Starting chemo in October

[Kirstie]

Thanks 🙂 will be in touch 🙂 xxx

[Kayteeb53]

I'm good apart from joint pains from the anastrozole. Small price eh? Glad things are improving for you and good luck with the reconstruction x

[Kirstie]

Hi I am ok thanks my symptoms went away! If they return I have to see a neurologist. I have finally got to see the consultant and will see plastic surgeon to talk about recon in the next 2months. Hope you are ok and not having any problems ( well apart from the ones we already have 🙂 ) Take Care xxxxx

[Kayteeb53]

Hope all ok with you Kirstie x

[Jayne_m]

Hi Kirstie

Thinking about you - let us know how the dr visit goes.

Take care

Jayne xx

[Kirstie]

Hi Had a phone call from Dr I now have to have a MRI scan Im not sure what has shown up on the ct scan until I speak with the dr tmw 😞 she left me a mesg saying I could stop taking the aspirin but she was arranging for an MRI I am a bit worried now......

[Kirstie]

Hi Sorry to hear of your experience story _so_far but glad you are fine now. I have my scan tomorrow I have had several bouts of the pins and needles down the left side of my face still and when it happens my eyes feel strange too effects my vision! I will be glad to get it sorted out, trying not to dwell on it but difficult got work later today til 10 so that will give me something to think of and in for the next four evenings.

Take Care Everyone Keep you posted xxx

[story_so_far]

Hi everyone still on this thread. After reading about having stroke symptoms I had almost the same thing happen to me last September 13. One of my eyes completely closed down like I had gone blind, my face had pins and needles on the same side.Was whisked off to hospital and over night in stroke ward, all cleared up next day, had ct scan and MRI brain scan and were clear so they couldn't decide if I had had a mini stroke or bad migraine. I think that all this has been caused by all the treatment we went through e.g chemo. Im also glad that it was not just me who has had this happen to.  

[Jayne_m]

Hi Kirstie - so pleased you got it checked and hope all is ok xx

[Kirstie]

Hi been to get checked out Dr does not think its stroke related she has done several tests arranged a blood test and a scan I have to start taking aspirin!

[Nonni385]

Hi Everyone

On Friday I had the last of my Radiotherapy treatments for the Uterine Carcinosarcoma & just have 2 sessions of Brachytherapy scheduled for this week and I'll have then completed all of my treatment for the latest cancer! I'm waiting for a review of the Breast Cancer in August / September and am then hoping that things will settle down enough for me to go back to work. I'm lucky that my employers have kept a job for me to go back to as they have restructured and many posts were cut - in theory I've come out of this well as I gained promotion!

Anyone with any symptoms needs to get them checked out early - I mentioned being breathless at one appointment and they discovered I had blood clots in my lungs (I'd had none of the other symptoms) so am now injecting myself daily with anti-coagulants!

Nonni

[Jayne_m]

Kirstie, please go and get that checked out - don't want to worry you but my hubby had similar last year, woke up with a numb left arm for 24 hours then it was fine, he spent that 24 hours barbequing, drinking and eating at our street party so we really thought he was ok.  He was advised to go for a check-up which he did the next day and they found he had had a minor stroke (only showed on CT Scan, all neuro tests were normal) so is now on preventative meds and has been fine since.  It is not normal to experience those symptoms and much better to be sure so you can get the right treatment.

Fingers crossed it was nothing serious, you have been through enough!

Kay you are so right, C respects nothing - evil illness which ruins so many lives.

Hope everyone is enjoying the summer xx

[Kirstie]

Hi Everyone

Been a while since I was on here dont know where the time goes now Im back at work. Things were going quite well I am a lot more tired but then work is very busy (shelterted scheme for elderly tenants) but last week I had a strange turn was just looking out the window turned around and almost fell over went all dizzy and my eyes sort of went weird I had pins and needles all down the left side of my face!! I was well worried thought it was a stroke! Luckily had the day off work so went in the next day not feeling 100% but just had one lot of pins and needles down my face but nothing else although I did feel so tired and my hot flushes were worse than ever! I am going to get checked out on Monday.

Have still not heard any thing about recon my year since treatment was up March July 5th was my 2yrs since finding the dreaded lump! Have an appointment in Sept for check up.

Hope you are all moving on and coping with side effects my joints are not the best stiff legs and wrists first thing.

