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Diagnosed yesterday - straight to chemo - aarghh

32 REPLIES 32

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo
I found my 'lump' in March 2011 and just 5 weeks later had my 3.8cm HER2+ removed via a mastectomy with immediate reconstruction, followed by 6 chemos - 3 FEC and 3 docetaxels, then 15 rads and a 18 sessions of herceptin. My last herceptin was a month ago now and my port came out a fortnight ago. My hair is back and needs cutting as normal and I am now back to having it coloured and highlighted. A long old haul since March 2011, but life is sweet as I await my 1st grandchild just before Christmas. If you get the chance do a 'Look Good, Feel Better' session. Take all the treatment that is offered to you and don't be afraid - it is all doable and you will, like me, come out the other side in due course.
Good luck to you, and everybody else. We are bigger and better than BC
xxx

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Just wanted to say good luck. I've just joined the forum after being recently diagnosed. I am also going straight to chemo. I'm sure you've had your first sessions now and I hope it is going ok.

Re: Diagnosed yesterday - straight to chemo - aarghh

Catzoo,
'what would happen if I didn't go for treatment' is a good and valid question, and maybe this is something you should ask your oncologist. I asked mine the same question and, once they have all the results and understand exactly what you have got, then they are able to give you a sensible and honest answer. If you really understand your choices you will feel that you made the decision, rather than being on this confusing conveyor belt.
So, I'd say, don't let that question fester - write it down with all the other questions you want to ask so that you're prepared for when you next see one of your specialists.
I felt a bit ridiculous asking the question, but I wasn't treated as if it was ridiculous and talking it through really helped me feel in control. The medical profession jump onto getting us treated as they care about us, but sometimes it is so difficult to absorb what is happening, but you must ask if that helps you.
Be kind to yourself
Annie

Re: Diagnosed yesterday - straight to chemo - aarghh

Please don't beat yourself up with "what if" you have made your decision so the sooner you come to terms with it and start to believe that is the best road for you to follow the sooner you can get back on the track to normality. If you are not sure ask for a few more days to discuss it with family, friends and professionals. Be positive as soon as you start the process the sooner it will all be over! Xxx

Re: Diagnosed yesterday - straight to chemo - aarghh

Thanks Carrie. Great to hear that you are doing so well.
My first chemo session in tomorrow. Can't sleep. All sorts of thoughts whiz zing round my head.
What would happen if I didn't go for the chemo? I feel fine right now, worried, but otherwise fit. If I were to ignore my cancer, what would happen? I guess it would spread, but how long would that take? I can't face feeling ill for the next year plus. And still no guarantee of health after all that.
I do know that nobody can say just how long I would continue feeling ok withoute any treatment. A time bomb wait.
I just snapped at my partner when he said to try to smile. He's gone off to bed now. I don't want to be a sick unhappy person.
I know I will go tomorrow, but can't help wondering what would happen if I didn't.

Re: Diagnosed yesterday - straight to chemo - aarghh

Just to say you seem to be being looked after well by your hospital and soon your treatment will start and you can start dealing with it and moving on. Don't stress over the different treatments everyone is having and comparing it to you. BC is very individual and your medical team will plan around you rather than use a one suits all approach. My BC was in my chest wall and 5.5 cm so large too but my consultant got it all out and I am sure they will do the same for you x

Re: Diagnosed yesterday - straight to chemo - aarghh

hi catzooo, got my wig last thurs, but as my hair is white even though only 48 there wasn't much choice in styles unless you want little old lady styles, did try other colours but just didn't look right. so had to go for a graduated bob, with a fringe, which is gonna be strange as i went from almost waist length to just above shoulders 5 weeks ago, still getting used to not being able to blow dry it or use curlers or straighteners, jus wash and leave now lol. had to get a few clips for bad hair days.
big hugs xx
suzee

