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July 2016 starters

Nellie55
Member

Re: July 2016 starters

Thank you Sue for that advice 😊. I have been drinking loads 4 pints a day ( of water I might add!!!) now down to 3 pints, plus teas and hot milks, it may be that? I found today I can drink my favourite squash cherry so have been having loads instead of plain water. The pain is there whether I walk, sit, lay down etc... I haven't taken my temperature as I've been on Paracetamol 4 hourly, but am due at 8.30 for some more so will check it then. This forum is so helpful, will keep you posted, thank you 😊 Xx

bevvers
Member

Re: July 2016 starters

Hi bella boo, thanks for the info on the picc line. Hopefully I'll adjust to it as well as you have and hope you're doing ok x

bevvers
Member

Re: July 2016 starters

Hi Taran, another welshie yippee! I'm from south wales too (kenfig hill, Nr Bridgend?) though I live in lincolnshire now. Where are you to then? Hope youre feeling better x

Bella boo
Member

Re: July 2016 starters

Hi all and Bevvers it's not just you, if you miss the thread for a day or so it's really hard to keep up with whose where 😀 I'm blaming the chemo. I had a friend visit yesterday and I thought it strange that she hadn't commented on how the chemo had gone till later on in the conversation it turns out she had visited me on day 5 and I have no recollection of it...and here's me thinking everything had been tickity boo. Well chemo is the gift that keeps giving and today it's thrush!! Quick trip to pharmacist and hopefully it'll be sorted soon. Bevvers I have a picc line and once the initial uncomfortableness with it is over I now don't notice it that much and carry on daily activities. You get a waterproof sleeve for showering. Only downside is the tubi grip to cover it. I only tend to put it on when I sleep and leave it loose the rest of the time to prevent any sores. Nellie I hope your feeling better soon. Unfortunately no weight loss for me, I haven't eaten so much in years though I am trying to keep it healthy but where oh where did this chocolate craving come from, I never used to like sweet stuff. Oncewild I hope it has gone ok today and your feeling ok. Hope everyone else is doing ok xx

Taran
Member

Re: July 2016 starters

Oh, and Bookworm it's very normal to feel washed out now. I definitely felt that way around day 4-7 and then would say things improved a lot quite quickly. Can't help with the temp though as mine has been fine whenever I've checked it.xx
Taran
Member

Re: July 2016 starters

Ah Bev, I didn't realise you were Welsh too!! Which part are you in? I'm from South Wales 😄

Oncewild, have been thinking of you and hoping everything has gone well today and you are feeling ok so far.

Nellie, I've been having lower back/pelvic pain the last 2 days, along with funny knees. Much better today than yesterday though thank goodness. I only had the one gcsf injection though, the day after chemo. Thinking it is just coinciding with the time my cell counts will be at their lowest and hoping it will continue to improve as they do over the next few days.

Madhatter, I'm sorry your chemo has had to be put back. But definitely better to get yourself sorted before starting. Fingers crossed those antibiotics do the trick for you quickly.

Hope everyone else is having a good Friday and has something to look forward to this weekend xx
bevvers
Member

Re: July 2016 starters

Ok so am I the only one that finds it hard to keep up with the thread? haha

Thank you for your comments, it's lovely (though awful at the same time) that we all have this forum to chat to people that understand. Following my oncology appt today I now have a plan, I am a girl that loves a plan! I am having my picc line put in on monday because I have 'difficult veins' anyone have any experience of this, I'm not great with needles but concerned about how this will affect my day to day activites too?  Though at the same time I am relieved that I won't have to go through the drama of them trying to find a vein on a regular basis!

Anyway my chemo starts next friday. 3 x EC at 3 week intervals and then 12x Paclitaxel at weekly intervals accompanied by Carboplatin at 3 week intervals. These are all random words to me just now but have lots of info to read through and digest over the weekend, lucky me! I have an appt next week with headstrong too in the hope they can help me decided between wig or no wig? Hope all of you are well, or at least smiling (or grimacing) through it all. Welsh cwtches sent to all that need them.

Bev x

Sue H-S
Community Champion

Re: July 2016 starters

Hi Nellie55

I am not surprised you are feeling low - May I suggest in the first instance to drink, drink, drink.......

