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Just diagnosed and wanting to talk to people who understand

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Re: Just diagnosed and wanting to talk to people who understand

Well done Barry, great run and am impressive amount raised!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Jo, Tina and Claire. My back and knee is aching from walking around today lol x
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Re: Just diagnosed and wanting to talk to people who understand

Well done. That's fantastic xx

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Re: Just diagnosed and wanting to talk to people who understand

👏🏼👏🏼👏🏼👏🏼👏🏼🍾 Fantastic! Well done Bazza! Xx 

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Re: Just diagnosed and wanting to talk to people who understand

Brilliant Barry well done!! My hubby runs 10k regularly and 48 mins is his best time 😊

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Re: Just diagnosed and wanting to talk to people who understand

Haha thanks Charys, well I was about 60th out of 300 for my age range and 221 out of all men, so did alright. Also I've raised £750! x
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Re: Just diagnosed and wanting to talk to people who understand

Not that I know about times Bazza.....but I'm sure that's a good one......as it would take me 5 hours walking it.

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Jill! x
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Re: Just diagnosed and wanting to talk to people who understand

Well done Barry!!!
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Ruth. If I can, I'll post a pic of x
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Re: Just diagnosed and wanting to talk to people who understand

That sounds impressive Barry. Well done. xx

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Re: Just diagnosed and wanting to talk to people who understand

Hey for those interested. I ran 48.22 for the 10k this morning in Brighton.
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Chary's on our way to Brighton now. 10k isn't too bad. I'd rather not do a marathon though! x
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Ruth! Ooh, good on her x
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Re: Just diagnosed and wanting to talk to people who understand

Full of admiration for anyone who can run at all, let alone a 10k run! Wishing you a satisfying and successful experience Bazza.....go go go !!!

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Re: Just diagnosed and wanting to talk to people who understand

Hey Barry, good luck for tomorrow. I khow Ele J is doing it too so Chemo Team October 2015 is well represented.

xx

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Jill!
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Re: Just diagnosed and wanting to talk to people who understand

Good luck Barry !!!
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Re: Just diagnosed and wanting to talk to people who understand

Hi Jackie, Nikki works with me in London and she was also advised to avoid commuting to avoid the germs and possible infections (your immune system is weaker during chemotherapy).

 

Good luck with your biopsy next week x

 

I hope everyone is doing well. Off to Brighton tomorrow for the run on Sunday. I once again want to say a massive thank you to not only everyone who has donated (I've raised a lot more than I imagined), but everyone who was their for us throughout Nikki's diagnosis and treatment. P.S you can follow me with the BM10K app on Sunday morning (if you're bored)
https://play.google.com/store/apps/details?id=com.active.endurance.bm10k&hl=en_GB

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Re: Just diagnosed and wanting to talk to people who understand

Hi

 

Thanks for the suggestion of the cold capping Bazza.  My care nurse did say about this at my appointment on Monday. I may well try it.

 

We have decided to start with the 4-6 months of chemo therapy, and then do the operation after that.  This is because due to my family history, I have decided to have a double mastectomy.  But this needs to be approved and will take a few weeks to do so, so rather than wait, we will crack on with the chemo whilst the operation decision is being made.

 

I found out that I have grade III cancer, so I wonder if that will mean I will have a combined chemo to combat the more aggressive nature of the grade III's.  I am waiting for an appointment with the oncologist, so hopefully that will be within the next week or so.  Then I should get my chemo start date and know exactly what they are going to give to me. 

 

I just want to get cracking now, even though reading these blogs it seems that chemo may well be a rough ride.  Is that the case more with the combined drugs than with the single application?  Any thoughts from anyone?  My nurse says I can't go into the office due to my vulnerability to infection...I can work from home, but I feel strange about doing that for up to 6 months!  Although my cats will be pleased to have me!

 

I am having a small op next week to remove a sample of the abnormal lymph nodes, to see if they are cancerous.  If it has spread there, I will need radiotherapy after the op and chemo are finished.  I guess raditotherapy is not as bad as chemo?

 

I think I am feeling pretty strong at the moment, which is good.  But I guess this is just the very beginning of a potentially fairly long road...

 

Hugs to all and thanks for being here.

 

Jx

 

 

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Re: Just diagnosed and wanting to talk to people who understand

That sounds rotten Amanda. I found the emotional side of the T difficult at certain times, especially as I thought I'd been doing so well up to that point. BUT, only one more to go for you now. End is in sight. 

