Hi All,
Thanks for your lovely comments - it’s great to keep up with each other, and take it in turns to be up and down!
Dawn, Hi, sorry you’ve been having such a tough time. On the subject of steroids…I was sobbing at church yesterday (as usual) and a lady came over to talk to me who’s also been having chemo recently. She pointed out that steroids are notorious for making your emotions go haywire. I didn’t know that, but I certainly feel a bit weird emotionally when i’m on them - not just really down but sort of out-of-control, i can’t explain it, but it’s not in the same realm as my normal emotional experiences. So as well as being kept awake and buzzy when we’re knackered, they can also be held responsible for our wayward emotions. I suppose it helps to know!
Anyway, love to all of you and keep on being amazing
Jacquie xx
Oh yes and, Kay - i can’t believe your work colleague. What a cow! So glad you’re being supported by your boss. I’m a paediatric OT, by the way. I work in a CDC, but I’m off at the moment - they won’t let me near the kids cos of the risk of infection, so i don’t know how you’re getting away with it!
Keep enjoying the kids and stuff everything else.
Love Jx
Hi All,
First of all welcome to all the newcomers, we will be able to field a whole football team at this rate!
Back from a very lovely but tiring weekend but can’t believe its chemo day again tomorrow. At the moment I am feeling about the healthiest since May, its really nice to have a bit of energy again…I am sure it won’t last.
Wisdens- glad you are all sorted with your Hickman, I am sure it will help in the long term. I have a PICC line which is great, its so nice not to get stuck with a neddle/cannula all the time.
Dawn- hope you are feeling better after the Tax, I hope I don’t need it in the future as it sounds rather nasty. Steriods made me quite yucky too, also I had to get up in the middle of the night to eat something or I couldn’t sleep but didn’t want to eat either!!
Take care, everyone
Allie
Started my taxol today with loads of steroids… wonderful treament OH bought me a DAB walkman so I just listened to radio and let the nurses get on with it all coffee and tea etc all came round and sandwich for lunch it was really a good experience, tomorrow have the avastin and scan so shall try to look fwd to it… maybe the sun shining helps. They have changed the regime so that I have to have it wkly 9same as you I think Kay) so hope that I can get to work. As I am on hols at moment I feel a bit drifty without a purpose and having to have so many hosp appts.
Hi Wisdens,
Just thought I’d chip in as I was having weekly taxol over the summer and have to say i didn’t feel too bad. I had it on a monday, and the thursday tended to be my worst day - sometimes I couldn’t get going and just had to sleep all afternoon, other times I could keep going with just a sit-down. Most days though, I felt pretty normal, so you may be OK to keep working. thought you’d like to know, although of course, we’re all defferent.
All the best
Jacquie x
Hi all
Really glad, Wisdens, that the Taxol went well today - hopefully the Avastin tomorrow will be an equally “good” experience. As you know, I’ve been able to carry on working even with the weekly regime - some days easier than others but there hasn’t been any day when I’ve felt unable to go in. So hopfully you also will be ok.
Still having problems with my colleague - she seems to really have it in for me and I can’t understand why. She was off work sick herself (because of stress, perhaps not surprisingly) earlier in the week but not sick enough to stop her sending me several quite vindictive emails. Luckily my boss continues to be really supportive (as are my other colleagues who know about the situation) but I could certainly do without it - I don’t feel anything like as emotionally secure as I normally do. Maybe I should blame the steroids (as well as the rollercoaster). And it’s taking a lot of my enjoyment out of my work at the moment. Still half term next week and we’re off to Amsterdam for a few days (it’s my week “off” chemo) which should be great. Maybe it will all have settled down by the time I get back.
Not sure how I’m being allowed to carry on working with the children either at the mo, Jacquie - they’ve all got snotty noses, bless them! WHo was it who told you you couldn’t work? My onc has always been very supportive of me continuing (though I do sometimes think he has no idea what I do as a speech therapist with preschool children!!) but Occ Health were certainly less keen. I’m under strict instructions from them to take time off if my white blood count is too low - but I’m lucky enough to have a neulasta injection when that happens so I tend to ignore that a bit as well! The teacher I work with is great and she makes sure any child with a really grotty cold etc is kept at a distance!!
