Tamoxigang thread 49 when Sumer is y cumen in and we get out the Pimms

[Lilymaid]

New thread!

Interestingly, I've been told to cover the affected area but not to use sun cream. That might be because the radiotherapy will still be affecting my skin when I'm on holiday though.

Hi there,I thought I'd pop in.I've been reading all your comments and I must say I've learned a lot from you all.
I've been given a date for my mastectomy (2nd July) and feel a bit in limbo at the moment,feel I should be doing more to prepare myself but I don't know what??
All the important people in my life have been told,I'm letting the grapevine do the rest.
Any ideas/tips on what I should do? I've had a couple of proper 'panicky' moments but feel quite calm under it all.Am I still waiting for it to sink in,am I possibly in denial? Has anybody else felt like this?

Hello All. First chemo session down. Hassle free thanks to PICC line, so glad they weren't faffing with canulas. Feeling a bit odd and lethargic, pink wee and nasty taste but not bad at all - very aware it will get worse.
Question following on from discussion yesterday - how do they know if the chemo works unless there are specific mets they are targeting? Apart from the obvious of no reoccurrence. Apologies for my ignorance.
Another one here who suspects the hot flushes are hormone/menopausal related. I am peri-menopausal (just) and the BMX caused my periods to pause, had awful disturbed, hot nights in the interim. Started again now and night sweats have lessened. Just one more thing to look forward to and if the chemo doesn't cause it, middle age will!

nelson that sounds exactly how I was. Once the awful bit of diagnosis and the waiting for treatment plan and telling everyone was out of the way, nothing left to do but wait it out and put trust in the medical staff. In fact, I didn't really worry or get nervous about the op until meeting the anaesthetist 10 minutes before who told me not to worry about all the youtube clips of people being awake during operations - hadn't even crossed my mind - until then! And hope that doesn't frighten you - being under was the best rest I have had in weeks!

Thanks CBB,glad I'm not the only one . Feel I should be emergency cleaning the house or something but don't seem to be able to kick start myself. Would you mind telling me a bit of how you felt after the op? No idea what to expect really....

Nelson, I had a bmx and nodes on one side 4 weeks ago and the op was nowhere near as bad as I was expecting.

I wasn't in any real pain afterwards (obviously drugs keeping it at bay!),I did have 3 drains, one for each boob and one for the node wound, they didn't hurt at all, just a bit of a faff when moving about.

They stopped the proper painkillers after the second day and I was just on paracetamol which was fine, I found it was sore rather than painful if you see what I mean. Stopped taking anything by day 4 but because I didn't need it rather than being brave!!

Practical wise, button up pjs are v useful because it is hard to lift your arms up, and cotton if poss cos the hospital was boiling ( I got some cheap ones in Primark) and slip on slippers so you don't have to bend. Normal hospital things such as eye mask and ear plugs are also recommended!

It's odd, it's only 4 weeks ago but seems ages so have probably left loads out, please feel free to ask if you have any queries. CBB wrote a very useful post after her op which was just before mine!

Oh yes nelson I remember those plans to clean the house - never happened - still hasn't! Nothing much to add to what wine says, I was up and about pretty much as soon as I was home and also off all painkillers after day 4. Worst thing for me was really debilitating indigestion caused by the strong painkillers - got prescribed something by my GP which sorted it almost immediately, so don't suffer anything in silence. As wine says sore rather than painful which does drag on a big and if you are having a full node clearance this is by far the most inconvenient, like you are carrying a sharp brick under your armpit and do do what I didn't and be diligent about your exercises. Front opening pjs, easy clothes to get into for going home, wet wipes and yes,yes,yes to the earplugs if you are in a ward. Keep the questions coming.

Thanks wineoclock and CBB,really useful tips (hadn't thought of earplugs and such). Quite reassuring to read about your post op experiences. I'm only supposed to have sentinel node taken out and checked so shouldn't be too bad? Desperately wanting to get back to horse care and riding him afterwards,but trying to be realistic. I'm talking weeks aren't I? How about driving,when did you feel confident doing that again?

I drove after nearly 3 weeks although we do have an automatic and I think I would have had problems if I'd needed to change gear (had nodes on left side).

I drove after about 2 weeks, but again, we have an automatic. I had node clearance and mastectomy on both sides. I am a month on now, and have almost completed rads. I have been very good at doing my exercises though.

I drove after 10 days, had full node clearance on left side and not automatic. Not ideal but born out of necessity as DH had taken to bed with man flu! Did check with my BCN who thought was fine, and actually quite good physio, did pop open my drain wound although apparently that is quite common, I might recommend waiting a bit longer although to be honest side with just mx was absolutely fine. Thing to remember is that we are all different. About the horse, I guess some of that would depend on how easy to handle he/she is. Take some advice from BCN, but I would imagine it will be very therapeutic to get back to horsemanship so personally would try as soon as was sensible ( or before, knowing me ).