Take Care all of you 

xxxxxxx

[Kayteeb53]

Goodness only knows! It is always lurking in the background, the C word isn't it. What a young age to go but C is no respecter of age is it.
My probs are just around the anastrozole joint pains, how are you?

[Jayne_m]

Cant believe it was a year ago we were in Florida - where does the time go??

Just lost a very dear friend to cancer - he had non-Hodgkins Lymphoma, had chemo last year and went into remission for about 6 months.  We had just booked our 10th holiday with the family only to find out that two weeks later he had a recurrence, that was in February.  In early April they were told that there was no more treatment they could give him and on 9th May he passed away in the hospice.  Funeral was Thursday this week, so very very sad, he was only 56 with kids of 15 and 18.  We had his wife and kids round tonight for supper - feeling very sad for them all and at the same time very lucky that so far my outcome has been very different - makes my feel very grateful for what I have.

Hope you are all doing ok and those who are still suffering side effects, I really hope that you find some relief sooner rather than later xxxx

Jayne x

[Kayteeb53]

It's one thing after the other isn't it Nonni? Quite telling that the pain went away when you were off the tablets.
Look after yourself x

[Nonni385]

The joint pain is an interesting side effect - I had lots of problems with it for about 9 months but it was difficult to decide if it was related to the Letrazole or if it was my original arthritis flaring up again. I've just completed 4 courses of chemo for the uterine cancer and had no joint pain at all for those 12 weeks. I had my last chemo 3 weeks ago and today my hands, knees and hips are hurting like mad once again so I'm back on the Tramadol.

Radiotherapy for the uterine cancer starts on the 9th June - 6 weeks of daily trips to London, it's the commuting that will shatter me. The CT scan I had a few weeks ago shows I have a blood clot in my lungs- apparantly it is something I should have been warned of as possible - as a cancer patient we are more prone to them!

Nonni

[Kayteeb53]

Hello any pumpkins still tuning in. Is anyone having joint pain from the anastrozole? I am just so weary with it
X

[Kirstie]

Hi Everyone

Nonni1385 I will keep you updated my manager is not very supportive have had a few issues last phrase back but finally after a meeting with HR and union I am hoping it will be better this time around.Hope your treatment goes well, I can well remember that slump and trying to make the most out of the time I felt not so bad.

Take Care xxx

[Nonni385]

Hello Pumpkins

so good to see some good news being posted on here - Ribby72 so good to hear that the op went well and you are moving on to the next phase. Kirstie please take it slowly with your phased return back to work - I do hope you have a proper plan in place and supportive management. I had a lot of support from a MacMillan nurse when I returned and they had a good publication that I gave my boss and head of Service to read.

On Thursday I had my 3rd chemo for the Uterine Carcinosarcoma and I have to say this combination makes FEC-T look like a doddle.I'm going to make the effort to get out today and meet friends as it's the last day on steroids and I know that I'll have a massive slump probably starting from Monday. More CT scans are lined up for early May to see what's been happening and to decide the next steps in combatting this.

Nonni

[Kirstie]

Congratulations Ribby72 🙂

 I am so pleased for you, wish it was me still waiting have not heard a word! Starting 2nd phrase back to work on Monday!! Take Care and keep in touch hope things go well for you xxx.

[Ribby72]

Hello Pumpkins!

Well I had my recon 8 weeks ago.  Was a tough few days - dont do well with anaesthetic & reacted to antibiotics - but since then things have been as expected.  Some1 asked me if it was bad but all I can say is it was what I expected.  Very little pain, it was more uncomfortable than painful.  I am now the proud owner of a C cup boob (which may settle to a decent B) who I have named Mabel!  She's bloody brilliant!!  As my other boob is only an A, I will be having it 'tweaked' (small implant) in about 6 months & I cant wait  🙂

I have a partial prosthesis in smaller boob at mo but ehen im dressed, you cant tell.  Also to be able to bend down/wear 'normal' tops & have a cleavage feels great.  And although im scarred & lopsided, I can feel my confidence coming back....

My breast has healed really well but unfortunately I have a 2cm hole in my back where my wound opened up.  This is quite common with LD flap recon & after a few wks of having it packed, today I had a few stitches put in.  No big deal as the area is completely numb. So hopefully it should heal up...

I wish I could post a pic of Mabel - my surgeon is very very pleased with her (& I think im just a little bit in love with my surgeon ♥  lol).

