Spring into chemo in March

[suzy52]

Hey Nipinuk you've returned to us! Glad to hear you had a good time on holiday, you certainaly didn't let the grass grow under your feet, no wonder your petrol bill was sky high! 

Its a great pity you can't join us for lunch on the 24th  😞

I think its a good idea about a flu jab, not thought of that till you mentioned it. 

xx

[Nipinuk]

I'm back! With chemo brain, school and work, I had a job trying to post here! I'd somehow created a second username...duh!

Anyway, all the best to ladies going through rads. Karen, they tattooed me lying down on my first app which they call treatment planning. I can't believe that I finished rads on 8 July! How is your surgery scars healing? Are you going for physio?

Janey - my heart goes out to you. It must be so difficult putting life on hold for even longer.

Suzy, I've pm-ed you a message. I'm so sorry I can't make that date as in-laws are coming to stay until 30th. Gutted!

Angela, great to hear you're in Spain enjoying the warmer weather. It's been freezing here the last few days!

I had a wonderful time with family driving and camping around Scotland. We took a week break at home where hubby continued with building work, slipped and put his foot through the ceiling and cracked a rib! Four days later he drove us all to Holland and then on to Germany to visit friends. I've put on weight from eating all that meat over there. We only got back last week.

Some useful information in case anyone is thinking of having flu jabs (you can get it free on NHS).  Some brands contain mercury based preservative. Mercury-free flu jab brands available on the NHS are Begrivac from Wyeth, Inflexal V distributed by Masta, and Inactivated influenza split virion BP, manufactured by Aventis Pasteur.

Also, for anyone swanting to eat well, don't be ashamed of posting Wanted messages on freecycle for fresh food like apples/pears.  I did (explained my situation and that unwaxed apples are expensive/hard to get) and got lovely, kind and generous responses. I'm hoping to get some next week for juicing, cooking and eating.

Is anyone else finding their finances stretched? The most expensive part of our road trip was petrol. Coming home to see our bank balance was scary!

Take care and big hugs xx

[AngelaG]

suzy, yes, we've tried to skype and facetime, but it keeps cutting out before a conversation can begin. so frustrating. however, yesterday i bought a really cheap phone with calls to anywhere in the world (more or less) for only 0.01 cents a minute...after 10 mins it goes up, so you can hang up and re-dial. so i've been able to talk to family now and am happier! thanks for your info though. it's good to share information xxx

[suzy52]

angela you need skype! its free and you get to see your family and friends too!

[AngelaG]

hi suzy again, and daffodil too

mijas is a beautiful little white village famous for it's donkey taxis (which actually don't take you from A-B, but i9n a big circle aroung the village. despite coming here for over 20 years, last week we found a lovely cafe/restaurant with a "secret garden" which we never knew existed, and also a super little fresh fruit, veg, meat & fish market. it's great for connecting with spaniards as opposed to ex pats (in abundance here aprox 50%!!)

the church in Fuengirola was full to overflowing on our first sunday (curiosity for sure!) and 2 portuguese became christians, so we were very happy bunnies. then we went for tapas which on sundays at 3pm is a great experience (and we have a discount card for frequent custom!!!!).

this week we are "on holiday", so today we were walking along the beach front (still too crowded for getting on the sand) and had an icecream!! it's very humid. i bought a new cheap phone and can now make calls to uk 10 mins for £1 so my heartache over leaving family has eased somewhat.

just think, this time next year we'll be looking back on this time as just a distant memory that can be forgotten (apart from the reminder of the daily pills!). insomnia and dizziness can apparently be an SE of the pills.

speak soon

A xx

[suzy52]

Bonjour

Angela, good to connect again as you say and I'm glad to hear your having a 'holiday' keeping the new parishioners at arms length. I'm sure they all mean well but all the attention would be exhausting and suffocating in your tender new 'normal' state. Hope your enjoying your new posting, its a pretty town I know, and all that delicious tapas! 

Daffodil, no stress about making it for lunch - although it would be lovely to meet you, you mustn't exhaust yourself  through RADS.  So,  I'm responsible for your new found freedom in exposing the barnet, I love it 😄 

Linda2 is that you Nipinuk?  What happened to your message? This new forum is a mess!

