Things you wish you had know!
Comments
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Those eclipse ones0
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I am glad I found out about the Penguin Cold Caps through this network. I am on my third round of TCH and still have most of my hair. It has thinned a fair bit and I dont know if it will last the 6 rounds but I am glad to have hair at the moment as I am barely coping with all the other stuff. It just helps. The caps make chemo day fairly unpleasant but its worth it to me. I am a private person and I dont really want my BC to be public knowledge. My family dont understand this but if I had irritable bowel syndorme or any other condition it would be understandable if I didnt want to make it known. I dont know why it is hard to understand that I dont want people knowing about my health issues (if I can help it). The privacy issues and the small (but signficant to me) chance of permanenet hair loss due to taxotere spurred me to hire the cold caps.
I also ended up in hopsital due to mucositis and a related infection on my first round. Since then I have sucked ice cubes during Taxotere and have had no probs. The hospital offered me icypoles on my first treatment but try negotiating that with ice mits on!!
BTW. I realy admire the brave and beautiful women who are not afraid to wear their baldness and bc. Initially I thought I could be that woman but I now realise and accept that its just not me and I am glad I took time to refelct and make the decisions I have made.
Love and courage to all..however you choose to do it.
shat
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Hahahaha I love the shopping bag boob! I can picture the half panicked search of the car looking for a fake foobie lol. I'm 35 years old and have grade 3 invasive ductal cancer with her2 positive and lymph node involvement.
My tips would be: To hunker down with your support people in the early days where you can and cry/scream/rock/pretend/laugh whatever it is your emotional self needs let it have but be assured that although the days and weeks after initial diagnosis are more like a nightmare than a journey your mind and spirit will work through the shock and trauma and you will find your rhythm and I guess your acceptance. I found that there is a lot of medical information available but the real issue is your emotions in the early days. Nothing will make that part of a cancer diagnosis easy so you need to give yourself whatever you need
Write a post on BCNA, the women in here will come to your rescue with knowing acceptance. the response from my first blog on here Helped me immensely
don't think round 2 of chemo side effects will be the same as round 1. I'm sure this goes for all rounds but it's best to go day by day and not assume that you can plan based on what happened last time.
ASAP link with a breast care nurse. They are invaluable for advice and information on everything breast cancer. I found when I was overwhelmed by pathology results and diagnosis etc that my nurse was able to translate the info into real language and to ease my anxiety and fears.
Ms lymph node clearance cases nerve pain in your arm, breast, back and side. This is normal and can last 6 weeks. Numbness can be ongoing for much longer but again it's normal.
Often surgeons and other medical professionals will not tell you much unless you ask. Things such as the nerve pain, what to do with your dressings, how long you will be in hospital etc. you won't always think of these things ahead of time so be ok with seeking out the answers after the fact. Use your breast care nurse. I had surgery last week to have a port put in to my chest for future treatments and woke with incisions in my chest and arm. Only yesterday did I find out that they changed their mind and put it in my arm instead! And that's only because I asked my breast care nurse what the arm incision was for!
Don't trust your bowels. Constipation can change to diarrhea quicker than you think. Keep some prune or pear juice in the fridge just in case but one lire if prune juice in an hour to too much too quick. I don't think you need the story for that lol
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keep a journal. Even if you only write in it when your feeling crappy it is surprisingly therapeutic To vent without judgement or helpful advice.
Keep a notebook in your bag and write down questions for your medical team as they come to you. It helps with anxiety and forgetfulness. Just remember to ask at your appointment and to WRITE DOWN the answers lol
ending up back in hospital is normal. Don't think you are dying or that they are going to stop the treatment. Temperatures, infections and neutropenia is normal and treatable.
Set up Skype in case you do end up neutropenic or away and isolated from family. This really helped me when I couldn't see my 3 year old for a week.
