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May 2017 chemo starters

Rosie65
Member

Re: May 2017 chemo starters

Have any of you ladies requested a copy of your pathology report? Or just discussed it when you met oncologist. Was wondering whether it was worth getting a copy before my surgery follow up with onc.

 

Was looking at when I need to return to work today as full pay will run out soon. Looks like if I have a phased return the days I’m not in count as sick absence. I didn’t realise that so will have to be careful not to reach the limit but don’t think could cope with full time straight away.

Mai7
Member

Re: May 2017 chemo starters

Rads 8/15 done today. Skin is doing well so far but I have quite a bit of pain on the edge of the scar near the armpit. Feels bruised and tender. I think all the coughing I've been doing hasn't helped.  I'm trying to stalk my Oncologist via his secretary at the moment to get on a clinical trial whilst I still have a window of opportunity to meet the entry criteria.  It's for ER+ HER2- "high risk" (lump over 5cm, more than 4 nodes positive). It's called MonarchE if anyone else is interested and meets the criteria.  

Mishy, that must have been very upsetting to hear and I can't imagine how hard those cries must be for the parents. This ugly f@#%^*g disease. Xx

Jay, I thought I was back at work today, realised I didn't feel well enough when I woke up, rang my boss and discovered I should still be on holiday anyway! Good thing I didn't feel well enough to go in or I'd be the only one there!  Some people just don't know how to enjoy themselves when given an opportunity to do so! 😂

Treehouse, hope you are still on target for the great escape! Xx

Shi, hope you are doing well now the steroids have worn off. 💗

AnnieA, I'm sure deciding on what's right for you for work will be important in keeping your health a priority.  I think staying in work can be good for wellbeing as long as it doesn't add stress and if getting the balance right means reducing your hours then so be it because without your health you have nothing.  Xx

Mishy18
Member

Re: May 2017 chemo starters

Heather it was awful to hear i don't know how i composed myself i know its necessary treatment even for a child but heartbreaking to think they should have to endure it i felt like such a wuss when i feel 😝 after hearing that little one cry like that such a brave little soldier x
Raitchr
Member

Re: May 2017 chemo starters

Hi Mishy. Hope you are ok after your rads today. Must be heart breaking to hear a child go through it, and I feel for their parents.

 

Dont worry now about going back to work. Just concentrate on getting through rads. I finished chemo 24th Aug and went back to work 6th Dec. Although I wasnt 100% I used holiday for Dec and just worked 3 hrs one morning a week. Is this something you could do to extend your time off? For me it has been ok doing this, a gentle lead in to work then proper phased return starting tomorrow for 4 weeks.  It has really given me 8 weeks of phased return which I think I really need. 

 

My hands are sore, joint pain and stiffness and my legs and hips hurt if I sit for too long. My concentration span is about 10mins!

 

Back to school and work tomorrow, shame the holidays weren't longer, have enjoyed staying up late, getting up late and relaxing!

 

❤ Heather

Mishy18
Member

Re: May 2017 chemo starters

On a positive note i must say its not long now and looking forward as im sure all if us are 😊
Mishy18
Member

Re: May 2017 chemo starters

Apologies for the typos x
Mishy18
Member

Re: May 2017 chemo starters

Ladies happy new year! Annie i think im going to have to make a decision about work too im awaiting a letter from HR which i think is going to be telling me i need to be back by April my boss said even if im there for 2 hours but how can I make that kind of promise when im still doing rads, i just know that I still feel like 💩 and can't guarantee anything at this moment in time i don't kniw what my recovery is going to like yet!! The fatigue is now more like exhaustion like i could drop my skin after 15 blasts is so sore especially under my arm where tgey did the Axilla its going to get worse i was told today in next 2 weeks but still got boosters so im relieved its only where the tumor was as i don't think my skin could take it
Was upsetting today as there was a little one being treated and he or she was screaming in treatment room i know i got really upset by it and a fee others looked aa if they were too i hekd the tears in till i got out but i just thought how cruel that a child should have to go through that its so bloody unfair 💔
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse have you escaped early? Or are you packing up the burrow ready for escape lovely 😘😘😘💕💕mai hope the rads today are kinder my darling😘😘😘💕💕💕shi xx
Jay68
Member

Re: May 2017 chemo starters

Hi Wolfee - hubby has gone back to work properly today (he was in for 2 days inbetween but shorter days). Our son returns to school and I return to work on Thursday. How about you?

