**Tamoxigang Thread 52** With virtual tea, cakes and chat for all with cancer concerns

[Lilymaid]

We were almost at our 1000 post limit for Thread 51 - hope the title is OK but wanted people to know that we aren't just about people on Tamoxifen but for all with cancer concerns!

The trip to Central London (we live in North London) will be tomorrow not today obviously!

Good luck with concert Marshy. I'm singing next week in concert with local (hopeless) choir. One of the works is the same as I shall be singing with choir near work (Nelson Mass - so standard repertoire) but in a different editions - so subtle differences to throw me!
Sorry to hear you are in hospital Wallaby but good you realised so quickly.
BsshBosh hope you recover from the particular hell that is weekend IKEA and that what you want is in stock.
all round unless expressly forbidden by the Onc!

Gosh a lot to read!

Mrs- so sorry to hear your crappy news. Cancer is indeed a . Hope concert goes well.

Wallaby- sorry that you are in hospital, hope the neutrophils go up soon. Did you get given injections to do after your chemo?

Boobz- my nipples went. Not given an option to keep them but I do have the gene so had a BMX. Went bra-less on Friday night! Safe journey.

Minty- sorry you are feeling tired with the rads.

Lily glad scan results are over and showed no signs of concern but a pain you have to change chemo.

Sorry, I know I haven't mentioned lots of people but lunch is nearly cooked. Waves to everyone else

Am home, hurrah! Neutrophils back up, feel a bit better, temp gone. To be honest I think someone has fucked up my injections post chemo; after my first FEC the nurse sent me home with 1 injection and said the district nurse would be round the next day to show me, if I wanted, how to do it so "for the rest" I could do it myself. Next day the district nurse phoned twice (same team, 2 different nurses) asking me how many injections/ days I was due to have. To which I said"um, well I've been given one, but I don't know how many days I'm supposed to have them, I thought you may know?" When the nurse turned up, she also didn't know how many I was due but since I had been given only one pack, that it must just be one. 3 days later another nurse rocked up saying "I'm here to give you your injection!" Then she was confused as to why no one else had been since the first one. I mean I haven't had fucking cancer before, I naively assumed they would know better than me?!

When in hospital, the consultant seemed be used that I'd only had one and restarted them immediately. It only took 2 for the cell count to sort itself out. And the cillit bang strength antibiotics!

Neutropenia sepsis, what a riot!!

I am also quite sweaty - I blame the cancer.

I meant SWEARY!!!! Twatting iPad!!!!!! Not sweaty. Just not!

Lol re sweaty wallaby Great that you're home!

It sounds as if communication has fallen between the cracks there - not funny at all. Fingers crossed it's the first and only time for you.

Glad you're home Wallaby. Hopefully now the injections will be sorted for next time and you won't have to go back into hospital again. I remember it being a shock when I was given them as I had no idea I would need them. I got the nurse to watch me do it and then I did them myself after first cycle which was easier than going to the doctors (they wouldn't come to me).

Nice afternoon at the beach, although very windy. Yummy ice-cream was had though.

Gosh wallaby what a farce, but glad your neuts are up. I hate needles and cannot inject myself. DH says he can do them but I can't even cope with that. And I dislike waiting around for district nurses so I go up to the hospital each day for my five injections when I need them. I'm only a 10 min drive from my hospital thank goodness.

Lovely day today at the National Gallery and a Japanese lunch out. Accidentally parked up in a residents only bay off Tottenham Crt Rd though and got fined - my first fine in over 15 years of driving . Oh well. Afterwards had my 48 hour chemo pump disconnected at hospital so I am unencumbered now. Hurrah!

wallaby - just shows that you can never rely on anything when having treatment. My drugs have often got "lost" between ward and consulting room so that the consultant has to search for them - and as I said below, even he had forgotten that I still have a portacath in, when theoretically he should have organised its removal 18 months ago!
And if you are ever in a hospital bed you must keep hold of the buzzer whenever the staff come in to change the bed etc as they will always put it somewhere out of reach ... and they never come back to you when they say back in a minute!
NB this is the same in NHS and private hospitals! My conclusion is that you should only ever have treatment/go into hospital when you are well, because you wouldn't be able to sort out all the problems if you were ill!