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi suzee. Yes I will be trying a cold cap for the 1st treatment. Have epilated legs, trimmed lady garden and had hair cut short already. Good to hear your 1st treatment didn't have too bad side effects. Hope it stays that way.
Hi Nicola. Biopsy on boob 2 was done yesterday so no results yet. Not a cyst. It is a well defined lump with clear margins. Unlike boob 1 which looks like a mini mountain range on the ultrasound. Scary.
have appointment at the wig shop this afternoon. I was given a glossy wig brochure but they all look far too old for me. I am 49 but my hair has gone from purple streaks to blonde and red hi lights. My natural colour has not been seen since school. Was kind of mousey. Got a friend coming along, so hope to have a bit of a laugh then a late lunch.
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Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzooo - have you had the other lump confirmed as cancer or are you still awaiting biopsy result? I had a lump in my other breast that turned out to be a cyst. In fact, I have lots of lumps / cysts - they can't biopsy all of them. Have decided to stop worrying about them now. It is possible for cancer to spread to the other breast (cancer can unfortunately spread anywhere in the body via the blood stream or lymphs) but this doesn't mean this has happened in your case. It's sometimes hard to follow my advice but I find it best when I just cope with the facts rather than the 'what ifs'. That's enough to deal with at this time!

Nicola x

Re: Diagnosed yesterday - straight to chemo - aarghh

hi catzooo, i am aslo having chemo first, i found lump in left breast on the day of my days funeral, the day i went to breast clinic at hospital, i had mamograme, which hurt so much on left breast, then ulltra sound scan which i could see on screen the lump in breast and also under arm, and then a biopsy, had to go back for another biopsy the following week as results came back clear but the radiologist wasn't happy with it. then had to have bone scan and ct scan the next week. when i went to see oncologist the following week he confirmed it was cancer, invasive ductal , with lymph nodes under arm and also nodes between lungs, the nodes between lungs have been told is inoperable but hoping chemo sorts that out.
am now 1 treatment down which went well only felt sick and dizzy for a couple of days, but took the meds i was given which sorted it out and felt well enough to go back to work on day 4, was ok till daughter kindly passed on cold and cough so now on antibots and steriods again to try and clear it before next treatment on mon 29.
so it is doable and try not to worry to much and if you feel ill get to doc's asap and not wait like i did lol, felt ill for 5 days before going to doc's
oh and does your hospital do the cold cap, i used this on first treatment and will do so again, its supposed to help slow hair loss down, i'm shedding only slightly more than normal for me, although the lady garden is shedding loads lol.
big hugs xx
suzee

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzooo,

I know it's been mentioned before above, but please do give the helpline here a ring, they're here to support you, the lines are open now until 5pm this evening (weekdays 9-5, Saturdays 10-2), your call is free, 0808 800 6000.

Take care,

Jo, Facilitator

Re: Diagnosed yesterday - straight to chemo - aarghh


Had my MRI yestsrday. Found a lump in other breast so sent me straight off for biopsy on that.
i am still reeling from the cancer diagnosis Just 2 weeks ago today. Now I got 4.5 cm cancer in left, and 1.6 mm lump in the right.
Looks like my chemo will not now start on Thursday as need to check out the other lump and see what drugs it may respond to if it is cancer.
Shocked and scared. I know my lymph nodes are affected. Can it spread to the other breast? i have not heard of that before.

Thanks SIan, it's great to hear you we're in a similar situation and that the chemo has done its job. Sassy too, it's great to know that other ladies have had chemo before surgery And that it went just how the doctors hoped.
Waiting to hear from the hospital now as to whether I go in on Thursday for my 1st chemo. I want to get this started. Am sure that all the prodding and polling is aggravating the tumour. The skin underneath my breast is looking grey shadowy colour now.
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Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo
Sorry for your diagnosis but just wanted to share my story to help. I too had chemo first I am IBC lady who had a large tumour against chest wall also node involvement. Had 8 chemos ( 4 x fec, 4 x docetaxol) then mastectomy I had my results last week and was told that the chemo had killed the tumour and all the cancer in the nodes. So it was all removed but chemo had done its job. So although chemo first is not the most common, its done when needed and does not mean a bad thing. I am now due to start radiotherapy and herceptin. It is all so overwhelming to start with, but once you get your treatment plan and start a routine you will start to feel better. I took it step by step, and this, together with advice on these forums helped a lot. Good luck with everything.
Caroline60..Sorry to hear you are feeling a little helpless. Yes the scans are routine, you will soon get used to the terminology, but if in doubt ..just ask, there will always be someone to answer if they can. Also take a list of questions in when you see your surgeon or oncologist as when you get in there and start talking my mind used to forget everything.
xx