 

Ruth xx

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Re: Just diagnosed and wanting to talk to people who understand

Good luck with your chemo tomorrow Claire.Fingers crossed it treats you kindly .
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Re: Just diagnosed and wanting to talk to people who understand

Sorry you've had a rough one Amanda. Thank goodness you are feeling better now. I've got T two tomorrow. Not looking forward to it, but thank god only once more after that.
Big hugs
Claire xxx
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Re: Just diagnosed and wanting to talk to people who understand

Sounds miserable Amanda.Next one ,last one,finishing line is getting nearer .
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Re: Just diagnosed and wanting to talk to people who understand

Hi everyone, been out of the loop for a week.... T2 hit me like a ton of bricks on day 4.... basically all the SE's you get listed came along and camped out for nearly a week! Day 11 now on feeling more normal at last!

I have been reading but felt too out of it and emotional to post. Couldn't seem to concentrate on anything or pull myself out of the abyss, let alone be positive about anything! I was really down and crying all over the place on Friday, everything just got to me, but I've improved over the weekend with the SE's settling down at last.

 

Next bloods 19th and then... fingers crossed, last T on the 21st! 

Love and hugs to everyone,

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

Bugger,bet you were pretty p****d off after that trip to chemist !!!I am ok ,could live without having to take Tamoxifen and all the joys it brings ,but would still chose it over having to do this again!!
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Re: Just diagnosed and wanting to talk to people who understand

👍🏼👑😂 Yay! Thanks Jill...... Hoping every day that passes I'll feel better!

Still feeling pretty **bleep**e at mo. My lower back feels as if I'm having electric shocks! Breathless, eating for Britain! No taste. And my NOSE!!!!! Argh!! Had to ring dr for advice. Feels like I've been punched in nose, got breath through mouth it's that sore! Raw inside, though runny, hurts to wipe and if I blow!!?!! 😖 It bleeds. Afraid of infection as this is the high risk point?! He sent a prescription to boots tea time for me, said if no better after using this aft and tonight to ring and get emergency appointment tomorrow. Drove over there at 5:30, waited for it, to be told, 'sorry, we've just given the last supply to another customer, it won't be in till Saturday/Monday!? Other chemists closed now. So, I came away with nothing, having to suffer this pain in my nose till I see someone tomorrow 😖 Meaning my throat will continue to feel crap too.

 

Ah well..... Day 8 tomorrow 👍🏼 How are you doing Jill? 👑 Xxx

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Re: Just diagnosed and wanting to talk to people who understand

Chemo done Princess Tina,well done!!!!.Don't worry about radiotherapy, it will be a walk in the park compared to chemo .Hope you feel better soon.
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Re: Just diagnosed and wanting to talk to people who understand

Thanks Peggy, I shall stay in touch as my journey of recovery will start some time this month (I hope). Thankfully I do not have to commute. I just have to get into the car and visit possible new clients, lol. It will certainly be interesting
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Re: Just diagnosed and wanting to talk to people who understand

Glad it's helpful Sue. I probably should have said that I worked part-time through chemo, albeit mostly from home (I am very productive working in PJs Smiley Happy). I was on FEC-T regime with a treatment once every 21 days. I tended to work about 10 of those. Commuting every day would have been tough but home work with some visits to the office for crucial meetings worked okay. While I won't pretend that I didn't have a few days where I stayed in bed and had a bit of a weep, I was fortunate that I did not suffer hugely with SEs.The phrase a lot of people use is that chemo is "doable" and I certainly found that was the case.

 

I hope you can work something out and are treated fairly. Keep in touch. 

 

Ruth xx

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Re: Just diagnosed and wanting to talk to people who understand

Hi Ruth, Thank you so much for your response - it is really appreciated and helpful. And thank you for the links. My Macmillan BC nurse is wonderful and I know, she will advise on help. I pray it does not come to it, as, having experienced what I did previously, I might struggle for years before getting another job - a prospect to horrible to consider. The 10 months I was without work and facing discrimination regularly really destroyed my confidence. I am now rebuilding it - and of course - just like me - with an added challenge, lol. I never do things easy or by half 🙂 Having gone from 2-3 cm to 11 was a huge shock. I just pray that the nodes are clear, as they provisionally are. Not sure with how many more blows I can cope with, no matter how tough and pragmatic I usually am. Thank you for being there for me.
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Re: Just diagnosed and wanting to talk to people who understand

Sue, I'm also someone with lobular which which turned out to be bigger after surgery - I went from 2cm to 4cm with a couple of tiny satelite tumours into the bargain which necessitated "upgrading" from lumpectomy to mastectomy with immediate reconstruction. I completely understand the whirlwind of emotions you go through when such a big change happens. I finished chemo eight weeks ago and while still tired and a bit achy at times am coming through the other side.

