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Starting Chemo April 2015

Jaydubz52
Member

Re: Starting Chemo April 2015

Hello everyone, sorry not posted for a while but had 5th FEC last Friday & only just starting to come round a bit! Well, a turn up for the books last Wednesday at my bloods & clinic appointment - I saw my oncologist! First time since April! Naturally I bombarded him with questions, he's such a lovely guy, he listened patiently, explained everything carefully & made sure I understood it all fully. Feel much better about my treatment as a result. With you all the way Egret, I'm glad you've been able to change your hospital & I hope the 'new' hospital are a lot more helpful, It's amazing what just one good discussion with the onc can do. Have to say I've got a good rapport with my onc & his registrar, it was just the lack of access that was the problem.

Generally, just a thought on all the psychological effects (had one or two meltdowns this week myself), could it have anything to do with all the steroids over the last 3 or 4 months? I seem to remember reading somewhere that they can cause 'low mood'.

By the way, after FEC 4 I got an horrendous mouth ulcer on my tongue - couldn't even drink water - and the hosp gave me something called Orabase. Weird stuff, it was a gel that seemed to turn into concrete when I put it in my mouth but it did the trick.

Huneebee
Member

Re: Starting Chemo April 2015

Good luck today x
T3D
Member

Re: Starting Chemo April 2015

Really hoping you get the treatment you deserve Egret you have made me realise how lucky I am! And Jane1978 Coconut water is lush! I'm now craving a nice cold glass lol.it may be worth a try as it's supposed to be REALLY good for you.
Off for my ecg this afternoon as start my herceptin on Friday think it's gonna be a long day as have the injection scheduled for half twelve then have to sit there for SIX hours so they can be sure that I'm not allergic to it!! Hoping my fingers will have recovered from their stiffness so I can at least take my sewing!
Stay well ladies xxx
Huneebee
Member

Re: Starting Chemo April 2015

Egret, I can't believe you've been treated that badly, it's appalling. I really hope your new hospital make up for it and are lovely to you.

You deserve to be treated well and with care. And they've clearly failed on both counts. Xxx
Jane1978
Member

Re: Starting Chemo April 2015

Hi egret that sounds awful hiw u have been treated !!! Think ur doin the right thing moving to another hosp!!! Sound like they could do with some more staff!! Coconut water ?? Never heard if that but I have managed some thin chicken soup tonight so I'm hoping tom I'm gunna be slightly better !!!! How long did it's last for ?! I'm on day 5 now think yesterday was worst so maybe getting better xxxx
newey47
Member

Re: Starting Chemo April 2015

Oh Egret what an awful way to be treated.  I know where you are coming from as have had some of it myself.  Hopefully now with your change things will move forward more smoothly, I do hope so.  Take Care xxxxx

Egret
Member

Re: Starting Chemo April 2015

Hi Jane1978! I am sorry to hear about what you are going through. Would coconut water and protein drinks (yes the same as for slimming!) taken with a straw (or two straws) help? Egret x
Jane1978
Member

Re: Starting Chemo April 2015

Ooooof I really hope
None of u ladies get this awful thing !!!!!!!! I havnt eaten for 3 days it's so
Excruciating I am crying eveytime I talk and the drugs they gave me don't even touch it!!!!!! I feel like a total wimp even tho it's plain to see by looking at my mouth y I'm so
Miserable iv had another day laid on sofa whilst mother and sister do child care washing ironing cooking for kids 😞😞😞😞😞 I'm supposed to be on holiday in Friday at hosp tomorrow for pre ass for surgery and at my sis in laws preg scan on thurs !!! 😳😳😔😁
Egret
Member

Re: Starting Chemo April 2015

Hi everyone! Oncologist 14 July 2015 Appointment at 1:45 pm. Check in with the hospital check-in device, at 1:15. The device said appointment "on time". It is 1:45, my appointment time. I can see my Consultant oncologist in animated discussion with another patient, in the vast public waiting room. I am aware that she is dealing with someone else, during what should be my appointment time. The last and only time with her was in April after a wait of 90 minutes, Then I got about 25 minutes.

