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May 2017 chemo starters

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Re: May 2017 chemo starters

Hi Ruth, I only did 2 cold caps as my hair started falling out at about 4 weeks. I shaved and now after finishing my chemo in September have new growth. Slow but there! 

Hang in there and best of luck!

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Re: May 2017 chemo starters

Treehouse 😘😘😘glad you managed some sleep lovely and glad you can see 🌲 πŸŒ³πŸŒ΄πŸŽ„πŸŒ΄πŸŒ³πŸŒ²πŸŽ„from window😁sending some πŸ‘ΎπŸ€–πŸ‘ΉπŸ€–πŸ‘ΎπŸ‘ΉπŸ€–πŸ‘ΎπŸ‘Ήto eat away infection and get you home soonπŸ˜˜πŸ˜˜πŸ˜˜πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Thanks for the help ladies think I will get an even shorter cut after FEC 3 (longish pixie now) and see where we go from there. I invested in a fab wig anyway so have that to use. treehouse so sorry to read you are in hospital β™₯️β™₯️ πŸ‘ΎπŸ‘ΎπŸ‘Ύsending you a few chomping monsters too.
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Re: May 2017 chemo starters

Treehouse, glad you managed some sleep. The picc line will be your best friend. Here are some monsters to help with the chomping πŸ‘ΉπŸ‘ΎπŸ‘ΉπŸ‘ΎπŸ‘ΉπŸ‘Ύ πŸ˜‹πŸ˜‹ those last two are the monsters going yum yum after gobbling up the bugs.
Have a restful day if you can!
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Re: May 2017 chemo starters

Hi Ruth sorry I didn’t cold cap or have fec but Hair started falling week2 lots of scalp pain so grade 4 shave week 3.
No more pain.
I know watching hair go is not great but honestly in the big picture it is th last of my worries.
Mine is growing back lots now.
Nice not having to brush or style while in hospital.
Still in my side room. Managed 3 hours sleep between each iv. We have made them go slow due to vein pains. Picc line Tuesday I hope. Can you believe 6 months of Chemo and NOW I get a picc. I can see trees from my window.
Imagining piranha chomping monsters eating the infection in my heart.
( well it worked on wally)
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Re: May 2017 chemo starters

Hi Ruth, I'm from the July thread but also hang out here a lot! I didn't cold cap, but same as Heather, I had a very sore and sensitive scalp during Fec. I clipped my hair very short and wore a soft sleep cap, my head felt very scratchy. By the end of fec 2 most of my head hair had gone.
So I'm guessing this sensitive head thing is nothing to do with the cold cap. I'm sure someone who did cold cap will reply soon.
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Re: May 2017 chemo starters

Ruth, I didn't cold cap but had a very sensitive head after 1st FEC. This was when my hair started to come out. The feeling I got was like a sunburnt scalp. It was so bad that I had my hair cut very short to relieve the pain. The weight of my hair just moving as I walked or moved my head was bad.

 

The cold cap isn't guaranteed to prevent hair loss. My hair started to grow back, after having a buzz cut 2nd chemo then all falling out, at the end of cycle 3 of FEC. Now 3 months since last T and have a short pixie cut which I really like. 

 

Can't remember who tried cold cap on this thread, seems ages ago since we all started!

 

Heather

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Re: May 2017 chemo starters

Good evening ladies I hope you don't mind me popping in from the October thread and asking some advice from any of you lovely ladies who cold capped during your chemo?

I am cycle 2 FEC and have had a fair amount of hair loss this cycle but evenly spread and maybe what you might reasonably expect to happen. However I have also got a very sore and sensitive head and I don't know how much is chemo and how much might be an effect if the cold capping. Last chemo I was hooked up for hours - 41/2 to be precise - which is why I wonder.

Did anyone also have quite a lot of sensitivity but continue to cold cap and if so did the sensitivity get better / stay the same or did it potentially get worse?

Thanks so much for your help. Ruth β™₯️
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Re: May 2017 chemo starters

Treehouse, do glad you have a side room, I hope you can keep it as long as you need it. It's a pig to be in there at all, but if you can get some decent sleep (between doses of IV stuff!) at least you might be a bit better able to stick it out. Night night and big hugs.
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Re: May 2017 chemo starters

So pleased you have been moved Treehouse, sleep tight and sweet dreams.

