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July 2016 starters

FluffyMittens26
Member

Re: July 2016 starters

Hi all,

 

I'm new to this bit of the forum.  I started my first Chemo (EC) on Weds 13th.  Apart from the anxiety, sweats and sore throat I am not doing too bad although the fuzzy head is a constant.  I know it is only early on in the cycle.  Is anyone else having Chemo prior to their operation?  They have told me it is very successful for younger women in their thirties at shrinking the cancer.  Also, I'm not enjoying the white blood cell jabs I am having to administer, the bone pain is horrible but doesn't last 24 hours.  Anyone else have these?

Thanks,

T
Member

Re: July 2016 starters

Morning lovely ladies x

Audrey your post was very welcome and I am so pleased for you - fantastic news x

Thinking of you today Bev, you will be fine as the posts on here will really help with most things you will feel, emotionally and physically - Are you having FEC-T?

Well done nelle - you made me cry not sure why X

Hope those of you sufffering from nausea etc...have managed to find somethning to help x

I am on day 8 now after having Taxotere on its own and just want to get the next one on the 27th over with so i know if I can continue with it - just woke up with ithcy red spotty neck and chest!! Not sure what the alternative would be if I can't have FEC or Tax;-/ The Oncon wouldnt really commit to anything!!

Take care, thinking of you all xx

 

Nellie55
Member

Re: July 2016 starters

Bookworm, sorry to hear sickness been a problem, glad the brandy is helping 😄 lol. Perhaps that is the drug the oncologist has up his sleeve! Hahaha. Feeling good this morning chose my hat and matching scarf for lunch today. Glad I did the exercises after my ANC so I can arrange my scarf without too much problem! Anyway, hope you have a good weekend and will be thinking of you on Tuesday, my 2nd FEC is Weds! Xx

Bella boo
Member

Re: July 2016 starters

Morning all, Nellie I hope you didn't have too chilly a night minus the hair but it is a relief to get it taken off. I hope you have a lovely lunch today. Audrey thank you for your kind words all I can say is roll on 2017. Bev good luck for today the picc line really is very easy you'll be in and out in no time. Taran did you do it? Xx

Nellie55
Member

Re: July 2016 starters

Hi Bev, all the best for today, big hugs, you will get through today fine, in fact I felt as if it was happening to someone else and when I walked out of the chemo unit with my bags of medicines I though have i really just had chemo? Hopefully the meds will work well, but know that with each day that goes past you are on your way to getting rid of the 'C'. Thinking of you xxx

bevvers
Member

Re: July 2016 starters

Hi everyone. I have been trying to catch up on the thread since I was last here but too many to comment on so I hope you are all doing ok, well as ok as you can be! I have my first chemo tomorrow and to say I am nervous would be an understatement.... I had a picc line fitted on monday and it hasn't been used yet so I'm bit anxious about that too. Read up lots on the whole process but have realised very quickly that everyone reacts differently so the not knowing doesn't help the anxiety. I have also developed a bit of a twisted sense of humour since I was diagnosed, is it just me? I do find laughter is the best medicine but thinking I may end up offending someone soon lol though on a plus side my memory has gone drastically downhill too so at least I won't remember if I have offended someone! Silver lining and all that. Bev x

AJ_silver
Member

Re: July 2016 starters

Hey Pooking, I was thinking it may be good for us to chat through the direct message as we seem to be in a very simialr family set up, i've set up my direct messging if you'd like to chat. AJ xx
AJ_silver
Member

Re: July 2016 starters

Thanks so much Audrey for your lovely uplifitng post, so kind of you to drop by and keep us all positive! Xx
Bookworm48
Member

Re: July 2016 starters

And now I'm crying again as I've just read Audrey's lovely post. I need to get a grip!!! Fantastic news Audrey and so uplifting to see there really is light at the end of this tunnel. Thank you xx
Bookworm48
Member

