May 2017 chemo starters

[WolfEE]

Rosie65, yep the all important phone call convo planned in your head and before you know it your saying the words - I'll see how I feel, maybe let's see how it goes!!!! Yep I know that well.
Train - scary train. If it was winter we could wear gloves, masks covered by a scarf and protect ourselves without people seeing our weird behaviour but summer time and leather gloves and big scarf covering a face mask wound stick out 😷

If you need to use the train perhaps an off-peek so less people and find a carriage that is quite and wip out the anti bac detol spray it can go on fabrics (the seats) and uncomfortable but put on some gloves?? It is embarrassing but better people think you have an OCD problem than getting a virus!!

Saying that taxis have lots of traffic people getting in and out and I wouldn't have thought twice about using. It's our fear and paranoia it takes over.

[treehouse]

Mai!!!!
You get the brave girl award for today. Sorry that is proper minging. 😝 I really don't think I would cope with that.
Definitely one for the 💪 pile.
Work for me would be impossible. My head of department is actually my husband and the big boss is being very understanding.
They are employing some one to cover me for now and are planning a phased return after surgery....whenever that is.

[Rosie65]

Eww hedgehogging, at least I'll know what it is now if it happens to me Mai7. Have been told I have good veins but not sure how they'll hold up to 12 weeks of paclitaxel

MJK - picked up my cancer busting coleslaw and melon on my half hour walk today. It's through a park and pond with geese, ducks, herons etc, enjoying watching all the baby birds getting bigger each time I walk round, tbh didn't even realise it was there before. One of the upsides to being at home.

Treehouse - I'm sure just looking after kids is enough exercise without doing anything else. Just thinking about having young children to look after makes me feel tired. What's the solar oil for again?

WolfEE - I feel for you, I think it's harder when your boss is understanding because you don't want to let them down but really have to put yourself first. The whole sick pay/ holiday, how long is all going to take is worrying me too. Although I can work from home I'm not sure how it will work on weekly infusions so rang my boss today to say I'll be off sick until Sept and ended up saying I'll see how it goes!!

Am now going into the office on Tues. (Yikes I'll have to get on a train) to discuss it all face to face

[WolfEE]

Headgogging!! Oh my dayzzzzz I feel queezy Mai7 well done you I've never heard or seen that and praying I never have 2 xxxxxxxxx

At the moment I am getting sick pay but I'm not sure for how long. I believe my sick and holiday will be ok for a few months but I have so much ahead of me still. This chemo, mastectomy with lymph node clearance, radiotherapy, possible hysterectomy and then preventative mastectomy on good side with reconstruction on both. It's probably going 2 extend all in over a year so I try and get in when I can. Next week chemo week I'll stay at home. I can't really work from home because we don't have remote access. My boss doesn't put pressure on me and is very understanding but I just worry because I don't know what's ahead. I think today though I have overdone it I am feeling it but there was just so much I wanted to get done before my testament and then when I left the office and got in my car I just completely flaked and wished I could click my fingers and be home I'd forgotten 2 leave some energy for the drive home.

[Mai7]

WolfEE, do you have any paid sick leave or annual leave you can use? Take it easy on yourself or you'll frazzle yourself trying to keep others happy.

hope you have a relaxing weekend. ☀️

[Mai7]

Treehouse, The hedgehogging technique was quite fascinating.  After a local anaesthetic, multiple syringes with saline are injected into the tissue and then a large boil-like lump forms then the saline is squeezed out through the puncture holes, topped up multiple times and squeezed out again to flush the area. This covered roughly a 4cm diameter circle dotted with needle pricks. It was a precautionary in case of leakage. I've had no pain at all.

The boogie has a lot to answer for and should be blamed for everything or you could always ask Alfie what it's all about (Cilla Black)!