There are so many posts for me to get through but to those who are going through tough times I eend my love & best wishes....... Mel (& Mabel) xxx

[story_so_far]

Hi everyone who still uses this thread. I am now on the surgery list for reduction on good side boob. Am a little worried about it though. Sorry to hear that others are on chemo again, hope it is not quite so bad this time. I now use 'surgery' thread as now more relevent for me. I still do get a little fed up at times, but hope that when all this is finished and body is the same on both sides, I may be able to buy new clothes that fit and not keep going over on one side! I now go to a dance exercise class which does help to make me laugh, which I really need at the moment. Feel free to pm me if you just need a chat x

[Kirstie]

Hi Everyone,

So sorry to hear your news Suzee64 I was thinking of my mom more so yesterday even though it has been 18yrs now 😞 How horrid having to have more chemo it must be for you it makes me feel guilty that I feel so down and I only had the 6 doses and radiotheraphy now waiting for reconstruction although keep having mixed thoughts would like to have it but keep thinking of the surgery ahead!  I am having lots more low days at the moment, doing my best to shake them off but so hard when once again my life seems on hold! Got another note for work last Wed it is for 4weeks my manager is not being helpful at all I get the impression she would just like me to give up on it and leave. As I am single this is not an option,my doctor has put on the notes to discuss other options with lighter duties and altered hours but noone seems to be helping. I have got in touch with my union lady and hope to be hearing from her today. Even Occ Health advice to my employer does not seem to be helping even though they agree with all the doctor advised. I have to go and see the oncologist in April as started having problems with my joints after doing the phrase back to work my wrists were awful after doing all the lunch time carrying!

Really Im so fed up 😞

Love to you all and Take Care xx 

[suzee64]

Hi ladies, having a rough week thurs had to go for results of pet scan, got to have more chemo. Then had my brother in laws funeral to attend he had a brain tumor. Then as we were coming out my sister rang to say my mum had passed away. So thurs was a very bad day. Hope every one is doing ok
hugs suzee xx

[jane_813]

Hello everyone,
You probably don't remember be, but I was part of this group when it started when we started chemo in October 2012. I just though I pop back in and say hello. I still recognise alot of your 'names' and I would like to thankyou for being there during that tough time.
I dropped out of the forum as I switched over to similar Facebook groups and a local group. But ultimately you were the only ones going through chemo at the same time.
Subsequently, I went on to have a mastectomy- but had a tough time as I didn't heal for 4 months. Long story. At times it was even worse than chemo! Then I finished up witn radiotherapy last September. Oh and a scare requiring a bone scan in January this year which was clear thankfully.
Recently I started returning to work -phasing in. It's been a real slog as you all know.
Interesting to read your progress- too many to mention.
But thanks for being there right at the beginning of all this.

[Kirstie]

Hi everyone.

Back to being at home, went for check up with Doctor she said the job was too much and wrote a note saying that a lighter job would be better, so now the note is for 4weeks ( 2 already gone) have to see what they offer if anything! It wont be at my current place as there arent any lighter jobs only afternoons and my manager has already said I wont be having one of those 😞 I have spoken to the Union and employer has to put me on redeployment list for up to 12 weeks then if no vacancies make me redundant 😞

I am missing the company although I feel much improved as regards my aching wrists, legs and back. It has been a bit of a nitemare sorting benefits out all over again and several phone calls, but at last now getting ESA. I am feeling a bit low as nothing I do lately seems to be going well, first my house move and now work.

Never mind a lot worse off people, did a bit of gardening yesterday aching a bit today but it was good to be out in the sunshine and lots more still to do but made a start 🙂

Take care everyone xxxx

[Kayteeb53]

Well done Nonni, that was a tough day. Take care and thinking of you
Hi Jane, so glad that Rosie is such fun
Kirstie, I hope all is well for you
K x

[Kirstie]

Well Done Nonni385 that was a well long day for you.

Take Care xxxx

[Nonni385]

I spent 8.5 hours at the hospital yesterday having a PICC line fitted and then nearly 6 hours on the IV - lots of extra hydration but got through the day with no side effects. Some nausea this morning but on the whole a fairly comfortable feel for chemo Day 2!

Nonni

[Jayne_m]

Hi Nonni

I am sorry to hear you have more treatment ahead, that is tough and I really hope you get through it with the minimum of side effects.

Well done on losing a stone, any weight off is in the right direction (at least that is what I tell myself when I go to class and have lost 1/2 lb!).

