get your trainers on! 10K easy! Don’t know about you but couldn’t even walk 2k at the moment.
Yep you may have a while to wait for grandkids. They are great, and the best bit is they go home. You’re right about Christmas, we already have boxes galore stacked in the garage. Wouldn’t have it any other way though. It’s lovely on Christmas day when they all come round (just need a bigger house).
John - forgot to say enjoy your gig and your ‘man day’. Just remember to stay sober! It’ll do you good to have a little time on your own.
The gig has been cancelled due to ill health !! I am jinxed because in the Spring I went to see a band in my home town of Liverpool and it got cancelled for the same reason.
Mal,whats a WLE ??? Hair is a sore point,nothing visible but eyebrows still molting. Pleased to hear that you have a shadow though.
Liz, I think Mal has got yours and Sue’s share of grandkids because we dont have any either. I am hoping our daughter comes up with the goods in a couple of years.
Thanks for the link Ann. You’re like some guardian angel figure popping up when info is required…saturday’s lottery numbers ???
Day 90. Hello one and all. Two days left of the 2nd lot of Xeloda and still manageable. Sue has only recently felt a bit of a tingling sensation on the soles of her feet,which are a bit red and she told me today that it is slightly uncomfortable to walk. She still has that slight cold and wears a couple of cardies in the house alot of the time. I have finally noticed a fine white growth appearing on her head,she says that I’m only saying that to make her feel good !!
Sue has also got a 2 custard tart a day habit which she says she can live with.
I hope and pray that all is well with everybody out there. Take care of yourselves. John
Was wondering how Sue was getting on. Thanks for the update. I’m 3 days into my 2nd lot of Xeloda and doing OK. Do have constant nausea, which is sorted by pills and my hands are a little red but much better than epi. They did suggest reducing the dose slightly which I refused but maybe I’ll take them up on the offer. You’ll have to keep an eye on Sue’s feet and tell the hospital.
Is Sue’s appetite better now then? Mine still isn’t back to normal. Like Sue I’ve also got some down on my head. Even my OH can see it now. Is Sue venturing out a bit more?
We can finally see some light at the end of tunnel.
Hiya Mal, pleased to hear things are ok…ish, the constant nausea doesn’t sound too good though,hope it improves. Sue’s appetite is a bit erratic still. She’s still on the crisps,which she never ate before. She has even had an occasional glass of wine lately,she says her chemo mouth is not so bad now.
We’ve been enjoyoying the sunny weekends of late (it has been sunny in Devon !!) and been out and about. Sue is back to shopping now although she doesn’t browse,it’s in and out if you know what I mean. We haven’t been to a cinema since all this started,we used to go nearly every week.
Sue still has that urge to rip her turban off !!! We had a pub lunch a few weeks back and the meal was a bit slow in coming. Sue got all uncomfortable so we ended up sitting in the beer garden with our meals. I’m sure things will improve.
The main thing to me is that we have started making plans,talking more ablout our daughters wedding and laughing more. Yes,there does seem to be light at the end of the tunnel.
I cant wait for 2009 to arrive,we’ve never had a bad year in our 35 years together but we wont forget 2008. Take care of yourself. John
Sue sounds so much better & getting out and about more. So pleased for you too. Know what you mean about making plans. I couldn’t think about the future a few weeks ago but now… we’ve decided to take early retirement next summer and are planning a holiday touring Italy. Maybe even a trip there on the Orient Express.
2007 was a dreadful year for us. My father was diagnosed with terminal cancer in March and I watched him deteriorate slowly over the months until he died in September, Three weeks later my father-in-law had a stroke and died. We were thinking that 2008 couldn’t be any worse! But here we are raising a glass to 2009! The list of ‘things to do in 2009’ is growing by the day!
Day 115. No apologies for not being around,there’s not been alot going on. Sue has just finished her 3rd xeloda,one more to go and then 3 weeks of rads.
Her head is full of hair ,a bit dirty greyish but then we didn’t expect the dark brown of her youth !! She says the headgear is going in a couple of weeks. Sadly, she has hair growing on her top lip which wasn’t there before. It seems that the medication messes with your hormones,however,Sue is planning a spot of Laser Treatment when her chemo is over. Her feet and hands are still tingly and sore and she cant walk long distances (although shopping is not affected ) and she still gets a bit of nausea. Sue was never a moaner and maybe she has got use to the minor side effects.
Sue and I have had a “comfortable” few monthes of late following the initial trauma in early Summer and I may have taken my “foot of the pedal” lately. We live in a quiet part of Torquay where the majority are retired. One of our neighbours passed away 2 weeks ago,she was 78 and had been ill for awhile with stomach cancer.
Another younger lady who lives 2 doors away has been fighting breast cancer on and off for over 20 years. We came home last Wednesday after a week in Liverpool to find that she had died after a short illness. She had been on radiotherapy on her spine BUT we spoke to her 3 weeks ago !!!
Sue seemed to take this in her stride,she was saddened of course. I cannot believe that there are 2 men laying in their beds at night without the women they have lived with for over 50 years. They live within 100 yds of me and I am so sad. If there’s a God,why has he give us this sh*t ???
Day 119. went to see the oncologist before Sue’s final Xeloda. She told him that her feet and hands were still sore , even after reducing the last dose. Tact guidlines advise not to have the 4th dose !!! So, chemo over,now ade cision has to be made about radiotherapy. Initially, Sue was not supposed to have rads BUT the onc changed his mind because the tumour was on the large side. Bacause the treatment is on her left side ,there is a chance of damaging the heart, he said he was 53/47% in favour of having the radiotherapy…will she or wont she ? Sue will be reading the factsheets tonight.
Hi John and Sue
glad to hear all is well, good luck with the fact sheets. Sorry to hear of lost friends, I heard a chemo buddy passed away last week it was a horrid shock as she was doing so well. I am back on chemo so the bit of muppet hair I have will soon be all over the house. Bought a nice new wig so I am prepared if I dont cry this time it will be a first.
Good luck.