December 2016 Starters

[Evie-S]

Thanks Rooner - it's good to know which are likely to be the worst days and then prepare for sofa days and bad films. I found days 4 and 5 hardest on T - but not sure if that was withdrawal symptoms from the steroids, the chemo or the bone marrow injections. I hope T will be kind to you like FEC was. xx

[Rooner999]

Thanks all. Evie - I have to say my experience of FEC does seem to have been different from many where I have had all the symptoms but in moderation. I haven't been bed ridden or tired and have pretty much gone about my usual routine apart from days 5/6 when o just lay around just feeling low. Mouth ulcers have been my main physical symptom and even that wasn't too bad. I am sooooo hoping some hair starts to come back during T (as I've read on some of the forums) that would be good 😊

[Evie-S]

Rooner/Snail - sending you both bug hugs. This "thing" is so hard mentally. I am willing to bet we all have bad days, I know I have said very similar things to OH. In my clumsy way I'm trying to tell you that you are not alone and I think it helps to share with groups like this or, as Rooner suggested, a psychologist. (Aggh, this chemo fog makes impossible to say what I want to properly). I had a very low patch at the weekend but felt better for reading all your posts - that really helped me but it's different for everyone.

Rooner - you are dreading T. I feel the same way about FEC, which I start in 2 weeks. It's fear of the unknown. We will all get each other through this.

Snail - nice positive thought to end on. 

Big hugs to everyone on this thread. xx

[Snail888]

Rooner sorry to hear you feel so low but also taking comfort that it's not just me. Told oh my life is over today feeling very low. Just miserable. And guest what as if on cue period started so I guess hormones are involved. The oddest thing is that I have never had regular periods in fact as few as 2 or 3 a year until Feb 2016 since then they are clock work. I'm wondering if this is why a lump grew or if the lump was the cause. Thin I need to push onc for an endocrinology appointment as I don't want all this chemo to be wasted and frankly I can do without them. Chin up we gained an extra 5 minutes of daylight today xx

[Rooner999]

I'm feel the same as you running girl; wore the wig to the cinema on Saturday (much needed date night) and I was so hot and itchy. I'm preferring going commando; just been out for lunch to harvester with OH and just went bald. I seem to feel better bald than in a wig.

I think I've been more emotionally hit this cycle as opposed to physical. Going to try and get an appointment with the clinical psycologist as can't stand this low/blubbing/lack of confidence feeling. If someone had offered me an end it all tablet last week I would have taken it!! And seriously dreading T next week; another unknown!

[Running girl 53]

Perservering with my wig as everyone says you can't tell its a wig. I always put it on without looking in the mirror because when I do look it almost fools me. However towards the end of the day it feels tight over my forehead and moves when i scratch an itch. It feels like i'm wearing a grenadier guard's bearskin hat! Feels like i'm in fancy dress! Can't bloody wait to have my own hair again!!!!

[Evie-S]

Fiddlercrab - ha ha, speaking personally I have to write notes before replying to more than one post or I forget everything I intended to write. I have heard there is "chemo brain". I definitely have it. Thanks for the Moogoo tip, I'll look into that.

WMJ - all the best for the port fitting. My tips - get lots of sedative for the operation and you won't know anything about it. Best to wear a shirt and cardigan on the day of the op rather than anything you have to put over your head and lift your arms. You may be different but I had trouble lifting my arm for a few days after, so shirts were easier. And also ask the nurses for  a local anaesthetic cream to numb the area before the first time they use it. The cream I have been given is called EMLA and I have to put it on about an hour before they need to access the port. Most of all, remember that I am a big wimp and you are far tougher than I am.

xx

[fiddlercrab]

Cookie - sorry to hear about the burn, that sounds really nasty and I hope it heals up soon

Jacquie - I get eczema on my hands too. Mine is triggered mostly by detergents/cleaning products. I use HC45 when it flares up and it clears up in no time. Also dreading the massive steroid dose

How do people remember all the people they want to reply to in one post?! Argh!

