Hi Itsmelou, welcome to the forum.
You asked about working. I have continued to work between treatments, but from home rather than going into the office - this was my choice as it gives me something to do and a sense of things carrying on as normal, otherwise I would have been admitted to a secure psychiatric ward by now! I am an engineer, and I write safety cases for the nuclear industry, and manage a team of 7 other safety people. Work have been amazingly supportive - my IT is set up so that I can access everything from home, and I have been dialling into meetings rather than attending them in person (probably a good decision judging by the number of people coughing and sneezing when I dialled in). All the stressful and time-critical parts of my job have been delegated to other people, because although I have not had problems so far, I am aware that I might get neutropenia or some other problem at any time that might put me in hospital for a few days, which would be a problem if people were waiting on me for urgent work stuff. I have not worked for about 5 days after each chemo, but my chemo is scheduled for Thrusdays so the worst side effects are over the weekend. I am also allowed time off for medical appointments which I don’t have to book as sick leave or use up my annual leave for.
Having cancer has made me rethink all my priorities, and I might give up my management post when I go back to work properly as it was stressful and I was having to work crazy hours to keep up with everything. I am now working a 37 hour week without the 3 hours commuting each day and without having to work from home each evening.
Hope everyone has a nice weekend. I am on leave today - going into town to get my wig trimmed then going out for a pub lunch with hubby and friend.
Squeakymouse xx
Hello everyone,
Doggirl, hope you are ok after your Fec2.
JosieJo75, my hair is going now and my hair brush looks like a hairy rate. Not sure when to shave it off though.
Harryduck, hope all is well with you today.
PolarBear74, I so sorry to hear about your secondaries. I was diagnosed with bone mets at the same time as my primary. Didn’t have chemo at that point just tamoxifen and zoly for bones but it then decided to wreck my last ovary which I had removed in April. They weren’t sure if it had moved to my liver so that is why I’m now on 6 lots of Taxol. Yes, the treatment is the same wherever it is as it is all the same buggery cancer cells. There are an awful lot of treatments to keep secondaries stable but yes it does take a while to get your head round and carry on regardless.
Rattles, sorry to hear about your reconstruction. I was going to have one but since it had spread to my ovary so I’m not sure they will bother now.
Itsmelow, neutropenia, yes I had to go into hospital last Friday night for a few days as I had a temperature. They gave me some blood to. Came out on Monday feeling much better. With regard to work, I worked all through everything previously but took time off for my recent op and decided to not work during chemo. I work in an open plan office and was worried about infection. I caught flu from a work colleague about three weeks before my op and that really put the boot in for a quick recovery, knocking my red blood count down to 7.5.
Anyway, I’m off to the hospital to buy some scarves. I haven’t got my next treatment until Wednesday and plan on enjoying tomorrow. Getting some friends round and hopefully sitting in the garden till dusk.
Hope everyone is coping with side effects.
Claire
Hi to everyone. Hope everyone as ok as you can be and SEs are not too bad.
Had 2nd chemo on Wednesday and had my head shaved! I had washed it that morning and it just matted together and I was gently trying to seperate it all and knew it was going to come out. I also looked like comb over man! As there is an NHS hairdresser at the hospital who I was due to pick my wig up from that day I got him to shave it off. This may sound odd but it was quite liberating. I had been so worried a lump would fall out when I was in public that it was a relief.
I left the hospital in my wig, quite self conscious but at least it got the first outing out of the way. I kept it on most of the day but have been out in bandanas too. (I heard a lady in the waiting room just after I had mine shaved saying exactly the same as me about it being liberating). Not saying I won’t have a melt down when I come of the steroids again but haven’t cried yet. My OH hasn’t seen me bald yet I don’t know if I can let him. Does anyone else feel that way?
Also wondered if anyone has been the same as me regarding the following? Monday I had ONE glass of wine with my lunch. The next day I was vomiting and had the worst headache in history. Told my OH it felt like a hangover! Was worried they wouldn’t do my chemo the next day. Told the nurse and she said it can affect people that way. She has had a few ladies that thas has happened too! Rubbish! Certainly put me off ever trying again.
Regarding the working. I have gone in on the week before my next chemo and the two days before it if that makes sense.(I have it on a Wed). I just found out I don’t have to put hospital appts as sick leave. I only get 30 days sick pay so that is partly why I am going in but also because I think if I have six months plus off I won’t want to go back as all this has made me realise how many hours I am actually in work and I have seen my son so much more. Makes you realise what is important.
Off to see Coldplay tomorrow in Manchester City ground (so much for keeping out of big crowds). Wig or Bandana? Decisions…
Good luck to everyone and try to have a good weekend.