It may be, just may be -  your kidneys - although it feels, as if it is your back. If you feel the pain getting better by drinking loads and I mean loads of water - not in sips - but a glass in one go - and feel more comfortable moving about rather than sitting - we may have found the reason.

I am, as you know not medically trained - but somehow the symptoms remind me of my kindney challenges I had - like you - when I thought I was already ok again. The deep pain - spreading into the pelvis - all sound familiar. Especially the E in the FEC can affect the kidneys....

Please ensure you take your temperature on an hourly basis, too - and if it jumps above 37 - phone your chemo helpline!

Hope this is some help...

Hug

Sue xxx

Nellie55
Member

Re: July 2016 starters

Rather disappointed this morning when I woke up after an uncomfortable night with low back pain/pelvic pain. Everyday since Day 2 I have got better and better, side effects gradually disappearing and feeling back to 'normal' and dare I say it ' on top of the world'! But not today, Day 10, the deep pain in my back and pelvis is only just under control with paracetamol, my spark seems to have slipped away today. It was my last day of GCSF injections and apart from a couple of shoulder pains no side effects until today. Food doesn't really interest me at the moment, I'm still eating small meals/snacks every 2 hours, not because I feel like them only to try and build me up. District nurse has suggested fortified foods, cheese, cream, quiches, eggs, rice puddings, full cream milk, butter etc..to add to my diet. Under normal circumstances that would be sheer heaven! I have high cholesterol and have been on low fat diet for a few years! I'm not depressed or emotional either just don't feel like my usual self. Weighed myself today and have lost 5lbs since starting chemo, in a way I should be secretly pleased, losing weight has always been a bit challenging, but I'm not. Any ideas anyone? Or is it just a blip? 

Nellie55
Member

Re: July 2016 starters

Madhatter67, Oh I'm so sorry for you, at least it sounds as if you are one the right antibiotics now. I had cellulitis after my ANC and at the same had an infection from my lumpectomy ( which decided to burst through the glue!). The doctor gave me Cetraben cream and ointment to put on skin and it worked a treat.  I thought I wouldn't ever get started on the chemo but antibiotics and 10 weeks later I started chemo. It does get you down but the way I looked at it was I needed to be in top form before being knocked back by the chemo - it is pretty strong stuff. Hang in there it will come right. Sending lots of positive hugs xx

Nellie55
Member

Re: July 2016 starters

Hi Once wild, just want to say am thinking of you, hope all goes ok. Xx

Nellie55
Member

Re: July 2016 starters

Glad you are doing well Taran, that is great that you will be on your 3rd week when you go with your boys on their school trip 😊. Look forward to hearing some jumbled sentences from you !! I managed to speak very coherently to our farmer this afternoon, even managed to get a joke out without messing it up! He has such a dry sense of humour and so quick to reply, I feel quite proud I got away without embarrassing myself! It won't last though! Xx

Sue H-S
Community Champion

Re: July 2016 starters

Hi madhatter67

so sorry to hear that your chemo has been put back. It might be better though - as with the challenges you have at the moment  -the chemo might just knock you over all together.

Your healing ought to be advanced enough - so that when the red and white blood cells, as well as the platelets, which make our wounds heal - drop rapidly because of the chemo - your health won't be endangered.

It is good to hear that the antibiotics may finally be doing the trick! You will heal - someone once said to me - Patience is a virtue........a virtue I usually do not have, lol.

                                  HOPE.jpg

Huge Hug

Sue xxx

 

 

Bookworm48
Member

Re: July 2016 starters

Bevvers, can totally relate to your fear of chemo as I went through this with my Mum too 9 years ago and swore I could never put myself through the same but the treatments certainly have improved and in the end I've accepted that if in my best interests to go for it despite the fear factor. Keep strong and good luck with the oncologist xxxx
Bookworm48
Member

Re: July 2016 starters

Good luck for today once wild. The anticipation is the worst by far. I'm now day 4, bit of a wobble last night as temp went up but didn't go over 38 so didn't need to call the unit. Today it's ok but feeling washed out which I guess is pretty par for the course at this stage? Last steroid today too. I guess it's see how I go time. Have any of you had high temps at any stage of cycles? Xxxx
madhatter67
Member