Re: July 2016 starters

Oh Nellie, that is so brave. You've made me cry! ( in a positive, yeah, we can do this kind of way). You will look fab when you go out for lunch tomorrow and I bet you rock your new look. I too have really been struggling with the sickness. It really gets you down doesn't it. I have a virtually identical set of sick meds to you with the addition of domperidone. ( not the Brandy sadly!! ;). I also have Lorazipam and although it's often given for anxiety it's really effective for nausea too. They have told me to take it the night before and day of next chemo which will be Tuesday for me. Take care everyone. Xx
Audg
Member

Re: July 2016 starters

Hi ladies

 

i hope you don't mind me popping in, I'm from the October 2015 starters. I've just had my first "all clear" since my op and chemo, got my mammogram last week and all is good. Can't believe I'm finally here, the last year all seems a bit if a blur now. I really want you to know how positive you all are and just wanted to add a little bit more to it. You are all so brave, stepping into the unknown and holding each other's virtual hands as you go. I hope the effects aren't too bad for you all, and I wish you all the best for your journey. If I can offer any help or share my experiences please just ask

 

take care and keep strong

 

love

 

Audrey xxx

Nellie55
Member

Re: July 2016 starters

Hope the shave goes ok Taran, thinking of you.

 

xx

Nellie55
Member

Re: July 2016 starters

Well everyone I did it! The hair has all gone! It was driving me mad with the itchiness and clumps coming away so my hubby very bravely shaved off my hair. He gave me a mirror so I could see the gradual change, whilst our daughter knelt beside me as the locks began to fall, holding my hand.  It was quite emotional for us all but afterwards I felt better it had been done. After a shower, weird feeling washing my head, I donned one of my new hats which actually matched my pjs and felt amazingly better. We're off out for lunch tomorrow so I will put one of my scarves on as well. Looking forward to wearing my sleep cap tonight.

 

Thank you all for the information about the lorazepam, you ladies are so helpful in so many different ways and for your support.  Hopefully this next cycle will be better. Hope you are all doing ok in your different stages of chemo and for those waiting to start all the best.

 

Thank you xxxxxx

 

 

Flopsy
Member

Re: July 2016 starters

Hi Nellie,

 

Sorry to hear that you have been suffering from nausea and sickness as well.

 

I've had this for all 4 cycles now. Tried 4 out of the 6 drugs on your list.

 

There is another nausea "pathway" that I am thinking your Oncologist may have missed? I can't see any of the anti-histamine/motion sickness medications on your list BUT I am not a doctor and could be wrong.

 

I've recently added Cyclizine to my collection and it is making a difference. 

 

Here's a link to an article on nausea and sickness that has a list of different drugs that work in different ways

 

http://patient.info/health/medicines-for-nausea

 

I feel as if I am working my way through them. It's been 3 months of differing levels of nausea and sickness for me now. Changing my chemo regime from FEC to T&H (which was planned anyway) made no difference.

T
Member

Re: July 2016 starters

Will be thinking of you this evening Taran x Hope it's not too traumatic!
xx
Taran
Member

Re: July 2016 starters

Hi ladies, hope everyone is having a good day!

Bella boo, I haven't done the shave yet but with the amount that came out in the shower this morning I think tonight will have to be the night. Dreading it slightly because after burning my head at the beach on Tuesday, I'm worried the clippers are going to feel really sore!! Fingers crossed another day for it to recover a bit will help. I agree with the spotty/itchy feeling too. Can't decide if it's from the sunburn or the shedding!!!

Nellie, the lorazepam is used for anxiety, but lots of drugs are used for multiple reasons so that's why it is being given as an anti emetic. Much like the dexamethasone is actually a steroid, but has been found to work really well to control sickness caused by chemo. Then if you go onto tax the steroids aren't needed for sickness, but are important to stop allergic reactions to the oil used to mix the drug. Does that make sense?? I know what I mean. Lol.

T, let us know how your massage goes. I'd love reflexology, but so far have only booked myself onto the look good feel better course. I'm going to wait for anything else until after the school holidays as I feel really guilty leaving my parents with all 4 children while I get pampered!!