Love to All xoxox

[Daffodil66]

Hi ladies, I thought we have a new girl but is it Nipinuk? I've just had to reset my password again! I hope everyone is doing ok, Jlr sorry to hear you are having a worrying time, I hope you have some answers by now, big hug. 

Suzy, would love to meet up but am starting rads, if times work out ok then will be able to. Also you encouraged me to go wigless, nobody stares but people seem more friendly & kind! 

Angela, good to hear you are in sunny spain at last & things are going well. 

Ive felt happier these last couple of weeks, recovered from surgery & chemo at last, still tired in the evenings though. Have been painting the outside of the house & actually enjoyed it! Nice to do something constructive & distracting.  I am starting rads on Wednesday & wasn't worried about it but for some reason have now started to dread more treatment & am having negative thoughts again. Thought I had turned a corner at last, just hope once they are over I bounce back again. Talking about bouncing, weight is shifting very slowly despite big walks & healthier eating:P! Anyway must go, I hope you are all doing & coping ok now treatments finished for most of you now. Goodluck to those of us having rads soon xxx

[Guest user]

Weird my old username didnt work and I seem to have a different one.

[Guest user]

Weird my old username didnt work and I seem to have a different o

[AngelaG]

hi suzy, it's great to re connect. i hope it's going well for you. it's been pretty full on this week with people from the church wanting to connect with us...someone every day! but i've put my foot down for next week and we'll behave as if on holiday, and not make arrangements with anyone.

our rented villa is ok, but we realised straight away that it wasn't for good, so we'll be looking around for others in a few months time, just to see what is on offer.

hope your week will be uneventful other than the things you enjoy

love A x

[suzy52]

Hola! Buenos Dias Angela 😄

Glad you finally found us, we were feeling a little thin on the ground! Hope you and your OH are settleing in well. I've got the joys of hot flushes too although I'm on anastrozole. Its a shame you won't be able to join us for dim sum on the 24th, we will be thinking of you in sunny Spain! 

xx Suzy

[AngelaG]

hi everyone, i have finally worked out how to get onto our thread!!!! didn't take long did it? there have been a few melt down moments of late, but i see from your comments that i'm not alone. also insomnia as someone else has written. i agree with you all about the new forum. don't like it really for the same reasons as you. it's just not as easy to remember what's been written.

ANYWAY guess where i am?................ESPANA! arrived on the 3rd. it was really hard to say goodbye to children/grandchildren, but i'm sure they'll be out to visit (especially as we said we'd pay the fares (fools that we are!) 

would i be right in thinking that we've all more or less finished rads?

well done y'all, and chin up to those still on the journey...nearly there.

i'm on letrazole now, with the joyous SE of hot flushes. i hope they settle down and go away eventually. the insomnia has meant that i can get a good internet access at this time of night...it's so slow and very hit and miss (unless we're doing something wrong!)

good news re son and DIL. she has a job, and he is going to be a foster carer (or rather the main one out of the 2 of them). they are so much happier now that the burden of unemployment has lifted. he actually celebrated his birthday on 31st after 16 years of not wanting to! the fostering also solves the problem of the bedroom tax for them.

i'll try to write again soon...if i can find the darn thread again next time!

love to all

angela xx

[Woolfie]

Sorry about all the worry you are going through, Jlr,. Lets hope it is as Suzy suggests and it is an infection. My thoughts are with you.
Looking forward to meeting up with those who can make it on the 24th. Thanks Suzy for organising this.
Our van which was so useful when OH was having his treatment is now sick! Seems I may have contributed by jump starting it without first isolating battery ---well nobody told me did they so a panel has burnt out. It as to go to Birmingham to be fixed! Hopefully will be done when we get back from the Scillies.
New kitchen fitted but not decorated and we are surrounded by mess, sandwiches and microwave meals have been the order of the day. Will have to find a local launderette so can make sure we have clean clothes for holiday. It is all a bit chaotic but we are determined to enjoy ourselves the mess can wait.
OH was examined yesterday and onc said things looking normal but he will have to have ct scan in a couple of months. So it is good news for once.
Hope all you lovely people are doing ok and have a nice weekend

[NoraBatty]

Jlr Hope everything goes well for you - am thinking of you - take care Nora x

[suzy52]