Hope you are feeling better Dawn and the children aren’t keeping you awake at night.
Take care all - and enjoy the sunshine whilst we have it! Kay xx
Thanks Kay for your good wishes… the sun is lovely. Thanks Jacksy for tip on side effects I’m lucky that OH does all thework in the house so can rest/sleep when not working.
KAY Re work colleague - can you set up a refusal on your e-mail with a curt reply … ie automatic so that unless she can send something positive and constructive you don’t have to see it. Keep a good record of these e-mails. We have a bullying policy at my work I suggest you look into it also the discriminatory law … some of the women on this site might be able to give you some advice as I think some work in HR.
Re infection my ONC said I was more likely to get infection from the bad bugs in my own body… other things are gardening and pets… I did have a few bad neutropenic sessions but only a couple of infections which were in the line… just keep washing hands etc and you will get a rest from kiddy bugs in amsterdam… lets hope this weather is good for the half term as well. The frost should have killed off some of the bugs lying around.
Hi Everyone
Wisdens glad to hear that the taxol went well today and as Kay says, hope the the Avastin tomorrow will be an equally “good” experience. Onwards and upwards.
Kay, I cannot believe your work colleague - don’t think I would cope with it like you are, as emotions everywhere. Can you not get your boss to sort her out. I would definitely keep copies of all the vile emails she is sending, in case you ever need them. Hopefully you will get this sorted out soon enough. Amsterdam - wow- hope you have a fantastic time there, and get some rest and lots of fun too!!!
I am pretty good right now, come through my crap week from taxotere and body near enough back to normal now, apart from the cruddy mouth. Feels really yuk, and the first few mouthfuls of food are not nice, but managing to still eat lots, which is good news, dont wanna start losing weight just yet. Think I told you put on a stone since starting chemo, so now weigh 9stone 1lb.
Doing OK with kids too. OH back to work yesterday and we are pretty much back to normal routines now. Not sure what gonna do for half term, probably go insane!!! Will be coming on here screaming I reckon.
Second that comment about the weather wisdens, be lovely if it continues for next week, make things a bit easier.
Jacquie and Aliie, hope you are both doing well and ok and catch up with you both soon.
Take care
Love
Dawn
x
I have found it very uplifting to read all your messages it cheers me up when I am having a bad day
I am on Taxol but find it difficult to tolerate, nausea, exhaustion etc. Despite the Taxol I have developed a liver and new bone met. Like Wisden I am trying Avastin/Taxol but having to fund it my self
Has anyone successfully persuaded their NHS to fund it? I have had chemo (EC) previously so I don’t fit some of the criteria. Would love to hear from anyone who has taken on the NHS and won
Good luck to all of you and keep writing so I can read and feel cheerful once again
mills
Hi all
Sorry Mills- not feeling particularly cheerful myself tonight so may not be an “uplifting” message. My colleague is continuing to grind me down - 2 more emails today sent to my home address (I don’t work on Thursdays) accusing me of showing her not a “crumb of kindness” (her words). She’s been off sick earlier this week (because of stress/depression) and clearly I am supposed to have been more supportive of her! Not that I think I have been unkind at all - I’ve just not mentioned her being ill in the couple of work emails I’ve sent (very matter-of-fact). I’m not sure how much more of this I can take - my boss has actually contacted HR for advice but clearly has to tread carefully when my colleague is also unwell. I got very tearful about it all again this afternoon and just kept thinking that I couldn’t deal with this on top of all the cancer issues/treatment etc. Feeling a bit better now and am trying hard not to think about it and focus on other things. Going to Amsterdam on Sunday will certainly help. And all your support is great too - I begin to question otherwise whether I have overreacted to things.
Interesting what your onc has said about infections, Wisdens. I’ve got a portocath which minimises the likelihood of infections there. Must admit we have 3 cats but have become slightly obsessive about washing my hands both at work with the kids and at home! Hope the Avastin went ok today,
I haven’t heard much about getting Avastin on the NHS at all, Mills - I’m on Taxol/Avastin weekly but privately (medical insurance). If there have been any cases yet of people taking on their PCTs to get it, it’s not been well publicised which I would have expected given the Herceptin cases.