The Consultant oncologist ignores me, I am feet away as she is in animated discussion. Her message to me is clear. Why was that woman seen during what should be my meagre allocation of time? I go to the desk. The Consultant goes to her office. I am told two people are in front of me. I speak to others patients. Two of them have their oncology appointment "rescheduled" in a month's time! They were not informed, no letter or telephone call, they arrive here, shocked by the news. So they are waiting, but unlike me, they might not even be seen. A total disgrace.

One hour fifteen minutes after my appointment time, still no Consultant.
However, I am invited to see her Registrar. "i saw you twice", she says. "No", I reply, "just once, plus one telephone call in April". The Consultant is next door. How do I know this? Using my (real) transport issues, I ASK TO CHANGE HOSPITAL FOR THE RADIOTHERAPY. My chemo nurse did not pass on my message, no surprise here. This is news, important enough for the Registrar to hop next door to consult "my" Consultant. So she is there, is she? For once, I am thankful for my transport problems, as it is an acceptable reason for moving my treatment to another place. The other reason, much more serious, is the breakdown in trust. I have lost confidence. I am not signing the consent form for radiotherapy, I will sign it in the next hospital, after my transfer. By transferring my care, I will have a review of my case. After my last chemo and the removal of my portacath, I won't have to return to Hammersmith. My aftercare can be in Camden.

I am in soaring spirits despite my 5th chemo looming in two days' time.
I really wish you well, all of you, with lush eyebrows and eyelashes, and nice hair and the end of our awful digestive system, mouth ulcers, grey nails, chemo smell and taste, headaches and steroids induced sleeplessness. I am counting the days. I long for normality.
I am so relieved.
Egret, x
Molliana
Member

Re: Starting Chemo April 2015

Roots and New are for your head 🙂 x
Jane1978
Member

Re: Starting Chemo April 2015

Mine only came after chemo stopped!!!! I'm always arsehole upwards !!! So what this stuff ur all
Using for ur eyebrows etc can youI use on head too x
Molliana
Member

Re: Starting Chemo April 2015

I ordered Roots which I am going to use maybe twice a week. And New which I might use every day!
Huneebee
Member

Re: Starting Chemo April 2015

Sorry, got distracted by hair talk.

Mucusitis sucks. I've had it throughout the treatment. Really bad on round 1 & really bad again. Hence the chemo being shortened, as my digestive tract is inflamed from top to bottom. I'm glad they e diagnosed it for you at last. It's really painful, but I believe it goes away when the chemo stops. I hope you get better soon. Xxx
Huneebee
Member

Re: Starting Chemo April 2015

Must order too. We can have a growing competition!!!!'
Molliana
Member

Re: Starting Chemo April 2015

Ohhh. Sounds like you have had some good news. Sounds horrible about the mucusitis tho. They should really have done something sooner. Poor you. But like you say at least they are doing something now and hopefully you will feel better quickly now xx
1981mum
Member

Re: Starting Chemo April 2015

Oh Jane, hospital sucks! Hope you are home and well again soon x
chachacha
Member

Re: Starting Chemo April 2015

Hope you feel better soon, I had to look up Mucusitis , sounds horrid, take care .
Jane1978
Member

Re: Starting Chemo April 2015

Well sat in hosp ahain!! This time I'm getting liquid
Morphine a gel spray n something else as I have Mucusitis !!! At least they giving me Sumat !! Also found out that my lump under my arm can longer be seen either thought was just breast one !! So I'm hoping when my mouth feels better in goin to be captain postive instead of captain negative lol xxxx sending love ladies xx
T3D
Member

Re: Starting Chemo April 2015

Hi Val my taste isn't brilliant on T almost like everything tastes of phlegm! Mmmmm delicious! I can still taste sweet things though and have a seriously awful addiction to McDonald's apple pies! Something I would never normally eat! Am going to try the angel delight as I used to love that as a kid! Stay well xxx
Molliana
Member

Re: Starting Chemo April 2015

That's exciting. I am going to order now! I am going for lush! #onlineshopaholic
1981mum
Member

Re: Starting Chemo April 2015

On a positive note, I got some Roots from lush and rapid brow today - all ready for the big 'grow back'
Decided to try and prep for when it's all over!
I'll start after chemo 6 x
1981mum
Member

Re: Starting Chemo April 2015

Val sorry to hear you are struggling so much , my taste buds certainly aren't near normal yet but I meant in terms of eating anything at all quantity wise as my mouth has been to sore to eat anything
I've not yet found a food that I enjoy the taste of, food is fuel just now
Hunneebee- hope tomorrow is a better day, disappointing to hear you had to cut your weekend short. Sucks !
Huneebee
Member

Re: Starting Chemo April 2015

Hi All.