Hi All, hope you had a good weekend. I survived the teenage sleepover, they were surprisingly non shrieky and it did start late as they got on the wrong train coming back from shopping trip so didn't get home until 9.30.
lily glad to hear the scan results were good, more intravenous chemo doesn't sound fun though, you sound impressively pragmatic about it all.
Glad you are home and feeling better wallaby. I only had one injection after each of my chemos is I wouldn't have known any different. All we can do is trust the medical professionals to get it right, sometimes that is a big ask. As it happens, I am sweaty and definitely blame the Cancer.
bssh very impressed that is your first parking fine, I get so many I actively factor them into my budget planning!
mrs sorry to hear about your DBIL.
Back on the subject of nipples, with my BMX I had the nipples removed but he left about a third of the aureole which was puckered up to look like a nipple, he also left more of the skin than the normal procedure. I look like I have little saggy envelopes with a nipply seal. Once I have had my recon I will be able to pass judgement about whether this was a successful procedure. I have my anniversary check up with the surgeon next week. Also I have a MRI on my spine tomorrow. This is because there was a spot on my latest scan and then I have had back problems. The back pain is definitely due to stiff muscles caused by the tamoxifen so not worried but will be good to get the all clear as still have spots on liver and lungs also under investigation.

Buns I'm glad you survived the sleepover ! Hope the MRI goes well, would be great for you to have the all clear and be able to relax a bit more, not sure if we will ever relax now but you know what I mean

Bosh and speedy glad you had good days out :)

Trice, yes fec tax sounds right; I haven't looked at the drs notes since I saw him a week ago!

Boobz, it was a two week wait from finding lump to seeing GP. Then two weeks to seeing breast centre at the hospital. Then one week wait for official diagnosis/ biopsy results (I think it must have been the sentinel node biopsy that they did). Now it's one week since I had the diagnosis and have told will probably start chemo next week although still waiting for letter to confirm.

I hope that everyone is doing ok.

I have bought myself some hats and had a dramatic haircut this week. :)

Thanks for the breakdown hotchoc - I went from finding lump to biopsy within 2 days, but then took aaaaages to diagnose, so we seem to have ended up starting chemo at the same time.

Saw the oncologist yesterday - she was brilliant actually - I really liked her. She is happy for me to fly back and forth between chemo sessions which is such a relief - it means I can have the private BUPA care in the UK (rather than public health system in Italy, all in Italian as very few doctors here speak English), but it also means I can be with the family in Rome and not be exiled in London for the next 6 months! Was very relieved to hear that...

So had biopsy on the 2 smaller lumps as well yesterday (in the same breast as the one I had the tumour removed from 10 days ago) - hopefully Thursday for those results. If they are malignant then we are going down mastectomy route. To be honest I think we are getting there anyway - a double to ensure I can maximise my chances of only have to deal with this once. But am having chemo first and then surgery so don't have to make a decision about it just yet (will prob have genetic testing based on family history and type of breast cancer which will I'm sure point towards that direction anyway).

Also had PET/CT scan today to see if it has spread. Oncologist thinks it will be clear - find out tomorrow.

A few questions for the more experienced... what did everyone do about wig options? Did anyone style it out, and rock the bald look? Or did you all get a wig? What make and how much? I have tentatively made an appt with an London outfit but it's over a grand! I can't really justify that - what has everyone else done?

Have you all worked through chemo? Or reduced hours?

What should I read before starting chemo? Any websites, blogs, books or anything else?

Finally, I am crap at make up - always have been. I assume now I am going to have to draw on eyebrows, I will have to get better - any good websites for chemo-inspired make up lessons (YouTube tutorials, or a one on one lesson from someone in London perhaps?)

Sorry for all the questions! Hope everyone is well. It's all becoming a bit real for me now - portacath being inserted on Thursday too...

Good question about eyebrows Boobz. I also can't do make up so would be hopeless at drawing them. I saw that there is a group that meets in our hospital that teach you the tricks and also do pampering evenings. We got a leaflet in with all the chemo info.

I don't think I will bother with wigs because I know that they get hot and will annoy me. I am eligible for a free NHS one and might get one just for fun. Going to do hats and scarves mostly I reckon.

I am also going to do genetic testing down the line. :( Not looking forward to that.

For the more experienced, my Dr said to avoid restaurants, cinemas and supermarkets as much as possible; but still to live as normally as I can. I find this confusing. How do you actually do that?

hotchoc and Boobz you can continue with a 'normal' life. There are just certain points in your chemo cycle where your immunity is at its lowest and you could be prone to infection. That's when you need to avoid germs, as best you can. Having said that I worked throughout looking after two children who were constantly full of colds, but I was fine! its just a case of being sensible.

Good luck to you both xx

Thanks love - I am more worried about looking ill than actually being ill I think!

