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

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 ?

 

 

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

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’ :smileywink:

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 :smileyvery-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

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

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

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 : (

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

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 : (

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

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

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

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

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

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

 

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. 

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

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

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!

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! ?