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May 2017 chemo starters

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Blooming heck mai, that’s a surprise to hear your neutraphils are that, I bet you were a bit 😳too. Do you think it’s because you had that cold during rads too that’s knocked them? Sue on Oct thread is off to Dublin between chemo and rads too. πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ» Neutraphils dance for you 😁😁😁you’ll get them up ok for next weeks test πŸ‘πŸ‘πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
treehouse
Member

Re: May 2017 chemo starters

Oh Mai. This Chemo just seems to hang on.
Does that mean you can’t go on the trial?
Jay68
Community Champion

Re: May 2017 chemo starters

Oh no Mai - not low neutrophils days again....!  I'm sorry but my hips just won't allow me do a dance for you today!  Do they know why they are low? x  

 

Mai7
Community Champion

Re: May 2017 chemo starters

Shi, you are right about protecting yourself for a while. I got a call from the research unit this morning. I have to have a repeat blood test next week as my neutrophils are currently not high enough for the trial. They have to be at least 1.5 and mine were only 1.1 and my last chemo was 25 Sept! Stupid ducking neutrophils! Xx
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse, hail β˜”οΈ it’s getting us ready for the sleet and snow forecast for overnight brr. Yep right with you in the put your space suit on and have a dip in the antibacterial tank before entering the house as you all know after the casa nhs stay in round 1, I’ve not been out, only for hospital appointments on week 3. I’m going to wrap my scarfs round my face, wear gloves and keep antibacterial hand wash in my car and handbag too, it’s just going to give me a bit of comfort and i’ll Also be carrying me bottle of thieves oil and paper hankies so I can snif that up my nose too again for comfort πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
treehouse
Member

Re: May 2017 chemo starters

Big hail storm β˜”οΈ
Jay68
Community Champion

Re: May 2017 chemo starters

Andi - I can relate to this feeling too - I work in school lunch hall and if I arrive a little late I'm totally overwhelmed by the noise around me - I'm aiming to arrive a good 5/10 minutes early at the moment as I find the gradual build up more acceptable! Same when in the playground....! eeks! Dodging balls is my biggest challenge at the moment too...!

On the plus side - it's helping with my confidence - so that's got to be a good thing! x
treehouse
Member

Re: May 2017 chemo starters

Haha πŸ˜‚ I felt like that coming back to a house with 4 kids after 6 weeks in hospital. My last 4 days I had been isolated!
Andi71
Member

Re: May 2017 chemo starters

Treehouse - I’ve refused visitors too, I totally get where your coming from.  I don’t have the level of energy that β€˜fit/healthy’ people have and I find their energy exhausts me.  

 

I can only suggest going at your own pace as far as getting back into being out there amongst the hubbub.  I remember a male cancer patient at work said he was so used to being isolated with limited family around him that he found going out so overwhelming and the noise around him took a while to get used to.  

 

Xx

treehouse
Member

Re: May 2017 chemo starters

Tatyana you have so much to think about. But it sounds like you have a wonderful husband in an beautiful setting.
Talk. Cry. Hug. Eat.
Still not sure what I am supposed to have learned from all this but I adore my family and appreciate all the people in my life.
Big love to you brave lady x x
Jay68
Community Champion

Re: May 2017 chemo starters

Hi Mai - good to hear from you. 

 

You're lucky to have avoided any skin issues after rads.  Mine weren't sore - but didn't look very nice!  Now it all looks like it did pre rads.  However, I do experience pain in my rib area where rads touched, but only when I've been lying on that side for too long.  I had a really fab time in London - very tiring though!

 

I do now have a bit of a cold - blocked nose, sneezy and general aching.   It started on Monday with a sore throat which I put down to just a dry throat - that's now gone leaving me with the blocked nose - lovely!  I am still managing to go into work for 2 hours as I feel being in the fresh air does help.  Hips still painful at times, from all the London exercise!

 

Anyway last day of January today - how quick did that month go?! x

Andi71
Member

Re: May 2017 chemo starters

Tatyana - Your place in Greece sounds like the perfect tonic.  I imagine the adjustment to going for shorter periods of time will be difficult because you love it there so much. Enjoy each moment your there, savour it and let it serve to be your goal to get back there again once you’ve started your treatment.  I cannot begin to imagine where your head is at the minute with starting treatment again, but the positive is that you have the opportunity to be treated and the side effects won’t be anything near Taxol!! Little mercies! Enjoy that sunshine! Try to concentrate on the good times your experiencing now, it’ll fuel your return!!