Hugs to those of you on or starting the chemo route. That wasn't me so I can't truly empathise but you have all my good wishes and good vibes nonetheless.

Thank you Marshy and Nanny.
I have two young kids who will be bringing home lots of germs, so it will be difficult to avoid colds and the like.

HotChoc

I would reconsider wigs. I wore mine in July 2013 when it was baking most days. Monofilament wigs aren't heavy, look natural and just have a netting back. Mine stayed on without problems when windy and people kept telling me I had a really nice new hairstyle! I may have to get it out again in June when if I go back onto intravenous chemo but this time round I shall try the cold cap as this drug only makes you lose your hair in 50% of cases whereas last time round it was 100%.

I didn't work full time during intravenous chemo as I was wiped out for a few days in Week 1 and I have a four hour daily commute (car/train/tube). I did work from home and went in on odd days in Weeks 2 and 3. I also went away for the weekend at the end of every cycle ... always good to have something to look forward to.

I was also lucky in that I haven't yet picked up any serious infection despite 6 rounds so far of intravenous and a year of oral chemo ... but pride goes before a fall and you need to be aware this can happen at any point in treatment.

Boobz - I was constantly told how well I looked during my intravenous chemo! Possibly as annoying as people telling you that you look ill. I became a bit of a make up maniac, so was much better groomed than normal.

Try and book yourself on a Look Good Feel Better course if you can. My hospital runs them once a month and there's usually 8 ladies taking part on a 2 hour workshop. You get taught how to do eyebrows etc but the best thing is that you walk out with a goodie bag full of pretty decent products like Benefit mascara and Clinique cleanser etc. I think I looked up the prices of the products afterwards and they came to about £150 pounds (maybe more)!

Just be aware that you won't get cosmetics totally tailored to you, you will get a bag labelled fair, medium, dark etc for your skin tone with set products in each one

As to wigs, I think it has to be a totally personal decision which only you can make. For me, the very thought of wearing a wig makes my skin crawl and I never looked into getting one. Tell a lie, I did look on the Smiffys fancy dress website and bought a long blonde one as a joke for my Christmas party!

I bought a handful of cheap scarves from Anna Bandana on line, the best ones being a jersey scarves that were already 'tied' at the back so that you can just pull them on and off without having to retie them all the time. They make hospital appointments easy when you're having to whip your top off.

I never really went commando but when I had about 3mm or so re growth I was so sick of covering up I went bare when I left the house.

As to work, everyone on hear knows about my woes with my boss and the company sick policy but in short because I didn't think I was going to be getting sick pay, I worked through chemo. Ie I had about 6 work days off each cycle and then went into the office. It was doable but had I been given the choice of time off I probably would have done less.

Again, I think it's up to you as an individual as to how much of a normal life you lead during chemo. When my SIL had chemo this time last year I assumed that she would be housebound and that we couldn't visit etc, but when I went through it I really found that in my good weeks I could function pretty normally. I went out for dinners and met up with friends.

I probably would have drawn the line a getting on a rush hour train into London or a packed tube train

Finally just picking up on Lily's comment, my skin never looked better than when I was on chemo! I guess it's something to do with the effect the drugs have on fast regenerating cells. I was always having people tell me how well I looked (even when I was feeling s*e)

Apologies for basic typos, I am definitely suffering from chemo brain still!!

Second Look Good Feel Better - loads of free cosmetics from a variety of manufacturers and some make up advice from nice people rather than pouting teenagers - book well ahead as it is very popular!
Another reason your skin looks good on chemo is that the down on your face disappears. I found myself much less wrinkly and the problem of chin hairs goes away for a while too. Think of it as a really effective exfoliation!

True lily, the worse thing is(as I've moaned about before) the down comes back and now I have a very downy beard and hairy ear lobes that I never had before :-(

I was very excited about getting a wig, then found I just couldn't get on with it. I wore scarves mainly and went out with v v short hair: like a number 1 crop.

Also just to warn you chemo can strip your hair of colour so prepare to be white/grey when it first grows back.

My hair hasn't fallen out yet but is thinning so I've bought myself some scarves just in case. I've not had to work during my year of chemo but have managed to live quite normally: a mixture of staying in days just chilling and napping mixed with days out and about. Haven't yet picked up any illnesses from being around infectious DC or on public transport even when my neutrophils were low but I should have been more careful. The best advice I was given ref. my looks were that if my hair on head and face and eyes went then ramp up the makeup and colours you wear so you don't looked washed out.