 

H

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Re: May 2017 chemo starters

Thank goodness for that Treehouse, someone finally saw sense. Long stay with fast pulse requires a separate room for quality sleep to help keep you calm. Why are they so easily administering happy pills when it's obvious that the problem is lack of uninterrupted sleep?  I'd be balling with sleep deprivation! I just hope you manage to keep that room now. Sweet dreams my lovely. πŸ’— ☁️ Xx

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Re: May 2017 chemo starters

Mishy fingers crossed you get it, let me know how you get on.  I was on another thread and a lady on there got told she couldn't apply for it which I think is wrong anyone who goes through cancer treatment should apply. It is said that the fatigue from the chemo can last two years and also look at poor treehouse who is now poorly with something else I think it is best to get this in place and you don't have to worry about finances. When I was first diagnosed because I had been laid off the month prior I was only able to claim esa and we really struggled financially for the First 3 months and because I had never claimed in my life I didn't have a clue what we were entitled to, it took me a lot of research and filling forms in but it was so worth and my pip took 17 weeks to sort out, I applied in July and finally had confirmation in October and it was all backdated 

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Re: May 2017 chemo starters

Hi treehouse 😘😘😘great news you have got a side room lovely. Try and get some sleep and rest darling❀️❀️❀️❀️Big hug and love πŸ’•πŸ’•βœ¨βœ¨shi xx
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Re: May 2017 chemo starters

Quick update 24 hours of water works. The nurses took pity on me. Dr came to offer me happy pills but after a long chat agreed a move to a side room was beneficial. Don’t know how long I will be here but happy for now. Thanks for tips and understanding x x x
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Re: May 2017 chemo starters

Misyangel I have applied for mine too the format. Is off but I got a macmillan welfare rights worker to fill in my forms with me my Maggies Centre had a welfare worker and most hospitals have macmillan advice centres I got an extension off them till I got app with the lady who was fab, my SSP runs out on 10th Dec and not finished treatment so If I get it it will come in handy till I get back to work! I hadn't even thought of it till I was told I should apply, so we will see!!!
Treehouse I hope they can sort you a separate room so you can get some sleep, if you are staying in for a few weeks they should try and accommodate you a little, you are having a tough time of it so I'm pleased you are back on here the girls will be there when you need a chat x
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Re: May 2017 chemo starters

Oh treehouse, that isn't acceptable . You cannot have all those sleepless nights. Hope they see sense and move you. Xx

Had lovely day today went to spa with my sister and am off out fo dinner with hubby 2nite for my birthday on Wednesday.

Hope everyone else enjoying the weekend x
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Re: May 2017 chemo starters

Shi, the whoopee cushion sounds like a better plan! πŸ’¨ πŸ˜‚

Rosie, glad to hear you are doing well and enjoying the business of doing nothing. πŸ‘πŸΌ How are you getting on wth Physio? I'm really starting to push out of my comfort zone and getting better movement. I can now get about 80degrees on elbow to head exercise so only 10degrees to go. I still find touching the top of my head pulls painfully of my armpit but just have to keep pushing through the pain barriers. The Physio is like a surprise assault course thrown into the triathlon!

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Re: May 2017 chemo starters

Good point mai, I forgot you’d been forced into doing it behind a curtain, treehouse ignore suggestion of oh bring in senokot. You could get him to smuggle whoppe cushion in and then keep doing it so the others complain about you and get you moved that way, worth a try so you get some peace and quiet πŸ˜˜πŸ˜˜πŸ˜˜βœ¨βœ¨πŸ’•πŸ’•shi xx
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Re: May 2017 chemo starters

Andi - good to hear from you, sorry to hear you have vertigo. Just another thing to contend with! Hope it clears up soon.  

I’m busy doing nothing, surprising how much time that takes!

 

Had lots of visitors yesterday, so with all morning getting ready and an afternoon/evening of visitors that was my day. It gets much easier every day and you can go out for a walk, not far, but it is nice to get out.

 

Love the salmon and cucumber cake Mai. Very artistic

 

 

 

 

 

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Re: May 2017 chemo starters

Oh treehouse I really feel for you. So glad you decided to stay with the forum. Although we have never met I do feel that we all now have such a bond formed since May, more so than some people I’ve known for years.