 

The weather is awful here 🌧I’ve never known such a grey wet January.  But having been like a caged bird recovering from this operation, I’ll be donning my coat and taking a short walk up and down our lane this morning just to feel any weather will be lovely!

 

Sending you lots of hugs xx

 

 

 

treehouse
Member

Re: May 2017 chemo starters

Morning all. Wow you have been busy this morning so much to catch up on since I went to bed!!!!
Trish my lovely so good to hear from you. The tiredness is tough. I didn’t have rads but I am still completely useless so I appreciate how you feel. Doing the dishwasher is a major event for me. Be patient with yourself. You have been through a lot. I think the councillor is a good idea and appointments are difficult to get.

Andi I remember that feeling totally overwhelmed but suddenly no energy. It’s gone - tell everyone- rest. I really wanted to celebrate but not yet. And then .... well I never got the chance.

Mai and Wolfee and all those back at work I think you are awesome πŸ‘. I don’t have the energy or brain 🧠 to cope with that yet.
We have been talking about me going back in 3 weeks. I can’t see it at this rate of recovery. Work sound happy for me to stay off till next sept ( what with herceptin and ovaries) but I am on half pay and that stops in May. Better hurry up with the pip form.

I also think I need to start processing in order to start living again. I think I am in a bubble to protect myself from feeling anything. Not sure if I’m ready yet to rejoin the world. I have refused most visitors since my second op only seeing close family who I can’t say no to. ( mostly to avoid germs)
Trisha69
Member

Re: May 2017 chemo starters

Tatanya enjoy Greece. xxx
Trisha69
Member

Re: May 2017 chemo starters

Thanks Andi and will rearrange it xx
tatyana
Member

Re: May 2017 chemo starters

Andi, hi my dear. I'm ok, in the middle of a 2week holiday before starting on my new chemo, capecitabine. We're at our second home in Greece. Having a lot of emotional ups and downs. We've been so lucky over the past 15 years to have this place, which we bought after my first cancer diagnosis. In recent years we've spent 3-4 months of every year here, working and playing. Now we're trying to get used to seeing it as a holiday home where, if things go well, we can spend the odd few days or a week, rather than a big part of our lives. I know we're very fortunate to have it at all, but at the moment the sense of loss is quite painful. We're trying hard to enjoy this beautiful place right now because we're here right now, and stop those never-again thoughts! The sun is shining and there are flamingos on the lagoon. How do I dare not be happy!😊
Andi71
Member

Re: May 2017 chemo starters

Misyangel - Thanks lovey πŸ’• It is the best news ever but oddly enough not jumping for joy or ready to celebrate just yet. That may sound weird but I’m still processing it all. We’ll go out with our best friends including the kids for a lovely meal but not just yet πŸ˜ƒ x
Andi71
Member

Re: May 2017 chemo starters

Trisha69 , Well done on completing rads. I’m sorry your suffering so much with tiredness. You’ve had a lot going on with your mum and trying to get genetic testing done for the rest of the family, maybe you are a little low emotionally from it all and that that is also contributing to your tiredness?! Maybe see if you can remake a bereavement councillor appointment and let it all out!!! πŸ’• x
Andi71
Member

Re: May 2017 chemo starters

Tatyana - thank you lovey πŸ’• How’s things with you? x
Andi71
Member

Re: May 2017 chemo starters

Mai. - yes I’ll keep popping the pills! πŸ˜‚
Good luck with your trial I think it’s great that you’ve put yourself forward. Hope life back at work has you feeling normal πŸ’•
Trisha69
Member

Re: May 2017 chemo starters

Thanks H. Sorry been awol just so damn tired xx
tatyana
Member

Re: May 2017 chemo starters

Correction: I'm scanxiety hell should be IN scanxiety hell. The dreaded predictive text strikes again!
tatyana
Member

Re: May 2017 chemo starters

Mai, thinking of you I'm scanxiety hell. Good luck with the results and with the trial. I hope you get the real drug and not the placebo, but at least you'll be closely monitored. And you'll be doing something good for future patients, and that is something to be proud of.
tatyana
Member

Re: May 2017 chemo starters

Rosie, sorry to hear about your niece, it's miserable for her. But we must be glad that at least she has the best possible chance of preventing the disease from ever developing.
I wish they would find a way to fix this gene, and soon!
Raitchr
Member

Re: May 2017 chemo starters

Hi Trisha lovely to hear from you. Hoping you are ok, well done for finnishing rads, its good to be done isn't it. Hope you can reschedule your meeting soon. Take care.