 

I second Tina's suggestions about contacting Macmillan as they can give you financial and legal advice with regards to your work position. Hopefully you won't encounter a difficult situation but it might put your mind at rest to be forearmed. Another organization that I've found helpful is The Haven: http://www.thehaven.org.uk/. They have several locations in the UK but if you don't live near to one they can give advice over the phone. They have at least one specialist legal/financial/benefits expert there who I met when I was on a course at the London branch in January. 

 

Disgraceful that you have had to suffer such age discrimination and that someone with your skills and experience has had to struggle to be valued in the workplace!

 

Sorry you have had to join us but this is a good place for support, advice and just to come and have a rant when you need it. The people here have saved my sanity on several occasions over the last nine months.

 

Much strength to you.

 

Ruth

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Re: Just diagnosed and wanting to talk to people who understand

Hi Lizzy, thank you, really appreciated. So great to get so much support, albeit virtual, it helps a lot. In the end we all individually have to manage our challenges and feelings, no one can do it for us. The support in the various forums (as I work my way through them on my journey to recovery) is invaluable. I wish I could do more to support individuals, but unfortunately events, etc. tend to fall into my working time. It has always helped me tremendously to focus on others, rather than myself, when going through tough times, as it tends to put my challenges into perspective.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Sue H-S, 

 

Thank you for asking about alternative ways to message on the forum. It is good to see the support you are getting on this thread.

 

You can private message another user on the forum. You can do this by clicking on the envelope in the right hand side of the screen and typing in the name of the user you would like to message. I have included a screen shot of this below.

 

private message icon.png

 

I hope this helps, just email moderator@breastcancercare.org.uk if you have any other questions.

 

Best wishes, 

 

Lizzy 

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Re: Just diagnosed and wanting to talk to people who understand

Hi again, phew you have been through the mill! The end is in sight though and you have dealt with it so well. Unfortunately do not have a circle of friends close by as I only moved here 2 years ago and support meetings 30 mins drive and usually in working hours...life, lol. You have a wonderful and challenging job! My best wishes that all goes well for your return to work. People tend to think I am 45, but I am 57. So with Letrazole and eventual treatment will likely catch up with my biological age, yuck! Sending you positive thoughts!
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Re: Just diagnosed and wanting to talk to people who understand

Hi Sue....byes you can click add friend and send private messages ... See top right of page.

 

No, sadly, I'm not a teacher, but an Eduacation support for learning auxiliary. Working in secondary school, supporting students mainstream and in a base. Additional needs from Autism, Down's, ADHD, Dislexia etc I need to break my sickness cycle by end May or I'll be on nil pay as of June. Money not great at best!?.... Ive been in this post two years so entitlement runs out soon. I just turned 50..... The day after my last **bleep**ty Chemo cycle! Feel more like 70! Celebrations weren't planned as we didn't know how I'd be? So I'm celebrating again with hubby in July! I'm very lucky, (though on my own a lot due to hubby working away and home every couple weeks. My daughter is in uni, though only hour half away and see son not far I need him)

I have plenty of friends offering support and company, but I've not accepted much from them as I look and feel crap most of the time! 😏 On my good weeks intry meet up for coffee with them or girls from Macmillan. My immediate family live in South Wales, I'm in the north of Scotland! Mum can't travel but I hope to visit her in the summer hols.  

It's such a bloody worry! I feel for you Hun. Please search this site for support and help. You can get advice from here or Macmillan. Look for local support groups? I attended a living with cancer 

Course at my local Macmillan centre where I met some lovely supportive people. 