Be prepared for the bad days to keep coming back. Just because you think you have found your stride doesn't mean you won't be kicked back down again. It's ok, just take it, pick yourself back up and go forward.
i agree with cutting off your hair early. I had no idea that it died so quickly. One day it was looking almost normal and I felt I wasn't ready to cut it off, I would keep it until it was falling out properly. The next day I had s bald strip down the centre of my head and crazy amounts of thinning on the sides of my head. This hit me hard as I went, in my eyes, from looking normal to looking like I had cancer. Emotionally it was like a re-diagnosis. Don't wait!
have head scarves ready early. the wig you ordered online may end up looking more like the hair of Ridge Forester than that beautiful blond in the picture!
have a bullet juicer or similar that you can blitz up nutrient rich smoothies in for those days where eating just hurts too much.
Accept help from whoever offers. Sometimes it's hard but you don't know what tomorrow is going to feel like.
Have a bamboo beanie to wear. A bald head can be very cold! I took a while to figure out why my head hurt and it was actually the cold.
Ok this is the second time I have written this essay and hopefully it works this time! Hope it helps0 -
Hi,
I'm now on the count down to my last chemo. 3 lots of FEC, 3 lots of Taxotere. For me FEC was a lot of nausea & diarroeah. Taxotere completely different, lots of fatigue & excruciating constipation.
So, lessons learned. For hospital, take your own pillow. Anything from home is a welcome comfort. Treat yourself to some fab button up pj's. Is you can take books, movies etc loaded on a tablet of the times you need a distraction. Keep moving - I used to circle the ward several times a day carrying my drain bags
I had my hair cut short to help cope with the hair loss and then had a 'shave party' with my kids when my hair started to come out in handfuls. And yes my head was really sore.
Try to find a satin or silk pillow case to minimize stubble discomfort when you lose your hair - I found it really difficult to sleep with stubble catching all the time.
Have anti diarroeah and constipation medication on hand always.
If you have FEC ask for a heat pack on your arm for your treatment. I found this really helped minimize the stinging and discomfort.
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Well...... let me see... there are a bunch of things that are fading in my memory now!
I was treated with FECD, 3 doses of FEC and three of Docetaxal, or whatever its called.
- One weird thing I wasn't warned about was as each FEC dose went in, I lost the ability to focus my eyes. Being stuck in bed without being able to read or watch telly is very dull, but I discovered audio books. There are good recordings of Jane Austen on librivox and since I know the stories backwards, it didn't matter that I kept falling asleep.
- All the way through I kept walking. A bit further every day until I could walk briskly for an hour and then it was time to be squashed flat again.
- I took fish oil and vitamin D throughout because both have been shown to increase the efficacy and reduce the side effects of chemo. Vitamin D in particular has been shown to increase the efficacy of docetaxal. And vitamin D, when given to poor rats who've had chemo, grow their hair back. My hair started growing back half way through treatment, perhaps because my vit D levels were high. Vitamin D also gets ripped up by chemo so its good to keep takling.
- I was terribly worried about the Docetaxal part, nails falling off and terrible wounds on hands and feet, but I had none of that! In the past 20+ years I've always had chillblains in winter so I thought I'd be in trouble but in fact I didn't have a single chilblain of even the ordinary variety. The UK NHS recommends giving up caffeine if you suffer from chilblains. My onc. was very impressed with how well I came through the Docetaxal.
- I also took glutamine to reduce the chance of neuropathy. http://clincancerres.aacrjournals.org/content/7/5/1192.full That was disgusting but it had the effect of, well, cloggin me up, so I didn't have bad diahoehrra.
Glad its all over. Hope I never have to do it again!
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My Insights
1. It is good to have a pity party but don't make it a habit. Pity parties must include a solid friend and preferably a glass of wine
2. Make sure your counselling skills are up to date believe it or not you will spend more time counselling others to help them cope with the news. When you have it, you have to face it head on!
3. Prepare for the worst side affects, stock up that pharmacy cupboard but being blissfully in denial can take you a long way
4 get a loyalty card with your pharmacy
5 go to a make up salon and ask for advice, use your cancer card and you should come out with a stack of freebies!
6. Drink lots of water helps pump up the veins for those needles
7. Take photos of your transformation, when you look back you realise how far you have come and how much better you are looking
8 tell friends how they can help you and tell them how they can help you better be open and transparent with them.