Alesha
Hi all,
Sorry that rattles and Polar have had crappy news. Am seriously not liking this cancer lark.
Welcome to the gang itsmelou. I was neutrapenic too. Have just had FEC2 on time all bloods behaving glad to report. Had a Picc line too although they tooh it out and I am getting a new one Wednesday. They are that attractive and it wasn’t a good look with strappy tops but nice not to be pin cushion.
Am feeling less zoombie after number 2 than one am glad to report. And no sickness. Have ditched the steroid ones am sure this helped.
Have to work through my chemo as self employed. No work. No pay. Other half also self empoohed and there is not much about so very poor at the moment. Am using head in sand approach! la la la…
Lots of love to all
Sarah x
Hi dog girl, glad number 2 went well. Did you ask to ditch the steroids or did you just do it? I’m due to have my second one on tues and am dreading taking them again.
Feeling ok at the mo, but my scalp is sore. Holding on to the hair at the mo, but have a big bald patch behind my ear. Think I will get oh to shave it this weekend. Eeeeek x
Hi jo,
Have been naughty and just not taken them. Will ask the onc if that’s a problem next time. Now that I have narrowed it down to them. Haven’t had nausea or vomiting like last time. I went straight back to work this time. There was no way that I could have driven on day 2 on FEC 1. I did sleep A LOT yesterday! If you ask your onc let me know the outcome?
Shaving was upsetting for five mins and now feels so nice not worrying about clumps falling off! I have a stubborn bit above my ear that didnt go bald but the rest is pretty much gone. Downstairs is now resisting lol!! GOod to share 
Sarah xx
Hi everyone, hope you are all ok , had to see the doc today have a throat infection and now on antibiotics, chemo nurse called and has cancelled my chemo next week as antibiotics wont be finished 
feel rotten now, just want this to be over ,
love and hugs to everyone xxx
Hi all
Hope you are all well today.
Hair definitely falling out now - my scalp feeling a little sore too. Going to resist shaving it too soon as I have this little hope that it might not all fall out. I have a really thick head of hair. Have my wig and some fab bandannas on stand by. Also my lovely hairdresser has offered to come round to my house to shave it for me when the time comes.
doggirl - I too am self employed so no work also = no pay but luckily I have income protection insurance which has been a godsend as my husband is a full time stay home dad. So lucky for me he is around for all my appointments and to take care of the kids when I’m feeling rubbish.
I am loving being off work, I have been off since diagnosis in February. It is gonna be really hard to go beck to work, which will probably not be until the end of the year.
Hope you all have a good weekend
itsmelou x
Hello itsmelou , wlecome to the buddies thread!
Ginger- so sorry about your sore throat. There is a fair few of us who have had delays now. I think if you expect at least one it isn’t quite so devestating. I am trying to follow this advice (it is so disheartening) and took my daughter out for hair-cut/new shoes treats etc.
Doggirl/Jo - I completely understand whyyou hate the steriods They are def. the worst. I was told it was really important to take them (dexamethasone?) as they are involved in the take-up of the chemo as well as the other drugs and SE’s- I am not explaining it properly. I know I am on a different regimen so maybe its not the same for you but would say it is important to be careful and check first. Anyway, great that you feel better this time Sarah. Is your cold better Jo?
Once again, started writing this post and can’t go back to remind myself of what everyone has been saying. Hope everyone else is doing okay. I wanted to ask- who is having 4? 6? or even 8? I am sure you all said but I can’t remember.
Weather wild here. I was expecting to wake up in Oz this morning!
Take care to all, Rattles,
Hi everyone , ended up in hospital last night, doc phoned at 7pm to tell me neutraphils were low , then out of hours doc phoned to tell me to come to hospital , neutraphils down at 0.3, not a happy bunny, let me home today as long as I promised to stay in bed and not do anything ( do they know how difficult that is for me ) so bored silly, hair has been coming out thick and fast think the stress doesn’t help lol , hope you are all having a good weekend.
love and hugs to everyone xx
Ginger- sorry you are having a rough time and having next chemo delayed, it’s very frustrating I know. Important that you feel well going into next chemo though. I had FEC2 on Thursday and have felt pretty grotty/sick /tired since and that was after a weeks delay!!! SEs seem worse for me this time. Hope your throat feels better soon , Em Xxx
Rattles- forgot to say I am having 3xFEC followed by 3xTAX. Having chemo before surgery, probably mx and maybe rads too.
Hello buddies,
Ginger- sorry about your sore throat. I agree. Its boring being ill. I only have to look at a box-set and I feel twitchy. I used to find ‘Outnumbered’ hilarious until I began watching it back-to-back. Hopefully a couple of days rest and you will bounce back.