[fiddlercrab]

Jojo, that'ss brilliant (and so is yours, Agarside). I have found lots of hats I like on Etsy, but struggling to choose and slightly concerned about Etsy-finger-slippage... Still not got round to sorting out a wig!

Someone (might have been here, might have been elsewhere on the site or on Macmillan) recommended moogoo products as they are free from things like parabens and do an aluminium free deodorant. I've just signed up for their newsletters, and they sent me a 15% off discount code. I've ordered an 'oncology care pack' to try them out.

[WMJ]

Sorry Cookiepuss, I forgot to add your name. Hope your arms improves quicker than you think it will. Take care & be kind to yourself. X

[WMJ]

Glad your out of the fog Evie-S.
Also very sorry to hear about the burn issues you have had. I agree with Evie, I can cry at the drop of a hat. Our emotions are certainly all over the place.
I am having my port fitted on Tuesday, not sure if it will be ready for the chemo on Thursday though, they say yes, but it will be me having it. Just have to wait and see how it is. X

[Evie-S]

Hi Everyone

I am just emerging from the fog of days 4 and 5 post chemo (T). I think they are caused by withdrawal from the steroids. I hope I won't get the crash after FEC - or will I?? Am I right that you don't get so many steroids. A friend sent me Bad Moms - that's about all I could manage watch do on Tuesday!

Fab to see Agarside's and JoJo's new hair, you look great.

Cookie - sorry to hear about the burn issues. Not surprised you had a meltdown. My emotions run so close to the surface, it doesn't take much to make me cry - good and bad news.

Jacquie48 - I do suffer from eczema on my hands. I was told that T chemo could actually help improve it. Touch wood it hasn't been too bad through 3 cycles, though I cover my hands with cream at any possible time. I like Vaseline advanced repair (comes in huge bottle) and nurse recommended Neutrogena. All the best for the T cycles - let me know if you have any questions I could help answer.

Evie xx

[Snail888]

Hi agarside love the hair. My understanding of tamoxifen is that it blocks estrogen receptor on breast cells and not necessary osteocytes. I requested ovary removal but was told that would severely affect my bones and that tamoxifen was a much better option. In post menopausal women they tend not to give tamoxifen now but a aromatase inhibitor that stops the secondary production of oestrogen effectively so the body has almost 0 oestrogen. It will be interesting to see what alternatives your doctor comes up with.

[WMJ]

Amanda you look great, I wouldn't know it was 'new' hair. Sorry you are still struggling with that cold. INteresting chat you had. I do my own research on everything too.  I find the more specialised people become the less they know! Well about areas outside their apecialism. I much prefer someone to say I don't know about that than blag, unfortunately many people in all walks of life take the latter route. HOpe your bloods are okay and everything goes ahead as scheduled.

Have a good day. XX

[Agarside]

Hi All,

I had a telephone consulation today...  Not sure how I felt about it, but guess it saves money somewhere!

We spoke about the past two cycles, I find my nurse a little patronising (imo) as I have only actually thrown up once after last cycle because I believe I strayed from the fasting, but she said it was I have refused the Dex... I said surely it would have lasted much longer??  After an extra ondasetron i was fine, or fine as can be expected and back to the "hang over" symptoms.   I asked about pro biotics, and she didnt seem concerned at all and happy for me to take again.  We are in discussions about Tomaxofen, as for post men women it increases bone mineral density, but in pre men, it reduces and quite a lot.  Last chat with oncology team, they said my research wasn't correct.... but there is loads of research backing this up.  The problem is I have severe reduced bone density in two of my vertebrea, which could cause major problems for the future... Gp is trying to find an alternative for me.  Oncology team just not understanding potential problem..grrrr

Tiredness is a problem for me as well, nurse has said it is because of chemo FEC,I was more thinking it was to do with excessive blood loss last cycle and it effected me a lot, but nurse says not, and it is the FEC...  Will see what bloods hold next week.  

Anyways.... Apart from my endless cold... have new hair!!