 

H

tatyana
Member

Re: May 2017 chemo starters

Andi, wonderful news, I'm so pleased for you!
Trisha69
Member

Re: May 2017 chemo starters

My mum died 2 mobths ago and had BC in 2000 then diagnosed with Bowel Cancer 4 years ago. My brother 3 years ago. He is fine and my bowel was checked. Have no family.history on my mums side as she was adopted. I asked my Oncologist about genetic test for my 3 daughters and he said it wasn't hereditary. mmmm funny how have had same BC as my mum HER + and have a Genetics appt on 5th Feb....?????
Trisha69
Member

Re: May 2017 chemo starters

πŸ™‚ xx
Trisha69
Member

Re: May 2017 chemo starters

I had help fron the Citizens Advice Bureau thru the local charity at Hospital. You have to fill the form with the mindset of how you feel at your worst.
Hard when you want to wait til u feel better to fill the damn form in. When do we get to feel better.... I am 3 weeks and 2 days post Rads and am still absolutely shattered. Get bursts of energy then flop. Meant to see a Bereavement Councillor this morn and am gonna have to cancel again. No longer have a car and no o w to ask for a lifr and the thoight of walking there and back makes me feel sick. S3nding love you all. xxxxx
Raitchr
Member

Re: May 2017 chemo starters

Wide awake 5am on the day I could have had a lie in until 7am as going into work late. Will get this sleeping for 8 hrs one day ....

Raitchr
Member

Re: May 2017 chemo starters

Mishy, I was 46 when diagnoised TN last Jan. I was offered test as my Mum had BC (not TN) 3 years before me. Could you not "discover" a distant relative has had it, only just found out blah blah, then they should test you??

 

Also PIP form, make sure you re read your application form before the meeting and imagine it is your worst chemo day, take yourself back to those horrible times when you answer questions.

 

H

Mishy18
Member

Re: May 2017 chemo starters

Rosie my dad died of advanced kung cancer in Sept gone very aggressive cancer my concerns started with him as before dad i was first in family to have a cancer diagnosis so when he was at i started to worry about the genetic link but my inc abd surgeon have both brushed it off, its more for my kids, granddaughter and any future grandchildren as they say about prevention being better than the cure if we could be tested then they could be armed with the info and choices to make their own descions x thanks Rosie as i know its a very personal thing im really sorry you and your family have the gene and best of luck with the Cape pills i hope they give you minimal SE im just pleased your team are pulling everything out of the bag to give the best prevention treatment x
Rosie65
Member

Re: May 2017 chemo starters

 Mishy - no I wasn’t the first person, my sister had bc age 29. When I saw the surgeon she emailed genetics before she even knew that I definitely had bc. I think everyone should be offered a genetic screening like other  screening programmes as standard. There is some talk about doing this but they’re not sure how it would be administered and it would be expensive. I thought they now tested anyone under 50 who had TN

 

The trail can get lost in families if men have the gene but don’t develop cancer and they don’t know they have it. Also my great grandma had bc but my grandma didn’t but she must have had the gene and passed it to my mum who died from ovarian cancer and passed the gene on to me and my two sisters.

 

Good to hear from you Mai, you must be busy now you’re working full time again. I’m looking forward to going back but it will be a shock at first especially as I’m now going on to Cape. Good luck with the scans and the trial, at least you’ll get regular checks.

Mishy18
Member

Re: May 2017 chemo starters

Sorry andi don't know why that post said recipes it was meant to say recuperation!!!!!
misyangel
Member

Re: May 2017 chemo starters

Andi fantastic news it's the best feeling ever and I wanted to scream it to everyone whoooo hoooo πŸŒˆπŸΎπŸ€

 

heather really hope you get allocated the pip it is really nerve wracking waiting.  I actually had all my back pay paid in to my bank account before I got the letter which came a couple of days later 

Mai7
Community Champion

Re: May 2017 chemo starters

Andi, that's excellent news, the best you could hope for. Get those tamoxifen down you and Herceptin and get on with life now! Celebratory hugs and dances coming at you!   πŸ€— πŸ’ƒπŸ» Xx

Rosie, yes, bittersweet news for your niece. So glad you have been able to help her with the genetic testing and I'm sure you will be able to support her well through her tough decisions. Xx

Treehouse, glad your heart rate is going well but don't forget your hypochondria could increase it so keep that it check too! 😜 Xx

Jay, I've not been on for a few days, being back at work leaves me little time now! Good to be back in the full swing of things though.  No problems post rads. No soreness or anything. Just a bit of tenderness near scar area. Hope you had a lovely birthday weekend in London. Xx