[WolfEE]

Hi All,
Up early at the hospital for my blood tests and for picc Line check appointment 9:30 then they tell me I've got my times mixed up my app today is 11:40 and it's my chemo Monday that is 9:30!! I'd already spoke with my boss and told him I would be in work for a few hours after app and he said that's great I could really do with your help on something.
So felt guilty telling him mid-day after sitting around the hospital all morning I was now 2 tired 2 go in so I still went ended up working until 5 o'clock so now absolutely shattered.

They couldn't adjust the picc line so I just need 2 accept where it is and try and get used 2 it running but it all looked good underneath and was nice having blood tests today from it and not having my poor hand stabbed.

Shower - so far I've had shallow bath holding my arm out wrapped in a bag with my sister tipping jugs of water, not ideal. I have this special waterproof thing on order that hopefully has been delivered 2 my dads house today.

[treehouse]

Mai, I reread your post yesterday.....talk us through the hedgehogging?

Also hubby reminded me I was dancing I the kitchen last night....brought another song to mind 🎶 💃 " blame it on the boogie" 😂

[Mai7]

Hope everyone is doing well. 💗 💪🏼we are stronger than we realise!

Rosie, I don't think it was a problem with my veins as they were pumped out like a body builder after having hand in warm water. The nurse seemed to lack confidence in setting up the cannula and gave up after 2 attempts and got other nurses to set it up right first time. So don't worry too much. I showered this morning with a carrier bag masking taped to my arm to cover dressing up. Then had to perform one handed soap manoeuvres like an orangutan! 🙊

Katie, yes, hurray for half way!  The song you mention was originally done by tub-thumping, was it covered later by chumbawumba? 

Treehouse, you did enough today so don't feel bad if you need a rest. Be kind to yourself, you are doing the best you can (there's another quote!). Solar oil excitement, I'm really pleased with mine so far.

WolfEE, how's the PICC line showering going?

MJK, the brutal honesty of young children! Just say it as it is, no flowers or frills on words. Keeps it all light hearted though!

[MJK]

That was probably more than half an hour walking. You'd be surprised how it adds up. Rest up today. X

[treehouse]

I am tired today. I put a wash on, dusted the living room, did the school run and walked around the garden yesterday. Hardly over doing it!
I really don't think I can manage a half hour walk !!!!!🚶
I want to be able to do normal stuff.

Oh ✉ post man just delivered my solar oil 😁💅

[treehouse]

Lol. Sorry shouldn't laugh. M JK. 😁 my 11 year old. Just calls me baldy. My kids seem to be coping fine. My mum finds it hard.

[MJK]

My lovely 4 year old has named my breasts squishy and flatty. Sad but true. 😕

[MJK]

Rosie the main ingredient in coleslaw is cabbage which is a cancer buster so enjoy 😉

[katie11]

Ha that quote reminds me of another song, chumbawamba's "I get knocked down but I get up again , your never gonna keep me down " think our track list is coming along nicely lol xx

[treehouse]

Mai7 I like your quote......i think I will keep that one. Thanks x

[katie11]

Oh anniej ! You must have real mixed emotions right now. How do you feel about it? Glad your oncologist and team are looking after you and are adapting to your best interests.

Glad it went well today Mai7 last EC woo hoo xx

Sorry you missed the funfair wolfee! It's hard when you have to put things on hold isn't it. I find it really frustrating and just want my life back!!!

Here's to good night sleep ladies! Xx

[Rosie65]

Annie j  you have had it tough, so pleased that your onco is looking after you, there are so many options these days and you have to find the best one for you. Big hug xx

Am going to get back out walking if the statistics are right. I've let it slide a bit since the hot weather. I usually walk on my own too. Tesco Express is a half hour walk through a park and round a pond, I seem to need to go there every day anyway to stock up on unhealthy cravings of tubs of coleslaw and sausage rolls probably undoing any benefit from the walk. Perhaps I'll pick up a cantaloupe melon tomorrow.

Also walk to my sister's house so she can do my injection as I read somewhere it should be out of the fridge for half an hour before you inject.

Glad all went well today Mai, apart from the cannula. I wonder if as it goes on we will have more problems with our veins.