Amanda

x

[Jacquie48]

Hi all,
Snail, after 3rd FEC I am much more breathless than after the first two, so much so that I'll mention it tomorrow when I go to have blood taken ready for Friday. I also still have indigestion, and my whole gullet feels inflamed.
WMJ I hope you can get sorted.
JoJo great pic!
Cookiepuss I really feel for you. I'm so glad to have my Picc line even though showering is a bit of a nuisance as well as the weekly dressing change and flush. I hope it starts improving.

Has anyone else had eczema? My left hand has little lumps all over it and it is so itchy. Been using cream but it hasn't touched it. I'm concerned because of starting T on Friday, believe T can cause peeling hands and feet. I am nervous I must admit. Got to get two lots of those flipping tiny bitter steroids down tomorrow in preparation.

Good wishes and love to all of you xx

[Running girl 53]

Love the wig jojo45! X

[Running girl 53]

Hi Cookie puss. Sorry to hear how you've been feeling. It really is crap all of this. Do hope you are feeling brighter now. Keep your chin up. Xx

[Cookiepuss]

Evening everyone - not posted for a few days as had a bit of a meltdown on Sunday.  The chemo burn on my arm got worse and was really horrible plus I made the mistake of Googling extravasation and scared myself silly; I think it was the straw that broke the camels back after trying to be so positive over the last few months.  Anyway, once I started crying I just couldn't stop.

Phoned chemo unit on Monday, sent them some photos and got referred the same afternoon to a plastic surgeon.  She was lovely and assured me that whilst it did look terrible and would get worse before it got better, it would heal with only a very small scar but it would take several weeks before any improvement.  In the meantime, I got prescribed two weeks of antibiotics as a precaution. 

Then I was back again yesterday for my 3 month ECG/echocardiogram check up and tomorrow I have my pre-chemo check with the oncologist before Cycle 4 next Thursday, so it feels like I have been living at the hospital this week.

Hope everyone else is having a better week.

Love the wig by the way!

XX

[Snail888]

Love it!

[JoJo45]

Wore this today to brighten up the chemo unit, certainly brought a smile to everyone 😊

[Snail888]

My post round 4 seems really tiring. Round 5 next week. Anyone else just on fec? I'm getting quite breathless at the moment but red cells are OK so I'm not sure why xx

[Running girl 53]

Hi WMJ,
Hope you get your port fitted soon. Sorry you have felt low. I think this middle phase is dragging a bit. I've had an upset tum too but i think mine was caused by lansoprazole which i was given for heartburn, i'be stopped taking it now and it's clearing up. Just feel really tired in the evening. Been in work all week and feel well, next chemo 10th Feb and having hickman line fitted on 8th. Trying not to think about it at moment though. Just hope i dont feel as poorly with the docetaxel. Hope everyone else is doing ok. Xx

[WMJ]

It's all really quiet at the moment, hoping everyone is doing okay.

Looks as though I am going to be changing to Paclitaxel rather than Docetaxel, from cycle 4. Still waiting to find out when I will be able to have my port fitted. It is getting nearer to my next treatment so doubtful it will be done before then.  I feel cycle 3 has dragged, probably because I feel as though I lost about 10 days due to recovering from the adverse side effects of the steroids & or GSCF and then an upset stomach. I Haven't been sleeping too well, which can make the days feel longer.  Plus the awful weather, it has been wet, dark and gloomy for days here.  Anyhow moving into the final week and hopefully things will improve and a chance to escape from the 4 walls! YIppee 🙂

Have a good day and keep well. X

[Evie-S]

All the best to you if/when you do have one fitted. And I also meant to say how lovely it is that you have your son's wedding to look forward to in July. Do keep us posted won't you. xx

[WMJ]

Thanks for that Evie-s, very informative. Not sure when I am likely to have it done as yet, however getting ever nearer my next treatment! X

[Snail888]

That's great she does need something and isn't keep on lines near her heart x

[Evie-S]

Hi Snail - they try to site the port to suit you/hide it as much as possible. Mine is above my left boob, sort of in line with my arm pit. Yes it does stick out a little but it is hidden by my clothes. Best to discuss with the surgeon, to avoid bra straps, seat belts etc to get the best place for your Mum. My bra strap misses the port but the seat belt covers it, but I guess it has to go somewhere. I believe they can put the port in the arm, but I didn't discuss this option - think I forgot about it. Hope that helps a bit. xx

[Snail888]

My mum is very thin and need regular I've antibiotics. They have said her option would be a Hickman but I've told her to ask for a port. She is worried that it would stick out a lot. How does it look?

