July 2016 starters

Hey Pookie1, I was really nervous about wig shopping too but it went really well, I was amazed how real they looked on. The shop I went to said the alter the wig to fit your head so you should be all good size wise. I also sound this fab video on youtube, I coudlnt actially believe at first she was wearing a wig. m.youtube.com/watch?v=d3-YB-pyuiI
Good luck AJ xx

AngeNut how did you add your fab pic, I was trying to do it on my phone but coudlnt work it out AJ xx

Hi Oncewild how are the side effects today? I hope they’re improving and your feeling a bit better today. The injections really are ok. The district nurse showed me how to do the first one and then I did the rest myself. The needle is very fine so does go in quite easily, it is a case of grit your teeth. I didn’t want to have to wait in for the district nurses to come as they don’t give a fixed time. Hazel and Nellie I hope your feeling a lot better. Taran I assume your still going strong? Welcome AJ and good luck for Friday, the unknown is really much worse than reality. Pookie, I call it my ‘infusion’ it has such a nice ring to it. Well it’s hair today and gone tomorrow for me. Day14 and I wasn’t expecting it…I ran my hand through my hair and came out with quite a few. I have since been following myself round the house with a Hoover. Whilst I still have a lot left I’m having it shaved off tomorrow as I know it’s all going to come out and I can’t spend my good week hoovering the house. My son has landed back from his holiday today so at least he’s not come home to a baldy mum, though he has asked if he can shave it for me…errrrmmmm NO. Hairdresser all booked for tomorrow afternoon. I have a wig called ‘connie’, they do actually name them. It does look very similar to my own colour I’m just not too sure how comfortable it will be on a bald head but I’ve got lots of turbans/scarf type things from Anna Bandana. Well hopefully that’s the last se for this round and I can get on and have a good week xx

I’ve noticed a few of you guys mentioning injection, what are these for? Steroids? AJ xx

Sue, so if I’m not prescribed the injections (I don’t remember them being mentioned. In saying that I don’t remember steroids being mentioned either), I should just take it that I have been deemed as them not being necessary for me? I have children, but they are in their early 20’s.

Aaaah! I see thanks Sue, i’ve got two little ones and am a bit worried about the germ fest that will come home with them when they go back to school in August. ??

Hi Bella Boo. Hope your delighted to have your son back home. Your post made me laugh out loud!
"My son has landed back from his holiday today so at least he’s not come home to a baldy mum, though he has asked if he can shave it for me…errrrmmmm NO. "

Hi Sue the injections are given as standard in my area, I think they work on prevention is better than potential risks. I don’t have a compromised immune system however my son has come back from uni and a holiday in Tenerife  and heaven knows what germs he’s picked up there ? Good to know I’m getting the expensive stuff though. Alex I don’t think delighted is necessarily the right word !! I’ve spent the last week cleaning and have a lovely tidy house…but it is lovely to see him till he messes up the house ? Xx

Thanks Sue. I know you are not a medical person, but you probably explain things better than one! And you do seem to have done an awful lot of research.
When I’m getting first chemo on 18th (fingers crossed for no more delays) I will certainly mention injections for explanation regarding decision on whether they give them to me or not and will go with that decision.
Thanks for info.

Hello everyone,

 

Sorry, as I’ve missed a couple of days of posts I can’t get my head round to reply individually although I have read all of your posts.

 

Thanks for your good wishes. I think (hope) yesterday was my worst day (Day 6 of TC cycle one). I had to get the Doctor out to give me an enema for severe constipation, it worked but I’m still feeling a bit nauseous, stomach cramps etc. So stupid of me really as I suffer from constipation anyway, I should never have let it get to that stage. My SE’s really have been fatigue, brain fog, nausea but no sickness, hearburn and obviously constipation.

 

I will make sure that I’m on top of the constipation issue for my next cycle. It’s hard drinking loads of fluids when you’re feeling sick and sleeping most of the time.

 

I do hope everyone is doing well and that those of us who are having problems at the moment will feel better next week. Taran, hanging on to your comment about feeling worse days 5 & 6 but then BETTER.

 

For all of you who are starting your chemo this week, Best of Luck.

 

Hazel. x

Well girls, after 36 hours and losing half my head of hair, son #3 offered me a Buzz Cut! 

(The wig lady advised not to shave as scalp is not used to it and may be tender - true!)

So I had a no4 ALL over… I was dreading it - but what was worse was yesterday and today them seeing my sad ‘comb-over’. The minute my hair was done I felt totally LIBERATED and transformed from feeling sad and pathetic into a Feisty Fighter!!! 

It’s a Crown of honour with a badge (PICC - line) of bravery and I belong to your amazing army!!!

In 10 minutes I was transformed inside and out! I felt proud and honoured! 

image.jpeg

AngeNut you look beautiful… I know I am going to look like a potato when my day comes. 

