April 2019 Chemo Starters 💖

[Oots]

Hi all

it has been a while and I’ve had a whole set of scans (should be called a grand slam really) because I developed some strange pains on my rib cage. My oncologist referred me for a CT, a PET scan and an MRI. Fortunately, none showed any cancer activity but they also did not offer any explanation for the pains. Then I had a bit of an inspiration and started thinking about allergies. 
In the last year I have definitely developed an allergy against conifers. I get a really nasty rash if I brush against a branch. Before I only had a euphorbia allergy so this is new. That made me think of foods and excipients in tablets. For no good reason I decided to start somewhere with eliminating food group and picked gluten. 
It is now a week but I am feeling so much better. My pains are almost 100% gone, I didn’t know it had anything to do with it but my gassy tummy is much better. My skin is improving. I sleep better - probably because I am not in so much pain anymore and I feel a weight is lifted from my shoulders. Have not told the oncologist yet. I want to keep going for another week and eat some gluten to see if all the symptoms I describe come back.
I do have a touch of arthritis in my right knee and that still bothers me a little but I feel less pain. and the neuropathy in the feet is much less painful now. As if the ‘damaged areas’ in my body are aggravated by the gluten. The pain on the rib cage is completely gone. I strongly suspect I am not a coeliac because I would be very poorly eating gluten but that needs to be checked out. There is a non-coeliac gluten sensitivity that I could have. I think it needs checking. 
I am just wondering because I read so much about pains after chemotherapy and radiotherapy. Would there be a chance that it has to to with food intolerances that we acquire during treatment? I Have no real evidence for this but I just thought I put that thought out there because it might help others. Will keep you posted.  

look after yourselves

Oots 

[Debi2]

Hi NikNak

It is a roller coaster of emotions, you are not alone.  I have had really down days, anxious days, every pain in the book days.  I make sure i get myself up every morning do a little bit of steady exercise, get out in the garden as much as i can and smile on the good days.  Its ok to rest, not feel too good but if it becomes everyday i would contact your BC team and maybe they could refer you to someone.  I have been referred to a support worker who helps me talk about how i feel and the worries i have - it helps.  

The current situation doesn't help either, but we have come through so much we can get through this also.  

I will keep checking back on here if you want to vent anything or just talk, i think how you are feeling is totally normal and as i said above 'you are not alone'.

Take care of yourself 

Debi 💖

[NikNak5]

Hi ya ladies

i just wondered if anyone is struggling emotionally. I’m feel really low, I don’t feel the same person as I was before the cancer diagnosis/treatment - do any of you feel like this? I get tired more quickly, my joints ache. I’ve been chucked into the menopause and I feel about 90 & I’m only 47.. Is it normal to feel this way?

nikNak 

[Debi2]

Hi

Saw my consultant who sent me for ultrasound and then i had my seroma drained again.  I asked the lady that did the ultrasound if thats all she saw and she said yes just the fluid build up with the seroma.  I am a little more relaxed now but still fret about checking myself.

Works going well, but my memory is taking some time to retain things i have been shown how to do,  hopefully it will get better with time - surely it can't still be 'chemo' brain?

Best wishes to everyone and stay safe from the current virus.

Regards 

Debi x

[Runningsue42]

Susan that is fabulous!!  I can imagine it is a huge relief!!

Debi if you are worried make an appointment to see your GP and ask her to examine you, if only to put your mind at rest.  

Sue xxx

[Susanmanchester]

Hi just had first mammogram results so no appointments for another year . Can not describe the relief it is marvellous . The fear is hard to live with but hope will get better with time . Hang on in there ladies x 

[Debi2]

Hi Sue

I was told that i would have yearly mammograms for 5 years, they said it would start 1 year after my surgery which won't be until Sept.

Debi x

[Runningsue42]

Hi debi

Yes i feel scared about checking.  I know i should but the fear factor is always there.  Did your consultant tell you that u will have yearly mammograms for the next 5 years? I have mine next week and im very nervous.  

This week was the first anniversary of my diagnosis.  It was very strange thinking back to the moment i was told i have breast cancer, though i did have a glass of wine to say well done to me for getting through this past year!!

