In good spirits today. Feeling full of energy. Hoovered, washed floors, changed 3 beds, 2 washes later and was only 10.00am!!
Off for Portcath today - good luck Kate I am also nervous and looking forward to when it is fitted.
Everyone having Chemo today - good luck it’s great to tick that first one off.
I also tried cold cap and found to be OK and have had no hair loss as yet fingers crossed.
2nd Chemo Tuesday.
Glad everyone that’s had the Chemo hasn’t found it too bad. 2nd week for me got better in relation to triedness and queasy feeling.
Take care everyone
Ginge xx
big hugs to all of you starting chemo today, 15 days in for me and am feeling almost normal, bit tired still and mouth still has awful taste. No hair loss yet , have had it cut short in prepertion and bought scarves.
Looking after my grandaughter tonight so that will keep me busy.
Ging I have only changed one bed and sorted out a pile of books coffee and biccys now!!
Take care all.
Fi xxx
Hi Girls
Jay Yes don’t be hard on yourself. I have been in tears most days.
Our lives have been turned upside down and it’s hard watching other people happy in their lives when I’m going through hell.
Had second op in 3 weeks yesterday. A skin graft on my reconstructed boob. So I’m feeling pretty sorry for myself. I WANT MY LIFE BACK!!
On Monday got 2 hosp appointments, one 60 mils away for boob and one near home re start of chemo.
The chemo really scares me . I can see from your posts that it perhaps isn’t as bad as you think . But the whole thing makes me nervous.
Just had words with the hubby, not his fault, just jealous that he is off out while I recuperate from last op. I feel bad but I feel so angry with what has happened. Not that I would want to wish it on someone else but my family has already had to deal with so many medical problems.
Sorry girls probably being too negative , I am trying but feel so drained and scared of what is to come.
Hope that all you girls who started chemo today feel ok.
xxxxxxxxxxxx
Just one last post before I go to Spain in the morning - believe me I can’t wait!!
Good luck to all of you that start your chemo next week or who are going in for round 2 (already!)
I hope that those of you who had their first round this week are not suffering too much from SE’s.
Sozza - I have been where you have 2 ops in 3 weeks. The second one really took it’s toll on me and I was very emotional. I too am still emotional - you would think I would be on top of the world going away but people sure have a knack of bringing you down!
Anyway, I will do my best to raise a glass or two of Sangria to you lovely ladies whilst celebrating my big sister’s 40th Wedding anniversary (Before you ask she’s a lot older than me!!)
Last weekend of ‘normality’ for a while (I start chemotherapy next Tuesday). I’m doing a mammoth hill walk tomorrow just because I still can! But reading some of your posts, makes me wonder whether I’m expecting far worse than it might be… the treatment that is, not the walk! I suppose we are all different and what affects one might not affect another.
I’m also rushing around like a mad woman, cleaning, dusting and scrubbing and telling everyone to do their bit cos the house MUST be clean before I start treatment! Oooo the germs that are lurking round every corner, ready to pounce when we are at our most defenceless!!! I can’t live in a sterile bubble (never have and don’t want to) but it does feel like I’m ‘nesting’. Anyone else feel the same or is it just me and I’m as mad as I thought.
Are people having the odd tipple now and then? If not I’d better finish that bottle of red hanging around in the kitchen.
Hi ladies, chemo went well today. Wore the cold cap & found it fine, just felt a bit cold but then i do have a thick head of hair. The lady next to me was on her 5th cycle & has worn the cold cap & i couldn’t believe how much hair she had, she said it had thinned a bit but that was all. She looked really good. Im now at home with a medicine chest full of pills. They gave me full doses of anti sickness meds & im drinking loads of water as im paranoid about being sick. Feels a bit strange as i feel like im just sitting here waiting for a side effect to kick in. Hope everyone else is ok xx
Had a bit of a rough first chemo as my Portocath didn’t play ball (possibly kinked) and I had to have it through Venflon, at least they know now that I really do have pathetic veins This meant I had the cold cap on for about 5 hours as they sorted it out, felt like a snowman by the end. Everyone was really kind though. Have to go back in to see if the Portocath can be sorted out next week.
But the chemo went in fine eventually, have come home with a bucketful of drugs and like you hjv seem to be sitting waiting for something to happen. Can’t say I feel great but not awful either.
My chemo was fine today. They had the same problem as yesterday and took three attempts to get the canula in, so my arm is a mass of bruises. I am booked in for a PICC line next weds, so at least that should solve that part of it. Does everyone else have these heated pads on the side of the chair to warm up the veins?
I have got the anti sickness meds, but so far dont feel sick, so have not taken them, maybe I should do just incase.
There was a lady today who had the cold cap and they didnt put conditioner on first and said it wasnt necessary, I was under the impression that you have to use it so it works properly.
Hi SGL sound slike it went OK veins not withstanding - please DO take your anti-sickness meds and steroids as prescribed, don’t wait to see if you feel sick. It is much harder to stop vomiting than to prevent it. There was seomoen wiht me who opted not to take hers as she didn’t feel sick… and then was, very, so be wise and avoid it.
SGL, glad you’re ok, i really think u should take all the anti-sickness meds as the nurse told me they’re preventative meds not curative so by the time u feel sick it would be too late. She really emphasised to me to take all of them as instructed.
My nurse said i made her day as my veins were some of the best she’d seen & it would make the job so much easier. Must say she was really gentle, it didnt hurt at all & went in first time, just got a tiny mark left so hopefully it’ll be ok for next time.