I'm day 14 post rads today and my skin is calming - it's still very red/black and I have about 3/4 small white spots/blisters (not sure what they are?!) - not causing a problem. I've got more medihoney from rads dept which I'm applying 2x a day and I'm E45 applying 3x a day - the skin on my torso under arm area looks and feels like roast pork - so hence moisturing lots to prevent it cracking! How is your skin, as you're that little ahead of me, I'm interested to know what might happen next! Are you still suffering fatigue and are you still drinking as much water? x
WolfEE
Member

Re: May 2017 chemo starters

Good luck today anyone back to work, school runs etc.
How is eveyone treatments going?
AnnieA
Member

Re: May 2017 chemo starters

Hi ladies I just wanted to wiish you all a very happy new year. Thanx you all for the support and encouragement throughout the most testing Time in our lives. I’m starting 5he new year having to male big decisions about my job and what I think the future holds for me but I’m sure whatever conclusion I come to will be the right one. Wishing you all love, health and happiness x

WolfEE
Member

Re: May 2017 chemo starters

Happy New Year ladies.
Also a big thank you to each of you on your support and presence on this forum throughout the year I can honestly say I couldn’t have done this with out you.
May starters 2018 will be a better year xxxx
Jay68
Member

Re: May 2017 chemo starters

I must admit to feeling the same Heather - when it struck 12 and I heard the chimes - I felt so relieved 2017 was gone - hello 2018 - hello to the new ME!!  Happy New Year xx

katie11
Member

Re: May 2017 chemo starters

Heather, I felt exactly the same at midnight too x
Raitchr
Member

Re: May 2017 chemo starters

Wishing everyone a Happy New Year! 

 

I read somewhere recently " the best view comes after the hardest climb". We certainly have done some climbing last year. 

 

Ladies, thank you so much for all your support, understanding and encouragement. I am so pleased that I met you all!

 

When Big Ben struck 12 last night I cried and cried. My youngest son asked what was wrong, I said I was so relieved 2017 was over. He just hugged me and cried too!

 

❤ Heather

Anniej
Community Champion

Re: May 2017 chemo starters

Popped back in to see how you are all doing. Thrilled and inspired by your posts. Almost a year now since I found my Mr. Lumpy, and can't say it's been anything other than bl**dy. But....this years another year, so, here's to life, laughter and the friends who got us through. Fight on, wonder women. 😍🍷🎉😘

MJK
Member

Re: May 2017 chemo starters

Wishing you all a healthier new year. Be gentle to yourself and those around you.
Whatever 2018 throws at us we can handle it. X
Andi71
Member

Re: May 2017 chemo starters

Wishing all of you strong, courageous, wiser women a 2018 filled with moments that bring you happiness and laughter and only positive people to share your time with, and a kick ass attitude to anything that challenges you.  

As a very dear old friend of mine aged 80 said, ‘It’s our time to be selfish, we’ve had our scare, now it’s time to do what you really want to do with the people who you want to be with’. ...... couldn’t agree more! 

So when I say ‘Wishing you a very happy New Year!!!’ I truly mean it 💕 do what makes YOU happy!

 

Im pleased that the majority had a wonderful Christmas.  I thought I’d get a tiny bit of a workout on the Wii with the family playing the sports games 😅 Forgot how knackering that can be! Treehouse you are a real trooper!  With all this circuit walking your doing in hospital, the patients and staff will begin to think your an undercover security guard

🏃‍♀️💪🏼👮🏻‍♂️😉😂 keep it up!!

 

Ive finished at work now.  I’m going to miss so many of the staff, they are genuinely lovely people.  We had a quiet Christmas the 4 of us and the day just flowed so easily and loved every minute of it.  Boxing Day we ventured to our closest friends for lunch and a 3 mile walk!  It was great to be outdoors but the soles of my feet are shot!  Honestly don’t think I can improve them.  7 weeks post chemo the soles of my feet hurt, akin to walking numerous marathons.  So yesterday we popped into town and my mission was to buy the comfiest shoes/trainers on the planet.  Ended up with 2 pairs of Sketchers trainers (memory foam Soles) and Echo for a pair of shoes.  I’m hopeful it’ll make walking easier.  Although woken up this morning and the blighters were sore before even getting out of bed 😩 Will be trying out a pair of the new footwear today to venture to Hobbycraft with eldest daughter for bits ready for her going back to Sixth form tomorrow. 