I hope your treatment goes as well as it can and that you find the strength to get through it.

Thinking about you

Jayne xxx

[Nonni385]

Hi Jayne

congratulations on the weight loss, doing it slowly is the best way of keeping it off. I've only managed to lose a stone but haven't been able to fit my work schedule around any of my local Slimming World groups. 

My news is not so good, I start chemo on Tuesday for Uterine carcinosarcoma - the surgeon is very pleased with the histology results but wants to use the belt and braces approach so I have the joy of more radiotherapy to come.

Nonni

[Jayne_m]

Hi all

I havent been on the the thread for a while so good to hear how you are all doing.  I hope those struggling to get back to work can gain strength over the coming weeks, perhaps the sun will help - today was lovely.  

Getting the dog was the best thing ever, I really love going out for walks with her and it has certainly helped my fitness. I joined Slimming World in September and I have lost 2 stone which I am delighted about - only another three stone to go but I am sure I will do it.  It is slow but sure, not helped by the Tamoxifen, but I am determined that I will get this weight off.

Hard to believe it is a year since I finished active treatment, I still get tired very easily but have learned to rest when I need to.  Improving my fitness has helped too - I am lighter now than when diagnosed and I am working on getting stronger - might even join a gym but I want to make sure that I can improve my strength, particulary in my arms, before I waste any money.

Take care everyone and let's hope this is the start of some better weather 🙂

[perkinjeff]

Hi all - can't believe it is so long since I checked in with you all - have been up and down since then - had some really positive times but have been quick to pick up germs which have wiped me out - guess immune system isn't what it was - sorry to hear your news Nonni - hope you are doing ok now Teej - no doctor will admit just how much anastrazole affects joints - have had some really bad pains in my left hip - told me it was not likely!!! last year still feels pretty vivid to me even now on some of my low days but the good days are good!!! - am child minding 4 days a week which is hard on the bad weeks but great on the others !! - dstill need to lose about 10 stone but can't feel motivated which is very naughty!!! - need to exercise more but a1 year old and a 4 year old do kewep me on my toes!!! - still hate my hair and my body but need to be grateful to still be here!!! - I still remember how you all kept me feeling I could make it last year and hope the others who are quiet are doing ok - take care all of you especially Nonni and Teej - good luck with reconstruction Ribby - love to all

hugs Janice

[Kayteeb53]

I am so lucky to have retired. I don't envy any of you trying to hold down a job whilst going through all this.
Ribby, hope recon went well
Nonni, hope scan found you healthy enough for your chemo.
K x

[Kirstie]

Hi Nonni

Hope it goes well for you. I am struggling at work at the moment manager giving me a hard time. On 6th week of phrase back doing 4 days now 9-2 manager wants me in at 7.30 but Dr has said not yet so I am waiting to see what HR has to say seen Occ Health they agreed with the doctor. My wrists and legs are aching I feel like I have been to Boot Camp hoping it improves!

Take Care xxxxx 

[Nonni385]

Hi Ribby72 - I hope all went as planned yesterday with the reconstruction.

I'm off to the hospital tomorrow for a heart echo scan in preparation for the next lot of chemo

Nonni

[Kirstie]

Great News Ribby Im jealous wish they would hurry and send for me Take Care and good luck thinking about you xxx

[Ribby72]

Hello pumpkins...

Just a quick note to say my recon op is booked for next monday (24th).  Excited but apprehensive too...

Met a woman who had hers 8 weeks ago & was great to talk to her about the op & how shw was afterwards.  Put my mind at rest on quite a few things.  She let me cop a feel too!  

Love to all, esp those having a rough time.  Stay strong ladies. Xxx

[Kirstie]

Hi

Well Nonni385 its always a waiting game isnt it 😞 I had my scan eventually had big problems doing the injection all my veins wrecked form the chemo ! Have a few bruises now, so waiting for me too for results. Fingers crossed 🙂 

On week 4 of my phrase back to work! I am struggling, it seems like another person that used to rush around fitting everything in! I have Doctors app later today to discuss how its going.

My manager has not followed much what the Doctor rec and has put pressure on me, she is saying now I can only have another two weeks for phrase back! I dont see Occ Health til 20th, my job is very physical ( sheltered scheme for elderly tenants) so involves personal care ie showers, washing dressing etc.

Im finding it quite hard lunch time with carrying plates etc.