Suze and Pookie, thank you for the lovely compliment, but I'm really not supermum!! Just trying to keep things as normal as possible for as long as possible. I'm really lucky and have great support from my parents who are both retired 😊

Wishing good days for us all. I'll report back later on how the shave went. We have the celebration evening in my son's school tonight so will see what's happening when we get back from that. Might be a late evening shave by the time we get them all sorted and into bed!! xx
T
Member

Re: July 2016 starters

Morning ladies,

What a faff indeed Diana - can't believe they didn't use sterile gloves!! I hope it's sorted now! It is amazing how quickly you get used to it and feels quite normal - even the weekly home visit from the nurse to flush the line seems normal now - 2nd visit in.

I'm now day 7 after my first Taxotere as I reacted to the FEC first time around, and so far only had tiredness, sore mouth/tongue and heartburn but all managable/ish. The worst was day 4 after starting the G-CSF (bone marrow gererating) injections - couldnt sleep and felt rubbish - like flu!! much better today though.

Like some of you I have discovered they do complimentary treatments where I have the chemo - it's a fab new build in Bracknell,used for outpaitients from R.Berkshire Hosp. It made a big difference for me to go there as the Cancer Centre at the Hosp has a bit of a reputation, unfortunatley, for being a grim/old and rushed (lots have complained that cold caps were not fitted etc.). I feel bad saying that because i'm sure they are doing a fantastic job!! But it also, never felt like going into hospital when I went ifor the Chemo - strangley. So I'm going for a massage next week and will then try refloxology - so looking forward to it.

it's so good read all you posts x Thinking of you all - have a good day xx

dianabrew
Member

Re: July 2016 starters

Hi Nellie55,

sorry you have been having a rough time. Hope the new meds do the trick and you don't have such a hard time of it with the next cycle. I have no idea yet how I will react. The chemo nurse I saw yesterday said everyone is individual and they can't predict what combination of side effects we will get. She said some people sail through with mild ones whilst others get everything possible. They do seem to have lots of drugs to throw at us so I guess it's a matter of letting them know and not suffering in silence. 

dianabrew
Member

Re: July 2016 starters

Thanks Bellaboo.

The PICC line isn't sore this morning. I have had fun online at Hats 4 Heads. The lovely man helping with the insertion of the PICC line told me about how his mum had got some head coverings from there. I have ordered a sleep cap, a wig liner and a turban. Am hoping to get my hair cropped today. I hope the hairdresser ( she is a neighbour and is doing it for free ) doesn't find any nit's as my gorgeous granddaughter as come back from pre school with them and I can't see the point in wasting nit lotion on myself 😳

 

Nellie55
Member

Re: July 2016 starters

Morning everyone, hope everyone is doing ok.

 

I saw my oncologist yesterday and told him exactly how poorly I felt for the first 48 hours of chemo with the nausea, retching and sickness. He was quite disappointed that I had had such a grot time! Anyway he is now giving me another tablet as well as all the others to help with this. So I will now have: Emend, Dexamethasone, Ondanestron, Metoclopramide, Omeprazole and now Lorazepam. He did say if Lorazepam doesn't work he has one more drug up his sleeve! So I have been booked in every 3 weeks to see the Head Chemo Nurse re medication before each cycle of chemo. Let's hope this works, although reading the leaflet it says the drug is used for anxiety! Didn't think I was stressed and wound up after chemo, I was just retching and had nausea. Perhaps this will make me sleep through the first 48 hours! 

 

On on another note, I'm started to get a bald area!!!,😜

Bella boo
Member

Re: July 2016 starters

Hi Diana and welcome to this thread. Sounds like your all good to go now. I have a Picc line and do have a few ouch moments when I catch it but I've had it in for three weeks now so am used to it. Hi Nellie prior to having my hair shaved it felt just like yours spotty and itchy I thought when it came off It would be full of spots but I think the fresh air has helped as I've no spots now. I found it quite a strange sensation when you pulled on it and it came out with no pain, very odd. Have lots of hats and turban like things from Anna bandana they seem to have gone down well and have had lots of compliments. I feel ok about it going as I remember Sue saying it means the chemo is working!! It can't half get drafty though when I have nothing on my head. Taran have you done the big shave yet? Xx

dianabrew
Member

Re: July 2016 starters

Hello lovely ladies,

I am learning a lot from reading all your comments. I had a tour of the chemo unit today with a view to starting FEC on Friday . My PICC line gave them a few problems. It was supposed to go in to 46cm but refused to budge after 31cm. Apparently there is a bend where the jugular vein joins and the line refused to go round it. They left it as it is but did have trouble getting bloods from it later. The X-Ray must have shown it to be ok because they let me go home. Has anyone else had this happen?