 

Hopefully they can give you your own room even if just for a short time to process what’s happened away from the glare of other patients. When my daughter was born and seriously ill I had my own room for a week when things were really bad and then moved to the warded she improved.

 

Not sure why I had my own room after my latest op, either because of the spell in intensive care or the fact they had no beds on the ward. I slept much better at night though, still noisy and breast checks every half hour with ultrasound to make sure my new boob hadn’t died!!  But own toilet and shower was great, you most certainly deserve it, hope it can be arranged.

 

Thinking of you and sending all the good luck vibes I can to get you home before Christmas.

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Re: May 2017 chemo starters

Heather I would go to citizen advise as they complete the form for you and the lady I saw was an expert at filling them in and was disabled herself.  When you fill it in you have to do it for your worse days and not how you feel day to day, I was lucky as I was going through chemo when I completed mine and they don't come and assess you at home when you are having treatment.  It is well worth applying for and see what happens, I was also allocated it for 3 years which means I don't have to rush back to work and because I was allocated the pip it also meant the working tax credits it a higher payment because of this.

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Re: May 2017 chemo starters

Misyangel, my PIP form is in the post to me and just wondered what you put on it to claim the payment. I have difficulty with my hands and walking first thing in the morning and if I have been sitting for too long. 

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Re: May 2017 chemo starters

Shi, the senokot advice: funny but bad advice! When I had diarhoerra I just ended up having to use a commode as they had no single rooms free, so that strategy may only result in dehydration and pooping behind a curtain! I think its worth pushing for a room if you want one with the longer stay. πŸ’—βœ¨xx

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Re: May 2017 chemo starters

Treehouse so sorry you are back in hospital...so rubbish you are in a ward...sleep is hard at the best of times but when you are disturbed so much worse...speak to your care team ...you are a strong lady am thinking of you and hope you get some rest today🀫

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Re: May 2017 chemo starters

Treehouse how awful for you and I think it makes things 10 times worse when you get no sleep, you could try bose noise reducing headphones, I put audio books on my ipod and fall asleep listening to them which blocks everything out,


Andi71  what a great idea to have a year off, I was lucky in the sense I was laid off the month before diagnosis and I have made the decision to not to look for work until the herceptin finishes which is August next year (I didnt want to be starting a new job and telling them I need time off every 3 weeks for injection) but I then said to my husband that I may not go back until after xmas next year and would like a few months with no treatment or hosptial visits before resuming normal life.  Also I managed to apply for PIP in July of this year and was allocated that in October so I have no rush now to get back to work, and also beause my husband works we have also been able to apply for Working Tax Credits which means I am essentially getting paid more than when I was actually working which is crazy.  1st Herceptin Jab is a bit stingy, I have my second one on Tuesday but they supposed to be coming to my house to do it but still not had confirmation yet, so I could be going the hopsital who knows lol

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Re: May 2017 chemo starters

Treehouse 😘😘😘😘sorry you have had a πŸ’©πŸ’©night, agree with heather, speak to your care team and nurses on ward to see if you can be moved to own room or at least next to a window. You need piece and quiet and rest, ask them nicely then if after a day to two, kick off and keep pressing the buzzer, tell them you need help to the loo, tell them you need them to ask the others to be quiet, get your oh to smuggle senokot in so you get the **bleep**s so they give you own room with a loo, try whatever you can to get your own room soon😘😘tr and catch up on some sleep if you can my darling, you need to keep your strength up and you are kick ass treehouse, so concentrate on kicking its ass sooner than they say and get home for Christmas, focus and believe and you will do it. β€οΈβ€οΈβ€οΈπŸ’•πŸ’•πŸ’•shi xx
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Re: May 2017 chemo starters

Treehouse, sending hugs. I know what's it's like to be in hospital and prodded and poked in tthe middle of the night with noise and light disturbance and yes, it's tough at times when you just want to sleep. A simple thing, sleeping yet so complicated in hospital. I recommend the earplugs and an eye mask to give yourself some reprieve from the noise and light pollution.  When I was last admitted I was woken by the woman in the bed next to me moaning to the nurse about the woman opposite snoring! I thought to myself, I think your moaning to the nurse is worse than the woman snoring, at least she doesn't know she's doing it! It starts to drive you batty with all of these noises and you just want everyone to shut the *bleep* up and go to sleep, including the nurses! Like Tatyana said, this too shall pass. I think you're going to need your guided imagery meditation. Xxx

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Re: May 2017 chemo starters

Tree house, you are in my thoughts and prayers. I hope you are able to get some rest today. 