JLR I really feel for you. Hope you get some answers soon. Swollen lymph nodes in your collar bone area could be  a viral infection - I do hope is that straight forward. It must just feel like everything is snowballing and I can understand your anxiety. Sending cyber hugs.

xx 

[Jlr]

Oh well my waiting just goes on and on! I now have two swollen lymph nodes on my collar bone to add to the additional nodules on my lungs! Waiting to see oncologist now to find out if they are significant or not........... Grrrr will ths waiting ever end??? Sorry girls just ended to vent ! Hope you are all doing well xx

[suzy52]

That's great Honeymonster - I thought Lunch, to be honest don't know of anywhere that does it in the evening.

xx

[Honeymonster]

Hi Suzy, I can make 24th all going well after rads. Are you thinking evening dim sum? X

[suzy52]

Re Dim Sum 25th Sept

I got cottom wool for brains! Can we make it the Tuesday 24th ?

I mixed up my appointment dates! Do hope we can get a crowd 😄

Jude I will have my port till Feb! Its french protocol to leave them in place for 6 months even though its redundant (said with everything crossed). Hope the herceptin infusions are going ok, nearly there. 

xx

[Cassowary]

Suzy - portocath, no , I haven't had mine removed. It is staying for the duration of my. Herceptin course, so likely August at the earliest before it goes. What about you?

Hope everyone is doing OK. Whether still undergoing rads or post rads.

Jude

[suzy52]

Hope everyone is having a good weekend. Having friends over for Sunday lunch, and as I'm not a morning person, I'm busy with the cooking  prep today.

Calling all who live in the London, home counties area( thinking, Woolfie,Angela, Christine, Nipinuk, not sure of where others are based) who would like to meet up for Dim Sum on Wednesday the 25th Sept - send me a message it would be fun to meet up at last!

xx 

[Daffodil66]

Hi Karen, I went for planning yesterday & was tattooed lying down. The whole process was quick. I hope you are feeling a bit more comfortable & are getting about now? X

[Guest user]

Hi I have my first Rads appmt on the 20th Sept, can anyone advise if you have your tatoo done at the first appmt? Silly question : are you standing up or lying down for the treatment? Not sure when they will begin, bit of a waiting list here.
Thanks Karen xx

[Daffodil66]

Hi, thanks, just phoned them & they are 3 weeks post treatment too but very helpful. Insure cancer quoted £600!!!! & Ok to travel will do cover but refused to quote until after rads finish. Thought this would be easy 😛 xxx

[suzy52]

Daffodil, try  www.insurepink.co.uk they seem ok £20 ish for 10 days in Europe.

Good luck!

[Daffodil66]

Thanks, I phoned them but they won't insure me as will be having check ups every 6 months, they don't seem to be very consistent? Did you arrange it when you had finished rads? I phoned freespirit & they will cover me as long as fit to travel for £66 so it's a big difference. But desperate to get away once finished treatment & gives me something to focus on! Xxx

[shells64]

Hi ladies

Hope u are all doing well . Im ok starting rads today this afternoon also hair growing well no more head wear for me gone a lot grey lol hands and feet still numb and arm still playing up but doing ok feeling a lot like myself

Honeymonster: Good luck for today

Suzy52: Gald to see your doing well

Cassowary:So pls to hear u have finished rads gald all went well

Twinnumber:Good to know about the insurance thank u i would like to get away after rads

well ladies have a good day speak soon xx

[Guest user]

I managed to get travel insurance through Eurotunnel Insurance (you don't need to be travelling with them to get their insurance). I finished my radiotherapy on Sat 10th and flew out to Nice on the following Saturday so only 1 week after treatment finished. I mentioned my existing medical condition and all they require is that you are fit to travel (you don't need a dr's letter to get the insurance but should you make a claim, they will check with your dr that you were fit to travel) and that you aren't undergoing treatment at the time of travel. It cost £17.95 for the policy (single trip) and I think a year's policy is about £45. Hope this helps.
Jess x

[Daffodil66]