I hope all ladies are keeping well? It certainly is very quiet on this page now.

Take care ladies

Sue xxx

[Debi2]

Hi Everyone

Just a quick question again - is anyone scared to check for lumps?  I have found myself putting it off until 'tomorrow'.  I think i am frightened that i might find something.  I know we should be vigilant but i don't think i could cope with finding a lump and going through it all again.

Debi X

[Runningsue42]

Hi Debi

So pleased to hear you are back at work.  Just take it slowly. Im sure your colleagues will be as nice as mine were in making me endless cups of tea!!  They even decorated my desk with balloons which of course made me cry!!

Ive not had any problems with my nails.  May be worth getting a nice cream and massaging into your nails??

My hair has also come back very thick now, and lots of grey!!  Havent got around to dyeing it yet.  It seems so long ago now since i was bald!!

Yes i second your comments about all the ladies on this forum. Each and every one of you were so supportive of us all during what i can only describe as a **bleep** year.  It was the first anniversary on friday of my mums passing (she died of breast cancer), it was her diagnosis that made me contact my GP and request a mammogram.  And im bloody glad i made that phone call!!!

I know we have all finished our treatment now but it would be lovely to still hear from you all, i appreciate our lives have all returned to the way they were before our diagnosis.  It would be nice to keep in touch is basically what im saying.

Take care ladies

Sue xxxxx

[Debi2]

Hi Everyone

I am now back at work - first week, i am on phased return so just a few mornings a week for now.  I can tell you i have felt very tired over this weekend, hope this improves as i get more used to the commute again.  

Has anyones nails got worse since stopping treatment?  Mine were lovely when i was on chemo and radiotherapy but now they are ridged, quite brittle and flaky.  

My hair is growing back but i still wear my wig, not sure i can do the short hair.  How is everyone else's hair getting on? Oots i wish i was as confident as you to go with the grey but i am struggling.  Maybe in time who knows.

All the best to everyone, we've certainly come a long way since our first posts, but girls we have smashed it!!  Thank you for the support and help on this forum.  I will keep popping back to chat and hopefully catch up with you all. 

Take care and love life 💖 

Debi

[Oots]

Hi all. 

I have not looked at the site for a while because I was so busy  but isn’t it amazing how many of us are worrying about the same thing. I decided to stick with my grey hair. At nearly 56 I’m ok with that and I don’t have lengthy colouring sessions to sit through anymore. Yay!

re Tamoxifen, I’m on it since July. I am not 100% sure how it affects my weight because I joined SlimmingWorld and I started exercising 3-4 times a week. I am loosing weight but only slowly. Ca. 1 pound per week (not counting the Xmas period where I put on 3 pounds 🙀). I suppose I am a little surprised that despite the exercise which is a new thing for me, progress is slow. But I am putting on muscle. My legs and arms are a lot stronger. Difficult to know. But the sweats getting a bit more infrequent. What a relief. 

Oots

[lizandsarah]

Morning ladies

It feels as though I'm back on the appointment treadmill again. 

Have been xrayed as having constant hip pain on one side, then physio (No muscular cause), back to BCN (mine has left unfortunately, and they forgot to tell me an xray had been ordered, until I rang to chase 10 days later), now having urgent skeletal scan next week.

Living in hope it's just the anastrazole and Zometa, but I've never really been the lucky one in life!

Can't help worrying, especially as I was never scanned despite having lymph involvement, but feel flat more than anything.

Awaitng lymphoedema assessment next week as well.

Just counting down the weeks until I get back to full sickness entitlements! Worked out it all goes back to normal mid September!!!

Just waiting for a date for ovary removal next month will be delighted to have no more zolodex jabs!

Liz

[Runningsue42]

Hi Liz

Yes i have checked the leaflet and there is no mention of weight gain. 

I feel so uncomfortable. I was very active before my diagnosis and im starting to build my strength back up, im running a bit more each week but struggling to lose any weight.

Sue xxx

[lizandsarah]

Hi Sue

Sorry I can't help, I have anastrazole. 

Have you had a look at the side effects on the leaflet inside the box

Lxx

[Runningsue42]

Good evening ladies

Is anyone else taking tamoxifen?