I got given a couple of nice brow pencils at the Look Good Feel Better thing - a Lancôme one and a Maybelline Brow satin one which is good for drawing in fake hairs and is not expensive. The beauty therapist recommended Benefit Brow Zings as the best if you lose eyebrows completely.

[Mai7]

Just realised I missed a whole bunch of posts as my browser loaded on page 2 instead of page 1. 

Trisha, it was Rimmel "brow this way" on Amazon. If you just type in "Rimmel brow" it finds it

[Mai7]

Hi everyone and thank you for your good wishes. Today went well except that the cannula was attempted four times and the third attempt may have had a leakage risk so I had to have this checked out in another dept and they washed out the area using a hedgehogging technique.  The nurse who set up the last cannula was really good and the consultant was lovely and really good so I think they should get a nomination.  I feel fine, a slight bladder tenderness but I'm on it with the cranberry juice. I've been reading a Dr Jane Plant book (her legacy is officially now my BC guardian angel) and she recommends eating melon regularly whilst on chemo as its high in folic acid which performs some useful role in helping the body recover. I googled melon and folic acid and it seems that cantaloupe gets the big mention. 🍈  I now have my Movicol (Yay!) and now keep thinking of that song "we like to move it move it!" 😂

MJK, I've also read about the regular walking and it may be because the good cells use oxygen to grow whereas the cancer cells use sugar to grow. 🍭  I think my cathartic whacking of the swingball must have helped the tumour soften and shrink! 

Treehouse, glad you are back in the light at the end of the tunnel. I like to think of the motto "I'm either up or I'm getting up, but never down"  ☀️

Sleep well everyone and dream beautiful dreams. Xxx

[Anniej]

No Wolfee, I had a Hickman line in as my proposed treatment would have lasted five months, and a Hickman line lasts about six. It goes into the chest and side effects included probs breathing after each session, earache, and twice it was thought it had harboured bacteria which was pushed into the body when the line was flushed.  This is what put me into hospital. Neurophils dropped really rapidly when that happened, and have been slow to rise, but I haven't needed any blood. Yes, next chemo -- EC - will be my last. So instead of three I will have four. The line is coming out after the chemo. CT scan to check ok,then passed on to radiotherapy dept. I can see that finishing line, so feeling good. I think everyone on this forum is wonderful. Cancer is definitely not for the faint hearted, but with good support and some wacky humour we are all getting there.

Misyangel - yes, my Onco has looked after me wonderfully. He is so forward thinking and other registrars have the greatest respect for him.

Thankyou for all your kind thoughts. Feeling quite tearful - again!

X

[treehouse]

Thanks MJK. Still feel fine. Even had a little boogie in the kitchen while hubby did washing up with the radio on 😁 ( the Ally McBeal effect )

[MJK]

I hope Mai7 didn't get 🌰 in her goodie bag 😝?! Sorry you're missing the waltzers WolfEE but a good call. Personally, I find a round of FEC leaves me feeling like I've spent an evening on the waltzers anyway 😩. I hope your day stayed good treehouse. X

[treehouse]

Such a shame about the funfair, I too love the Walters. But wolfee with all the risks, I think you are right to skip this one.
Trying hard not to turn into a paranoid agoraphobic but now I feel well I don't want to feel poop 💩 again.

Speaking of poop. Mai7 have you got the stuff in you goodie bag today? Hope treatment went ok.

[treehouse]

Son brought a letter home saying they have an outbreak of chicken pox. I was supposed to meet his teacher tomorrow but can't face going into a school full of bugs so phoned the office and asked if we could do it over the phone. Carboplatin specifically warns about avoiding chicken pox.
Yes I will check my temperature . 😠

[Mishy18]

You have had a ruff time Annie and you are bound to be overwhelmed by everything take care of yourself, hope you are feeling better soon and yes what fantastic people look after us all in the NHS xx

[WolfEE]