 

I had a difficult first day, feeling like I had been run over by steam roller. Got anxious that DNs weren’t coming to give jab so phoned 111. Went into emergency Drs and they discovered I had a temp so it was off to A&E. Full round of tests, lying on a trolley in a side room, before being admitted onto a ward ar 4.30 am. Temp bobbed up and down all day, helped by paracetamol so they decided it was just my body reacting to the chemo and let me go home. SO nice to be back. Hoping for a better day - though I have an appt with the bbossy physio for lymphedema advice. My needle phobic hubby has risen to the challenge and is giving me my jabs, so impressed. 

 

Hope you are all doing ok. Will catch up with the thread soon. 

AJ, that wig in the link is amazing, thanks so much for showing me. If I can get one that looks as realistic as that, I’ll be happy!

Bella, I love ‘infusion’ haha, I’m thinkng fresh mint tea and ginger and lemon : )) It must be lovely to have your son back at home. At his age, he can also be a bit of a help (unlike my two!!)

Sue, thank you so much for the explanation of the injections. I too was wondering what they are, but now I know, I’ll definitely mention it as my children are perfectly capable of bringing home all sorts of nasties, even when they’re not at school! I’m having to arange lots of things to keep them occupied over the summer, so who knows what they will bring back with them.

Alex, good luck today, I’ll be thinking of you.

Hazel, sorry you’ve been feeling sick, it really is so horrible. I remember feeling sick for the entire 9 months of both my pregnancies, so I’m not looking forward to going there again. I hope you’re feeling today.

And finally, AngeNut, wow, you look great. And your smile is mega watt. I hope I look as good as you when the dreaded day comes.

Right, off to the wig shop, will let you know how I get on : ))

Oh no, OnceWild, that sounds awful. I really hope today is a better day for you. Good for your husband administering the injections! You’ve got a good one there : )

Px

AngeNut you look fab!! Crown of honour is a great way to think of it. I’m now day 14 so just waiting for the shedding to begin. Have the clippers at the ready for when it does!!

Oncewild, I’m so sorry you had such a terrible first day. Sounds like a nightmare for you. You must he exhausted from the stress of it all!! Here’s hoping you have an easy ride from here now. Sounds like you deserve it after ending up in hospital already.

Hazel, I hope you feel better after the enema. Constipation is awful. I suffered with it the first few days, then had the opposite problem once I’d stopped all the meds!! Day 6 was definitely my worst day, and from there is has been a steady improvement back to normal. Will keep fingers crossed it is the same for you, and today is a better day ?

I’m still feeling good. 2 is my boys have had a sickness bug over the weekend so they are home from school today. Hoping I’m far enough past the danger point now to not end up catching anything nasty. I’m always super clean anyway, but there’s only so much you can hope for after catching sick with your bare hands ?? xx

Hazel that is so funny i’ve found receptionists in GP’s to be very rude and grumpy too, must be in the job description ? Hope you get on ok AJ xx

The GP issue is interesting. Till now I have been very fortunate and required very little from the practice for myself or the children. Original GP retired years so have no relationship with any particular one. They have all been fine when I needed something- till I got cancer! I have been so disappointed with the 2 I have seen since diagnosis. All I wanted was some recognition that I am in a horrid place and maybe a quick explanation about what their role is. Talked about this with my brother, a GP, and he feels it is the pressure of time (7min appointments) and worry about opening a can of worms. I hope to give them some feedback when I can face it. Sounds like you have a good relationship Hazel, which must be a great help.

 

With respect to being segregated, over the weekend when my temp was high I had mixed experiences. I was offered a separate cubicle in the Out of Hours Dr and seen very quickly. In A&E I had to sit in the waiting room for a while then was taken to a separate cubicle inside. Good job as I was there till 4.30 am and could close the door and have the light on dim. They said if admitted I would be in a side room but I ended up on medical assessment unit in a 4 bed bay. I was desperate to get home but had to wait for Dr who didn’t see me till 5.30 pm - when he said hospitals weren’t the best place for me! Not great. So guess it is a bit mixed! Availability seems to be the issue. 

Oncewild that’s disappointing about the GP, my cancer nurse suggested I visited my GP to discuss my cancer but I didnt really see the point as i’ve not really built a relationship with one, its to hard to get appointments for the same GP. The short app time is terrible, a GP should be there to support emotionally but simply dont have the time! ?

That must have been awful stuck waiting at the hospital for so long, way to much pressures on A and E departments. AJxx

Hi,

 

I’m new to the Forum and to this thread but am starting chemotherapy next Tuesday 19th July. I’ve been reading about other people’s experiences and you all seem very brave and resilient. I’ve picked up a few useful hints, and I’m hoping I’ll cope just as well.

Love to you all,

Sue

 

 

 

 

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