I’m with you on the eating, Dawn. I can’t work out why I’m eating so much when everything tastes pretty vile - perhaps it’s the steroids! I haven’t put on a stone yet but I was nowhere near as light as you to start with and putting any weight on is a bit of a disaster!!! Still definitely not the time to diet!
Hope the rest of you are all doing well. Kay xx
Hi Everyone
Well hope you are all doing OK and that the sun is shining where you are too … and that you are enjoying it.
Wisdens, hope you are OK today and that your chemo went well today, as think you were having another session today of avastin. Good luck with it, if not already done it.
Kay, so sorry to hear about your colleague, hopefully your boss and HR can sort it. I cannot believe that someone can be so nasty knowing what you are going through, no matter whether they are in a depression. You need support, love and friendship, not bitchiness. Have fun in Amsterdam though and we will look forward to hearing all about it on your return.
Hi to you Mills, and welcome to this little gang. We try to help each other through this and no doubt you will be joining in with fun and laughter and support. Whatever it is, we are here to help each other. Must cost you a fortune to pay yourself, I can’t believe that you can’t get it on the NHS. I am on taxotere now, just finished 3 x FEC and had first tax last week, which absolutely knocked me for six, and thought I would get away with it, as had been so good on FEC.
Glad to hear that you are stuffing yer face too Kay, makes me feel less guilty to know that someone else is the same.
Allie, hope Thomas is loads better now, and you are all getting your sleep and that life is now back to normal.
Jacquie, hope you are good too, and that you have a fun weekend planned.
Take care all, off to sit on sofa while Jack still sleeping and Sophie at preschool.
Lots of Love
Dawn
xx
to Kay ans Wisden I hope you are feeling better today
Mills
Is anyone having Taxol/genicitabine treatment. My onc has suggested it as an alternative to Taxol/Avastin as its free and outcomes are similar
hi all
Had my avastin yesterday all ok had a scan and await results of that… not so well today that old liver seems to get bigger and my mobility is worse can’t go up hill or steps unless ther is a rail…I think it is the side effects of the last chem in that my hands and feet are sort of numb and it has spread to my legs. like the rest of you I am starving trouble is there is no room in there for food… I get these awful sugar cravings and I definitely can do without the extra weight and the steroids give me a hamster face ugh… however no awful side effects yet apart from taste but used to that… got another wk on hols so hopefully will get a bit better to return to work at the beginning of Nov.
Sorry doom and gloom… on the good side I have got free tax disc and get a refund of the old one as now classed as disabled as getting DLA am applying for a blue badge as well… didn’t know all this existed.
Kay keep that chin up rise above it all and enjoy that break.
Mills that regime was discussed for me so hopefully you can use that as it must be prohibitaively expensive but your life is more important I am sure the onc will be able to give you the facts but in the end they are statistics and if you are the ONE you are the ONE ( sorry bit of a fatalistic) .
Dawn you sound upbeat and looking foward to a hectic half term with the little ones.
Must go and order my meds on line from the surgery, great service!! Don’t have to go anywhere or do anything it is all here on the internet… perhaps I need to get out more!!!
Love to youall
Hi everyone
This is my first post. I was originally diagnosed in 1995 and then in 2004 with spine mets to start with and then 3 weeks after that found out it was in my liver. Had radiotherapy and chemo at that time. Had been on tamoxifen for 9 years (as I’ve got a family history - waiting to see if I’ve got the BRCA1 or BRCA2 gene), then switched to Arimidex, when that stopped working was put on Exemestane. That stopped working last September and my onc said I needed to put my affairs in order. She also said that I could try capecitbine (tablet chemo) but she thought, given the state of my liver, that it might not work but I decided I needed to give it a try and here I am a year later, still on it and still improving. I went down to 7.5 stone and am now back up to my normal weight (9st) but it’s been a long journey both physically and mentally.