Re: Diagnosed yesterday - straight to chemo - aarghh

Caroline yes it is normal to have those scans. I had a mamogram, ultrasound, CT scan and bone scan before my chemo started.
Catzoo i too had chemo before surgery and was told it was beacause i had 2 tumours 1 of which was at least 5 and half cm and they wanted to stop it spreading and try to shrink the tumours. Chemo has done exactly that and shrunk my tumours so much that i can no longer feel them, Onc was amazed. Before i had my diagnosis i had no symptoms at all. Not long after the biopsies were done i noticed my nipple started to invert, i developed a small mole-like lump on the area surrounding my nipple, there was a shadow in the area of my tumour when i looked at my breasts in the mirror, my breast became swollen and mis-shapen and i also noticed the skin became dimpled. Most of these symptoms have gone now that the tumour has shrunk so i can only guess that the interference from the biopsies had something to do with aggravating the tumour and chemo has reveresed its actions.
Sian x

Re: Diagnosed yesterday - straight to chemo - aarghh

Dear all, I am awaiting my cancer type and treatment. Had a bone scan today and was told this is a 1 stage of how the treatment plan will be administered - will have CT scan next week. are these scans normal? I also told my consultant I hve arthritis and previously had Endemetrosis. sounds lile a wreck - but so not.

The dread is overwhelming. I am not sure of the terminology and dont understand what is being said on the on line forum. I will learn though as I need to understand what is/will be happening.

Regards

Caroline

Re: Diagnosed yesterday - straight to chemo - aarghh

Oh definately phone the BCC helpline, they are great in making you feel better!! I got a prognosis of 50%, the lady on the helpline said she got a prognosis of 50% 14 years ago and she's still here and well .
Inflammatory breast cancer (IBC) is a rare thing, only 1-3% of BC is IBC.

All the best xx

Re: Diagnosed yesterday - straight to chemo - aarghh

Good morning ladies. Lovely sunny day so trying to be more positive.
Thank you 3n3 that is something that has been worrying me, that doctors don't say anything to make me feel better, just to come to terms with it. Well, at the initial mammogram they were positive " you may get called back but it will most likely be nothing to worry about" but since then all doctors have been more like "we have seen it now and can start treatment" which is so scary when you just want to hear that you need not worry.
I was feeling sorry for myself yesterday woe-is-me. 3N3 I hadn't heard of inflammatory BC. Great to hear you have come thru chemo, surgery and radiotherapy and doing well.
Hey CK1 looks like we will be going thru chemo at the same time. Got to join the NOvember postings on that.
I didn't realise there were numbers on this site to call for advice. THanks for that.
Got an appointment in the post for CT scan 1st November.
Going to dye my newly short hair "fiery red" this morning. Then my partner is taking me out for a curry and to see a Pub rock band. Looking forward to it.

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi

Just to say it's not uncommon at all to get chemo first before mastectomy / lumpectomy. I was diagnosed last year Nov (aged 42) and had my chemo from Dec to March (six lots, the usual 3 FEC and 3 Docetaxel), then had a mastectomy in April and radiotherapy in May / June. Still on Herceptin till Jan next year and Tamoxifen for the usual five years, only that I can't thin kthat far ahead. Now I want to tell you that you don't have the worst type at all with being ER neg HER" pos. In the end there are people like me with inflammatory breast cancer (which is the worst type of BC with the poorest prognosis) who live for years NED (no evidence of disease) and some people with a good prognosis don't do so well within a couple of years. This is so individual and the docs won't say anything really to make you feel better (in my experience) as they just don't know what's going to happen. Also it is very common to have a partial chemo response, this doesn't mean the chemo isn't working! Best to join the ladies that go through chemo same time as you in one of the threads. Looking back I have to say the time you're in now is the worst. Yes it's cancer and it won't ever be not cancer, but the time where you don't know what's what really and all the worries and uncertainties is just so stressful, till treatment starts, then it will get better. Chemo is unpleasant but do-able.
You can request to see a female GP by the way.