Hi, Does anyone know why my text looks dodgy? You all seem to have mastered it! Have been trying to sort out travel insurance today but it seems we can't be insured less than 3 weeks after treatment ends. Felt a bit fed up as my rads don't finish until 4th oct then its half term 3 weeks later! Has anyone else tried? Suzy, I had my portacath removed last week & was fine but no sedation this time. I wish I was brave enough to ditch the wig as getting uncomfortable now hairs getting thicker, I keep setting myself deadlines but just can't bring myself to do it. Oh & another tamoxifen se is that I can't drink wine without getting a tummy ache all night! I hope rads go well for you both tomorrow & the 3 weeks isn't too much hassle. Take care everyone xxx

[Honeymonster]

Hello, good to see your updates. Well done for those finishing rads. I start my 3 weeks tomorrow like Shelley. I'm slowly getting back to normal, still tired out though. Hair is growing nicely and I too am going out without scarves. Eyebrows came back last week and eyelashes are doing the same this week!
Hope you are all ok xx

[suzy52]

Hello All

Jude, Glad to hear the RADS are over. Have you had your port out yet?

Daffodil, my calcium levels are good so no supplement for me, just low on the vit d.

Now I've forgotten what everyone else wrote, this new forum is not very friendly!

So hope all are doing well, I'm feeling much closer to normal and have abandoned the scarves and hats although I only sport about 5mm of hair - its liberating! Eyebrows and lashes are showing signs of life too 😄

Take care everyone xx

[Cassowary]

Hi Ladies, hope everyone is feeling positive . I finished radiotherapy last Friday and so far have not been effected by SEs. Keeping applying aloe vera. To help the skin. Good luck to those of you who still have sessions to get through.

Jude

[Daffodil66]

Hi Ladies, managed to find you at last! Good to hear everyones coping, I know what you mean about the new normal we have to adjust to. Also find it quite hard to cope some days. I have my rads planning tomorrow then start in 2 weeks due to having a seroma which has now slowed down. Shells - I'm having physio now which seems to help with arm as despite doing all my exercises religiously, they weren't helping much. As have alot of scar tissue & cording. Tamoxifen is causing hot flushes for me too & insomnia (is that an se?) but apart from that can cope. Mungosmum/Woolfie I hope you both have a fab time on your hols. One thing I've noticed is my energy has come back at last & it feels great! 😄 Have a lovely day everyone xxx

[Guest user]

Hi everyone . I'm just back from my holiday and I've managed to change my password and get logged back in but I can't see everyone's posts to reply so I will post again in more detail in the next couple of days (I'm off to my brother's for a couple of days). Wolfe & Suzie, I am on Anastrazole too but I haven't been given the Vit D & Calcium tablets so I will ask about this at my next appointment on the 20th. I seem to be ok on the Anastrazole except for some joint stiffness, hot flushes and a very tinny mouth in the evenings. I've only been on it for nearly 2 months so I expect I've still got to get used to it. Will be in touch again in more detail in the next couple of days. Xxx

[shells64]

Hello ladies

Cannot get use to this cannot go back and look at post but i hope u are all doing well start rads on thursday the 29 just would like to known how long this pain and numbness goes on under the arm . well ladies i hoped u all had a lovely weekend speak soon take care

Spoiler

[Choccy61]

Hello everybody!
Hope you're all well and enjoying the Bank Holiday weekend.

Like others I'm struggling to get to grips with this new forum but I'm sure I will eventually! Mungo's Mum, I agree, it's frustrating not being able to look back! It will make for shorter posts from me as I can only remember the last one or two posts!

I finished rads a week ago and my skin's not too bad at all - just a bit pink and itchy so keeping going with the aloe Vera gel. The girls at work bought chocolate cake and champagne to celebrate the end of treatment, which was lovely of them and they've been so supportive. I'm on tamoxifen and hoping the hot flushes calm down a bit soon - quite glad I still don't have much hair!

Struggling to get to grips with the ' new normal ' a bit. Every ache and pain I get sends me into panic mode. One of my sisters said it will be nice to get back to normal but I'm not sure life will ever be quite the same again. I have another heart scan on Weds and blood tests because of herceptin - fingers crossed they're all normal!

Jlr, good for you with your positive attitude. I hope the next 3 months goes quickly for you. Woolfie, I hope your OH's results are good - and enjoy The Scilly Isles. Karen, hope you're still recovering well!

Apologies if I've missed anything and good luck to those of you who've yet to start rads!