I used to be a HR Manager but had to give up work 3 years ago because of my spine mets. I read Kay’s postings and although she might not want to go down this route but there should be a grievance and disciplinary policy which you could look at. Also, we are all covered under the Disability Discrimination Act and although your manager is supportive it sounds as though she’s not totally in control of this as you are being harassed by this other person at home via emails which is totally out of order. I created a website for our support group (www.pbcsg.co.uk or www.peterboroughbreastcancersupportgroup.co.uk) and there’s a lot of information-sharing on it. One of the websites you might like to look at is related to discrimination at work and the link is www.pointofdiagnosis.org.uk Good luck!
Also, regarding DLA and blue badges etc - if you are eligible for the higher rate of mobility you are exempt from road tax duty. Also we’re entitled to a disabled railcard which gives a third off travel for you and a companion. I think it costs around £20 a year for this but if you use the train a lot it’s worth it. Also (and I’m not sure if it’s in all areas) but you can apply for a free bus pass (this is the case in Cambridgeshire). One thing I’ve realised with parking with your blue badge is that it’s okay for us to park on double yellow lines which are on the road but you can’t park on double yellow lines when there is also two yellow downward strips on the kerb - is anyone else aware of this?
I’m also a member of our local and regional cancer network group where we look at improving cancer services. One of the areas that I’m involved in at the moment is palliative care as I feel very strongly about this and that we, as patients, don’t always get to know about things.
I’m now 52 but had just turned 40 when I was first diagnosed with a 6 year old son. I wonder sometimes how he deals with it but he won’t really talk about it as all he wants to know is that I’m going to be okay. My cancer came back the week he started his first year of A levels and then last year he’d just started at uni (seems to be a pattern here!!).
Am going to the ‘Time to be Heard’ event this coming Wednesday and hope to meet a lot of you there.
xxxx
Hi All
Just wanted to reiterate what pinkdove said, I now get the hight rate of DLA, and since getting that a few weeks back, have now had my car tax paid for the next year, and the form I use is valid for 3 years, and I also now have a blue badge. Must say have had lots of people staring at me parking in disabled spaces and getting out with a toddler and a baby (only got it tuesday), and sometimes makes me feel a little uncomfortable, as yeah, I am not disabled, but if I am having to go through all this crap, then why not take everything I am entitled to!!!
Hope everyone is good today. The sun is shining again. Have to say two muppets driving us mad today, and god help me, but it is half term this week too, so who knows what state we will all be in by next weekend.
Wisdens hoping you are good today and your liver is not giving you too much trouble, I hope your treatment works for you, and that you are having a good weekend - have you got the grandchildren around this weekend?
Allie, hope you are doing good and that Thomas now heaps better and your weekend going well.
Mills, hope you are ok today.
Who else, brain gone dead, and can’t be bothered to go back and read on other pages.
Kay, how are you doing and, oh yeah, just remembered that you are in Amsterdam - hope you are having a fab time …
Jacquie - same for you, hope your weekend going well, and that whatever you are doing you are having a fab time.
I am a bit bored today, as if go to shops, daughter is “I want that, I want that” or “I want a present” - drives you mad … and really dont’ have lots of energy today to go out far. Had another 4th birthday party yesterday and had to take Jack as no-one to look after him, so up and down all the time chasing him round to make sure no 4 year olds beat him up or fell on him etc … boy does he keep me busy!!!
Anyway, am dribbling (as usual) - hope all ok and catch up soon. Got that onc on wednesday, and starting to get nervous … then in 11 days got my 2nd taxotere … now that one is scaring the sh*t out of me, in case knocks me for six again.
Speak soon and take care all.
Love
Dawn
x
Hi Dawn
I have exactly the same reaction when I use my blue badge and it’s mostly from older people who are disabled. Just because I don’t walk with a stick or in a wheelchair (although I was for 3 months last year) doesn’t mean that I don’t have problems.
I actually had one man and his wife go up to a Tesco employee last year to say that I shouldn’t be parked in the disabled bay (they obviously thought I was misusing it) but she put them right! Also, there are loads of people who don’t have an outward sign of their disability such as people with heart problems etc.