9 be prepared to lose a friend or 2 along the way. Know that it not you but they are having issues coping with it
10 watch your diet particularly on dexomethasone I wanted to eat everything I didn't eat normally eg cakes, KFC mcdonalds.
11 be careful self diagnosing Dr Google isn't always right. Go to reliable sources
12 don't try and become an oncologist and try and interpret your scans unlike me who thought I had a massive tumour in my lungs turned out it was just my heart sitting perfectly in the right place.
13 when getting a wig make sure you take it to a good hairdresser for a proper cut so it looks natural. I found a hairdresser that donates her time to go with women to choose the wigs and then cuts them. Best thing I ever did
14 practice putting on false eyelashes nothing worse than having them slightly off kilter which happened to me when I was in an interview ...how embarrassing. I didn't get the job as I think I looked a bit like bride of chucky at the time. I am now much better with make up
15 when penciling in eyebrows they should sit 3 finger widths from your brow to avoid that constantly surprised look
16 find a registered lymphodema physio and learn how to do lymph drainage massage
17 live life, enjoy today you may not be able to control the cancer but you can control how you feel about it0 -
Just thought of another one, paint your nails with black nail polish stops sunlight and uv rays getting to them so you don't lose them.0
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Well I'm a little late responding to this one...have been frantically trying to get a bedroom painted for my son who is 12 tomorrow. Atleast he knows I tried right?
So I finished FECD on xmas eve last year then had radiation for february, oh and that was after single mastectomy and reconstruction augusta 2013.
The best point I can add is: You just forget and then realise in the grander scheme of things 12 months on you are feeling ok, well as ok as you would expect.
* I did expect the worst during surgery...was in no pain really. Didnt even use panadol after first 3 days.
* I expected the worst during chemo, not helped by the 4 hour return trip to have chemo...but it was ok. I took the antinausea tablets routinely as the nurses suggested and didnt spew.
* I did get my hair cut short after my first chemo and 15 days later it was gone, and yes it hurt like hell when it was falling out.
* Im not a wig person so just opted for scarves, and probably now own way too many!
* My GP was awesome. They took me in back doors if I needed to go in, and saw me straight away. The chemist also became a very good friend!!!
* The medical system expect you to attend appointments during chemo for radiation even if you are at your lowest point in the cycle, it is fine to dig your heels in and not go, (insert 4 hour round trip again here), stuff can just happen when youre ready.
* those radiation tattoos actually hurt, and are also really evident when trying on dresses with deep v necks...I found that pearler out last week!
* My eyebrows and eyelashes did not disappear until I had completed all 6 rounds of chemo. I found this to be most distressing. Way more than the hair loss off my head. You've finished your treatment and you really look like a cancer patient when your eyebrows and lashes bite the dust.
* Its really easy to burn yourself when you have no body hair on your arms and legs. There is no safety warning that you are near something hot til your skin is melting. Its also really easy to continually poke yourself in the eye when your eyelashes are not there.
* the chemo fog took the longest to lift, and some days 12 months on is still around. Write notes if you want to remember things.
* radiation treatment is actually pretty easy, its when youre finished (and home - I had to go away for 5 weeks for treatment) that the fun begins...said no one ever! The blisters and burnt skin and peeling are foul. I travelled to NZ with my husband and 4 kids 2 weeks after radiation finished(not such a bright idea really) BUT the best thing ever for my skin was some Rotorua mud scrub and daily soakings in the thermal mineral pools. 3 days later, all burnt, blistered gnarly skin GONE!
* Tamoxifen - well Ive had all sorts of side effects, but most have gone...with the exception of the fact that it makes arthritis worse. I have spent winter (I live in the snowfields) with many days unable to use my fingers to do anything. There is no solution to this either apparently.
* and lastly, I have found great pleasure in joining the local gym in April this year. I have weights programs which were initially getting some of those displaced muscles working again, and just getting stronger. I was amazed how quickly I bounced back to strength. I was running 5kms within a couple of weeks, snow skied all winter with my kids, and just spent a week playing hockey at the masters pan pacs(belting the bejesus out of a hockey ball was awesome for increasing lymphatic fluid flow in my arm and chest).