On the way home I got too warm ( hot flush) and tried to take off my cardi but it was tangled in the bung on the end of my PICC line and got a bit pulled so I popped into a local hospitals minor injuries unit so someone could check it for me. They have redressed it but now I'm concerned that I may get an infection because the nurse didn't use sterile gloves! What a faff! 😄

Nellie55
Member

Re: July 2016 starters

Hi Bella boo, more hair is coming out today. I catch myself unknowingly tugging at it! Feel I've got loads of spots underneath it all though, ugh what a sight I will be. Can't decide which hat and scarf I'm going to wear first! Most evenings went I go out for a stroll with our dog I wear a soft beanie, and where I had my hair cut short, it looks like I've lost it already. So I'm feeling a lot more confident about being bald and being outside with the general public. How do you feel? Xx

Nellie55
Member

Re: July 2016 starters

Taran, you must have more resilient hair than me, 2 days after me! At what stage will you get the clippers out and shave it off? I have a hairdressers appointment on Tuesday, will I last til then I wonder? Does your head itch as well? Mine has been driving me bonkers and feel I have loads of spots underneath it all! What a sight I will look with spots all over my scalp when the hair has gone! Hope you are enjoying your 'good' week with your kids. xx

Suze65
Member

Re: July 2016 starters

I so admire those of you who are managing families and trying to keep life 'normal' for kids at the same time as going through all this. Taran, you do indeed sound like 'Supermum'.

 

Thanks Sue for the chemotherapy checklist - it's very helpful. Alex, good luck next Tuesday - may we both sail through!

Taran
Member

Re: July 2016 starters

Well I am now day 16 and the shedding has begun!! Lost quite a bit this morning in the shower, but only a few strands here and there since. Waiting for it to pick up pace now, and glad I charged the clippers ready for the big shave!!xx
Bella boo
Member

Re: July 2016 starters

Morning all, Oncewild enjoy your break my hair started shedding on day 15 but it didn't all drop out at once. If you mess with it then it'll come out more. I found a good rub in the morning over the sink helped till I got it all shaved off. I've  Had had a lovely morning as have just been for a complimentary back and neck massage courtesy of the unit. It was lovely and very much appreciated. Welcome to the thread Suze and be reassured the waiting is the worst bit, most people have managed just about ok with their first cycle. I have got my second on Monday 18th. Alex and Madhatter I do hope you both heal soon and can get on with it, it must be quite stressful not knowing when you will start but it definitely is for the best as you wouldn't want to feel under the weather before you even start. Taran glad to see the little ones are feeling better and enjoyed their trip and more importantly you didn't get the bug. Nellie how's the hair situation...I wish it would warm up a bit as it can get quite drafty up top without the hair 😀 Hope you all have a good day xx

OnceWild
Member

Re: July 2016 starters

Just been catching up on the thread and the talk of shedding is making me have a minor panic. Have just booked a holiday cottage from next Friday, as I figure it is likely to be my best week and so want my children to have something fun in their hols. I noted the agency had pretty stringent T&Cs, including a £50 penalty if the cottage is left with dog hairs and same again if there is any evidence of the dog in the bedrooms. I am now thinking, as I will be on Day 14, it be me not the dog that will be the culprit! Hoping for a great time despite chemo challenges. 

Pookie1
Member

Re: July 2016 starters

Taran, you are Supermum! Even under normal circumstances three boys and a little baby girl must be quite a lot of work! let alone with all this stuff to deal with on top of it! Once you get through this you'll know you can deal with anything.
AJ, phew, glad my husband isn't the only one! And you're right, it does massively suck that they have to go through this while they're still so young. Although I'm going to do my utmost to make it as normal for them as possible and reading Taran's post, I'm now even more sure we can do it.