 

It’s a toughie this whole New Year thing, but I think everyone on here doesn’t quite know what the future holds.  But then you see joe public who is cancer free for now doesn’t know what the future holds.  We just have to try and put our worries into a box, and step forward into our cancer free journey that awaits us.  It’s a time to embrace what we love, try out new things and be fearless in everything we do 😃

 

JAN 9th - my mastectomy operation and recon - bring it on!! 💪🏼

 

🍾🍾🍾 Wishing you all a VERY HAPPY NEW YEAR!!!! 🍾🍾🍾

                                                              xxxxxxxxxxxxxxxxxxxxxx

 

 

 

tatyana
Member

Re: May 2017 chemo starters

Welcome 2018, may you be kinder to us and our families! I was very happy to say goodbye to the Year of the Alien. Thanks so much to all you lovely ladies for your wonderful, precious support. I wish you all a happy and healthy New Year! 🎇🎆🎇🎆🎇
katie11
Member

Re: May 2017 chemo starters

Happy new year beautiful ladies. May this year be happy and healthy xxx
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

2018we are so happy to see you 😘😘😘😘here’s to us, to love, to life to friendships and enjoying every day we are blessed with 💕💕💕shi xx
Jay68
Member

Re: May 2017 chemo starters

To all the lovely ladies - wishing you all a very Happy and Healthy New Year - 2018 - lots of love to all xx

Mai7
Member

Re: May 2017 chemo starters

Happy New Year 2018!!  🎉

Mishy18
Member

Re: May 2017 chemo starters

Oh and thank you all for the support throughout this bloody roller-coaster i couldn't have done it with this forum 💖💖💖💖💖💖
Mishy18
Member

Re: May 2017 chemo starters

Treehouse lovely all the very best wishes to you and your family x
what has 2017 taught all of us ..... That we are strong ladies who have dealt with the blow in the best possible way, with inner strength and dignity which we probably never knew we had 💪💪💪
2018 is about living life to the full and i will embrace everything i do, see and feel like i am doing it for the first time
So ladies the very best wishes to us all and to our incredible families who we couldn't have done this without
Daffodil54
Member

Re: May 2017 chemo starters

I also wish everyone a healthy and happy 2018. Let's put 2017 behind us and look forward to getting back to normal lives again. 

Thank you all for your support on this journey. Love to all. 

Rosie65
Member

Re: May 2017 chemo starters

Agreed Jay, we will all be glad to see the back of this year.

 

Wishing all of you and your families much health, happiness, fun and laughter in 2018. The positives from this year has been getting to know you all. Your support and friendship throughout has been invaluable.

Jay68
Member

Re: May 2017 chemo starters

It certainly feels good that this is the final day of this difficult year...........

misyangel
Member

Re: May 2017 chemo starters

Happy new year to all you beautiful ladies.  Feeling tad emotional myself today and I think it's reflecting on what we have all be through this last year.  I am going to the local pub with my inlaws as my father in law is terminal we don't know how long he has so we are making an effort to go out and make some memories 🍾🌈❤️ Enjoy all whatever you are up to xx

treehouse
Member

Re: May 2017 chemo starters

That’s lovely Mishy. Cherish those precious moments.
My loving family have dragged me through this hellish year and I love them all so much. I know this has been hard particularly on my parents and husband. Can’t let myself think about that too much .
My emotional state varies from strong to numb to leaking.
I will wish you all a happy new year like I have never wished for anything before.and then get back in my hidey hole.
X x x x x x x x x x x x x x x x x. X x x. X
Mishy18
Member

Re: May 2017 chemo starters

Love it Mai!!! I too am giving 2017 a big 🖕 with a cheeky thank you for my granddaughter in there!!!
She giggled for thr first time this morning daughter videoed it and sent me it, absolutely made my heart melt every time I feel crappie about everything thata happened i will look at that 💖💖💖💖💖💖
Feeling emotional and reflective about everything today but in a positive way its nearly over and i am going to to embrace life x
Mai7
Member

