September Sunbeams 2014

Hi girls, September 2013 girl popping in to interfere.
I didn’t have a picc line, I had a portacath. Basically it’s a little port inserted under the skin just below clavicle. Mine was put in using a local anaesthetic, took about 20 minutes and was sore for a couple of days.
The beauty of portacath is that once its healed there is no risk of infection or having to have it flushed out by district nurses you can even go swimming if you want to, as well as the obvious benefits of no painful veins when having chemotherapy.
I was treated in a private hospital and was told this is the best.
So if you can get it done it’s well worth it.
Take care xx

Thanks Nikki, yes he mentioned that, but said it’s not hospital policy to use any of these methods, and if I wanted he’d look into it but chemo would be delayed for 6 or so weeks and even then he couldn’t guarantee it being done! So I’ll just hope the veins hold up, I’m sure it’ll be fine, PMA and all that, ?lol, on a positive I’m going to get nails done tomorrow instead of having them removed, he doesn’t have a problem with acrylics!! Thankyou xxx

1852, what about Ingrid?

Re the port.  It appears that it is only put in by private hospitals.  however, there are trials going on so you should approach the hospital and ask if they are doing the trials in your hospital.  you will either be given a hickman line or port, whatever you are randomised to.  I was going to get a port done privately but went onto the trial on the off chance of getting one.   Luckily I was given the port.  My veins are crap so it really was worrying me.

My mouth is quite sore at the moment as well as everything else. BUT, it is all manageable.  Mouth hygene really has to step up 1000%.

Serious side over - I have way over indulged in carrot and swede…poor husband tonight!!! (shame faced smiley)

Ade xx

Add that made me laugh! X

I have been told it will be either Thursday 11th, Friday 12th or Monday 15th at very latest for me. Have heart scan on Wednesday. Apparently one of the chemo drugs can do something to the heart muscle so they inject with radioactive dye and do a scan. Feel my whole life now is hospital visits. Lovely dinner with my sister and her family tonight as it is her birthday and I took champagne and had a glass! First drink since January, and it did nothing to my blood sugar levels! Hurrah! But decided might not feel like it over the next months do why not? Great idea re nails. Might get mine done tomorrow. Have learned how to post photos do will send you one. Have a good sleep ladies. P xx

Morning ladies. Day 9 after chemo and herceptin and I feel so much better.  Mouth still tastes like the bottom of a budgies cage and legs a wee bit sore but woo hoo its good to be alive.

I had a heart scan for herceptin.  Wear warm clothes as they keep these rooms cool due to the machinery.  It takes over an hour and is a doddle - relax and think happy thoughts.

I live just north of Oban and today is just beautiful. Not a cloud in the sky and the sea is like glass.  Take a deep breath girls, we are all going to get through this and come out on the other side stronger.  

Loads of love

Ade xx

I’m in Edinburgh and it is a nice morning here too. Today I’ll pack an overnight bag - they told me to do this as sometimes we can be hospitalised overnight at very short notice and my husband would be useless! I am lying in bed still, reading a book, and waiting for my coffee! Then I’ll do my 6k and get off to see if I can get my nails done! No ill effects from the champers - blood sugars 4.8 this morning. Am now planning what to try today. My sister had made white chocolate and raspberry cheesecake for dessert last night and it looked yummy but did not have any. Today a slice of bread perhaps! Stay well ladies. P xx

Sampeds, you are allowed some days when you can’t be endlessly strong and thinking about others - and I absolutely understand what you mean about finding it all unreal.  I do too.  It has all been so quick that I don’t think we have time to get our heads round it before treatment starts. And I felt - and so far continue to feel and look - so well. 

This morning I realised that my wound was a bit red, and that I was really sore, so did what they told me to do and called the Breast Unit.  I was being examined 30 minutes later, and they did not think it was anything at all, apart from perhaps wearing a normal underwired bra too soon. Took my temperature, blood pressure, pulse etc and really had a good look at the wounds.  The gave me a soft bra to change into immediately, and one to take home!  I’m to pop in tomorrow at 8.45 am as the consultant will be there and he can see if I need antibiotics.  They are being super cautious I think as chemo starts very soon, and they don’t want me to have an infection. But I don’t think I have.  

Very impressed as always with the care and attention I have received throughout.  One of the nurses was the same one I had checking on me after both of my operations, and she is just a delight. Wicked sense of humour. She told me that anyone who has had breast surgery can get cosmetic surgery on the other breast at any time in the future completely free of charge!  Don’t know if this is just in Scotland though.  I had a WLE, so did not lose my breast, but we were talking about the great look that women have when reconstruction is done during the mastectomy operation, and that the issue might be that the reconstructed breast with the implant stays pert and perky while the other one heads south with the passge of time and the pull of gravity.  So, I asked her if I could perhaps get some liposuction instead, to get rid of the last fat that is proving very determined to stay on my stomach. She thinks we should ask the consultant tomorrow. Ha ha!  