Alex, the wait is awful isn't it, I can't imagin how it must feel to have had it postponed. All fingers and toes crossed for you that it goes ahead this time.

ooh, finally, AJ, there's an amazing list right at the beginning of this thread, posted by Sue, which also includes a link to tips and trick for looking good. Not sure if that's the one you saw, but it's a great read anyway and even drew my attention the 'brow wigs'.........I literally had no idea they existed, but I'm totally going to get a pair! Sue, have you tried them yet?

Px

 

AJ_silver
Member

Re: July 2016 starters

Just wondering if any of you lovilies had a thread that was hints and tips for chemo, the one I read had a fab list with all the recommendations everone had made but I cant seem to find it now, wish I'd taken a screen shot. AJ xx
AngeNut
Member

Re: July 2016 starters

Hi Nellie, 

Oh bless - mine stared on day 15 at bedtime. Then heavy fallout next 2 days as was shortish ... So day 17 had the 'Tuppeny All Off'! I look like a kiwi fruit 🍈

It's itchy and still falling out - all the dark stubble seems to be going - but it's do much easier to clean up the  short hair! I have wig but bought a beany cap from the centre today as my head gets cold at home.

yes it IS a relief and I just feel that's the worst visual sign done with now...

x

AJ_silver
Member

Re: July 2016 starters

Pookie your story about your husband made me laugh! Mine is so similar! Im always the the same at bed time the bad guy chasing them to bed while my husband winds them up playing tickle games!! Also they would never brush their teeth if I didnt make them! Ive been talking about mine as my lump from the start which I think helped me but I just tried to make it a light hearted and upbeat as I could today and it helped me get through it and stoped the kids getting scared. Everytime I imagine someone someone litening to my little chat with the kids my heart breaks though, it suck so much that their mum has cancer at 34! I just keep trying to stay super positive. AJ xx
Alex2016
Member

Re: July 2016 starters

Welcome to the July Thread Suze65.  Looks like we are starting chemo the same day (well fingers crossed for me, as I have been postponed for 2 weeks due to problems from my ANC).  Sorry you already have experience of dealing with cancer so many times with your husband.  You have obvioulsy been through very challenging times.  On a brighter note, you will find so much help, advice and support on the Forum. I might add marmite and celery to my chemo wish list, which is getting longer by the day!  I have had way too much time to prepare lol.  x 

Alex2016
Member

Re: July 2016 starters

Madhatter, sorry you have been delayed again.  I know in your last post you thought you would be getting first session this week.  Fingers crossed when you go on Friday you will get good news about starting. Can't believe I am saying starting chemo is good news!!!  (but you know what I mean lol) I am in similiar position to you. When they postponed last week, they said i would commence first session Tuesday 19th, but my wound  is still weeping and getting dressed daily.  The District Nurse is trying to arrange for an appointment for me at the Breast Clinic this week.  Hopefully they will be able to give me some indication if chemo will go ahead on Tuesday. At least I am not really in much pain any more, just cording when I do my exercises and really stiff and in pain first thing in the morning.  What about you? I just feel, as I'm sure you do too, that it is givng me too much time to dwell on what chemo is going to be like, including how hair loss will affect me emotionally.  Good luck for you appointment on Friday. x

Taran
Member

Re: July 2016 starters

Hi Pookie, my boys are 5 and almost 4 (twins) and I have a baby girl who is 4 months. I haven't read the mummy's lump book to them because I think they are too young for it. So we've told them bits in stages. First the surgery, then that I would be having special medicine. They know my hair will fall out, and that I might get too tired to do certain things all the time. But so far from cycle 1 I've been able to do all school runs and bed times, so not much has changed for them. I had a few days where I let my hubby get up with them in the morning so I could sleep longer as I wasn't sleeping well at night at all. But apart from that I've been able to do my usual things for them. This might well change as the cycles go on, and the summer holidays will be more of a struggle I'm sure. But the longer I can keep things normal, the better. So that's my plan! xx
Pookie1
Member

Re: July 2016 starters

Hi AJ, wow, we're in a very similar position. I couldn't read them Mummy's Lump because I couldn't even get through it by myself without bursting into tears.......in fact, even saying 'mummy's lump' makes me well up. I'm able to be really strong when talking about it all generaly, but as soon as anyone mentions kids (any kids, not just mine!) I just get waaay too emotional.