Big cyber hugs,

3N3 xx

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Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo,
Sorry to hear you're in this situation.
I'm starting chemo this month / early November, just waiting for dates. Dx in August with IDC, grade 3, had a mastectomy in September, luckily with temp implant. Can't advise on medication as I am ER+. Don't be too hard on yourself and take medication if you need it, the doctor's should monitor the use carefully. About a week or so after diagnosis I had a meltdown! Your brain just goes on overdrive. You've a lot to take on board in a short amount of time. I always ask for a lady doctor at my surgery and I don't like to make a fuss. You don't know unless you ask, they may have a surgery nurse there you can speak to.
I read a lot on these forums and you can get a lot of info and support if you need it.
I'll keep an eye out for you. Am getting my hair cut soon as well to prepare. I'm 46 so in your age range. Hopefully your chemo, like Sam says, may lessen future surgery. Good luck with your CT scan.
Rather than calling a MacMillan nurse this sight has phone numbers and trained people to speak to. I haven't called them but maybe they can help.
Thinking of you x
CK

Re: Diagnosed yesterday - straight to chemo - aarghh

Thanks for the reassurance Sam. So happy to hear of a good outcome from somebody with a similar situation. Thank you for sharing that
Just received a letter confirming the diagnosis "invasive breast cancer grade 3 ERNeg HER2 pos with lymph node involvement" which to me looks like the worst type. Wasn't told the ER status at my results consultation.
KQ good to hear your treatment is going ok.
I think I need to read up on the abbreviations and acronyms page in the forum LOL ...

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzoo-really sorry you are in this position. Diagnosis is such a a scary time.
If its any consolation its quite normal to have chemo first for different sorts of reasons. I'm having chemo first as my lump is in a darned awkward place and can't be removed by a lumpectomy with a good cosmetic result. It also gives the docs a chance to see how you respond to chemo. It may be the same for your situation.
Good luck and have a look at some of the chemo threads (i'm posting on the September one)-they are very helpful and supportive.

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo,
Really sorry you've had to join us here hunni xxx The support you will get on here is tremendous and like the others have said it does help to read through some of the undergoing treatment threads...i'm from the March one and most of us are nearly through threatment now. I had WLE and SNB and am Her2+ and ER and PR+ so have just started taking Tamoxifen but have not noticed any side effects from the ongoing Herceptin as yet. Chemo is tough but doable and you will do it xxx
Hugs to you

Love
KQ

Re: Diagnosed yesterday - straight to chemo - aarghh

Catzooo,
Thought I would reply just to try and give you words of reassurance to some extent. Two years ago when I was dx I also had chemo first. My lump was 4.5 and was right in the middle. I was told that chemo was needed first to try and shrink it before surgery and that I would still need a mx. In the end like Sara12 above the chemo shrunk it away to only dead cells and my surgery was just to remove them and a small amount of tissue. I was also HER2+ and had 12 months of Herceptin which I finished in February this year.
I know it no consolation and everyone is different but my surgeon said to me that long term some of the best outcomes at the moment at grade 3 large lumps which are HER2+ as the chemo zaps them into oblivion and they disappear as quick as they appear.
Now I know that is simplistic and obviously none of us want to be here in the first place, but once you have a treatment plan you will fall in to it and you will get through it. And I know it feels patronising when people say it will be fine, but a couple of years from now it will be fine.
I only pop back now and again to keep in touch with people, I have just had my 2 year check and everything is fine. I am back at work, I have hair and it is like it was before.
You will get there.
Sam

Re: Diagnosed yesterday - straight to chemo - aarghh

Saw GP this morning. Got a 1 month sick note for work.
Sat crying in front of a male doctor who looked still in his 20's. humiliating. He said "I won't patronise you by saying not to worry" then offered me sleeping pills and anti dep pills which I refused.
can you ask to specifically see a female GP? Last time I was there was over 5 years ago with a pulled shoulder from throwing a ball for the dog. I don't know the procedure there, don't know any doctors to ask to see by name.
I called McMillan nurse again, they seem so patronising too. Just say try not to worry and everything is being done to help you. They don't know details of my case. Can't say why I am having chemo whereas it seems much more common to have surgery first.