Ive been taking them now since september and im convinced im putting on weight since starting them. 

Sue xxx

[NikNak5]

Hi Debi

i was like you, Brown haired before treatment, my hair has grown back like a badger (lol) grey & black. I finished my chemo at the end of August. I had my hair dyed on 16 December at a hair salon following the go ahead of the radiotherapy team & oncology nurse. It really lifted me & gave me the boost I needed and gave me a glimpse of the old me post breast cancer apart from the length. My hair is growing back really thick just like before but it’s more wavier than before. 

good luck Debi 

[Runningsue42]

Hello 

Debi i heard somewhere that we have to wait at least 6 months before we can dye our hair as the follicles are still quite sensitive? My hair has grown back very thick and ive got quite a bit of grey but im just reminding myself that 6 months ago i was bald!!  Ill probably wait another month to dye it but im looking forward to having a nice new shorter style than it used to be!!

I hope everyone is keeping well?

Take care

Sue xxx

[Debi2]

Hi all

Well the results of the wash in wash out hair colour was just that - a wash out!  Just gave my hair a very slight pink tinge👎

Debi

[louisefpage]

Hi Liz 

I'm desperate to dye my grey hair - please could you let me know what brand you used, many thanks.

Louise

[Debi2]

Thank Liz.  I have bought a wash in wash out one to try. i will let you know the outcome,

Debi

[lizandsarah]

Hi Debi

I dyed mine last week with no problems as I couldn't stand the grey!

I recently met a hairdresser who said you can dye at anytime, she recommended dyes without ammonia, I found one in boots

Liz

[Debi2]

Hi everyone

Has anyone dyed their hair yet? how long did you wait before dying it?, mine has come back a salt and pepper grey.  I don't mind the shortness of it (i think) but not the colour.  My young natural colour was brown.  I still have Herceptin and Pertuzumab every 3 weeks so not sure if that will effect the outcome of the dye!

Debi

[Runningsue42]

Hello Debi

Thats great news about your CT scan!! I bet you are so relieved!!  Fingers crossed your ultrasound is ok, its puzzling why you are losing weight tho.  I put on so much weight im still trying to shift it!!  

Take care

Sue xxx

[Debi2]

Hi Everyone

Got CT scan results today, everything looks fine - nothing that overly concerns consultant.  I have to have a ultrasound scan on my womb (swollen) and my seroma under my surgery arm.  If i carry on losing weight and having upper abdominal pain he would like me to have the camera down.  Feel a little relieved but not as much as  i thought i would be.  My scan also showed up a recent fractured rib !! (i thought i had badly pulled a muscle😱.

Debi xx

[Oots]

That’s brilliant news, Sue. I’m so pleased. 
I’ve just had an appointment with my oncologist and one of my questions was how worried I’d have to be when I make any observations. Very tricky and I didn’t get a straight forward answer. Shouldn’t really have expected one anyway but I suppose it’s best to be cautious and more concerned than we would normally be. 

I have started to do exercise; three sessions a week. An exercise class (circuit training) and 2 sessions in the gym (combination of cardio and weights). I’ve never been into gym exercise but I find it very helpful. Mainly because I feel so much better for it. I can feel my body changing for the better. But more importantly, I feel safe while exercising. I have lost confidence in my body and my balance is a real issue. It’s probably due to the neuropathy which is getting better but hasn’t completely gone and the controlled environment helps me getting in with it.

I am please 2019 is coming to an end. This time last year I had no idea of what was ahead of me and what a tricky year (Total Understatement) it’s been; I think we all deserve a better year ahead. I wish you all a happy and healthy 2020.

Oots

[lizandsarah]

Hi everyone

Had informal report from xray, oncology registrar couldn't see anything nasty on it. But I've still no idea why it is so painful, can't lie on my left side at all. I'm seeing onc mid January, so hopefully she'll have some ideas. 

I've also had the go ahead to have my ovaries removed, instead of monthly zolodex, should be in February (they offered me a cancellation on Christmas eve,  I politely declined!) 