Been reading up on where you all are. We are all tired with the treatment, which is why we go up and down like yoyos. I think that's normal for us.

Mol liana,

I wasn't going to use a Counsellor, and then a friend (a BC survivor) advised take it all, then decide if you need it. I've inly seen her a couple of times, but she has surprised me, helped me make some thoughts/decisions clearer in my head. But I did 'gel' with her. I think that's key to it working. She's put me down for a mindfulness course in October, when everything finishes. She says most people crumble after treatment stops - it's normal.

I think it won't do any harm, to investigate Counselling. You have so much on your shoulders. Nothing lost by looking.

Mouth wise, my tongue is cracked and sore. My OH got Chinese tonight, knowing how much I love it. It really stung to eat, as my tongue is cracked and sore. So the nystatin is back out again. It eases it I think, but is not a cure.

The SE of my final round of chemo caught up with me and we had to cut short our weekend away in the van. I was unable to get off the loo again 😞

Now, I'm home in bed, bearly have the energy to move, let alone run back & forward to the loo. I've 'slept' passed out from exhaustion today. And now I'm hugging a bowl fighting off being sick.

We are walking a hard path ladies. Keep strong. Xxx
newey47
Member

Re: Starting Chemo April 2015

I dont have the metallic taste with T - just everything tastes awful.  Yes usually eating loads strawberries and cherries this time of year - even have in the garden - but yuk.  NOTHING tastes at all as it should. NASTY and fed up with it now.  One more T to go, so guess another couple of months of it yet.  Be ready for sprouts I expect lol.  Mind u now cabbage tastes ok - how weird is that -so mild a flavour. Val

Egret
Member

Re: Starting Chemo April 2015

Hi Molliana, I tried counselling but I might stop it because transport is an issue, getting there and back is a big effort. I think that if you ask for some counselling, you need to ensure that it is the right type for you. It can be long-term, at least ten sessions. Good luck! Egret x
Kellc
Member

Re: Starting Chemo April 2015

I know  what you mean about that taste buds I had my last chemo two weeks ago and still everything seems to have a metalic taste,its been the same since the first one. Glass of white wine tasted horrible and strawberries are terrible.

 

 

newey47
Member

Re: Starting Chemo April 2015

Oh well lucky you, those who can taste again lol.  I live in hope then, but have a long wait I expect.  Just cooked a chicken roast, disgusting, how can that be lol? however, butterscotch angel delight was nice and cooling in the mouth and throat even though I couldnt taste it lol.

 

hey ho xxx

1981mum
Member

Re: Starting Chemo April 2015

Hi newey, I don't know for sure since it's my first T but I've eaten more today than I have since Monday, it feels like tastebuds are returning and ulcers don't hurt like they did last week ( I couldn't eat or drink ANYTHING)
Hope you recover some normality soon x
Tussie
Member

Re: Starting Chemo April 2015

Newey! Sorry you are struggling with the tastebuds! I had 4xTC and had problems after every cycle. It is now over three weeks since my last chemo and I am eating dinners OK but still can't drink tea, coffee or disappointingly any alcohol whatsoever. In fact I haven't had any alcohol since April since it tastes disgusting, believe me I have tried everything! The tastebuds will return but it might be a bit of a long process I'm afraid, hang on in there xxxx
Tussie
Member

Re: Starting Chemo April 2015

Molliana, I would ask to get some counselling sooner rather than later. Say yes to anything going that might help you get along a bit better. I don't have any personal experience to base that recommendation on but I know that when I broke down after getting told I needed chemo I asked the BC nurse if she thought I should have counselling. She replied she thought I would be OK but ask for it if I felt I needed it. I have been like everybody else here on the forum, up and down like a yo yo, lacking in confidence regarding hair loss, crying for hours, struggling with the horrid SE but now that I have finished chemo I feel I have turned a corner when it comes to my mental state. Physically I still have to cope with non subsiding SE, have to wait and see and hope they go. I am still thinking about taking up the offer of counselling once I have finished the radiotherapy as I think the thought of recurrence will always be present and I would like some strategies to deal with that. Take care, hugs xx
newey47
Member