Re: July 2016 starters

Hello Ladies,  well my chemo has been put back a week, I have cellulitis under my arm which is not very pleasant - feeling rather low at the moment as I feel I have taken a step back.  Chemo is due to start next Thursday now, will wait to see how I am at that stage whether it gets done, or, put back a few days.  At the minute I feel pretty rubbish, so need to get back to full strength before starting on next journey!  Everyone is so supportive on this forum and it is a great place to 'air our feelings'.  We are all on journeys we did not plan for at all.  Have had my antibiotics changed as others were not making any difference.  I am now on two different types, think they have started to work as my skin is not as inflamed as it was.  Enough of me now, hope everyone else is doing ok.  Hugs to all you lovely ladies.

Sue H-S
Community Champion

Re: July 2016 starters

Good luck today OnceWild

bet you still are - really 😉

Hugs

Sue xxx 

Alex2016
Member

Re: July 2016 starters

Aw Oncewild, thank you for even thinking about me today when you have enough on your mind. Good luck and hugs for later. xx
OnceWild
Member

Re: July 2016 starters

Thanks to all the positive messages and tips on here I am feeling ready for my treatment today at 2pm. Doing a mad clean this morning, especially making the bedroom extra peaceful and pretty. I am having ECHP plus Pertuzumab. EC starts today for 3 cycles, then onto the rest - P weekly for 9 weeks with the H and Pertuzumab every 3 weeks. Funny how you 'look forward' to getting on with poisoning ones body - I think it is the relief at end of the waiting. Hugs to you Alex and MadHatter for the delays you are suffering- hope you get well very soon. 

Taran
Member

Re: July 2016 starters

Welcome Bevvers. Sorry you have to be here, but glad you have joined us. I think most of us on here so far have not suffered as badly as we anticipated. As Sue said, treatments have changed such a lot since your dad went through chemo. There is a real focus now on dealing with the side effects to minimise them as much as possible for every individual. Let us know how you get on with your appointment. Hopefully you will be reassured from it as I think the waiting for news and plans is the hardest part.

Nellie, your "food ordering service" made me laugh. I'm so glad it's not just me coming out with these things at the moment!! Sometimes it feels like I can't even string a sentence together. Other times the sentence is there but one of the words is complete rubbish so it still doesn't make sense. Quite funny at the moment but at some point I'll probably do it with someone who doesn't know and it will be slightly more embarrassing!!!

AngeNut How is the hair situation? I'm day 11 now and still waiting. Starting to get paranoid it will all start falling out when I'm on the boys' school trip next week!! 😂
Sue H-S
Community Champion

Re: July 2016 starters

Hi Bevvers,

Welcome to one of the threads no on e really wants to be on - but it is a great place to be. There is so much support, information and also many virtual arms, which will hug you when you really need them. It is a great place to share, rant, rave, and also laugh and share positive things.

I certainly can understand that you are feeling terrified, especially, as you saw your Dad go through chemo, which I am sorry to hear about.

My thoughts on this are that chemo treatments are different for specific cancers. So your chemo treatment may be very different to that of your fathers. Treatments have come a very long way, even in the past few years. Your journey through this might not be as awful, as you may think. chemo side effects are very individual to each of us, with some having hardly any and others a few more challenging side effects.

The first chemo treatment is sort of a fact finding mission, as the side effect you may experience at this point are the ones you are likely to experience throughout. HOWEVER - it is also a time, during which the treatment team adjusts the additional medications you personally need to keep the side effects to a minimum or a bay. 

It is great that you have been exploring on the right sites and not gone 'random'.

You certainly sound like someone, who is going to meet the challenges head on. And they may not be quite as bad as you anticipate, if at all.

I, for example, was diagnosed in January and am just past my 3rd chemo treatment, having another 2 or 3 to go, with radiotherapy to follow. I am still working! 

You may have already explored this link - if not you might find it of great interest

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

Also in preparation, if you go to this part of this thread - https://forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/July-2016-starters/td-p/102625... - there is a list of bits and pieces, which is great in preparation for when your treatment begins.

Good luck with your appointment today - let us know how you got on and if you wish - share your treatment plan with us.

We are all here to support you through this and some ladies, who are on a similar treatment regime as you - may be able to share their experience and thoughts with you.