Hope you are feeling OK ladies, and having a nice Saturday evening. Take care. P xx

hi ladies… I’m gutted here!!! I got told to take my acrylics off when having chemo because of infection and possible damage to nails …I’m lost without them… lived with them on for yes… If all of you are OK I’m gonna head out and get mine done again … anything to feel more like me again and keep some glamour going because what with bad skin and hair looking and limp and dull im loosing the will to live here xxx

Yes PaulS you’re right, surreal is definitely the word! I’m like you with the WLE and LNC, my breast feels fine but the LNC is still a bit painful, I know that’s normal though, glad yours is ok, I know about the bra thing, just started wearing mine properly after 4 weeks of sports bras and I it’s not as comfy as it used to be, but like you I know I’m lucky to still have a boob to put in it xxx

Jiordi there are so many conflicting bits of advice aren’t there!! I was gobsmacked when my onc said he didn’t have a problem with acrylics! I’d had them taken off for surgery and had resigned myself to having them off again today, but he was very casual about it and said about the dark nail polish for the T phase, so I’ve had a dark cherry shellac put on, very trendy don’t you know lol, had toenails done too, Lily who does mine says she’s done several chemo patients and was surprised when I said I’d heard they some have to take them off, it’s those little things that make a lot of difference eh!!
I’m ok now, just randomly watching a very old rerun of Miami Vice, oh we were so cool in the 80’s!! ?lol xxx

morning everyone.  All i can say about me is that day 10 and i feel great apart from odd nose bleeds, weird mouth and still a bit achey.

Sam, I was exactly like you.  It’s called fright and flight!  I just wanted to leap off my trolley and say ‘you know what, I’ve changed my mind’.  Don’t poop your pants…there’s  plenty of time to do that once your treatment starts!!!

I wish i could read all your posts as I type as my limited brain function cant remember who said what + this fekety feck preditive text does my head in.

I am getting a run out in the car this morning to…wait for it…the local dump!  Aren’t you all just so jealous?

Yesterday  I watched clips on Youtube for head scarf stuff.  wonderful tip, and I’ve tried and tested it, is old tee shirts.  They make fabulous head gear.  I showed my trendy 30 year old daughter in law this morning and even she was impressed. Wow, got something right!

Ade xx

Well just back from hospital. No infection - the consultant said probably a combination of returning too soon to an underwired bra, feeling returning after nerve damage/assault during surgery and fluid collecting because body not yet sorted out alternative drainage. So he removed fluid and sent me home to take standard painkillers if I need them. So impressed! He was lovely and told me to come back any time and that no antibiotics were needed and chemo can go ahead. Also to keep going with my daily 6k as exercise is so beneficial during chemo. I am happy!
Now having a coffee and relaxing. Thinking of buying second hand Nutribullet to blast veg and fruit into healthy drinks. Looks great! I have read that we need to eat our way through chemo as this will help us cope better and get the nutrients and vitamins we need when we don’t feel like eating.
Sorry to hear about your hair ladies but so impressed with how you are going for it and shaving. This is the worst bit for me - I dread losing my hair. But I know the cold cap only works for 30/40% of women.
Have a good Sunday (even at the dump!) and good luck with all this week’s treatments. Warmest hugs. P xx

pauls, I have a nutribullet and they are brilliant.  You can do your fresh pinapple with ice for your mouth.  I put in hemp protein with my combinations.

Lovely couple of hours out. had an icecream overlooking Oban Bay and watched the world go by from the safety of the car!!

Ade xx

 

 

Hi sunbeam…good luck to those having their first session tomorrow xxxxxxx it’s not so bad just that we would rather be doing anything else LOL xxxxxxx I’m on day 5 now. DAY 4 and 5 I have found I’ve lounged around a lot and feel like I’ve got a hangover. Hoping to get my own head back by tomorrow or soon? Woke up with raging heartburn so will be asking for meds next time. Right now guzzling gaviscon. Oh girls…I agree I didn’t want to sit in that chair…have they made a mistake?..I feel fine! Once we start we’re in the process and then it will be done! Xxxxxxx To be honest I think the mental adjustment has been a lot more challenging g so far…like you Samps I coped pretty well after initial diagnosis meltdown even after my mastectomy and reconstruction…it’s like you have to  become ‘ill’ but I keep trying to focus on the good it’s doing me in the long run…hair paranoia keep checking LOL might start wearing a scarf soon to get used to the new me…so weird! Good luck girls for next week…we are all here for you xxxxxxx

Good morning ladies, so happy to hear Rachael and lady grey feeling positive and quite well!! Pauls I too love my little nutri bullet, great for veggie soups too, though I’ve stocked up on every soup going lol.