Take Care All and keep in touch xxxx

[Nonni385]

Hi

I've just got home from the hospital follow up. They are pleased with my progress and healing and are now talking Chemotherapy, Radiotherapy and Brachytherapy (? spelling). They need to assess how suitable I will be for the drugs they propose so I'll need to have my heart monitored for any previous damage and I'll need to talk to my ENT consultant as one of the drugs can affect my already impaired hearing. No dates for any of this so it's back to my armchair, knitting and watching the Olympics!

Nonni

[Kayteeb53]

Hello all, popped back to see how everyone is. Am so sorry Nonni that you are needing more treatment. Susie and Teej, am hoping you are holding up well.
Little Bear and Kirstie, hello ( waves),
I am doing ok, probs with my back continue but nothing compared to the problems some are having.
Take care all
K x

[Nonni385]

Check with the hospital if you have to stay in the hospital, if it's a nice day could you go for a walk around their grounds etc. Mine was happy for me to leave the site and do local shopping etc the only things I had to do was stay away from very young children or frail older people and flush the loo twice if I used it anywhere but the designated loo in the hospital.

[Kirstie]

Hi Nonni

Thanks for the reply 🙂 I cant come out as the hospital is quite a way from my house. It says I can visit the cafe whilst waiting my three hours, just need to find someone who is not working that day to come with me will be boring on my own. If I take my kindle tend to fall asleep 🙂

[Nonni385]

Hi Kirstie,

I've now had a couple of these bone scans, they are usually quite painless. It depends on what your hospital's policy is but for my last one I had to be at the hospital for 9:15, had the injection and was out of the hospital by 9:30 with instructions to be be back for 12:00. I' d pre-arranged to meet up with friends so we sat and knitted for a couple of hours had a toasted sandwich and tea and then headed back to the hospital. The test itself took about 30 minutes.

Good luck with it

Nonni

[Kirstie]

Hi everyone,

Will be on my third week back to work on Monday have been doing just Mon Wed Frid, I have been a bit tired but its early days yet. It was good to see everyone, and to get back into a bit of normality 🙂

Nonni I am sorry to hear your news, I hope you are getting plenty of rest whilst waiting for results I will hope they are good for you. Suzee hope you are doing ok.

I have to get a full bone scan on Thursday at the Nuclear medicine dept at a hospital in another area. I have been having problems with my back so oncologist arranged this. I have to spend a while there as after being injected with the dye have to wait 3hrs and drink 2litres can eat whilst waiting. Im not looking forward to it!! Has anyone else had this done.?

Well take care everyone xxxx

[Nonni385]

Hi Suzee,

it's a good job they tested your blood sugar and found the diabetes. I was diagnosed as one the night before ear surgery 10 years ago and have managed to control it purely through diet for the last 10 years, even during my hospital stay this week.

I'm now home recovering from the surgery where they took everything related to the reproductive system plus samples from the pelvic lymph nodes and some blood vessels. I need to have lots of rest and very gentle movements and hope for histology results that will define the next stages of treatment. i'm feeling sore but still mentally strong

Nonni

[suzee64]

Hi there came out of hospital yesterday, but not only having to cope with the mastectomy also found out that I am now a diabetic, when I went in for op blood sugar was at 17 so very high as normal range is 4 to 7.
So now having to come to grips with testing blood and trying to adjust diet to suit, as well as having tablets to try and keep it under control. Hope everyone is keen ping well.

husgs suzee

[Guest user]

Nonni, so sorry to hear your news. What a blow for you. You sound very brave, I'm glad you have someone you sound confident in.

Teej, hope the last chemo is over now, and that it's all up from here.

Suzee, you will have just had your mastectomy; I know the first couple of weeks are tough (I had mastectomy Sept 2012) and hope you are being well looked after in these early days. Lots of love and thoughts to you.

Please keep letting us know how you are.

I've just had a dose of Norovirus, but one thing about all we've been through and all that some of you are going through now, is that it gives a perspective on life - so it was unpleasant but inconsequential.

Love to all other Pumpkins who like me keep popping in still. Xxxxx

[Nonni385]

Hi

I saw the hospital today and will be admitted on Sunday to have a full hysterectomy on Monday. The images were not clear enough to see if it has affected the bowel as well so I'm prepared to find I wake up with a stoma. Consultant was friendly, positive and I felt very safe with him in charge.

So glad to see you had good results

Nonni