Hugs

Sue xxx

bevvers
Member

Re: July 2016 starters

Hi all

I am going to see my oncologist tomorrow to find out when I start chemo and the plan for how much etc (I'm a girl who loves and needs a plan!) I was diagnosed in march and have had 3 breast conserving surgeries but nothing has terrified me more through the whole thing more than chemo. I saw my dad go through chemo 7 years ago and It was awful. I know it has to be done and I want it if it improves my chances but I am flippin terrified! I have read up on it lots (all the right sources no random googling) and I like to know the facts, no flowering up for me. I am prepared but so scared. Feels so good to be able to voice my opinion on here and not get the pity face that I get from some in my everyday life x

Bella boo
Member

Re: July 2016 starters

Hi all, glad to hear everyone seems to be on an even keel at the moment. Taran have you been having the injections? I had some side effects from my last one that included a sore lower back and wobbly legs but it has cleared up after 24 hours. I'm still on my mammouth clean and de cluttering of the house, it's very therapeutic.  Also means that I've created lots of space to fill over the coming months. Well they do say you should treat yourself 😀 Xx

Sue H-S
Community Champion

Re: July 2016 starters

Hi Nellie55,

 

Well, thank you - I am actually very happy, despite the current challenges, lol.

Sounds as if your hair follicles are starting to go 'to sleep' - so I would guess that it won't be long now before the first 'shedding'. Isn't it great, when the 'low' period comes to an end? So good to hear that you are feeling so well - long may it continue!

I still have a little hair, but not even worth talking about - some of my follicles seem to be quite tough blighters.....

Chemo brain - lol - sometimes words just fo 'missing' - but thankfully we are able to replace them with something at the time. Do you by any chance have your inner 'posh bird' comming out? Smiley LOL

Funnily - many do actualy not figure what is going on, when they see us in a scarf - most people do seem to think it is a style statement, rather than anything else. Certainly not complaining about that! Bring it on - all for style - me, lol.

Hugs

Sue xxx 

AngeNut
Member

Re: July 2016 starters

Haha! Glad you do 'small talk' Sue - that should keep us going on here! 😀
I have a wonderful Germsn friend who I've known for 40 odd years living in this she's had 7 beautiful children!

 

This morning a new corner suite and snuggle chair arrived! We needed one but this was bought with the money from cancelling our holiday with friends to Menorca. Must of had chemo brain before the chemo - it's cream and we have 6 grandchildren (no 7 on the way!) 😀

After lunch I nipped to IKEA (5 mins away) for some cushion covers.  It's mid afternoon and I've just come up to make the bed as was busy getting ready for new stuff this morning.

But instead I've got IN it! I've brought a coffee up and am having a tired (not fatigued) day today - think those cramps did it! ive just looked and seen 5 hairs - there were only 3 the other day! 😳

It's day 14 


@Sue H-S wrote:

Hi Bookworm48.

 

Yes, I am of German origin and have been here for a very long time. British citizen for a long time too - very assimilated, lol. My mother lives still in Germany and we now skype every couple of days - so it is keeping up my German - and it is a phrase she recently used for me - I found it so appropriate, although, sadly it does not translate into anything similar over here, lol.

As with so many things phrases - such as - the Germans do not have a word for 'small talk' - they actually do not know what it is - and certainly do not indulge in it either. Unlike me! Smiley Very Happy

 

Hugs

Sue xx



@Sue H-S wrote:

Hi Bookworm48.

 

Yes, I am of German origin and have been here for a very long time. British citizen for a long time too - very assimilated, lol. My mother lives still in Germany and we now skype every couple of days - so it is keeping up my German - and it is a phrase she recently used for me - I found it so appropriate, although, sadly it does not translate into anything similar over here, lol.

As with so many things phrases - such as - the Germans do not have a word for 'small talk' - they actually do not know what it is - and certainly do not indulge in it either. Unlike me! Smiley Very Happy

 

Hugs

Sue xx



@Sue H-S wrote:

Hi Bookworm48.

 

Yes, I am of German origin and have been here for a very long time. British citizen for a long time too - very assimilated, lol. My mother lives still in Germany and we now skype every couple of days - so it is keeping up my German - and it is a phrase she recently used for me - I found it so appropriate, although, sadly it does not translate into anything similar over here, lol.