* and one very last one: the chemo curl that everyone says will straighten out within a few months and you'll go back to having straight hair? Well it doesnt always go away. I am learning to embrace my 'fro', looks freaky, but it is what it is.
Hugs to you all.
Lisa
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Well I'm a little late responding to this one...have been frantically trying to get a bedroom painted for my son who is 12 tomorrow. Atleast he knows I tried right?
So I finished FECD on xmas eve last year then had radiation for february, oh and that was after single mastectomy and reconstruction augusta 2013.
The best point I can add is: You just forget and then realise in the grander scheme of things 12 months on you are feeling ok, well as ok as you would expect.
* I did expect the worst during surgery...was in no pain really. Didnt even use panadol after first 3 days.
* I expected the worst during chemo, not helped by the 4 hour return trip to have chemo...but it was ok. I took the antinausea tablets routinely as the nurses suggested and didnt spew.
* I did get my hair cut short after my first chemo and 15 days later it was gone, and yes it hurt like hell when it was falling out.
* Im not a wig person so just opted for scarves, and probably now own way too many!
* My GP was awesome. They took me in back doors if I needed to go in, and saw me straight away. The chemist also became a very good friend!!!
* The medical system expect you to attend appointments during chemo for radiation even if you are at your lowest point in the cycle, it is fine to dig your heels in and not go, (insert 4 hour round trip again here), stuff can just happen when youre ready.
* those radiation tattoos actually hurt, and are also really evident when trying on dresses with deep v necks...I found that pearler out last week!
* My eyebrows and eyelashes did not disappear until I had completed all 6 rounds of chemo. I found this to be most distressing. Way more than the hair loss off my head. You've finished your treatment and you really look like a cancer patient when your eyebrows and lashes bite the dust.
* Its really easy to burn yourself when you have no body hair on your arms and legs. There is no safety warning that you are near something hot til your skin is melting. Its also really easy to continually poke yourself in the eye when your eyelashes are not there.
* the chemo fog took the longest to lift, and some days 12 months on is still around. Write notes if you want to remember things.
* radiation treatment is actually pretty easy, its when youre finished (and home - I had to go away for 5 weeks for treatment) that the fun begins...said no one ever! The blisters and burnt skin and peeling are foul. I travelled to NZ with my husband and 4 kids 2 weeks after radiation finished(not such a bright idea really) BUT the best thing ever for my skin was some Rotorua mud scrub and daily soakings in the thermal mineral pools. 3 days later, all burnt, blistered gnarly skin GONE!
* Tamoxifen - well Ive had all sorts of side effects, but most have gone...with the exception of the fact that it makes arthritis worse. I have spent winter (I live in the snowfields) with many days unable to use my fingers to do anything. There is no solution to this either apparently.
* and lastly, I have found great pleasure in joining the local gym in April this year. I have weights programs which were initially getting some of those displaced muscles working again, and just getting stronger. I was amazed how quickly I bounced back to strength. I was running 5kms within a couple of weeks, snow skied all winter with my kids, and just spent a week playing hockey at the masters pan pacs(belting the bejesus out of a hockey ball was awesome for increasing lymphatic fluid flow in my arm and chest).
* and one very last one: the chemo curl that everyone says will straighten out within a few months and you'll go back to having straight hair? Well it doesnt always go away. I am learning to embrace my 'fro', looks freaky, but it is what it is.
Hugs to you all.
Lisa
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I still have my chemo curl 18 months after my chemo finished. Its a funny looking curl, I am just grateful I have hair, so like you try and embrace it.
Donna
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Wish I'd read all this before chemo. And yes the Claratine...
More info on the dexies and emend before you get the side effects is the big one!!! 1st chemo(AC) most of my probs were from these - 2nd chemo thought Doc said I could cut dexies, so I did - in big trouble next chemo, no no take them just reduced dose!!! Side effects HEADACHES, sudden big ones, sleeplessness, HUNGER, miseries.