One of these days I might well let rip on some poor unsuspecting person who gives me a dirty look…!!!
xxx
Hi guys and welcome to pinkdove and her invaluable info just waiting for train and blue badge… good job we live in a bungalow… having trouble getting up the steps to front door, not so bad with rails. Mind you other people just think I am a silly old lady (kids and OH try to protect me but prefer to feel in control not under theirs)
Feeling a LOT better as have upped my fentonyl patches so have asked for more… will be flying… got chemo mouth but if you keep eating a little of whatever (ginger based or sugar based)you get rid of taste unfortunately you also get BIGGER!!! I also take every type of anti sickness pill on offer as I DO NOT DO SICK!!
Have a good day everyone. Don’t worry Dawn we’re all dribbling or was it the kids or was it drivelling must try to get grey matter in order
LOL
W
Hi Everyone
Hope you are all OK and doing well. And anyone having or had treatment this week or scans or anything really is good too.
Well do you want to hear my little saga … no … oh … well gonna tell you anyway, so sit back and here goes (sorry if bore you too much).
Yesterday had to have a lovely smear test, but the nurse was so lovely and nice to me. She took so much time talking to me about my chemo and my cancer, and said if I ever need to talk then can call her, as got no-one around really apart from my friends. She didn’t even realise my hair was a wig - now that was so good!!! But it was actually really nice talking to someone who doesn’t know me as such and she said how positive I was about it all.
Then had to go and see my oncologist later in the afternoon, but alas, he really wasn’t interested in talking to me, he sat on his arse, in another room while his registrar came to talk to me. Apparently my lumps have shrunk, and when I asked how much, said he didn’t know!!! Very non-committal these lot. Going to get me to have ultrasound on liver and then can assess whether can have ablation or resection (but if say no, we are definitely going for second opionion). I asked about Herceptin, apparently am sensitive to it, but have to do something called a FISH test (what the blimin eck that is I have no idea) and if that is positive, herceptin here I come. But apparently Herceptin does not have a barrier to stop it any spreads up to the brain. Uummmmmm
What else … can I drink alcohol - yep in small doses, as won’t have much affect on my liver to be a worry … not had a drink since 26 July!!! Saw went out and bought a bottle of wine, but not opened it yet, probably wait for weekend!!! Masectomy - not an option as on my liver, so wouldn’t make no difference, think he meant wouldn’t make a diff to my life expectancy, but didn’t wanna say that.
Anyway, think that about covers it - didn’t really come out feeling great, rather deflated actually, as not giving much away for me. But hey ho - there is shrinkage which is good news, so hopefully means liver responding same way.
Hope I haven’t depressed anyone too much. If any of you are still awake that is …
So not sure really how to feel about it all … don’t really feel my onc is that interested and I think he is very rude not to actually come in and talk to me himself. Am I being to sensitive? Feel a bit deflated today too, I know there is shrinkage, but I think that they should have been able to tell me the percentage.
Anyway, sorry to have rambled on and as I said, hope you are all ok. Half term - only 1 day to go - yippeee. Not that I don’t love having my little girl at home, but it is so nice to have peace and quiet in the mornings, love her, and she needs it too, as helps burn her energy. Have been out everyday this week, but no plans for today.
Speak soon and take care all
Love
Dawn
xxx
Cheer up Dawn … I had saga too yesterday… glad to keep your boobs girl I think once you have secs they like to see what the treatmentdoes to the cancer so that they can keep track of things and if you have no boob bumps to look at… I just wanted them to take my liver and bone mets away the surgeon said she’d love to do it but my body would collapse as bone meds not in a good place haa haa did she have a sense of humour… she really is my fav person always has time for me as my onc does although he is on hols at the moment.
Do you want to hear my saga NOOOOO well here goes. Arrive 9.15 bloods ok but breathless better see a doctor, start steroids anti sick etc and have a reaction dr called… have TAXOL very slowly all ok. The dr takes me fora walk to check how breathless I am… couldn’t refuse the nice young gent. Had to have Chest Xray and ECG heart ok fluid around lungs… no onc consultant around so they will give me antibiotics and chase consultant to see before next week’s chemo. Escaped at 3 pm very slick visit and they did look after me and my steroids have given me a spin.
Grandaughter visiting so a spin is required.
Hey Dawn if you have shrinkage it may be all go to do something wiht that liver… yipeeee
Have you drunk that wine yet
W