That's great that your husband can work from home......but I know what you mean about not being sure how it'll work out. I left my husband this evening to sort out teeth and bed time while I put clean sheets on their beds, only to come down 20 mins later and find all three of them still siting on the sofa watching tv! So I had to be the bad guy again and shoo them off to bed : (

I think I'm going to get some essential stuff before I start next week as just this evening my husband went off grocery shopping with a list we wrote together.....15 mins later I got a phone call from him asking me to text him a photo of the list as he'd forgotten it. I duly sent it and he still came back with half the items missing!! Lol, he is trying though and I know he's being affected by this just as much as I am, so I'll cut him some slack.

Good luck for the assesment tomorrow and, of course for Friday xxxx

AJ_silver
Member

Re: July 2016 starters

Hi Pookie, I had the exact same chat with my kids today, they're 4 and 7! My little boy whos 4 couldnt stop laughing about me getting bald, my daughter was ok but a but quiet about it. I read them the 'Mummys Lump' book which I though was quite good. I've got my assessment tom and 1st chemo Fri!! Eeeek!! Cant decide if I should make a list of stuff to buy in for side effects or wait and see which ones I get then send my husband shopping!! 🤔 Im worried too about coping with the kids over the summer, my husbad is gonna work from home but not sure how well it will work! Lots of friends have offered to help so hopefully that keeps them amused! AJ xx
Pookie1
Member

Re: July 2016 starters

Thanks Sue and Taran, I'll definitely ask tomorrow and fingers crossed I'll have shaken it off completely by next week.

Taran, I'm absolutely amazed and delighted for you that you could go on such an adventurous trip with your boys! So glad you had a good time. How old are they? And how are you coping with having treatment but still being there for them? That's one of the things I'm dreading the most. I had the chat with my two (9 and 7) today and explaind that I'd be feeling a bit ill over the holidays and mentioned a few of the more likely side effects eg. hair loss. They took it pretty well, but I think the reality might be harder than we all expect : (

Taran
Member

Re: July 2016 starters

Hi everyone, I've had a lovely day at the beach on the school trip with my boys so feeling nice. But exhausted!!

Nellie, I still have no shedding. Not one hair. It's crazy, I've been expecting it to happen for days and still no signs. I know it can't be far away now and it's making me very twitchy!!

Suze, welcome. It sounds like you and your hubby have been through an awful lot on the chemo front already. I can't imagine what that's been like. Fingers crossed you get through it with few side effects and taste buds intact. Mine have already disappeared and I'm only on cycle 1!!

Pookie, check when you have your assessment, but as long as you cell counts are normal then they shouldn't need to delay chemo because you've been unwell. Might be a problem if you're still showing signs of infection though I guess??

Will try and catch up properly once all the littlies are in bed!!xx
Sue H-S
Community Champion

Re: July 2016 starters

Hi Pookie1

unfortunately highly likely too late to call her, as they do tend to work standard hours.

When you have your chemo assessment tomorrow - do ask them - and they should advise. At the moment your immune system should still be fine and you have about a week to shake off the sniffles.

But do ask!

Hugs

Sue xxx 

Pookie1
Member

Re: July 2016 starters

Evening all you lovely ladies! Please forgive me for posting with a silly question, but I have no idea and it's too late to call my bc nurse.

My daughter came home with a delightful bug last week and of course I also caught it. I'm feeling tons better now but have a lingering cough and am still a bit sniffy. I'm having my pre chemotherapy assessment tomorrow in preparation for the main event on Wednesday next week. Do you think this will be a problem? I'm all geared up to start now, the wait has been interminable, don't think I can cope with yet another week of waiting : (

AJ_silver
Member

Re: July 2016 starters

Hi Hazel,
Thats so annoying about the mixed messages! The A&E sistuation seems to be a very tricky one. Im in Glasgow so going to the Beatson for Chemo. How do I send a DM on here?? 🙂 AJxx
haz25a
Member

Re: July 2016 starters

Hi everyone,

 

Well, turns out I would have had to see GP today anyway, so really glad I had an appt booked. I'm now on Day 8 of TC (Doxetacol and Cyclophosphimide) and Herceptin. I felt yesterday I had turned a corner and was starting to feel a bit better with regards to SE's.