Constipation - For me I think caused by the dryness. Cutting out my porridge and amping up the water and fruit and lots of dates (yum) helped me.
Don't overdo the mouth hygene, for me 2 mouth washes with bicarb in morn and 2 salt washes in avo helped, anymore seemed to make it worse. Biotene toothpaste and gum were great though.
If the dry eyes and nose (ie they constantly run, yes like a tap) steam (over the pot of boiling water with a towel) relieved me, for a little while. Wash your face often (the salty moisture dries and becomes crusty) paw paw cream to stop chaffing, stuff the tissues put a roll of toilet paper in your bag it doesn;t cause as many rashes and those little bags of tissues didn't last one day!!
Listen to your body, I didn't realise for ages that the sore mouth was partly from the foods I was eating (toast, crackers, bread) Soft foods eased it a lot. And its not just your mouth, its your throat. I couldn't eat anything pepperminty (just about blew my head off). But I ate lots of salt!!!
The AC chemo I really breazed through (looking back) minimal nausea, tiredness etc. 2nd and 3rd week back close to normal. Then came the dox/hercepton. Oh my god ! Loved those dexies, would of taken more if doc had let me. Have painkillers on hand - strong ones.
Complain a bit more to doc if your feeling really bad. Chemo 7 & 8, I was bombed, no recovery time. So tired (slept 15 - 18 hrs daily) and so cold. Ended up I had thyroid probs (new), count should of been 4-5, mine was 97.... Could of saved a lot of heartache.
As we've all read there is a funny side to all this, you'll see it its coming.
Pam
PS Good points no hairdresser, waxing, shaving, bad hair days. Most people are really nice to you, xtra attention in shops restuarants. And pretty colored lights to watch at night when you can't sleep!!!
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Just a couple of things to add to the abovementioned great suggestions:
? suck ice or icipoles whilst having chemo helps to retain your taste buds
? see your dentist before chemo & have a clean & polish & checkup then just gargle bicarb after every meal. This prevented all mouth ulcers for me.
? be prepared for the worst and hope for the best. (Staying positive is rubbish)
? bc is not a journey but an ordeal
Don't know if I'm qualified to offer any tips as I have a lot of treatment to go but I would have loved a starter kit with all this good advice direct from the source. It's been exhausting finding all the information myself.0 -
ouch ouch ouch ,suffering with jock rash (i think )on my bits,wondering if over the counter stuff will sort it ,any advice appreciated int his heat (
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Just wondering if you've gone in for your operation yet? I hope all is going well and that you are recovering comfortably.
This is a great thread, I've just got a few extra points:
- The hardest thing I had to do in this ordeal was to talk to both my kids (then 8 & 13yrs) about my diagnosis. The Cancer Council's book, Talking to Kids about Cancer was invaluable and helped my husband and I to work out how best to tell them.
- Both my children's schools provided practical help (meals, hampers, child-minding) as well as checking in regularly with both kids to see how they were going. This was a great support, especially during those tough months of chemo and radiotherapy.
- Learning to accept help is difficult but was the best lesson learnt and now I can pay it back.
- Learning to pencil in eyebrows is a new skill which unfortunately I still need to practise as mine are still pretty much AWOL even after 18 months of active treatment.
- Deep purple nailpolish hides all sins.
- Chemo stole my brain so am much more forgetful these days and sometimes struggle to find the right word for something. Am doing crosswords, puzzles, reading and writing to try and find it again.
- I found the Encore Program to be helpful after treatment as it gently improved my movement through water and other exercises, gave me an opportunity to talk with others in the same boat informally about bc and was done in a private session at the local hydrotherapy pool at the hospital so I didn't feel self-conscious about my lopsided swimwear.
- Weird side effect: iris colour has gone from "polluted blue" to "murky green". My eye colour always went green after a couple of wines, now they seem to be permanently that shade!
- Despite our best efforts, crap happens; eg after my first chemo I was hypervigilant about hygiene, temperature checking, sanitising everything etc only to have my son come home with chicken pox and so I landed in hospital for a week!
Jane x
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