 

Had my scans today and have to wait until next Tuesday for results and to start the trial. A whole week of scanxiety! Brings all of those horrid feelings back from nearly a year ago. Still, if there is anything lurking, it's best I find out early and get it managed quickly.

best wishes everyone and hugs to all.

xx

Mishy18
Member

Re: May 2017 chemo starters

Glad to hear you had your pip meeting Heather they cancelled mine but its rescheduled for next Tuesday am hope it goes ok xx
Mishy18
Member

Re: May 2017 chemo starters

Great news Andi just what you need to hear xxx its good to hear those words time for some proper recipes without anything weighing on your mind xx
Mishy18
Member

Re: May 2017 chemo starters

Rosie i hope you don't think im prying but were you the first person in family to have bc i want the gene test but no one before me but wanted it for my daughter son Grandaughter im TN and just wanted to be able to help prevent if i could but as im over 45 my trust wouldn't support the test x
Andi71
Member

Re: May 2017 chemo starters

Buddyfan & Daffodil54,

Thank you very much ladies πŸ’•

 

Jay, very kind words bless you πŸ’• ... now don’t you go making me cry 😒

 

Rosie, It’s bitter sweet news for your niece,  but still not the news she wanted to hear I’m sure.  Tell her she has oodles of support from us all xx

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Oh Rosie so sorry your niece has tested positive. Glad she will be able to have preventative surgery but what a shock for her, sending her hugs and love πŸ’•πŸ’•πŸ’•shi xx
Rosie65
Member

Re: May 2017 chemo starters

Excellent news Andi, I’m so pleased for you.

 

treehouse - glad the heart rate seems to have calmed down. I think the extreme hypochondria will be with us all for some time! I’m hoping that being back at work will help.

 

Well I must have had a premonition this morning, another niece has tested positive for BRCA 1. We are certainly bucking the 50/50 statistic. Our genetic counsellor is very excited by our family tree! At least they can have preventative surgery, they have me to thank for that πŸ˜‚πŸ˜‚

buddyfan
Member

Re: May 2017 chemo starters

Andi, what fantastic news. Congratulations πŸŽ‡βœ¨πŸŽ‡βœ¨πŸŽ‡βœ¨πŸŽ†πŸŽ†πŸŽ†βœ¨πŸŽ‡βœ¨πŸŽ‡βœ¨πŸŽ‡
Jay68
Community Champion

Re: May 2017 chemo starters

Any news from Mai lately? Or have I missed it?  I hope all's OK - how are you fairing post -rads?

Daffodil54
Member

Re: May 2017 chemo starters

Great news, Andi! It's such a relief to be given the all clear. 

Enjoy having a break from hospital appointments except for your Herceptin.

 

Jay68
Community Champion

Re: May 2017 chemo starters

Hi Heather - I'm interested to hear how the pip assesment went so I've sent you a pm.

J
Jay68
Community Champion

Re: May 2017 chemo starters

Wow fantastic news for you Andi - it's so lovely when you hear those words - I remember them well.  The emotionally drained feeling will, I'm afraid, last some considerable time!  

 

I'm glad I found you lurking and you came and joined us on here - I'm sure you'll agree the support on here is truly amazing.  Thank you too Andi, as you've also brought a lot of comfort to us on here with your kind words of support and compassion xx

 

 

 

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse πŸ’ͺπŸ’ͺπŸ˜˜πŸ˜˜πŸ‘©β€πŸŽ¨πŸ‘©β€πŸŽ¨πŸ‘©β€πŸŽ¨you are a warrior and bionic woman remember how much ass you have kicked on your journey πŸ€Έβ€β™‚οΈπŸ€Έβ€β™‚οΈπŸ₯ŠπŸ₯ŠπŸ₯ŠπŸ€Όβ€β™€οΈπŸ€Όβ€β™€οΈπŸ€Όβ€β™€οΈ We will step by step and πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»By πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»πŸ•ΊπŸ•ΊπŸ’ƒπŸ»πŸ’ƒπŸ»πŸ’ƒπŸ»Get there, bit of destiny’s child independent woman playing for you πŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨βœ¨shi xx
Andi71
Member

Re: May 2017 chemo starters

Heather - thanks lovey! πŸ’• emotionally drained but happy. Well done on sorting out your PIP hope it’s all gone well today xx
Andi71
Member

Re: May 2017 chemo starters

Shi - thanks lovey πŸ’•πŸ’•πŸ’•πŸŽ‰πŸŽ‰πŸŽ‰