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Re: May 2017 chemo starters

Treehouse, you have made me cry because I feel so sorry for you having to be stuck in hospital for so long with such annoying room mates. If you are in for so long they need to find you a room on your own or prescribe sleeping tablets. Please mention it to your care team, rest and sleep are also part of the whole package to make you better along side the meds they give you.

 

Sending hugs and doing a πŸ’ƒ for feeling better and lots of sleep.

 

❀ Heather

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Re: May 2017 chemo starters

Andi, a year off is wonderful idea. You will have some great time to really enjoy life now that you know what it means. Cancer can do that. And yes it should be compulsory for all of us! It has cheered me up so much just thinking about you taking the opportunity. Go girl!
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Re: May 2017 chemo starters

Treehouse my lovely, what can I say? Only to send you all the very best wishes and love. This too will pass. It's a cliche but it's true. You are one strong woman and you will get through it. Meanwhile, you have official permission to come on here and moan as often as you like.
It may sound silly, but have you tried earplugs? It may help a bit with the horrible noises on the ward. (Bumping off some of the other patients might help,too.) As for this habit they have of giving you an IV drug at 3 am when you could just as well have it in the daytime, I've experienced that a couple of times and it drives you crazy.

So, lots of hugs to our poor strong lovely crazy treehouse.
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Re: May 2017 chemo starters

I have had 1 hour sleep. There are 3 old ladies here that wheeze or snore. 10 min after lights out nurse came in to wake one, turn the lights on and start asking admission questions. Half an hour later another woman had detached from her monitor. More lights. I finally got to sleep then an hour later my turn for 4 hourly iv. Oh and finally they give me a another drug I need once a day At 2:30!!!!!!! For an hour iv.
So now at 2:30 every night I will be getting this .
I. Am in a corner without a window flushes all over the place and disrupted sleep. I will truly go mad if I stay here for 6 weeks.
😰😒πŸ˜₯πŸ˜’πŸ˜°πŸ˜­πŸ˜“πŸ˜ͺπŸ˜΄πŸ˜΄πŸ˜¬πŸ€’πŸ˜±
If you thought you had no control over your life during chemo you have no ducking idea!!!!!!!!
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Re: May 2017 chemo starters

Andi, sorry to hear you have vertigo and hope it gets better soon. Is it something you've had before or is it a post chemo apocalypse thing?

Jay, lovely that you caught up with a good friend. When you're with good company egg and cress is all you need! 

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Re: May 2017 chemo starters

Treehouse, you can do this and you will get through this. I know it feels like the rug has been pulled from under you again but you now have a diagnosis and you're in the right place to get better. Just be kind to yourself. Hugs. πŸ’— ✨ xx

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Re: May 2017 chemo starters

Such a lovely idea Andi - I'm sure you will really enjoy the year and make some precious memories. There's plenty of time for the working world life to return..... xx
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Re: May 2017 chemo starters

Jay - yes totally agree with time off part paid for cancer patients πŸ‘ for a year. There’s a lot to get over but also a lot to look forward to and enjoy. I’m going to selfishly fill my days doing the things I love surrounded by the people I love. Then get back into the working world afterwards.
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Re: May 2017 chemo starters

Jay - It’s so good to hear that things are good for you, we need good news πŸ˜ƒ
Thanks for the reassurance about the Herceptin jabs! I must admit, every 3rd week will come round quickly, thank heavens it’s not every week!
I hope your rads go well on Wednesday, you must let us know how you got on.
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Re: May 2017 chemo starters

Hi Andi - I'm thankful that life for me is good right now I'm over the surgery and starting rads next Wednesday 15 sessions to the chest wall and upper clavicle - can't wait for it to be over.

My lunch was lovely - a real treat and a great catch up with a very dear friend.

I've known two ladies with vertigo and both have said how unpleasant it is - so I do feel for you.

Good luck with herceptin jab - they're really not that bad - occassionally I get a sting at the end when they put a little plaster on! but it only lasts a couple of seconds. My nurses always set a timer for 4/5 minutes and it always amazes me when it goes off - as I'm always so busy chatting with them that the time flies! With them being every 3 weeks makes the months fly by.