[Evie-S]

Hi WMJ. I'm with you on too many decisions to be able to deal with, so I will try to give you some info on the port to help you.

My veins really weren't coping with the chemo and I was strongly advised that a port would help. I spoke to a number of people before I had it done and everyone was very positive about having a port. It means the nurses take all blood samples from it and also put the chemo in, so veins are left alone. I had a local anaesthetic plus sedative - ask for lots of sedative and you won't remember anything about the op (the last thing I remember is asking where I could buy the sedative!!). 

It is an operation so yes it was sore for a few days afterwards - I was told to take painkillers to help. It was also sore the first time they used the port on Friday - but apparently the first time is the hardest and because it was only just over a week since the port had been fitted so I still had some bruising. I have been given a cream to numb the area next time - I am a big wimp when it comes to anything medical and am squeamish too. So I am willing to bet that you are far braver than I am as most people are!!

I wish I hadn't had to have an extra procedure but then again I didn't really have an option with the way my veins were going, so I guess I am glad I have had the port fitted. Bloods were taken so quickly this time.

Take care and please ask anything else. Hope you have found time to rest too. xx

[WMJ]

Thanks Evie-S, I probably will have to have a port fitted, if I ever manage to get it organised, as looks as though I may be changing to weekly treatments. Feels like too many decisions to make at the moment. No way that will work with a cannula, if I have treatment each week, as only one arm can be used.

Is it painful afterwards? I will be having a local and ask for a sedative,  as one person told me it is a bit of messing about getting it in. That is in my head now!

Are you generally happy to have had it done?

Hope you start to feel brighter today. In the meantime enjoy the dvds..... I am doing a few jobs today but ensuring I take rests between, so pacing myself, dvds for me too in-between jobs. 

Take care. X

[Evie-S]

Morning Everyone

Thank you for all your kind wishes. I had my third T chemo on Friday, currently feeling in that foggy/shattered/emotional place (so please excuse any mad ramblings). It was wonderful to come back onto this thread and to read so many uplifiting and inspirational posts - about holidays being booked, bathrooms being painted (Agarside) and Cookie's busy weekend, recommendations for box sets and all kinds of other tips. I am so glad to have found you all on here - you are such a positive group. It's been so helpful to share info about drugs and treatment.

Rooner - so pleased to read about your wedding, so lovely to have that to focus on. Whatever length your hair is you will be beautiful - people say that hair can come back far better than the original.

WMJ - sorry you are having issues with the drugs and veins. Hope you get an answer today. I had a port fitted about 10 days ago - happy to answer any questions if I can help.

Sorry to hear that veins are so painful for so many of you and Cookie hope the burn goes quickly.

Jacquie48 - sorry to hear you ended up in A&E but hope you are feeling better now. I hope I can reassure you that you shoudn't feel so sick on T. I am dreading FEC and the nausea, but thanks to the advice from you all on here the nurses have made a note that I will need strong anti nausea. Apparently if you are car sick or had morning sickness you are more likely to feel sick with FEC. So thanks everyone for all that advice.

Running girl - I am impressed that you are keeping up your running as all I seem to be able to manage is a walk these days. Would be interested to hear what others are doing for exercise? A walk definitely helps but maybe I could do more..... 

One tip to share from Friday about nail varnish and nails lifting. I was advised by my nurse to use clear nail varnish so that you can see if you get a nail infection. Bizarre how the advice varies from hospital to hospital and nurse to nurse as I think another nurse suggested dark varnish, as has been discussed on this thread. I was told to use the nail varnish even if my nails are ok at the moment as the drugs creep under the beds and can lift the nails to various degrees - or hopefully not at all. 