[LynsH]

Sue, delighted to hear your news re the CT scan. So hard not to worry but great when you get a good result. 
enjoy the rest of the Christmas break. X

[Runningsue42]

Liznsarah

Have you had the results back from your xray on your pelvis? I hope it was all okay.

Sue xxx

[Runningsue42]

Hi Debi

Yes i can understand that you want to switch off from it all over Chriatmas.  Im an over thinker and i knew it would be constantly on my mind so i needed the reassurance.

Ill keep my fingers crossed for you.  Let me know how you get on.

Take care

Sue xxx

[Debi2]

Hi Sue

I haven't heard anything back from my scan which was last Thursday 19th.  I could have called to ask but i want to wait until my appointment on Jan 3rd, i just want to try and enjoy myself over the Christmas break.  I will probably ring and make sure the report as been sent to my oncologist so he has the results when i go.

Debi

[Runningsue42]

Hi Deni

Thank you so much

Have you had your scan results yet? 

I rang the hospital this morning and they told me to ask my GP to chase the radiologist to get them to report on it asap, which they did and i heard back within an hour or 2.  Stress to them that you are anxious as you have already had treatment this year, they shouldnt make you wait until the new year.

Good luck xxx

[Debi2]

Hi Sue

That is wonderful news.  I am so pleased for you.  Have a great New Year.

Debi xx

[Runningsue42]

Hello ladies

I wanted to share my news with you all.  I had my CT scan on xmas eve.  My GP has rung me today to tell me that the shadow on my lung is a change in tissue following the radiotherapy.  I also have a small infection for which my GP is giving me antibiotics.  No sign of cancer in the lung!!  

I am so relieved!!  Ive been worried sick for days!!! 

My GP has requested a repeat CT scan in 3 months to make sure it has all healed.

Thank you everyone for your kind thoughts, i am so touched by you all.

Sue xxx

[lizandsarah]

Hi Everyone

Haven't been on for quite a while, had a few problems with logging in but all sorted now. 

Sorry to be hear about your current situation Sue. I've just had an xray of my pelvis as I've constant pain on one side, hopefully get results today. Can't help but fear the worst, but balancing that with its probably just nothing. I also lost weight during treatment but it's stabilised now. 

Have had a lot of problems with my mood, emotions and anxiety since the intensive treatment finished, GP finally took charge and insisted I have some medication, which is helping. My onc said this part is the hardest, didn't want to agree with her but now I do!

I've just returned to work, I'm finding it hard as I feel under confident, there was an email sent to tell people I was coming back and not to ask about how I am as I was concerned that this would open the floodgates!

Anastrazole has been a challenge, but now I'm in Teva brand it's great, the cheaper ones gave me horrendous side effects

I hope everyone has a nice Christmas, I've got mixed feelings about it as the last year is so fresh in my mind and I find it a  struggle as I feel guilty I'm OK, when some of my new friends have just been told they have spread and are palliative.

Thank you for all the support this year 

[Debi2]

Hi everyone

Sue - I am sorry to hear of your worry, i too am in the same situation.  My doctor sent me for a CT scan and blood test because of a pain i have in the middle of my chest and because of the weight i have and am still losing.  He said it was just as a precaution and he wasn't overly worried.  Even though he said that , i just keep thinking it is something more sinister and he just doesn't want to upset me before Christmas.  I go back to see him on Jan 2nd to find out my results.  I am trying to put it to the back of my mind but it keeps creeping back and then i get all upset.  I don't think i can cope with any more.  I hope you get to the bottom of yours, try and enjoy Christmas, this as taken up too much of our lives already don't let it consume you with worry.  I keep this quote about worry on my desk top, it gives me strength:

I also listen to Queen "Don't stop me now" on full blast and sing along to it.   😊

Debi xx

[Phet7178]

Hello all, 

Long time I haven't been here! I'm sorry to have dropped out of action - I found everything with treatment a bit much a few months ago and pulled back a lot from the internet. Which is a shame as I always found this forum very helpful! But I'm 6 weeks post-radiotherapy now, and feeling mentally better. I'm at home in Australia for Christmas (the 24-hour flight was interesting with my achy joints and muscles from LEtrozole, but I made it!). It's so nice to be home - there was a time back in March I thought I might not see the gum trees in my mum's front garden again. 