Treehouse, gosh these little people do put the frighteners up us. I'm sure your swift passing with the chicken spots will not have been enough 2 catch anything just keep carful watch on your temperature for a few days don't get lazy taking it. Have you had chicken pox before?
The fair is in my village at the moment and tonight is £1 per ride night and I just love the waltzer. I've been to that fair every summer since I was a kid. This year I have 2 miss it. I was going 2 go but as my picc line is so new I don't think getting squashed on a ride will help things plus my sister pointed out that the ride seats could have had puke and goodness knows what over them and then the fact that the park will be full of humans and bugs and viruses. Oh and takeaway burgers and candy floss that I can't eat!! Maybe next year. It's a little sad as it's a bit of a tradition that I go and spend £10 on the waltzer on cheap night.

[misyangel]

AnnieJ I really feel for you hope you are ok.  Sounds like your oncologist is on the ball with you and making sure everything is ok. Sending big hugs

[WolfEE]

Anniej, so the picc line will come out before the 4th EC? And the CT scan that will be before or after that treatment?
I agree he does appear 2 be looking at all your options and making carful decisions for you. That picc line has certainly given you some bother.
So this next EC will be your last chemo??? Then radiotherapy???
How are you feeling now generally are you feeling relatively well (as far as chemo well can feel?)
You've been through such a tough time with all thins lll be keeping eveytbing crossed that this last stretch goes kinder on you. You've been so tough and brace and has some major hurdles your wonderful
X

[MJK]

Big hugs AnnieJ, it sounds like a better way forward. Treehouse, if you've had chicken pox you should be ok. It's also at its most infectious before the spots come out. My son had chicken pox between surgery and chemo so I checked it with the doctor.

[treehouse]

Big hug Anniej. So glad they are making this work for you. I understand the mix of emotions.

I just did the school run and a tiny person covered in chicken pox walked right past me. I am trying not to freak out but have used anti bac on every bit of exposed skin.
Probably pointless as I think chicken pox is a virus.
Eeeek

[Anniej]

Thanks Treehouse, after a sleepless night I have had some unexpected news. Long story short, my Onco phoned last night to set up a meeting for today. Saw him at 9.30 this morning. He told me that he thought the risks of the chemo, plus my body's reaction to the line, far outweighed the benefits. He does not want me to proceed to the Docetaxol, or anything else , but instead to have a fourth EC. The line will then be removed . I'm to have a CT scan, then onward and upward to radiotherapy.  He arranged for my line clearance while he was having clinic so he was around , and also for me to have a bacterial block, which I don't normally have. I am so grateful for the care , kindness and support I have had on this journey from the professionals.. Feeling quite tearful now. X

[MJK]

I go walking on my own. Luckily the chemo hasn't been too bad although dose 2 and heat last week meant I didn't manage it. I don't have a dog but the route I go has so many dog walkers that help would always be there if I needed it. I use my Samsung Health app on my phone (back pocket) to track steps and so I van call for help if needed. WolfEE, I was given a roll of tubigrip by the community nursing team. Failing that a clean tubigrip would do it. Not recommended for human consumption though! 🍪😝 Hopetoday went well Mai7.

[Trisha69]

Thanks, will have a look!

[WolfEE]

Brow this way even!!

[WolfEE]

I remember that was mai7 the other day. It was Rimmel brow away I believe from the wonderful amazon
X

[Trisha69]

One of you lovely ladies mentioned a product on Amazon for thinning eyebrows??? A set to fill in the gaps! Help cant find it! x

[katie11]

Yeah wolfee I go on my own. My chemo se haven't been too harsh so far so feel confident on my own. I only ever really walk locally on roads so always someone around if I need it but I've been fine x

[WolfEE]