Re: May 2017 chemo starters

We're going to be lighting this tonight as an "up yours 2017" extravaganza: 42 shots at the alien that is cancer! May even be accompanied by an epic classical symphony!  There will be just me and OH and my Son.  Music now selected: 

https://youtu.be/xktTwsiVb_w

image.jpeg

Mishy18
Member

Re: May 2017 chemo starters

Sorry for the typos in my posts ladies i really should check them before i send them 😂
Rosie65
Member

Re: May 2017 chemo starters

Shi I would be quite happy to help in any way if I can re preventative testing for gene mutations. Also they only offer annual testing until you’re 50 even for high risk. In fact they stopped my annual mammos at 48 and moved me to 3 yearly so I got a letter to go for mammogram at 51, 2 weeks after my bc diagnosis. I’ve mentioned how wrong that is loads of times but BCN and consultants just shrug their shoulders.

 

The reasons why my sister didn’t want to be tested are complex, some I understand, some I don’t. She was 29 and afterwards never really spoke about it and at the time cancer wasn’t really discussed like it is now. We are really close and she has obviously felt really guilty since my diagnosis. There’s been a lot of tears and soul searching!

 

 Mishy think you’re right it’s a combination of the end of treatment and end of the year that can make you very emotional. 

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Mishy don’t let your nhs fob you off, I was 45 at diagnosis and they didn’t find out tn till after op by which time I was 46, my trust sent me for brca test within a month. Please push for it, it’s utter bollocks that it can differ from trust to trust, take it to your local mp or get the national press involved, your local trust won’t like that all over the country, so if they refuse you tell them there and then, they have left you no alternative than to go to the national press with it, not the local press, the national press so they know you mean business. I’ve found if I’ve threaten to go to the national press with something regarding any problems with companies or anything like that, they usually give you what you want do they don’t get bad press. Just thought I’d give you tip that might help you get the test. 😘😘💕💕shi xx
Mishy18
Member

Re: May 2017 chemo starters

Sorry for typos i meant Shi x
Mishy18
Member

Re: May 2017 chemo starters

Dhi im with you in that i know im the first to have bc but i was 45 at time of dx and TN have been refused tge test outright i think if i could help my daughter and granddaughter or my son in tge future by arming them with information to make their own choices i would i have spoken to so many people who are TN and had the test had i been a year younger i would have had it!!!
Mishy18
Member

Re: May 2017 chemo starters

Thanks Annie as mai said lovely to hear from you im going to give them a call in new year about the courses to get on as i really need to get bc out if my head i honestly think I'm becoming a bit neurotic atm i was just thinking today this has brrn going on since March if i count finding lumpy but active treatment starred may 5th a week after diagnosis had my first procedure then surgery on 18th its a long tine to think of nothing else and of course my dear dear dad was diagnosed end Aug and we lost him 1st week in September its as if the disease has consumed my mind 😲 can't believe ive just admitted that!! So fir me anything i can do yo move forward and adjust to my kifr after this abd bloody well enjoy it instead of constantly worrying about it
Phew needed to grt that out i tbink im quite emotional atm think everything is coming to an end the year which changed my life and the treatment
I am however eternally grateful for iur wonderful NHS and tge unsung heros who have looked after me and my family throughout this x
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Blue ash a cc has just posted about a rads cream on sept thread, just to let you know 😘😘😘💕💕shi xx
Mai7
Member

Re: May 2017 chemo starters

Shi, no worries, I thought you were talking about all BC not just genetic markers.  Xx

Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Hi mai, sorry again the brca blood test can pick up brca gene in the blood, that’s how they tested me. For tn, there are other markers too, but they do not test for them. A couple of the ladies who are tn are being tested for a couple of the others too by their trusts, but it’s not happening in every trust as far as the tn tests go. I know it’s a minefield and wish there was a magic wand that could pick every cell mutation up for bc and all cancers so more targeted specific treatment for every case could happen, no harm in wishing for breakthroughs and miracles 😘😘💕💕shi xx
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Treehouse glad your sister tested neg. I personally can’t see how they could discriminate if you have a brca test, what would be the difference between that and the cervical screening? Surely both are classed as preventative, unless they wanted to go down the route of penalising us for being women in which case by law they would not have a leg to stand on it would be a clear case of discrimination. Like I say it’s just o e of many things a few of us wNt to try and work on do at least if there are any changes we can help to get in place then our journeys won’t have been for nothing if it helps future generations to get better options and more earlier screening. We have a lot of strong fighters on these threads who want changes and if we get our heads together who knows we might be able to achieve something. Right orange box put away now for today, going back to my usually place of 🤪🤪🤪on top of the Oct 🚂love you all 💕💕shi xx
Mai7
Member