Re: Starting Chemo April 2015

How do you know you will eat normally by next week?????? I ahvent eaten normally since being on this docetaxol at all, I dont have a normal week of eating at all, the taste buds just never come back.  Think this is it for me now until I finish.......thats why its so depressing........with FEC at least I did get my taste buds and appetite back but not with this one.

 

On dear never mind, xmas dinner should be good lol x

 

 

Val

1981mum
Member

Re: Starting Chemo April 2015

Agree it's good for the weight though , I'm back to pre pregnancy weight already. Losing about 4lb with every chemo
I'll be back able to eat normally by next week I shall try to enjoy my food then x
1981mum
Member

Re: Starting Chemo April 2015

Jane - I got gel Clair from my oncologist for ulcers. I still have 1 or 2 but they've cleared up much quicker than last round and also I can eat today !
Mol I think a counsellor I a great idea, best to get ahead of these feelings now
I may see one too once chemo is over as I fear every ache/ pain is going to make me think it's come back and I'm going to be a nightmare
newey47
Member

Re: Starting Chemo April 2015

well the nyastin is helping with my tongue, but if its not thrush it wont help you i dont suppose.  No taste still, trying absolutely everything. Even Pepsi which has been keeping me going,I cant tast now.  Just swallow to get fluid in lol.  Trying a roast chicken dinner today, liked cabbage very much the other week, so bland but can taste it funnily enough or could last week.  Really fed up with the food situation tbh, there is just nothing that helps at all.  Porridge is the only thing I can eat and taste.  I am so looking forward to this being over so I can enjoy me food again.  Still lost10lbs so that is a good thing.  Good luck all you lovely ladies with your probs,and yes maybe seeing a counsellor will help, it sure cant do any harm can it?

 

love and hugs xxxx Val xxx

Jane1978
Member

Re: Starting Chemo April 2015

Aww moll I would try the councillor I ant been offered it but would do if got chance things r always better out than in !
Molliana
Member

Re: Starting Chemo April 2015

I sound like a right fruit loop!
Molliana
Member

Re: Starting Chemo April 2015

Ah sorry Jane. I just read back and see you have already tried gargling with Cocodamol. I haven't been any help then 😞 x

We all have our own stories I guess and i am so pleased some of you are coping better emotionally. For me, two biopsies and three surgeries took their toll emotionally and during those months I suffered terribly with ocd. Having to wear the right clothes, say the right things, check things, sit in the green chair in the waiting room and the list goes on but I felt those things were real. Chemo started three weeks after the third surgery and i have very much some deep emotional scars that haven't had chance to heal. I am wondering whether I should get referred to the counsellor now I have started almost like flash backs of it all. Has anyone else been making use of the counsellor? x
Molliana
Member

Re: Starting Chemo April 2015

Have you got difflam? And I know it's a bit primative but have you tried swishing some salt water around in your mouth. Obviously don't swallow it! Or how about some dissolvable asprin? Use that to swish around? xx
Jane1978
Member

Re: Starting Chemo April 2015

He also sed it's ulcers not thrush! So I'm using bonjela
Jane1978
Member

Re: Starting Chemo April 2015

Had the emerg doc out and he gave me a script for that nystatin but doc at hosp sed wouldn't help?!! So does it ? May get oh to go cash it in then !!! I can't swallow never mind eat !!!!! Cos I'm already on maint antibiotic n anti fungal sed nothing else to do but I'm really struggling !!!! I been in bath now back in bed !!!! 😥
newey47
Member

Re: Starting Chemo April 2015

 

Jane

Oh dear you are having a bad time.  If you are neutropenic why are they not giving you something,when you are really low like that everything is such a struggle, its complete exhaustion, no get up and go.  Why are they not giving you something forit, cant understand it.  I have been given the GCSF injections this time, one more to go, and they do seem to be helping.  Well I havent droppedlike a stone like last time anyway.