As with so many things phrases - such as - the Germans do not have a word for 'small talk' - they actually do not know what it is - and certainly do not indulge in it either. Unlike me! Smiley Very Happy

 

Hugs

Sue xx





Nellie55
Member

Re: July 2016 starters

Oh Sue, what a happy positive picture of yourself, I like it 😊. Has all your hair gone now? Not too sure when mine will start dropping out, tingling and sore feeling in scalp above ears, this is day 9. Thanks for the details re fatigue, mine definitely started after steroids ended, day 5-6. I can't believe how well I have felt since Day 7.  But I will definitely be prepared for the cumulative effect. Thank you. What will I be like after 3rd cycle with chemo brain? Postman came this morning and as he handed me the letters, he commented on the widening of our driveway that is taking place - he said " that will make it easer to get your drive" I said " Yes it will, even the food ordering service will make it up!!!" What on earth was I saying? Why didn't I just say " Yes, Tesco will be able to drive up!" ..aargh - all will make sense when he sees me in me scarves lol!! Xx

Taran
Member

Re: July 2016 starters

Hi everyone, good to see we are all getting by ok with the side effects so far. Bookworm, I had the pink face too! Looked like I'd been sat in the sun for hours on end despite the fact it had rained for 2 days!! Has settled since stopping the steroids though thank goodness.

Sue, I love that quote too. Words can be so powerful at times like this.

I really feel like I'm almost normal again. Except today I have developed very strange weak knees and an achy lower back. Seems a bit random but hopefully like everything else it won't last too long!

Alex, I'm glad you're feeling ok about the wait to start chemo now. You'll be much better off starting it when you are infection free so will be worth the wait. I know it's awful when you get a date in your mind though because you are all psyched up for it!!

Hope everyone is enjoying Wimbledon today! xx
Sue H-S
Community Champion

Re: July 2016 starters

Hi Bookworm48.

 

Yes, I am of German origin and have been here for a very long time. British citizen for a long time too - very assimilated, lol. My mother lives still in Germany and we now skype every couple of days - so it is keeping up my German - and it is a phrase she recently used for me - I found it so appropriate, although, sadly it does not translate into anything similar over here, lol.

As with so many things phrases - such as - the Germans do not have a word for 'small talk' - they actually do not know what it is - and certainly do not indulge in it either. Unlike me! Smiley Very Happy

 

Hugs

Sue xx

Bookworm48
Member

Re: July 2016 starters

And Pookie, hello. Had exact same problem with weird sunburn numbed feeling under arm after ANC and fully endorse Taran's tips. It does improve. Still numb but not so sore and no longer have those odd shooting pains as the nerves do their thing which used to make me jump! Xxx
Bookworm48
Member

Re: July 2016 starters

So sorry should read Alex2016 and Sue!!! But hello Taran too! Xxxxx
Bookworm48
Member

Re: July 2016 starters

Thanks Taran and Sue for such uplifting posts. Love love love the German quote Sue!!! Are you German? Taran, I really hope your arm settles. I had a horrible time too with my ANC but that was done when I had my first lumpectomy so back in late April. It is so much better now. You will get there but I know it's tough. I worry about lymphedema. Will you be having radiotherapy after chemo? Mind you, that's a way ahead isn't it. I'm feeling ok today, the usual sicky, heady, day after party feeling!! I wish!! Take care all xxx
Alex2016
Member

Re: July 2016 starters

Bookworm, glad you have survived the first few days post chemo without too many horrible side effects that you couldn't deal with. Sorry I didn't join you on Tuesday for my first session. And at least the red face keeps the kids amused lol. Mine will be exactly the same when my time comes. Hopefully the next few days aren't too hard on you. x
Sue H-S
Community Champion

Re: July 2016 starters

Hi Bookworm48,

Love the image of a pink face, lol  - no make up required...

Wall to wall tennis seems to be for a lot of us at the moment and it is quite exciting at the moment! What are we to do after Sunday, lol.

Good to hear you are coping and that you are not losing your sense of humour - a helpful thing to have.