On a more personal note,what did you do with regards to hair removal? I'm a hairy monkey and an avid lover of the razor. I use epilator for my legs in the summer but have never used it for armpits or bikini line. Just read to my horror that you are not supposed to shave from 5 days before op..... Also after the op,must be tricky to keep lymph removal side free from hair. Never waxed before as I'm too worried about ingrowing hairs which seems to be a problem with waxing? Hope you don't mind me asking.

I am assuming you are only talking about armpit hair, have to say that I wasn't told anything about not shaving and certainly made sure my legs were nice and silky for the consultant. Unfortunately, I am the wrong person to ask about armpits, one benefit of radiotherapy for previous cancer in my late teens is that the armpit hair never grew back - got enough everywhere else! I would think that you would want to be steering clear of your lymph node site armpit for a fair while, but also don't think you will be wafting your armpits about too much. Took me about 4/5 weeks before I really wanted to even get that close to my scar sites, but everyone is different and if this means a lot to you, then it is important so I would take some advice about the best way to go about it from your BCN.

Can't help I'm afraid Nelson, After 6 months of chemo, hair removal is not an issue

While I'm on, thought I would give an update on chemo day 2. Bearing in mind that I am on TAC not FEC, although the T and C are the same. Had a good night, on (apparently strong) sickness meds which do seem to be doing the trick, no nausea so far. Had acid reflux on first night of steroids but not that yesterday. Am a bit hot and prickly - but isn't everyone in this heat. Managed to get girls sorted for school, take dog out and do a bit of housework and have had a couple of dozes in bed. Taste buds have started to go and am losing my voice which was unexpected. Just started to feel a little bit odd now. Almost want to feel utter pants to prove drugs are working - please remind me of that when I am on here whining about the SEs. Had downloaded happy valley to watch on my iPad in bed - not recommended for anyone trying to avoid tension and stress - very well written and acted though. Hope everyone else is having a good day.

Bigger buns you sound like you're doing the right things and resting when you need to. I know what you mean about feeling a bit odd and you feel out of control. Hope you continue to be ok

I use an electric razor on my armpits now, where I had the node clearance I haven't got the same feeling so with a normal razor could easily cut myself and not notice. Use a normal razor on my legs though, in fact they need doing now

Wine I know what you mean but it will return

Nelson, I didn't hear anything about not shaving before node removal and made sure I was smooth on the morning of my op. I only had three removed but have a two inch scar. I was shaving, carefully about ten days later.

I have now read that during rads you're not supposed to shave, that will be three weeks so I'm not looking forward to that in July.

I haven't posted for ages so apologies. Have had some interesting developments.

Just to recap I was diagnosed in August 2013, FEC chemo, then BMX in Feb and full clearance in Mar. Then started docetaxol.

About a month ago a ct scan revealed lesions/mets in my liver. Initial treatment was to be more chemo. However with some advice and research I asked for either surgery to remove them or cyberknife.
My Onc agreed and I was referred to specialist liver unit who ordered PET scan and MRI.

Here is where is gets interesting as PET scan showed nothing anywhere else in my torso, but also nothing in the liver. MRI showed 2 definite Lesions but not thought to be cancerous but something called hermangiomas (a tangle of blood vessels). Second MRI with a different injection proved 1 to be definitely a hermangioma but the other not so typical.
So am going to complete the docetaxol as cancer was in my lymph node, then another MRI to make sure.

So in all probability I am back to stage 3 and not stage 4.

I realise this is v unusual and I am v lucky, but I am glad I pushed for other treatment else this might not have been discovered for some time. I am not criticising my treatment, but do question things, and make informed requests.

foofoo that is brilliant news. It must be such an 'up and down' time for you. Thank goodness you pushed, and the referral was agreed.

So pleased Foofoo!
I saw onc on Thursday and she was delighted with pathology report. I now don't have cancer anymore and only two rads left.
She did say that they won't be doing any scans etc as data doesn't indicate that new cancer would be found any sooner.
Oh,and it was oest +ve (3/8) so I'll be joining you guys on tamoxifen too!

Yay to you again foo foo !

And you wee, nearly done

Not seen really around for a while hope you're ok really

Lovely sunny day here again, hope not too hot as dd is doing her duke of Edinburgh assessed expedition

Malt - my dd did hers last weekend and got horribly lost - so walked 10 hrs on the first day and 9 the second day. They all passed but I let her have the Monday off school!! Hope you dd has fun and puts the suncream on.

Great news foofoo and wee.

Good luck to your DD malt and hope everyone has a lovely weekend.

wee must be so good to be near the end of treatment

foofoo that is such great news. My friend who had kidney cancer last year that had 'spread' to her liver, had a similar experience when they actually went to start the treatment. What a relief, I remember how worried you were about telling your Mum.
wee that sounds fab too.
Chemo day 3 here and the energy truck has run me over. Woke at at 1.30 and didn't get back to sleep until 5. Good job I had a good book to finish. Not sure if that is the remnants of steroids am now awake and dog wants to be taken out but might take a while to get myself up and out. On the plus side, still absolutely no sickness, which I had been really worried about. Not in any pain or discomfort just absolutely Knackered.