Enjoy the rest of the Bank Holiday weekend.
Carol x

[NoraBatty]

Still trying to get used to new forum and finding it a bit confusing... Hope you are all OK. I start radiotherapy soon and am now also on letrozole.  Take care Nora x

[Mungos_mum]

Hi All,

I'm glad people seem to be returning to normality, judging  by the lack of activity on the forum (though the new format may be scaring some off!!).  One irritant is we can't look back when writing and my memory is pretty hopeless at the moment, so Nora (?) I think melt downs are more common than we realise, and it wouldn't take a comment like the one you got to set me off!  I have been feeling fragile for a while, and had a little weep to myself on the way to Chichester yesterday to visit a post surgical clothes shop to buy a swimming costume for my holiday.  Although I know post surgical wear is more widely available, it felt incredibly sad that I had to visit such a place at all.  I am sure it will become less of an issue over time, and the weep did help!!

I was speaking to a friend today who was shocked that the NHS do not offer counselling as routine after our treatment, though I do know it is being discussed as a possibility,  This thread has been so helpful to me, thank you all.

Have a lovely bank holiday everyone, xx

[suzy52]

Hi Karen

Not liking this new forum either! Good to hear your sounding so positive. The big re-enforced knickers are essential kit, 😄 Not suprised your not able to stand up straight yet, I did think about that before your op, but didn't want to scare you - its cause your so darn slender girl! They had allot more to go at on me!

Take Care xx

[Guest user]

Hi ladies This new forum is a bit confusing, hopefully I'm doing this right? It took me years to figure out how to watch Lovefilm through my OH's play station, I'm not very technical. I hope you're all feeling great and enjoying life again? I am recovering slowly but surely from my Diep recon & mx, still finding it a struggle to stand upright or walk too far. The Bridget Jones style pants are helping and I've got a lovely flat tummy. My hair is growing and I've got my eye brows and eye lashes again hurrah! I reckon we all deserve a nicd holiday after what we've been through, enjoy! I want to thank you all for your words of wisdom, banter and support during the past 6 months, it has been invaluable Keep in touch Karen xx

[suzy52]

Hi Woolfie,

The new look forum has fooled me. I supose we'll get used to it! Everyone seems a bit quiet its true.

I'm on Anastrozole too and vit d. My bone density scan was very good but my bloods said I was defficient in vit D so I have an ample every 3 months, I also learned its suposed to help reduce risk of re-occurance if your levels are kept up, so all good stuff. 

Hope the rest of us Marchies are doing well.

I had a lovely holiday on the Isles of Scilly many years ago - Tresco was particularly lovey with the sub tropical gardens and Sark was very interesting. Here's hopeing you have a great time.

I sent you a personnal message did you get it?

[Woolfie]

Anyone else struggling with the new forum?  Hope I am getting this right.

Hope everyone is doing ok. None of us seem to post as much now but I hope we will continue.

I have my last radiotherapy session on Tuesday I seem to have caught up with some of you. It has gone very quickly and I have had no side effects at all. Saw onc on Wednesday and been prescribed Anastrozole aong with vit D and calcium tablets as one side effect is osteoporosis another is it can cause hot flushes what joy! Was a surprise as I was expecting tamoxifen. It is because I am post menopausal. Loved it when the doctor asked me if I had finished my periods! I am 65! Is anyone else on this drug?

I have to have a bone density scan which I now know is different from the bone scan I had previously as that was looking for cancer.

We have booked a week in the Scilly Isles from the 11th Sept travelling by train from Paddington and ferry from Penzance. I am really looking forward to it I think it will do us both good to be 'away from it all' for a while. Have the Carnival on our doorstep this weekend, my neice and her daughter staying for a few days next week, doing my first car boot sale on the 1st and a new kitchen being fitted by the housing association the week after so it is all going to be full on. Great!

OH much better but we still do not know outcome of treatment went for an appointment yesterday and it was so packed (standing room only in the waiting rrom) he asked them for another appointment so we go back on the 5th.

Hope you are all regaining energy and moving on.

[suzy52]

Bit of a dogs dinner this new forum - might just be me in dinosaur mode though! Hope everyone is doing well and those having RADs are enduring.