Yes, our challenged immune system could cause some issues. Personal hygiene is of utmost importance, avoiding crowds and not sitting close to anyone. Feels a little isolating and not nice, but for the sake of our health, unfortunately necessary. But I still go out, have lunch at the pub with friends, etc. I just avoid close contact. A hug or two - so very necessary! I just turn my head away and they understand. For me the 'danger' period seems to start on day 4 post treatment - as I notice specific side effects, which are likely due to the challenged immune system. So good to hear that you are having the Gcsf injections and that you are coping well with them. For me they are a just the boost I need, giving me the confidence to know that my system is 'rebuilding', as far as it can -  perhaps a little quicker.

Was also hoping to avoid the chemo and like you had to bite the 'bullet' - Knowing the treatment team and I are doing everything possible for me to have the best possible outcome gives me the strength to handle the low points, as and when they strike.

There is a saying in German - Unkraut vergeht nicht - which roughly translates to - It would take a great deal to finish off his/her/our sort. (coll.)

Hugs

Sue xxx

 

Bookworm48
Member

Re: July 2016 starters

Wrote a long post but didn't appear. Oh well.....still up at 5am care if steroids though I took them really early so just a wee hello post chemo EC day 3. Yesterday much better than the day before. Still Headt and sicky feeling but no vomiting (thank you Emend ) just wired from the steroids snd a super pink face. Watched wall to wall tennis yesterday- thank you Federer and Murray and all in all no where near as bad (yet) as I feared. First night not pleasant, lots of gagging and slept poorly and port is still pulling like mad but not half as painful. A bit paranoid about going out. Nice chemo nurse said be very careful days 7-10 especially as I'm on a 2 week cycle and won't have fun week 3 to enjoy:( I guess it's a case of avoiding crowds but not being a complete hermit?! Injection for boosting White cells no problem. So for all new starters keep the faith. I was anxious as hell and would have done anything to avoid chemo. I was so hoping my endopredict result would save the day and get me out of this club I didn't want to join but hey, at least I know that I'm chucking everything at it now! I'm sure I will bomb once steroids finish but for now, it could be worse and my pink face looks quite amusing to the kids!! 😊 Hope everyone is doing well. Love and hugs xxxx
Sue H-S
Community Champion

Re: July 2016 starters

Hi Nellie55,

Thank you for your thoughts - made of stern stuff - me, lol.

Fatigue will be different for all of us and last shorter or longer periods. It is likely to also be a cumulative effect over the various cycles, too.

With me it usually starts, a day after I stop taking the steroids and during the 'down' curve of the cycle.

Cycle one - I noticed it, but it was ok - and I was still 'practicing' and managed to work through it. Cycle two - it kicked in on day 4 post treatment and was a little challenging - whoozy and dizzy from time to time - up to day 6 post treatment - again managed to work through it. Cycle three - it set in day 4 post treatment, was at its worst on day 5 and improving day 6. I actually got taken out to lunch on day 6 and managed very well, apart from moving slowly and carefully, but at least I could 'control' my limbs better, lol - as well as my brain and what came out of my mouth Smiley Very Happy oh the pleasures of chemo brain!

                                                        060716.jpg

 

Will be back working full time on Monday.

Please do not be worried about this phase - it is likely to affect each and every one of us a little different. 

Being prepared for that you may be 'pole axed' once of the steroids after cycle 3 might be a good idea though - just in case.

Hugs

Sue xxx 

AngeNut
Member

Re: July 2016 starters

I had one day like your fatigue day - day 6 of 1st FEC - you described it perfectly - pole-axed from brain to toes and fit for nothing not even lying watching telly. It wasn't particularly pleasant either!

Anyone had thigh cramps - my poor little legs got it yesterday - my only real se this week!

Side effect of the 💉 apparently... 