Just going to go back to my sofa and find a suitably junk DVD to watch! 

Love to all, Evie xx

[Cookiepuss]

I definitely find some warmth on my arm helps with the pain and stiffness. 

The chemo burn on my wrist looks horrible - it's about the size of a 2p coin and is quite red with a scabby bit in the middle that looks like a crater.  The cream I have to apply for that is quite stinky too.

Agarside - I'm impressed you tackled some decorating which is well beyond the call of duty.  No wonder you crashed out after it.

So far this weekend I have had a good springclean, made a cake, vacced the car, tackled a pile of ironing, went for a 30 minute walk, done my online food shop for next week and am just looking at one of my exercise DVD's debating whether to give it a go. 

Right here goes - will see how I get on!  If I'm not back on this thread in a couple of days I may need supplies of cake or chocolate to revive me.

[Agarside]

I was feeling so much better yesterday, so with the motivation I painted the bathroom (I will have a b4 and after pic shortly)! By teatime I was getting exhausted but battled on... big mistake, body decided to crash, a raised temp (not abnormal) with shivers and the feeling of nausea.  Off to bed I went, with electric blanket on and after two hours felt better!  

It just shows that this regime does completely alter our bodies and we simply can not do what we used to, even on the good days.I still have the cold, blocked ears and sinuses so this is not helping at all. So now instead of going out shopping for bathroom furniture - I am on Ebay and online shopping 🙂

Meat out of the freezer for Sunday Dinner tonight...

Have a great day everyone.

Amanda

xx

[Running girl 53]

Hi all. Hope everyone doing ok today. Sore veins like everyone else but keep using heat pack which helps. Still feeling jaded which by now i'm usually quite a bit better. Managed a little run this morning but very very slow. So good to be in the fresh air though. Hubby came with me which i was glad of as i couldn't keep up with the club today at all. 1hour to do what would normally take 30 min but at least i'm out there. Keep reading about how its good to keep excercising if possible as it helps with recovery so got to keep having a go. Planning to take a walk in lunch hour this week as not so easy to keep it up during week. Haveca good Sunday all. Xx

[WMJ]

Hope you don' t catch their cold fiddlercrab.

Argarside hope you are feeling better today.

Hope You are doing okay after your chemo Evie-S?

How are you LennyGK?

Wedding plans & cruise sound great Rooner, I have our sons wedding to look forward and aim for in July.

Sorry to hear about all the vein issues lots of you are having. Mine are only a little tender but looks as though I may have to have a line or something fitted due to the difficulties they had getting the cannula in last time. I have to ring them Monday to discuss further/book in. 

ONC has suggested they change my chemo (it begins with P) as I am having such a bad reaction to either the gcsf or possibly the steroids. The Loratadine wasn't any help unfortunately. If I change to P  though I have to have it each week, unsure about that, I would definitely need a port or line fitted then. I am thinking about keeping with the D this time, as it is a change of chemo anyway and seeing how it goes. However getting slightly concerned as if it is the steroids I have a reaction to, I will be having even more of them this time around and the skin soreness was really bad this time and lasted longer.  It is just too difficult making all these decisions when you are going through this. Plus had a little red streak earlier,  so now thinking I may be starting a period!!! 

Going to watch Taboo tonight, we are enjoying that.

xxx

[fiddlercrab]

It was £7-something for the tube, so better (for you!) on prescription, but it didn't seem to be a problem.

Both the small and big person have colds today, just when I have no immune system. Joy. Keeping a close watch on my temperature and crossing my fingers.

[Cookiepuss]

Blimey I was told I couldn't have it without prescription!  Well it worked for me and I am following Evie's advice and putting a hot water bottle on my arm a couple of times a day and don't forget to regularly move your arm around/stretch it etc as that helps too. 

Ha ha yes it smells disgusting doesn't it?  The cat takes one sniff, turns her nose up, twitches her ears and runs off.

[fiddlercrab]

Got some cream. Wandered into the pharmacy and said "my oncologist recommended...". Not a single question asked! I hope he was wrong and it really does work, fed up of not being able to reach up for things or straighten my arm without it hurting. Doesn't smell great, mind.