Stay strong Hun, support on here is great. Keep in touch. Xx Tina 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Tina, thanks for your support. Yes similar to you, but not quite. I started with ultrasound 2cm, then MRI 3cm, nodes clear, so had mastectomy with reconstruction and sentinal node biopsy - as I have small boobs. Dealt with all brilliantly as likelyhood of only Letrozole and nothing else. Yesterday 2nd appointment post op. Got given the basics of my results - provisionally, as actual report was not there yet. Now 11cm, nodes provisionally clear. I am now in shock, as the impending treatment plan is far more challenging. I guess you are a teacher and understand why you had to, but were also able to stay off work. I am a Business Development Manager doing the marketing and sales for a very small IT support company and only started my job after nearly a year of unemployment in February, so still in my probation period. They are supportive, but I cannot afford to be off much as it will affect my ability to 'pay' for myself not bringing in sales. So have a lot of pressure to perform well. It was horrid to come across age discrimination for the first time in my life, when finding a new job. My skill set and experience just did not count, when they finally figured out in which age group I was. As I am on my own, with my only family ( mum, 82, in Germany) I have to work to support myself. At a guess I am really scared that the likely side effects could eventually lose me my job, more than the actual treatment. The thought of facing very long term unemployment again and having to leave my rented place to purely rely on the state is simply horrendous, especially as I, as a single person, cannot even get social housing. So many unknowns - very scary - hence my current bad wobble. I am usually a strong and very pragmatic person. So this is completely new territory for me. Until I see my oncologist for the first time on the 19th, I won't know whether the strategy I have in my mind to minimise time off work is doable. And of course have no idea which of the likely side effects I have to deal with and how they will impact on my ability to do my job well. I am generally a very positive person and there is not much, which floors me - this has. As it goes to the root of me being able to support myself. That worry is worse than anything else. I just have to take myself by the scruff of my neck, shake myself down and BELIEVE that I can successfully work through treatment. Btw - thank you re messaging -is there another way to communicate than on the forum? I am sorry to hear you are struggling with your treatment and admire your resilience - an inspiration. Mind you, some of the bits you mention I have no clue of what they are......yet. You have been strong and can see the finishing line. So pleased for you. I can imagine you look forward to getting back to your job. Teaching is wonderful - I once taught in Adult Ed - although totally different to teaching young people - still very rewarding. Thank you for you support - it is so helpful.
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Re: Just diagnosed and wanting to talk to people who understand

Hi Sue, the waiting game is CRAP! Take it then you had similar? Removal of Timor, **bleep**e path results? I had my lymph node biopsy same time as lateral mammoplasty and results 3 wk later?.... Then as no clear margin gained and found in 1/11 they decided to do clearence whilst back in getting margin before chemo.... If margin was clear I would've had chemo then clearence. Good luck with results Hun xxx Feel,free to message me if you want. 

 

I miss work, normal life big time! I was advised to not work during chemo or rads. But hoping to get few days phased back before rads start! Then phased again after around first wk June? We break up for summer hols end June here in Scotland so I'll have 6 wk off before hopefully back fully in August? Though my onc nurse says phased back again after hols. To remind people what I've been/ going through. Says people forget, think as treatment done you're ok now!?.....

 

Haven't been on post for while. Update. Had final 6/6 chemo cycle (3xFEC 3xT) Friday 1st 👍🏼  Going through the SE dip, day 7 today, feeling crap..... Trying to stay positive, knowing I'm going through these for last time! Awful sleep last night...  Pains like electric shocks in lower back keeping me uncomfortable! 😖 Another day eh? Hope everyone else doing ok? Radiotherapy consultant apt 19th, nervous of the next step..... Should start  the sessions by second week May. 

 

Hugs xxx Tina 

 

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Re: Just diagnosed and wanting to talk to people who understand

Hi Tandy, just read your post. Weidly glad that I am not the only one where the lobular blimp turned out to be much larger than ultrasoundcand MRI indicated. Provisionally nodes are clear but confirmed results in two weeks. Then the fight begins. Wish I did not have to work
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Re: Just diagnosed and wanting to talk to people who understand

With regards to hair, their is a thing called cold cold capping that you may want to look in to. It doesn't guarantee you keeping your hair, but you may retain some. A lot of women try it and see how it goes.

xx

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Re: Just diagnosed and wanting to talk to people who understand

Thank you Bazza for yet another prompt and helpful reply.

 

They did say I would definitely have chemo and it would last 6 months, but just no further detail, however I will get this next week as you say.

 

I really want to start treatment ASAP and just get this thing gone!

 

I think I will get my hair cut short too....better than it all coming out when it is so long.