 

I did something really stupid and got my waxing done 3 days before my first chemo, seriously, who does that?? I have no idea what I was thinking! Anyway, all was well until yesterday I noticed redness, inflammation and a sort of bumpy rush in my underarms and bikini line. After closer inspection late last night after shower I realised I had some "sores" which were very red and inflammed with some broken skin. I phoned the out of hours number and explained, they suggested I went to A&E miles away and I said I'd rather not so agreed for my local chemo unit, a ten min drive away, to call me in the morning.

 

 

Oncewild- it's interesting what you say re: separation and A&E. I was told at the very start of chemo I would be given a 24 hour helpline number to call, not to worry about a thing, someone would always bet there etc. etc. I was also told that as I live so close to my chemo unit I would always be seen there and not asked to go to A&E. My nearest A&E has recently closed down and other two in my city are huge and mega busy and not very handy. I had a missed call from a "blanket NHS " number, in Scotland whenever anyone, in any dept from the whole of my NHS Board, this number comes up and you are unable to call it back as it doesn't receive incoming calls. Assumed I had missed the call I was told to expect from Chemo unit, so called them back. After eventually getting through, I was told that, yes, I was on the list for a call back but they had not yet done so and would do so. Eh?, well I'm on the phone now speaking to you, could we not discuss things now? Apparently not and they called back an hour and a half later. Nurse told me to see GP re: skin and get antibiotics, keep an eye on temp and let them know if I had further problems as I would need to be admitted for IV antibiotics. I also had to phone them at the weekend and was referred to NHS 24 to see a doctor so I thought I'd question the nurse about the the protocol. Apparently if I become unwell between 8.00-6.00pm I could attend my chemo unit but if I become unwell after 6.00pm, I would need to attend AND be admitted to A&E general hospital AND stay there, not be transferred to chemo unit. I pointed out that this wasn't really ideal for a patient having chemo and an infection to be treated at a general hospital and was told "That's just how it works." So, I'm a bit disappointed really as it seems the reassuring information I was given at the start of chemo was not strictly accurate and if I become unwell during my chemo treatment I will be pretty much treated the same as any other patient.

 

Anyway, got to GP's and asked receptiontist if I could wait outside the fire exit as they had it open and often do when the weather is nice. No, I couldn't apparently. Ok then I said, I'll be waiting right outside, you can come and get me as the waiting room was packed full of people coughing. GP decided I did have skin infection but that it was fungal and did not prescribe antibiotics but antifungal cream instead. I trust him so that's fine by me. We chatted about the protocol and had a bit of a laugh re things. My GP's practice is very busy and I don't feel he should be dealing with every medical matter that arises as a consquence of my chemo when I am under the care of a Consultant Oncologist. Anyway, I've decided that in the future if I have any chemo related issues I will simply turn up at my chemo unit rather than attempt to phone and wait ages to be called back.

 

AJ Silver, I think we may share the same Cancer Centre? PM me if you want.

 

Sorry for long post but feeling a bit let down by under resourced NHS and conflicting information today. I don't blame the staff, more the lack of funding causing problems in the NHS although obviously I am very grateful to have them.

 

Hazel. x

Sue H-S
Community Champion

Re: July 2016 starters

Hi Ladies,

sounds as everyone is doing - sort of - ok, which is great.

I am back at work full time for this week and most of next week - and am 'looking forward' Smiley Wink

to Chemo 4.

Suze - welcome to the forumwhere no on really wants to be - we are here to support, chat and share our experiences and a few laughs, too! For more tips re chemo - if you are on a laptop or PC and scroll down - click onto the first post page of the forum - on my laptop it is Page 16 - there is a list, which may help you to prepare for chemo.

Nellie55 - losing hair varies from person to person - I shed once post chemo 1, a second time post chemo 2, when most of it was gone - now post chemo three - Bum fluff  and completely bare patches Smiley Very Happy

Madhatter67 - so sorry to hear that you are being delayed further, but you know that it is so important for you to heal properly first, as your imune system and healing capacity will be compromised by the chemo.