Have a good night, everyone 

💤💤💤

Alex2016
Member

Re: July 2016 starters

Pookie, welcome to the Forum and the July thread. Sorry you find yourself here and I am sorry I am here too!I too have a PICC line in. Found the procedure totally painless. The white tubi grip they give you to cover however, does make me feel like a patient! Bellaboo if you find where you can get any nice ones, let me know. However, as I haven't had chemo yet, can't comment on its effectiveness there. When Nurse was changing the dressing on Monday, I needed bloods done, so she was able to insert needle into PICC instead of arm. Hardly know it is there. The odd time, I feel a wee niggle. And like Bellaboo I nearly forgot shower cover for it today. Only thing is, as my chemo is now delayed, I have it in a wee bit too early, but sure no one was to know that. And as for hospital appointments, I'm there that often, I was going to ask them for my own car park space lol x
Alex2016
Member

Re: July 2016 starters

Mad hatter, yes do post what happens tomorrow. I have now settled myself that chemo isn't happening for 2 weeks. Have been very despondent about my wound, infection, seroma, pain etc Took myself away from forum, as sometimes I think it becomes all consuming. You just get fed up as feel you take 1 step forward and 2 back. It's very hard not to get down about it. But whoever said this would be easy. I'm doing good today and going to do a wee bit of socialising ( only lunch or coffee, no alcohol involved lol) to cheer me up and get my spark back again. In between my checkups and exercises of course. Good luck for tomorrow. X
madhatter67
Member

Re: July 2016 starters

Hi Alex - I too have an infection under my arm, had more fluid drained off last Friday and boy did it hurt!! Was given antibiotics - had to return to hospital today as it no better and I was very red and sore under arm.  Had ultrasound but would not drain fluid off as not always the answer and was told that if they tried to do so I would probably hit ceiling!!!!  Antibiotics changed, now taking two different ones, am due to start my chemo tomorrow, but Consultant said it wouldnt start as I need to get infection cleared up first!  Been really down this week with infection, cant focus on any treatment, but will find out tomorrow.  I am 7 weeks post surgery, which was successful, and I was doing so well!!! It really helps seeing how others are doing and when I read your post I didnt feel so alone! Hope you get started your treatment soon, will post tomorrow outcome of hospital app.

Pookie1
Member

Re: July 2016 starters

Hi Nellie, nice to meet you : )
Glad your first round wasn't as horrible as you feared. You're right these threads have been an invaluable source of info and encouragement. It's quite a lonely path initially and then you realise there are others and suddenly it seems more bearable and just a bit more 'normal'.

I'll be thinking of you too on the 20th. I hope your second round is as positive as your first.

P x

Nellie55
Member

Re: July 2016 starters

Oh Sue, poor you fancy having to go through no electricity on top of your 3rd cycle. I think you are amazing going back to work as well.  I'm pleased you are able to see a pattern that emerges as I will bear that in mind for my 2nd cycle. How long does the fatigue last? Is it the whole cycle or just the first 2 weeks? Hope you gain some strength soon and thanks for the tip about getting prepared with meals. Xx

Nellie55
Member

Re: July 2016 starters

Hi Pookie1 welcome to the forum. It is a great place to pick up useful tips and just to express how you feel at different times during treatment, also it's encouraging to read how everyone just gets on with it, well I suppose we can't do much else!  Once you start the ball rolling it is amazing how all the departments and appointments seem to just flow one into another. That must have been a real boost to hear that compliment on your chest area 😀.  I'm in my 2nd week of 1st cycle of FEC-T and I feel so much better than I thought I would, after a rough 48hrs at the beginning I have just improved each day. I start my 2nd cycle on the 20th, so will be thinking of you. Hope the PICC goes well xx

Pookie1
Member

Re: July 2016 starters

Evening everyone,

 

Thanks again for the lovely welcomes. And thank you Bella Boo for the insight into the PICC line. How funny that you're so unbothered by it that you almost forgot it was there : )) I was a bit aprehensive about it as I have never come accross it before.......but, to be honest, I've never come across most of the things I'm having to deal with at the moment! I have a wig appointment on Monday, a pre chemotherapy assesment on Wednesday, consent meeting the following Monday, PICC insertion on Tuesday and then the main event on the Wed 20th. I'm thinking maybe I should just camp outside the hospital, oh, and the kids break up for the holidays tomorrow....

 

On a positive note I had an echocardiogram today to check that my heart will be ok for chemotherapy and the lovely man who did it for me was amazed by the neatness of my scar, he couldn't believe it had only been 3 weeks since surgery.  It's the first time anyone has ever complimented me on my chest area ; )) 

 

I hope everyone is keeping as well as possible.