Sue - I'm really sorry about this stress before Christmas. I know it's easy for us to say, and we've all been through the fear of waiting for results, but try to remember that most shadows that show up on scans are benign. There can be many reasons for these things on lungs that have nothing to do with BC. I have all my fingers crossed for you. 

I wish everyone a very happy Christmas. As a friend wrote on a Christmas card for me a few days ago - here's to a boring 2020!

[LynsH]

Oh Sue , I will be keeping everything crossed for good news for you. Easy to say but try and put it out your mind and enjoy Christmas with the kids. What will be will be in January. 
I really do hope for good news for you. Can only imagine how you’re feeling just now. Xx

[Runningsue42]

Hello ladies

Its been very quiet on here recently, i suppose everyone is getting back to normal (if thats possible!!) now their treatment is finished.

Ive had a bit of bad news, ive had a sore back for a few weeks so went to see my doctor, she sent me for an xray and the doctor rang me to say there is a shadow on my lung and theyre sending me for a CT scan.

Im absolutely terrified and worried the cancer has come back.  Im hoping i have the scan ASAP, and find out the results soon after but im so so worried.  I know i will go to pieces if its bad news.  I really dont want this hanging over me, i was looking forward to xmas just me and the kids but now this is spinning around in my head.

Sue xxx

[Shi]

Hi debi, please use the phone number at the top to discuss. I lost weight from diagnosis, through treatments because I’d stopped eating any junk. Your team are just being thorough which is what they should be doing, please speak to your assigned bc nurse too, they are there to answer any questions you have regarding everything ❤️ Sending 💕💕✨✨shi xx

[Debi2]

Hi all

I hope everyone is well and getting on with things.  I noticed there hadn't been any message on the April post for quite a while.

I popped on to ask a question (hoping someone is there😊) I just wondered if anyone as lost weight from the start of their diagnosis?  I was weighed by my consultant today and i have lost around a stone since March.  He has referred me for a blood tests and a CT scan which has really worried me. 

Any one have the same?

Debi xx

[Runningsue42]

Hello Debi

So pleased u have finally got a date for your radiotherapy YAY !!  Thats great you will be finished in time for xmas!!

With regards to your holiday, BOOK IT!!  Dont let the **bleep** (thats what me and the kids call it!!) stop you from enjoying yourself.  We went on holiday in october and it was great to relax and forget about all the crap that has happened to us this year.  The holiday will be something for you to look forward to and you deserve to enjoy yourself.

Hope all the ladies on here are keeping well? It certainly is quiet these days now a lot of us have finished our treatment, and our lives are beginning to get back to the way they were before.

Take care

Sue xxxx

[Debi2]

Hi Everyone

Radiotherapy starts on Wed - 20 sessions.  Will be finished just in time for Christmas!

Can i just ask - does anyone feel reluctant to plan anything for the future?  I was going to book an holiday for Sept next year but i fear that if i book it something 'C' related will pop up and i will have to cancel and fear losing my money.  Is this a normal feeling or am i being paranoid?

Debi x

[Oots]

Brilliant. I hope it all went well yesterday. You must be relieved it’s done. And radiotherapy is time consuming but not nearly as tough on the body. 

I think we should all hope for a better 2020! 2019 was a bit rubbish to say the 
least.

Oots xx

[Runningsue42]

Hello Kelly

Good luck with your last chemo and make sure you ring that bell loud and proud!!!

Radiotherapy is a breeze compared to chemo!!

Hope all the rest of the ladies are doing ok?

Take care

Sue xxx

[Kelly73]

Hello girls

well the day has finally arrived. I have my last chemo session today 👍

. it’s been a long time coming, but it’s finally here.

will just have 3 weeks of Radiotherapy to do, after this, then I can put this horrendous year behind me.

hooe you are all doing well x

[Debi2]

Hi 

I am in Yorkshire (west).

Debi

[Runningsue42]

Hi NikNak

Im in Warrington (cheshire).

Sue xx

[NikNak5]

Hi Sue

im in Suffolk, where are you?