 

And as for sore mouth, there must be something they can give you for it.  I have thrush at mo so using my nyastin drops.  Hard enough to eat with all this without a sore mouth. Lots of cold ice lollies and ice cream will help with that, I am eating loads of them cosit numbs all the mouth and throat too - if only for a while it is a bit of a relief.

 

Its not good enough and I am sure you are exhausted thats just how I felt when neutropenic - hope you feel better later, but not sure without some help you will.  Push Push Push - shouldnt have to but pester them its not fair.

 

Love and hugs to you xxxx

Jane1978
Member

Re: Starting Chemo April 2015

Oh dear what a nightmare !! I feel rude without my scarf on as tho someone caught me in just my bra !! I wouldn't dream of having my head out in public but that's just my insecurity ! My friends and family have all seen my bald head and close family even forget I'm bald when inhave my wig on Etc but I feel like an unfortunate sole at the minute as I have few fluffy bits starting to sprout when it's covered don't think will feel as conscious it's the fact of the bald head shining thru that doesn't look nice ! I had CRUK BBQ yest n only close family n friends there n managed to be in tears at least 3 times during the evening. I'd spent all day seeing out if hrs doc then at hosp which was total waste of time anyway as have awful awful sore mouth and neutrapenic but still
Sent me home with nothing !!! Think I was so worn out physically and emotionally and people kept saying wats up?? Feel
Like inhave to constantly thinking a reason why I'm crying ! My mums same cry at eveything she was also crying yesterday my son said why is everyone crying 😣 I cried at sports day when this fat girl was too big for her sack and fell down with her pants round her knees !! How
Mortifying for the young girl!!!! I CRIED!!!! I'm exhausted !!!!!
Egret
Member

Re: Starting Chemo April 2015

Hi ladies, thank you to all of you. Egret x
newey47
Member

Re: Starting Chemo April 2015

Oh ladies I do feel for you. I really so couldnt care about me bald head any more,lots of my guests have even seen me like it - I dont care.  I dont have all these sad feelings either and certainly dont cry at all, or very rarely.  I hate that my lashes have almost gone and yes I know what you mean about cancer face - I do see it in the mirror. BUT we are fighting a terrible disease - never felt il before all this and we are having to deal with the effects of these nasty nasty drugs/poisoins weare being given. It will all come to an end and I for one am determined that this will be the end.  Its never happening to me again, I am going to get back to my normal life, and I am going to look as good as before, if not better.  I am going to make subtle changes to my life, like taking up swimming again to keep fit, treat myself as and when I can and am able to/afford to, I am not going to stress about anything, and I am going to make more time for me, my family, friends and OH and time for US too. Because my motto has always been "lifes too short" and something like this happening to you makes you realise that more than ever.

 

Oh dear very deep thinking this morning after a busy morning cooking brekkies for people and doing rooms, now exhausted, But I achieved it and it makes me  feel good that I did. Normal life will return so soon, we will look back on all this and it will seem like a dream.

 

Keep strong ladies, I know your sick of hearing it,but its the only way forward - look after yourselves, allow yourself time if you need it, cry if you need to, ask for help, ask for understanding and just be gentle on yourselves.  

 

Tak care all of you, much love xxxxxxx Val xxxxx

T3D
Member

Re: Starting Chemo April 2015

My heart goes out to you egret and mollianna. We all have to handle this in our own way and NOTHING we feel is wrong as it our way of dealing with this and there isn't a wrong way of dealing with this.
I am the opposite my friends , family, neighbours and multiple delivery people have seen me bald and if I'm hot or uncomfortable when at the hospital I take my scarf off but I went out to dinner last week and I was SO hot and yet kept my scarf on, not for my benefit but because I was thinking of how my friends would feel! Hope your weekend improves and that you both feel better soon. It's so difficult and we all feel differently so standby your guns and feel how you feel and I'm sure we will all get through it coping in our own way xxx
1981mum
Member