 

Px

 

Sue H-S
Community Champion

Re: July 2016 starters

Hi OnceWild,

Do not worry too much about cumulative effect of some side effects. They will be different for each and everyone of us, depending on our physical fitness and much else.

I was not feeling grim - just completely helpless - like Tim Peake floating in space....

Yes, I felt far more vulnerable, than I did ever before - but somehow - reflecting today - it is actually a very interesting process to go through. Letting go - of all we usually have to hold on to - and trust - that all will be fine.

And guess what - it was - sort of even - liberating - I know it sounds weird, but there it is...

Hugs

Sue

xxx

OnceWild
Member

Re: July 2016 starters

Wow Sue - really awful to be cut off when feeling grim! The cumulative effect worries me so much. I am rubbish at feeling ill. Guess this will harden me up. You are amazing to still be working. I just said I would be off for six months and luckily my boss was able to get someone in to cover. Sometimes think the positivity of work would be great but the in/off aspect would have been hard for me and colleagues. So impressed that you are working. 

Sue H-S
Community Champion

Re: July 2016 starters

Hi all,

yes, I am still here, lol,

Welcome to all of the new ladies to this thread, such as Pookie1.

Hazel, thank you for your thoughts - I am just so glad to read that your treatment team made it easier for you to deal with all of this and gave you the appropriate attention. 

Great to hear that most of you seem to cope reasonably well with all of the various side effects, which can hit us.

Side effects are so very individual! Following my own pattern (now just post 3rd FEC) my experience is that the first cycle is a 'fact finding' mission - i.e. what side effects do we get and how can meds be adjusted to avoid them in the following cycles. It does seem to hold true, that as long as you are on the same treatment, no new side effects should appear. Some may become cumulative, such as fatigue and immune system.

Generally when going through my cycle - Treatment day and 2/3 days post treatment seem fine - then day 4 to 6  a bit challenging, as immune system really does go down hill and fatigue sets in - improving as of day 6 onwards right up to next treatment. It is likely to be individual for each of us, as to which day it is - but may give you a rough idea what to expect.

I have now experienced the truly accumulative effect of fatigue after my 3rd cycle of FEC. It might be different for each of you, especially as some of you are on different types of treatments.

It may really pay off, when approaching the half way stage of treatment -  to spend the days before 3rd cycle preparing food and get all necessary tasks out of the way, so you can simply just veg out, once the steroids wear off after treatment. 

Feeling tired is one thing, but cumulating fatigue really is more of a challenge, than I anticipated. there is no way of describing it, especially for someone, like me, who always finds a way to manage things and is very independant. It literally pole axed me yesterday, my legs were no longer mine, my brain could think - but in a very strange way, my mouth had real problems formulating words or expressing anything, which made any logical sense. Total wipe out - total helplessness - total frustration. And the electricity went in most of the house - no phone, no internet, no mobile network, no TV - bliss really, but not when hit with total fatigue, lol! I live in rented converted servants quarters in a large country house with no seperate electricity circuit - so these things do sometimes happen and I have no way of fixing things.

It felt very lonely and scary - but after a little sleep, my brain finally jumped back into action and remembered that I had a number of extension leads, which I could use on the few  'live' sockets to re-establish outside communication.   

Today I am so much better - some of my energy is coming back - and now it is onwards and upwards again and so looking forward to getting back to work next week!

Huge hugs to all

Sue xxx

haz25a
Member

Re: July 2016 starters

Hi Alex

Probably best to get your post op infection sorted before chemo although I know it must be frustrating for you. x
haz25a
Member

Re: July 2016 starters

Thanks Angenut,

I use a hug as I would use a "like" on Facebook. x
AngeNut
Member

Re: July 2016 starters

(((Hugs))) everyone! 

I've been glancing through - really do wish I could just 'like' etc instead of having to comment! 

I've given out a few hugs. 💕

Well, 12 days of FEC #1 - and I must say this week I just feel 'normal' and friends and family say I'm looking good. Had another hair trim today, from a trusty friend .

Ive had a strange sensation around my head - like it's being hugged and I've started looking for hairs on the pillow - 3 so far! 🙄

Good luck those ready to start - and hope the SEs ease for those already on that conveyor .... 

 

AngeNut
Member

Re: July 2016 starters

Glad it went much better than anticipated, Hazel! X