 

Thanks again

Jxx

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Re: Just diagnosed and wanting to talk to people who understand

Hi Jackie, at your meeting next week they should give you more details on your treatment plan. I won't speculate what treatment they will give you. Just that yes the most common chemotherapy treatment is 6 treatments every 3 weeks. Chemo side affects are different from person to person, and you should wait until you have your op and they tell you what treatment before worrying about chemo.

 

AnnaBandana's is a popular site to buy them from. My wife Nikki had her cut short, it can be a traumatic experience for some.

 

That's a natural reaction, and you will feel better mentally when the treatment begins. 

 

This site is great for questions and support. But the helpline should be able to give you advice too.

 

xx

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Re: Just diagnosed and wanting to talk to people who understand

I'm glad chemo hasn't been "too bad" for you Amanda. I bet you can't wait for the picc line to come out, Nikki hated that and was a good milestone when that was removed.

 

Nikki found rads really tiring, lots of travelling back and forth for work and of course she wasn't use to walking much. She had extra rad treatment, and probably because of that her skin split and has had nasty wounds that are taking there time to heal (the wounds are healing now thankfully).

 

Sunday week is my Brighton run, should be a good day! xx

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Re: Just diagnosed and wanting to talk to people who understand

Thanks Amanda

 

I had my MRI results yesterday and they showed just one lump in my breast, but unfortunately it also showed a mass in my lymph glands....  I had to have further biopsies and then go back next Monday for the final results and to set a treatment plan.

 

What is chemo like?  Is it a 3 week cycle?  I thought I read that days 1-10 were bad, and days 11 - 20 were better?  Is that right, or does it vary for everyone?

 

I have bought some really pretty headscarves and bandanas - found a great site called AnnaBandana.  They were really reasonably priced.  Would anyone recommend getting my hair cut short before i start the chemo?  I have pretty long hair, which has taken me years to grow....

 

I feel scared that it is in my immune system already....is anyone else feeling like that?  Is this the sort of thing I could ring the helpline about, or is it more for specific questions?

 

Thanks all

Jx

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Re: Just diagnosed and wanting to talk to people who understand

Hi Barry,

 

Chemo has been pretty kind to me, I have only been sick once so far and that was after the first T. I have definitely found T a harder than FEC but still come out of the worst after about 10 days or so and have a good last week. 

 

Lat one is due 21st April, assuming last delays...will be ecstatic to finish and get the picc line out too. Then four weeks off until rads. How has Nikki coped with the rads, hope working as well didn't prove too much for her!

 

Amanda x

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Re: Just diagnosed and wanting to talk to people who understand

How's chemo been Amanda? Last one in April 🙂 x

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Re: Just diagnosed and wanting to talk to people who understand

Well done Jen, must be such a relief to be do Everything! As for the MX and ANC, I had that after a WLE and sentinel node biopsy and despite having two ops on two months, I think it was easier than chemo. It's much more 'topical' and your in, done and out after a night or two and then although it can be locally uncomfortable it's just a sort of one hit and then (hopefully) a steady recovery. Keep us informed how it all goes!

 

Only one more Tina, you've done really well to have no delays! I have lost two weeks with delays, but assuming to tomorrow's T 2 goes ahead as planned, and I don't get delayed I should finish on the 20th April but I'm not holding my breath!

 

Welcome Jackie, even though you would prefer not to be here, you have already found out how much information and support there is here, Barry was super helpful with advice about fertility treatments options. I should write down a list of questions for Monday and if possible take someone with you as an extra set of ears.

 

Love and hugs to everyone,

 

Amanda x

 

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Re: Just diagnosed and wanting to talk to people who understand

Brilliant Jen! What a milestone 😊 Onwards and upwards now! Xx 

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Re: Just diagnosed and wanting to talk to people who understand

Jen, fantastic for getting to the end. What a relief! Enjoy the break without hospital appointments and make the most of feeling well!

tina you are neatly there! Well done! I can't wait till I don't have to walk in to the hospital knowing I have to go through the it all again. Less than five weeks for me now! 

Jackie you will get so much support here. The early days are the darkest. It does get easier and I have gone through my treatment with so much advice and support from others here.

lve to all

claire xxx

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Re: Just diagnosed and wanting to talk to people who understand

You are welcome Jackie,it is like learning a different language in the beginning !This forum is very supportive and always someone who can offer advice .Jill.