Re: Diagnosed yesterday - straight to chemo - aarghh

Thanks for replying Sara. Happy to hear of your great outcome, I would not have believed it could shrink so much! thanks for sharing that. Makes me feel a little better to hear.
I will be getting herceptin and I guess I will find out at my next appt what other drugs will be used.
Dosed up with ibuprofen now so hope to get some sleep.

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo - sorry to hear about your diagnosis. My tumour was grade 3 and 5cm to start with - then I had a lot of bruising from the biopsies that made the 'lump' seem bigger. It takes quite a while for all the biopsy bruising to come out, and my boob was rainbow-hued for ages. I also started to get dimpling of the skin. I was assured by the onc and the surgeon that the tumour couldn't have grown so quickly, so it was just the deep bruising that made it seem worse. Like you I had been really worried that things were getting out of control while waiting for treatment. The MRI scan will give them an accurate picture of the size - they should be able to distinguish the tumour from the bruising then.

Like you, I had chemo before my op. If I'd had an op first I would have had to have a full mastectomy due to the position, size and grade of the tumour. My chemo was very successful and completely destroyed the tumour ( the onc said that was rare) - there were only dead cells left by the time they operated.... but there's a chance that chemo will do the same for you, or at least shrink your lump to an operable size. In my case in the end they just had to remove a small amount of tissue plus some calcification that was nearby. I was lucky that my nodes weren't affected - but the chemo is good at mopping up cancer cells wherever thay are in your body, and when they eventually operate they'll remove any affected nodes anyway.

About the hair loss - for a lot of people it doesn't really start until at least the second cycle of chemo and it tends to start with a few strands at a time and then accelerates.... so you do get some warning. It doesn't usually all fall out at once overnight! I suppose it may depend on the type of chemo you have though - mine was FEC-T.

Waiting for results seems to be the worst time for most people. Strangely, once you have the full dx and a treatment plan and know exactly what you are facing it can be easier to deal with. Sharing your worries on here should help as well. I hope your CT scan is clear, and wish you the best of luck with your treatment.

Sara x

Re: Diagnosed yesterday - straight to chemo - aarghh

Sdfmeg thanks for that. My boob is so swollen and sore that I too have given up wearing a bra Found some pretty camisole vest tops in BHS with the hidden support band in which are much more comfy. Am only size b cup so don't need that much support luckily. The nurse I spoke to said the swelling and tenderness would go when the chemo starts so its nice to hear that happened for you. Wil be thinking of you tomorrow having your 3rd treatment.
Thanks too Nicola. That's exactly what the nurse said, the mammogram may have bruised some healthy tissue by squishing it into the mass in there.
I am worried that all the squishing and prodding with biopsies and markers is making the tumour more active. The skin under side of my breast is now looking grey and red. It wasn't like that in the biopsy 2 weeks ago. The consultant I saw yesterday said it looked like it was spreading into the skin. More worries - what does that mean?
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Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzoo. Sounds as though you may have had a similar reaction to mine with the biopsies. My tumour is a similar size to yours with lymph node involvement. It is HER- and only weakly ER+. I had loads of samples taken and the swelling was so bad in the five weeks before starting treatment that I could no longer fit into my bra and the breast just looked misshapen and blue. I won't say chemo is a walk in the park but so far it has not been as bad for me as I thought it would be. By the time I went back for my second chemo my breast was feeling much better and the swelling had gone down. I did have some less welcome SEs, but nothing I couldn't cope with. Chemo three tomorrow, and another five after that. Hope you get similar benefits from your chemo, and minimal SEs. X
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Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzooo and welcome to the forums. It is so much to take on board when you first get diagnosed and you are certainly being thrown in at the deep end. It sounds like the mammo was very painful but whilst it may have disturbed some of the healthy tissue by squishing it against the mass at least it meant it has now been found and you can get some treatment. Unfortunately, a lot of the tools at the disposal of medical staff do come with their own problems but overall they have more advantages than disadvantages. Have a look in the 'undergoing treatment' section of the forum and you will find threads with other women starting chemo at the same time. I've found them very helpful and hope you will too.
All the best,
Nicola x