Do you go out walking on your own? I like walking in my own but a little worried 2 do so during chemo incase I walk 2 far and a sleepy episode happens and I struggle 2 get back. Just paranoid really. My sister works late sometimes doesn't get in until 8 then by the time she has eaten she doesn't always feel like going out again. It's partly my laziness also because evenings I have other friends who I'm sure if I ask would come walking with me but I find seeing other friends difficult because the topic of conversation always ends up back on me and my treatment etc and I get sick of hearing my own voice repeating eveytbing over and over. I always say right I'm feeling good let's not talk about how I'm feeling what's ahead or mention 'c' and then somehow 15 mins later it's being discussed 😫 I know it's a massive part of our lives right now so it does come up and tbh as hard as I try and not make it my entire life at the moment and keep things normal it's actually difficult becaue like it or not it is our entire being at the moment eveytbing we do, going out, eating, working, sitting in a park, resting, shopping, cleaning the house EVERYTHING has consequences it is on mind and dictating what we do, don't do, how we do it etc with every little thing we do. Even going 2 the toilet or brushing out teeth there is no escaping it.

[katie11]

Morning all, glad to hear we are all on the up at least for now ! Good luck to all of you on treatment.

MJK the walking is good way to keep active and clear the head! I manage to walk my dog for half an hour a day and it really does help with chemo se .

Treehouse -ally mcbeal I use to love it!!!

Just back from my boys singing morning at school so feeling all marshmallowy! Love that new word treehouse xx

[WolfEE]

Also (may wait until after surgery) I think I may get a Fitbit encourage me 2 walk more. 50% that is a big big reason 2 get walking and it doesn't cost anything.

[WolfEE]

MKJ - I had just made myself an omelette sandwich (sounds awful but the craving was there) then sat down 2 read and saw the syringe sandwich description 😂 Not sure what's the strangest image a syringe sandwich or omelette sandwich. Is that bandage thing something I can buy from boots? The piece the hospital put on yesterday is short and I think I would like 2 fold it over plus maybe change it every few days I think it would fall apart in the machine. I'm going 2 order a proper one online once I measure my arm. I'll use that during the day and then the bandage sandwich at night.

[MJK]

Treehouse, glad you're having a good day. WolfEE, good to hear the PICC fitting went well. I tend to have a longer length of bandage which I take above it and then fold over as a syringe sandwich I found this fairly comfortable as mine is quite close to the elbow too. You'll find a way that's comfortable for you. Mai7 great to hear the lump is going soft and shrinking. Go zap it and show it who's the boss. I'm just out for my walk. Research suggests that half an hour walking 5 times a week reduces breast cancer recurrence rate by 50%. Have a good day everyone. X

[treehouse]

My sister in law brought me her old Ally mcbeal DVDs.
😁
That is definitely going to be my strongest chemo memory.

[WolfEE]

Treehouse a normal day how wonderful few and far between but oh how lovely when the come. Just think one day (and it will come) we will have days, weeks of normal days. Wish we could all fast forward a year have a peep see how we feel and then jump back and do it but with knowledge that we will be normal again!! One day we will day to someone well..... I remember.... when I was doing the chemo.... or god it's a bit of a memory but if I remember correctly when I was on chemo!!!

I have kodi and amazon fire stick so can watch most things but I do love my box sets. At the moment I'm watching once upon a time it's based on fairy tail characters trapped in the modern world sounds weird and childish but it's really really good. Also I'm watching sons of anarchy. But I'm counting down the days for the new game of thrones (can't wait)

[Trisha69]

Thats excellent news 🙂

[Rosie65]

Mai - so pleased to hear about your shrinkage, let that chemo work its magic again today!

treehouse - glad you finally feel normal again. It really is a cause for celebration these days. Normal feels so fantastic.

[Trisha69]

Have to wait til pay day (Tomorrow and can buy it on Google Chrome, it wasnt on Netflix x

[treehouse]

Good morning 😊 😊 😊 😊 😊 😊 😊
I had a great night sleep and woke up feeling NORMAL.
God that feels good.
Today is a good day 😊

Good luck for treatment today Mai
Thinking of you today Annie .

Hope everyone is ok.

😁 x

[Mai7]

Glad you're ok Trisha, enjoy the film. I enjoyed watching a comedy called "get hard" which was especially funny when you're on chemo!