Hope you’re still enjoying your ready to eat mash Rachael, I bought smash, but when near asdas I’m gonna try your one!!
Nothing like a cleansing trip to the dump ladygrey, and you sound lucky enough to be by some beautiful views and water, always helps put things in perspective I find.
Well today’s the day, this time in 6 and a half hours I start my onslaught against this evil little b****rd, I’m as ready as I’ll ever be lol, got my pineapple ice pops, kindle ready and husband has downloaded a couple of films, think it may be slight overkill, I’ll probably be happy to sit and people watch and just be for the first one.

Suns out, enjoy your week sunbeams, I’ll see you all in a bit, off to the loo, again, 3 litres of water since 4am, ??xxxxx

Good luck with your first treatment Sam.  I was in for nine hours for the two infusions.  It passed so quickly between talking to others, getting treatment, the tea lady and little naps esp after the piriton infusion.

Dreaded drippy nose, sneezing and headaches started yesterday afternoon and today  breakfast has been 40mgs of oemprazole, 1 gulp of gaviscon and 2 paracetamol!  

Hope you all have a great day.  weather still beautiful here

Ade xx

 

Had small meltdown this morning.  Went to collect my wig, and was already worrying about the colour before I went, so when it came out of the box I burst into tears.    It was awful!  Not like my colour at all, and looked so fake. The assistant was just lovely (a different one from last time) and she told me not to worry and got loads more out for me to try.  She also had me check in the daylight as well, rather than only in the artificial lights.  So, she has ordered another one but it is not in stock so could take 10 days!  So I cried again, as my hair could all fall out and I plan to keep going to work but of course couldn’t as that would mean no hair and no wig.  And I have hardly told anyone at work as I have planned to just get on with it privately. So she told me she has ordered in a second one in the colour I thought was better, and it will come in a few days, so if my hair all falls out immediately after chemo then I can go and get it and at least have something to wear!

 

This is the first time I have cried.  Diagnosis, two surgeries - and I was calm and measured - but this hair thing and chemo are freaking me out and I feel close to tears every time I think about it.  Could cope with chemo if I could keep my hair, but of course there are no guarantees that the cold cap will work for me. So, I then had to sit in the car and reapply makeup to hide blotchy eyes and a red nose.  What a state!

 

So sorry to moan.  Best of luck ladies with the chemo this week.  I SO hope you all get through with minimal SEs.

P xx

 

 

Thinking of Samps today!!! I remembered to eat my follies right at the end. What an idiot! Paul’s. I completely sympathise. I feel like I’m having similar meltdown. Wig lady called from the hospital and I jumped out of my skin! Oh my God I’m actually going to wear a wig! Ordered a long one in a weird sandy colour. I have short hair. The idea was that I could stick a beanie hat on it??? Got to get it fitted when I go for next oncologist meeting and bloods. Lady was lovely though. My kids went back to school today. My whole life is so out of routine…have to adjust to this new reality…but glad to try and establish a new system. Felt a bit spaced out in the playground but hopefully will get used to it. Paul’s I truly hope you feel a bit better…it’s a damn rollercoaster but we’re here for you xxxxxxx Jiordi…the wind LOL!!! Keep getting waited on that’s what I say…Sun is blazing in London today…there is definitely serenity in the air…must be no kids!!! Catch up later xxxxxxx Rachael 

Also Jiordi my hair is doing strange things…I looked like  demented peacock taking my daughter to school. Need a hat on it now! X 

Hi Sunbeams hoping everyone is managing. Day 7 ( ticking these days off is long!) Felt nauseous and decided to continue with one more med for today. To help get daughter to school and go for my hospital check up today. …My anxiety about this has been shadowed by feeling ropey so don’t know which is worse!. I seem to have felt rougher from day 4 to now. Not extreme just rough. First big zit on chin. NICE! This certainly is a test for our self esteem ladies! Well after it’s all over I’m going make myself look FABULOUS!!! Back to the TMI…haha…many visits to the loo…hope I’ll be ok on school run?! At the mo just want to be in the ‘safety’ of my own home and am going to delay seeing some work mates till next week. Think I may need to lower the expectations but I also want routine and feel normal. Check in later xxxxxxx lots of love xxxx