Sorry u had a rough time Southernlucy, hopefully they can get u sorted for next time.x
Think I’m going to give the cap a try, think it’s the loosing hair that is scaring me, stupid I know.
You all seem to be coping really well with manageable SE .
I think I just need to get going.
I was diagnosed in June, op in Aug . It has all dragged on a bit.
I’m sure that once I get going I will be ok.
Do they only use this line thing if your veins arent coping?
x
SGL, Southern Lucy, and hjv, so glad you arent feeling too bad after treatment today, long may it continue…
Ginge and Kate, hope things went smoothly for you both today…
Sozza, you have been through so much already, anyone would be emotional, I am so up and down at the moment, my poor kids cant keep up!!..We are all here to support you, I hope things go ok for you on Monday…
Annie, have a lovely holiday…
Curly, My last weekend of normality too, I wont be doing a hill walk though!! good luck with that…
I am also getting my house straight, and going a bit overboard with the cleaning! Its like I think I wont be able to do anything after Tuesday! which is daft! oh well we can be mad together!! What time have you got your treatment?..
Nicola, hope you are ok, have you heard back about how they may be able to help you with the picc line?..
Hi again Sozza…
I had a choice to have the picc line, and as i have a needle phobia and only one arm they could use it was the only option for me, I just wasnt sure if I would be able to cope with having it fitted, but I did…
It might be different in other areas, but certainly worth an ask…
Take care…
Jay X
Just wanted to wish all of you ladies at the start of your chemo the best of luck. I finished 6 FEC a year ago yesterday. One tip I would like to pass on is to keep a hospital bag ready in case of emergency admission to hospital. From halfway through my chemo I ended up being admitted through casualty with neutropenic sepsis on an almost monthly basis. I am not saying any of this to be alarmist as I am sure this only happens to a tiny percentage of patients but it does make all the difference to have your own clothes toiletries and books etc ready to go at a moments notice. The alternative can be your husband bringing you in a motley collection of unsuitable stuff!
AM
I too was admitted for being neutropenic - but only after the first chemo. I would second what annemarie said and just have a bag ready (just in case). I got a temperature of 38.2 - and when I rang the Oncy ward the nurse calmly said “just throw some things into a bag and come in” - I was admitted for 3 days and spent a lot of my time texting my poor OH and asking him to bring in various things like dry shampoo, towels, books, money, wet wipes, clean knickers etc etc.
But - not everyone gets neutropenic! Best thing to do is get into the habit of taking your temperature first thing in the morning so that you can get an idea of what your normal temperature is. Mine is 36.2 to 36.5. When it gets to 37.5 or above I take my temperature every hour. If it stays at 37.5 or higher for 3 consecutive hours I would ring the Oncy ward. If it is ever reaches 38 or above then ring them straight away. A higher temperature is a sign of infection - and if you are neutropenic it’s serious!!
HJV, I’m really envying you your lovely veins and sympathising with Lucy over the Portocath. Well done Jay on having the Picc line put in. I hope the rest is a doddle for you compared to that.
I seemed to have slipped through the net. My breast care nurse thought I was just about to have my 3rd lot of chemo and thinks I have passed out of the optimum start time for chemo, as it’s 10 weeks since my op. She’s trying to arrange for me to have a Groshman Line as soon as pos so I can get started. My veins are just too thin to be used.
I have had that nesting thing, also seem to be shopping for food as though I won’t get to the shops again this side of Christmas.
Have a great holiday Annie, and hope everyone has a good weekend.
Thank God for these forums. Although I cant fault my medical care, I do think that no-one actually sits down with you and talks through the side effects of chemo. Yes, they give you loads of leaflets etc, but I would have appreciated a bit of personal input. I suppose they are so busy and to them its just part of the job. But to me, its the most frightening thing I have ever had to deal with and I have spent the last few weeks in a permanant state of terror. Only by reading all of your posts,both good and bad, have I mananged to retain some sort of sanity. Incidentally, I have now had my fist FEC and touch wood, not as bad as I thought up to now, but i realise it is early days and i still have the trauma of losing my hair to come.I know it will grow back but i dont think they realise sometimes how emotionally distressing all of this is. Or is it just me being a wimp! I am trying to continue to take strenghth from you all
It is distressing to lose your hair, and starting chemo is very scary, but you will get through it.
Lots of us on here had long (and in my case seriously long) hair before this and it is traumatic getting it cut never mind anything else. All I can say is that for me, there was a degree of taking control by deciding to get my hair cut (still have my pigtail in a drawer a year on!) and in the end getting my head shaved when it fell out was actually quite a relief and liberating. If you’d told me that before I started I’d have said you were nuts. A year to the day from starting chemo I now have hair about 2" long which is thick, shiny and wavy (I refuse the word ‘curly’). I’d never have chosen to have it like this, but at the moemnt I am delighting in it just because I have hair!
Be kind to yourself, and may your se’s be few and small
Well done to all who had chemo yesterday, hope you are feeling ok today.
I had my portacath fitted yesterday and am in quite a lot of pain today which I was not expecting. I think that this is the worst thing I have had done so far, including chemo. Although I have not had my lumpectomy yet. Feeling really down now as I have had to cancel my plans to go out with a friend tonight. How did your portacath fitting go ginge? Has anyone else got one, if so did it cause you much pain after?
This meant I had the cold cap on for about 5 hours as they sorted it out, felt like a snowman by the end. Everyone was really kind though. Have to go back in to see if the Portocath can be sorted out next week.