Re: Diagnosed yesterday - straight to chemo - aarghh

Thank you Janice. Just called McMillan nurse with a few concerns. She is lovely. Informed me I have 2 appts on Monday - to see chemo specialist then to put in a marker.
Also seeing my GP on Friday who I hope will sign me off work as I don't feel up to that. I work in a call centre so have to sound happy all day.
Got haircut tomorrow too to go short. That way I hope it won't be too much of a shock when it falls out

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi Catzoo
So sorry you had to join us on here but one thing for sure its a friendly place and you will gets lots of support, I like you had grade 3 tumour 3cm and 3/20 nodes affected, I had WLE ( lumpectomy ) then 6 x chemo and 20 Rads which I finished on 3rd september I am now on the delightful Tamoxifen , Which is a side effect in itself !!! Chemo is do-able hun its not nice im not going to cover it with rose tinted glasses but it is do-able Many ladies on here have dreadful side effects some have hardly any, its a very personal treatment and with fingers and toes crossed you will be in the latter group, Its a long journey but stay as strong as you can, if you want to cry do so, if you dont want to do something dont do it , This is about you , be kkind to yourself and dont be a hero if you are offered drugs to help take them, I wish you all the luck in the world with your treatment and send good vibes, if you wish to pm me with any questions please feel free to do so, I did when I was first dx and the ladies on here helped me know end,

Love Janice xx

Re: Diagnosed yesterday - straight to chemo - aarghh

Hi catzoo and welcome to the BCC forums where you will find lots of support and shared experiences from your fellow users.


In addition, our helpliners are on hand to offer you further support and information on 0808 800 6000, the lines are open 9-5 during the week and 10-2 Saturdays and they provide a very good listening ear.


The following links will take you to the BCC 'Newly diagnosed' and 'Treatments' sections of the website where you find links to various information and support services which I hope you will find helpful during this difficult time:


http://www.breastcancercare.org.uk/diagnosis


http://www.breastcancercare.org.uk/treatment


Take care


Lucy

Diagnosed yesterday - straight to chemo - aarghh

Am still in shock.
Was called in for my 1st ever mammogram, age 49, and it flipping hurt like hell on the L side. Felt like I had been kicked hard in the boob for the next 2weeks, was then called back for Ultrasound. Saw what she described as a "huge mass" against my chest wall -looked like a mini mountain range to me. so did 2 x biopsies and a lymph node one too.
Was back yesterday for results = breast cancer, 4cm, unable to clearly remove as flat to chest wall. Also HER2+. So prescribed 6 months chemo hoping to reduce then remove the mass. lymph node has cancer cells too. The consultant examined it, said it looks like it is in the skin too now and feels bigger than 4cm. Grade 3.
Waiting for appt for MRI and CT scans. Have appt with chemo just to discuss the treatment on Monday. herceptin and who knows yet what else. Advised my hair will fall out after the 1st treatment.
I talked to a lovely BC nurse, but don't really know what questions I should be asking.
Could the initial mammogram have caused this to flare up? It was done by a trainee until I screamed for her to stop then her manager came to help. I did expect the uncomfy squashed feeling but it hurt so much and swelled up for 3-4 weeks after. Never had a problem or felt any lump there before, but can sure feel a big lump now.
Was advised chemo will start in 2-3 weeks time. So far I have only told my partner, sister and best friend. Can't face telling my elderly parents, and don't know what to tell them at work. I guess I ought to go see my GP for a sick note.