Hi Em - I felt worse second time round, even though SE’s were better.I always think that by the Monday you start to feel a bit better. You can hold onto the fact that you only have one more FEC to go…
I am feeling better but so sore not sure what to do with myself.
Rattles, x
Seems we are all a bit down in the dumps. I’m struggling now. Spent most of yesterday in bed for want of knowing what else to do with myself. Feeling weedy and pathetic today and waiting waiting waiting for first injection. I hate not having a time from the nurse. Will defo learn to do them myself just to be in control and not have to waste my precious time WAITING!! Oh has gone to tesco, on his own! Big deal in this household. Could be an interesting shop as a wrote a rough list but obviously I have chemo brain and he has a penis! Lol. He is amazing but not that domesticated. Will be a ready, steady, cook style Of cooking this week.
I hope your neutraphiles start behaving ginger x
And em my fog is later this time round? So much for any planning ahead this year.
Rattles sorry you are sore. It is so so not fair. I wonder what I used to moan about before all this xxx
Have just had emergency Black Jacks. My old uni housemate posted my a huge box of sweets full off black jacks, poppets, fruit salads, maom, flumps, popping candy and other old school stuff. It works!! Feeling slightly better. (don’t tell my dentist) xxx
Doggirl- thankyou, you’ve made me laugh out loud, first time for a few days with your comments of your OH’s shopping trip -haha!!! Gosh it does seem we are suffering at the moment. I’ve got to arrange for my injections which are meant to start tomorrow - did you just call your GP surgery to arrange the nurse? I just hope the SEs from them won’t be too bad…
Hi Em and Doggirl,
Blackjacks - takes you back? Fruit salads? Strawberries and Cream rock my boat at the moment. Cant go anywhere without them. I offered one to a lady coughing at hospital and another lady asked me if they were healthy…(Em - was it you who posted about healthy eating?!)
Doggirl-hope your OH surprises you with shopping.
I caused mayhem with the District Nurses when they were meant to service my picc line- I didnt realise I was supposed to wait in all day for them! Then they said they would come at 1pm, so when they didnt, I set off for the hospitall assuming they werent coming after all. Then she phoned at 6pm!! Needless to say, they wouldn come back after that!
I feel fine, it is just that I swell up even more when I move…Sorry- no-one else to tell.
Keep going…
Rattles, x
Doggirl that also made me laugh out loud. My oh comes home with a bag every now and then that contains a french stick, Razer blades, Orange juice,a bottle of wine and a newspaper. I call it his ready steady fec that bag! Sorry very rude! Im sorry your all suffering. Im on my good week but dreading next thurs. They are gonig to put me on extra drugs because of allergic reaction last time. Hope its piraton as it makes me sleep! Wouldnt it be great if we could sleep through the first week then live our lives for two weeks.
Rattles when do you find out more? Im sorry your sore.
Emylou you just phone the docs and they should arrange for the district nurse to call each day. I have no idea what se are from them or the chemo or steroids so cant help with that. A friend who is a nurse told me these injections cost £800 each… OH worked out thats £32500 just for those for my treatment. I am very grateful to the NHS.
Ginger really hope your feeling better today and not to washed out.
I have been to my mums for fri and sat and had a really nice time. Felt like a weekend break! Even went shopping on sat to get Elizabeth the next size clothed 0-3 months. She is growing so fast. such a shame i have to have chemo while she is changing so much but at least she wont remember it at all.
Such a shame that we aren’t local to one another I could pop round with my emergency crate of sweets. X
I have just had my first injection. The hospital sorted out the district nurse for me. I know them quite well from my PICC line and before that I had an operation on my bum (tee hee) they had to change the dressing and pack the wound daily. So it is nice to be seeing their face this time round. When I pointed out to the nurse last month that we’d already met she said ‘bend over’ followed by “Ahhhh now I recognise you”.
She is great medicine. Cannot be doing with too much sympathy.
Anyway I do digress as per. The injection was nothing too tricky. Am going to do mine tomorrow with nurse holding my hand. So good luck em. I was given the choice of my practice nurse so I’d call them first thing if you’re not sorted out.
Keep posting before I am done! Still got to read harryducks update. Wow we are getting our money’s worth. LOVING THE NHS. Elizabeth is doing amazing. Feel like she is Darling Buds mascot. Always makes me smile seeing yours profile picture xxx
OH did well. Did see a sneaky pot noodle… But have just eaten crisps from a tube so am happy bunny (buddy).
If I’d seen rattles post would have sent him on hunt for strawberries and creams as they are healthy…