Re: May 2017 chemo starters

Shi, breast cancer doesn't leave any markers in the blood, hence why there is no blood test like some other cancers. I've read the most promising so far is using saliva as this does have markers for active BC.  However, it probably has to be developed into a cost effective and reliable process first before the NHS can consder it.   The breastcancernow.org site is brill for the latests thought tanks around BC.  xx

Rosie, I'd be pretty annoyed at my sister if I were you but it's healthy to let these thing go as getting bitter doesn't help you. Who know why humans do what they do!   Xx

Anniej, lovely to hear from you and glad you are staying positive. What treatment are you on for secondaries? Sending hugs. Xx

treehouse
Member

Re: May 2017 chemo starters

I completely agree Shi. I tested positive and that gave my sister the chance to get tested ( she is negative thank goodness)
But I can see people being reluctant to take tests as it can affect insurance. Although that is not always the case at the moment, rules change very quickly.
Ridiculous that health and finance should ever be issues in the same conversation.
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Sorry treehouse I didn’t post very well on that last one, the hope is to get a standard blood test in place for everyone like they do the cervical screening, it would be a start and then people have the option don’t they like they do for the cervical screening, if we could try and make the difference for everyone then at least they might be lucky enough to have more options of preventative. Hope that makes more sense, it’s about trying to help future generations as much as possible if we can 😘😘😘💕💕shi xx
Jay68
Member

Re: May 2017 chemo starters

As we're all nearing the end of our cancer treatment roads, pathways and journeys we need to focus on our tomorrows and put our past, especially the last year behind us - don't lock it away, it's good to remember the highlights - the lovely nurses and medical staff that we've all encountered, the friends and family who have been amazing - and, of course, the great friends we've become on this forum - I think we've all found great comfort from each other and I know I'm extremely grateful for this.  Thanks ladies x

 

No one - just no one knows what is around the next corner - you just have to embrace each day with positive thoughts, a positive mind and move forward with small, slipper steps and I'm quite sure that we will all get used to our new "normal" very soon!

 

Wishing you all the best for the final two days of this "crazy" year!  xxx

Jay68
Member

Re: May 2017 chemo starters

Bed hair is fun isn't it Treehouse!  I'm experiencing the same, however, novelty wears off when I try to do something about it - mine really does have a new mind of it's own!!  Enjoy your time at home today x

treehouse
Member

Re: May 2017 chemo starters

Rosie that is a tough one. Other people’s choices affect your options and that is not fair. Not sure why your relatives refuse testing if they already had the cancer but to be honest the system should not need it. It is not just TN that worry about brca it can be any type of bc.
Shi
Community Champion
Community Champion

Re: May 2017 chemo starters

Oh Rosie, I am sorry to hear that they wouldn’t test you. There are a few of us who are tn and have had to have the brca gene test that want to try and get some changes put in place going forward for future generations, so they do have option of preventative surgery. It’s something we are going to get our heads together on when we are through this and try and highlight and get put as a standard practice if we can because surely preventative treatment will be cheaper for nhs in the long term, like they have for cervical testing. Anyway just a thought if you wanted to throw some weight behind it too? 😘😘💕💕shi xx
Rosie65
Member

Re: May 2017 chemo starters

Heather - I was convinced my family had BRCA gene years ago and had genetic counselling in 1998 and again in 2011. They said I needed a family member who had bc to have the blood test and I asked my sister but she refused both times. The more I mentioned it the more she dug her heels in and wouldn’t talk about it.

 

In 2011 after another close relative died from ovarian cancer I asked if I could have double mx and recon and ovaries removed as preventative measure. They agreed to oopherectomy as screening for ovarian is unreliable but said they wouldn’t remove healthy breasts unless I could prove I had the gene so had annual mammograms instead.

 

I’ve now had the op I wanted all along but had to get bc first! I’m pleased my other sister and niece who have now tested positive have the chance to have preventative surgery but feel a bit cheated that I wasn’t able to do so

 

I really need to put it all behind me now so hoping that in 2018 I can start to move forward!