Seems like this week will be the ;ast of the very hot weather for us here in La Belle France - so Benson and I are off to the river 😄

xoxoxox

[Guest user]

Nipinuk so glad you enjoyed your trip to Bonnie Scotland, hopefully you had nice weather, it has been glorious here for the past 3 weeks. I'm doing well thanks, yes all the drains came out thankfully, my scars look nice and clean, not at all like Frankenstein's bride! I still can't stand up straight or walk too far, but I'm making progress every day. My Mum has been staying with me for 3 weeks, she's been a great support. Enjoy your adventure in Germany, sounds fabulous. Best wishes Karen xx

[Jlr]

Well my oncologist couldn't give me any answers (didn't think he would be able to) he said he can't rule out a spread of the cancer but that it would be unusual after the chemo I have had. So it's definitely a wait and see game! So have decided to not think about it at all until scan time! On a brighter note I just received a lovely bouquet of flowers from work ith a note saying "you deserve a nice long rest now" how lovely is that! Xx

[suzy52]

Hello all
Have caught a nasty cold, hence the extreme tiredness of late. Just can't do much at all and have aches and pains in my hands and forearms, how wierd is that? Trying hard to put all my stuff in the new kitchen, but its taking forever.
Off to see the 'Grand Fromage' onco on Monday for my meds, so had full blood screen this am, 8 o'clock! Still it was a perfect oportunity to nip into my fave patisserie and grab a couple of pan au raisin, yum!
Nipinuk, glad the Scotish trip was a success, hope our OH and YS are better before you go to Germany.
Pammy I think i would have lost the plot with the 'you need counciling' comment! People have no idea of our personal battles through this mine field - think I would have told them to 'butt out' 😄
Angela I'm trying to listen to my body and rest up, but there's this other nagging little devil on my shoulder who keeps digging his claws in and calling me lazy - I need someone to take a pot shot at him! Hope the packing is going ok - I've always found when I reach a destination I look in to packing crate and wonder why on earth I thought we would need some stuff! There are things in my attic I've forgotten we ever had and now I have to find sapce for them!
Karen hope your scars are knitting nicely and your keeping that sexy girddle on 😉 Did they let you home with drain in?
Christine hope the jungle garden is looking lovely and Mungo is keeping you entertained, Benson is slowly getting used to the new kitchen, he hates his routine disrupted!
Nora, great to get that last chemo under your belt - your sounding very upbeat!
Must go and hang out the washing - with help from Lidl, (cat rescued as a kitten fron Lidl's car park 4 years ago)
Have a great weekend, off to a concert of Vivaldi/Boccherini tonight, should be good oxoxox

[Nipinuk]

Janey, I'm so sorry to hear your life's put on hold again! I'm told lung nodules are quite common. 3 months is a long wait. It's so hard and I really feel for you. Big hugs x
Shelley, great to hear from you though sorry to hear about your legs. I haven't had that problem. Just having to use facial wax to get my tamoxifen induced moustache off! My surgeon told me that numbness to fingers and toes can last for up to 2 years! Hope yours won't be that long.
Angela, I'm so pleased to hear that you're having a weekend away. Hope you're up for some lace action 😉 big hug to you too. You've got so many things to deal with that sometimes it's all just too much x You're a positive and glass half full person and I'm glad you sound upbeat with only 3 sessions left!
Pam, 4 app at 2 hospitals! Gosh I'd have a meltdown too. I guess they feel they have to do something when you're upset and don't realise that sometimes we just need to get all that out before we feel better.
Karen, how are you? Have they removed your drain yet?
hectic over here as usual. Got back from wonderful Scotland roadtrip at about midnight Tues. Hubby n ys fell ill on Weds n Thurs. saw two sets of friends today. Lots of housework and sorting out my laptop to work again. Booked eurotunnel and we're going on another road trip next week - Germany!

[Honeymonster]

Hi Shelley, I have the same start date as you for rads! Hope you are doing well?

[shells64]

Hi everyone
Have not looked at posted would take to long but i do hope everyone is doing well will catch up with post at weekend im starting rads on the 29 been to hospital today ive been a bit down due to feeling like im still on chemo my legs my fingers and toes still numb my finger nails coming of hear i go again ranting well ladies have a lovely weekend thinking of u all take care speak soon xx

[AngelaG]

12 rads down, 3 to go........woohoo........then just SE's to get over from all the interference and meds!!!!!!!
have a good WE dear all
A xx