[Agarside]

The Walking Dead and Game of Thrones are a MUST!!

Prison Break however left me traumatised for days.... thank goodness there is an extra series coming back!!

I am struggling tonight with "cold" like symptoms, completely blocked sinuss and ears, keeping an eye on temp.  Dont feel ill, just fed up!!

A

xx

[fiddlercrab]

Smashing! Thanks SALowery 🙂

Snail: It's hirudoid cream

[Snail888]

Is this the vein cream? What's it called. My arm is really hurting x

[SALowery]

Fiddlercrab you can buy over the counter I bought some tonight xxx

[fiddlercrab]

Cookiepuss - I'm going to send the other half to a pharmacy tomorrow to ask about the cream, if I need a prescription I'll ring the out of hours GP and see what happens.

[WMJ]

We have just watched an episode of Game of Thrones, love it and Walking Dead, Homeland. Also watched lost and thought it was good and Breaking Bad was excellent.
However do absolutely adore Pride & Prejudice, whole series in one day, Colin Firth series. Happy viewing!

[SALowery]

Cookiepuss

The Walking Dead is a must!!!!!

[Cookiepuss]

I only have the one GCSF injection - day after chemo and it's about a week later that I feel achey but I can usually get by with a couple of painkillers and a soak in the bath.

Love Dexter and Breaking Bad.  I can definitely recommend Game of Thrones.  Took me a couple of episodes to get into it but once I did I was hooked!  I'm enjoying the Borgias too.  I obviously have a bloodthirsty streak!

Is the Walking Dead worth watching?  I watched a couple of episodes but sort of lost interest when I saw how many seasons there are.

Fiddlercrab the Hirudoid cream definitely worked for me and I was struggling to straighten my arm.  I think you can only get it on prescription.  I finished the first tube I was given and my arm stiffened up again - I ended up having a telephone consultation with my GP just this week who prescribed another tube for me and I am now applying twice a day.

[SALowery]

Hey ladies well does look like we are all feeling a lot better, I know I certainly am...

Been to lunch at a friend's today was so lovely to catch up with her and she loved my scarf and bald head... I'm really struggling wearing my wig as it feels so false and I feel like a drag queen!!! So that was a waste if money...

Things to watch I've been catching up on Homeland and am now on series 4 otherwise The Affair is really good, Fortitude, The Killing are all good series to catch up on...

We have also booked to go away to our house in Spain for 3 weeks in July and hubby has booked a holiday of a life time in October - Maldives I can't wait to get back and feel normal again (what ever that was)

I've lost most of my lashes this week too and the indigestion is still bad but I did ring the doctors to see if they could prescribe something, still waiting for them to get back to me!!!!!

My best friend gets married in May and I was at 1st devastated about not having any hair but actually as long as I'm there who cares!!!!

Looking into the insurance thing too...

Also ladies I'm not sure if you are aware but you should look at your life insurance policies or any critical illness covers and see if you are covered for anything I was and they paid out... now I would rather not have to go through this at all but a friend of mine said to enquire and to be honest didn't seem the right thing to do at the time but if you have it worth a look, never in a million years thought we would have been covered....

I'm going fully prepared with my veins next time time, gloves and hot water bottle before T to fully warm them up!!!!!

Well have a good weekend and hope everyone's comfortable

Sara xxx

[Snail888]

Some things I've been watching
Greys anatomy
Dr Blake mysteries
Breaking bad
Better call Saul
Dexter
Parks and recreation - very funny
Fraser- set the channel 4 episodes to record each morning. Forgot how funny it was
Someone recommended sneaky Pete on Netflix and Luther but if they take too much concentration I can't be bothered.
I love gold rush and gold divers as small obsession of mine and maybe a future job?!
Man down is a very twisted English comedy based around a school teacher which is very funny
and if you can find it one of the best is the green wing again dark British comedy set in a hospital.
Another one that was compelling was Eddie izzard in the riches. Not sure where to find it unless you buy dvd cheap x