Re: Starting Chemo April 2015

Egret & Mol you've had me in tears again this morning ( I'm sure it's the chemo se)
Both of you are right
I do enjoy being bald at home, mum, oh, sister, brother, in laws are the ones on the list ( oh and the postman :-))
Sometimes I want to try going out bald, but always chicken out
I'll let my friends see me bald before it ends because I want them to understand what it was like, I don't feel embarrassed or ashamed anymore it's a badge of honor but I feel it makes others more uncomfortable than me, that's why I wear my wig, to protect from the pity stares.
For me it's the eyes, with my wig and sunglasses, I look 'normal' but for me my eyes have cancer, no lashes and drawn on brows.... I now look ill and no make up changes that
I think we all deal with this very differently, I've always had lots of confidence in my appearance and taken pride in my hair and make up, I wonder what I'll be like when this is over x
Molliana
Member

Re: Starting Chemo April 2015

And breathe ...
I think I would hate for anyone to see my bald head and would be really cross if my friend did that. But your friend loves you and if you think she was trying to catch you then that may be so but I doubt she would have thought about the consequences and if she had known how it would make you feel then I am sure she would have cried for you.
I have lost all my confidence. I hate going out. I don't recognise me anymore. I find it better to only go out to secure places with friends who will protect me. I will get back to doing more adventurous socialising but right now I need to be in a safe bubble otherwise I would end up in the mess you find yourself in. It still makes me sad but nowhere near as sad as it would if I chucked myself into a difficult situation and it went wrong.
I suspect your Oh was trying to make you feel better by defending your friend. He doesn't want to see you so upset and by saying she meant know harm he is trying to calm your anger and tears not hers.
There is no way other people who are not close to you can understand what you are going through and you wouldn't wish them in a position where they find out. I could scream at people who say I look good, how strong I am and brave. If only they could see me when I am on my knees screaming with sobs. But if they want to think that about me then that's probably the better alternative. Big hugs xx
Egret
Member

Re: Starting Chemo April 2015

Hi ladies! I had a screaming angry fit directed at my husband and my girlfriend, in reaction to her walking in my bedroom unannounced as I was getting prepared for the day. I just had time to slam a turban on my head, lopsided, and I don't know what she saw of my poor head. I cannot stand my plucked chicken head with a few strands of hair, white at the root (which does not help). I felt hopeless. I see an old woman in the mirror. To be thus naked, feeling betrayed because she is my friend, and I felt that she wanted to catch me without my wig or my scarf, out of curiosity. My husband says "I understand" then he defended her, saying she did not intend harm.
I lashed out. Too angry to cry. The crying came hours later, behind my sun glasses. Because I am spending some time with my friend (we go way back) I met people I hardly know, or new people introduced to me. They don't know about my chemo. One man touched my headscarf and patted the top of my head. He then made comments. I felt my private space violated. Nothing like this had happened to me before. Someone else complimented me on my new hairdo, and started to ask questions. What could I do? I looked rude, walking away! Others just stared - or I thought they do - to try to find out whether I have a chemo head underneath. Why are people so morbidly curious? It hurts like hell, and the long weekend I was so much looking forwards, is turning into an enduring test. I don't know what to do. I am cast as a villain, because "it is all in my imagination", and I should not lash out when nobody meant harm! The pat on my head was real though, the entering into my bedroom unannounced was real, and once, as someone was kissing me goodby, I had to put one hand on my head to prevent my wig from falling off - the hug was energetic. I tried to explain to my friend, but I don't think she can understand. I was left distraught and feeling so lonely. Each incident hit me hard. Socialising has become a nightmare. Did anyone else experience this? Egret x
Egret
Member

Re: Starting Chemo April 2015

Sending positive thoughts, Egret
Jane1978
Member

Re: Starting Chemo April 2015

1981- I'm
Same my mouth is really sore with ulcers can barely swallow! The mouth wash doesn't do
Much ! Iv gargled with cocodamol this morn takes edge of a while!! And emotional Christ!!!! Was crying hugging shop assistant in frozen foods on wed!!!!!! I'm such a **bleep**!! I told
Radiographer they need more comfortable mri machines as these r vile putting marks on fave and body etc iv come home done shopping dropped pop on my already bad toe!!! Yuk yuk yuk yuk yuk !!!! 😡 and I'm hosting CRUK BBQ tom better tell ev one I'm vile xx