In due course you should see an August Starters thread appearing - so if you do start your chemo this month, you may also wish to join that one - once it appears.

Bookworm48 - great to hear you have such a good GP. I must say before chemo I struggled to get my appointment - as they usually do them by phone and then judge whether they should see you or not. But I got my appointment and stocked up on prescription meds I might need - also everyone else was alerted - so receiving fabulous assistance, whenever I need it. Our receptionists are really sweet - but then I live in a rural area and in a small village.

Had one of my  - WHHAAAT? - moments today, when I found out that going private for the op is around £13,000 - Wow - that is a LOT of money!

Thank you NHS for letting us have it for nothing....

Hugs

Sue xxx

Bookworm48
Member

Re: July 2016 starters

Totally unfair that both you and your husband have to weather such storms. You sound a very strong team and I'm sure will give each other so much support. I really hope your side effects are minimal. The tonic water tip sounds a good one. Will be thinking of you on Tuesday. Xx
Suze65
Member

Re: July 2016 starters

Hello Bookworm, thanks for the greeting, and the tip about ginger biscuits. My husband would laugh if I started eating Marmite, as he is a Marmite addict and I don't like it, but who knows? He has lived through 8 years of various cancer treatments and now seems to have lost most of his taste permanently. He finds celery usually 'comes through' and when he was on chemotherapy, found tonic water tasted better than water. He now drinks a lot of fizzy water, as that tastes better than still.

 

I shall be on FEC and Taxotere (Docetaxel) with Herceptin, but then later a hormone blocker too, as I have both HER+ and ER+ cancer - lucky me!

 

Thanks for your support, and good luck with the next chemo.

x

madhatter67
Member

Re: July 2016 starters

Hi to all you lovely ladies.  Well, as some of you may know I was due to start my chemo treatment on the 7 July, but because of an infection under my (treatment) arm, I was unable to start.  Have been back again to Clinic, but still cannot start this week.  Am back again Friday morning, so will post an update.  I am going to be behind the majority of you ladies on here, but I do look forward to reading how you all cope with the SE's.  That one thing not looking forward to, but I know we all different somwill just have to wait and see how I get on.

 

Keep smiling ladies 😀

 

 

Nellie55
Member

Re: July 2016 starters

It's started! On day 14 of 1st FEC, my hair is now shedding. I've been dreading this day but actually although a bit nervous, I'm feeling relieved that it is finally happening. Every day since chemo I've worried that I would wake up in the morning to find all the hair in the bed and me completely bald all at once! Irrational thought I know but still one.  How long does it take to all come out I wonder? Any ideas ladies? 

 

Taran, how are you doing now? I know you started a day before me are there any signs of shedding for you? I suppose everyone is different.

 

Hi Suze, welcome to the forum, glad you are finding it helpful. All the best for Tues 19th, you will get through it, it is amazing the inner strength we ladies all find, the waiting for it to start is sometimes the worst 😊.

 

Hope everyone else is doing ok xx

Bookworm48
Member

Re: July 2016 starters

Hi Suze and welcome. I will be having my 2nd EC chemo on the 19th so will be thinking of you. What chemo are you up for ? Fingers crossed for you. Up and down week for me to be honest but feeling brighter today. My main crisis points seem to be tiredness and emotion related frustration at being so useless during the school hols for my children. However thought I'd pipe up about my GP as he was fab today. This morning I got bitten by a mosquito. So annoying. Had repellant on etc but bite is on the side of ANC, lymphedema risk etc. seemed a bit OTT but called BC nurse just in case as it started to welt up. Consultant said he wanted me on antibiotics asap just in case. Called my practice. Duty GP called straight back, prescribed antibiotics and electronically got them dispensed for me. I didn't even have to enter the surgery. Now feel total fraud with horse pill size tablets but can't fault my GP today. He actually said please don't come down, the surgery is packed. Nice man 😊. Hope you're all doing ok. Day 7 for me. Have found ginger biscuits work for middle of the night sicky feeling for me as in pregnancy and marmite cuts through metal funny taste at breakfast. X