I do like your idea of a year off - in a way that appeals to me but I do only go to work for a couple of hours each day so not too bad really - it's just in the middle of the day that's a bit of a pain.

I think as cancer patients we should be entitled to this idea and on half pay - after all if you have a baby you get time off with pay - of course, having a baby is a choice - being dealt cancer is not a choice! xx
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Re: May 2017 chemo starters

Treehouse - πŸ’• sending you a big hug. Each time we (you) have something new thrust on us it’s scary. We don’t know what to expect. But as you’ve (we’ve) proved, we get through it! Moving you to a ward just means that they feel your stable enough to do so, which is a positive petal. You are still in hospital, your in the right place. At ANY point you can pull that call bell for a nurse. Deep breaths. You are strong. You can do this. Have faith that you’ll be ok. Try not to work yourself up because you’ll feel worse. We are all here for you. πŸ’•
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Re: May 2017 chemo starters

Jay - how’s life with you? Your M&S lunch with your friend sounds blissfully lovely. Vertigo is a bu**er! As soon as you try and move you feel nauseas. On tablets for 7 days to make symptoms less severe. It’s funny you know, you stop chemo and then something else pops up! I’ve got 1st Herceptin jab next week 😬 I’ve already been told it’ll sting, but they’ve said if it does they’ll administer it slower. Another year of fun every 3 weeks just like you.
Told Work on Wednesday I need a year off, just to enjoy life really as this year has just been about not living as such, it’s been about stress, worry, hospitals, procedures etc. I’m waiting to see if the company agree to holding my job open and get someone in on a short term contract to fill my shoes. I hope they do. But if not, what will be will be πŸ˜ƒ
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Re: May 2017 chemo starters

Oh yes you can Treehouse - you're a super woman like the rest of us! You're entitled to a meltdown but only for a little while!! and i repeat you can and you will do this.... xxx
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Re: May 2017 chemo starters

Just been moved to a ward. Total meltdown. I can’t do this!!!!!!
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Re: May 2017 chemo starters

Rosie - how are you getting on? Are you going stir crazy at lack of being able to do stuff post op? I’m hoping you’ve found something to keep you amused and occupied!! I remembered in my meeting with plastics team them saying β€œyou only use your hands for mealtimes, no doing anything more strenuous than that”.
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Re: May 2017 chemo starters

Mai the Sweedish Sandwich cakes looks interesting - never heard of it before - looks far more colourful than the egg and watercress one I had today....! x
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Re: May 2017 chemo starters

Well done Tatyana - back home where you can recover quicker. I'm intrigued by the dressing with a vacuum thingy - I never had one of those!

I'm delighted to hear you left the Alien in the lab!

Enjoy a resting and relaxing weekend x
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Re: May 2017 chemo starters

No I didn't go Black Friday shopping!  I decided instead to meet a friend for lunch after I'd been to work and she treated me in Marks & Spencer cafe with a egg and watercress sandwich and a delicious mince pie all washed down with a fresh apple juice!  It really was a lovely little treat!

 

Got back to my car at 430 - so a bit of a lengthy lunch!

 

So pleased to hear your bra fitting went well Katie.

 

Lovely to hear from you Andi sorry you've got vertigo - i've heard that's really horrid.

 

I do hope Treehouse is feeing brighter.

 

How did your 2nd rads go Wolfee - long journey by taxi - how did it go?

 

Mai - just trust your instincts and try not to worry about it all too much - life has got to be fun and enjoyed now!  I'll be interested to hear about the blood test results for menopause - I really do hope those monthlies don't return for me....!

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Re: May 2017 chemo starters

Tatyana - Free of Hospital!! πŸ‘πŸ»πŸ‘πŸ˜ƒ I bet that’s a relief! I hope your β€˜battery thingy’ doesn’t keep you awake, the pillow sounds like a good option. Hope you get some rest and enjoy being home x
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Re: May 2017 chemo starters

Currently got vertigo ... feel like a drunken sailor out on the choppy high seas! πŸ€ͺ🀒 Not easy reading and typing ... trying to catch up tho! πŸ‘
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Re: May 2017 chemo starters

Katie - glad your bra fitting went well and that the woman fitting you made you feel comfortable x
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Re: May 2017 chemo starters

(Message to Treehouse)