This past two months have been a bit of a whirlwind. I had a routine mammogram on March 9th, just before they stopped doing them. I was recalled on April 1st. By April 22nd I was in hospital having a masectomy and June 1st I am starting Chemotherapy. In the middle of this I had my 70th Birthday and Covid19 was rife!
I am Grade 3 .oestrogen neg and Her2 positive. There was no signs of it having got to the lymph nodes. I am having EC Chemo, plus Docetaxel, plus herceptin and Biophosphates.
I will be glad when the first session is out of the way as it is the unknown which causes the stress.
I have already bought my hat!
Anybody had similar treatment to me? Just really wanted to write it down as it is still a bit unreal.
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joycen60
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I was diagnosed in 2018. I remember everything happened so rapidly, one test after the other. For me, my concern about chemo was the unknown. But, they're mainly known unknowns. I lost my hair, had lots of fatigue, other expected "issues."
The strange things: changes in taste. Even water didn't taste right. My husband bought me flats of purified bottled water, and that saved the day. I drank at least 2 liters per day. I'm okay now without that. But, hydrate, hydrate, hydrate.
Also, my sense of smell was turned up like 20 fold. I could smell a piece of lettuce from 30 feet away. We went to a favorite restaurant of ours for lunch one day, and I could not tolerate the smell, that no one else could detect, and we never went back. Another restaurant, run by a friend of ours, was C-l-e-a-n, and I told my friend his staff is taking good care of the place.
Also, chemo nose. You lose hair everywhere, including eyebrows, eyelashes (which could cause a lot of tearing and weepies), and...nose hair. None of this hurts. So, chemo nose is when, from out of nowhere, your nose probably from one nostril, just runs like a faucet for like a minute to flush something out, and then stops again suddenly like it never happened. It's a weird side effect, and it still happens now and then, totally without warning.
I know this is a really frightening time, but I just wanted to share a couple of things from my experience that I'd rather not repeat, but weren't too bad.
Thank you for your reply. I am already practising drinking plenty of water as everyone that I talk to mentions this.Also thanks for the heads up about smell. At least I won't be going to a restaurant in the near future.!
I experienced all of those things but a couple more I lost my fingernails and toe nails but that didn't hurt either as they came off when the new nails regrow, its scary but once the treatment starts and you are in their hands it becomes less scary good luck I am two years on and all is good
Thank You for your reply. Yes I am sure that once it starts I will just get on with it. Hopefully not as bad as I think it might be- A bit like when you go to the dentist and when I started having regular eye injections!
You are like me five years ago. And I am well and happy.
I didn’t have all the symptoms that the previous poster had, but I did have some. Like a drippy nose, in my case only when I used my mouth such as eating, drinking and going to the dentist, with some blood.
Some brain problems - like not being able to navigate walking to the shop when I had done it hundreds of times before.
Arm (where the chemo went in) painful.
Because you will be on steroids around the day of your chemo, that will support your mood, then it (your mood) goes downhill with a black cloud surrounding you. Then suddenly, the black cloud goes and you are (nearly) normal again. I also had to have a blood transfusion halfway through as my blood count too low.
I found that telling everybody about it was helpful, and laughing about it gives your friends the courage to be with you. If you keep quiet your friends dont know what to do and may avoid you - to save you pain. Let your friends in.
In my case the treatment was impeccable but the administration around it was very poor. Get someone you trust - husband? - to check everything because your brain may not be able to and the admin could well be wrong.
My sense of taste changed, for the week after the chemo. A couple of toenails dropped off.
But you will feel really good when the chemo is over and you can look to the bright sunny uplands.
Yes, chemo brain is a thing too. It's hard to explain until you experience it. I can drive toward a destination in my own neighborhood, where I've lived for over 20 years, and still second guess which block it's on, or which side of the street. Or, I lose a word or name midsentence.
I can get frustrated when those close to me try to help by finishing a sentence for me, or try to pick the word for me. Right or wrong, I can get easily annoyed with that sometimes.
Thank You for your reply. I live on my own so friends are so important to me. I have told everyone as I may need their practical help even if just someone to listen to me. I have very good neighbors as well so I won;t be short of help. I don't do negativity on any level/ topic and like you I have tried to make a few jokes ~ at least I won't have to worry about getting a hairdressing appointment when they are allowed to work!
It is useful to see the side effects that you have had rather than a long list that you might have. A neighbor has been through this a few years ago -albeit that she was a lot younger than me,so she can be a source of support as well.
Get yourself a notebook or write a ‘journal’ on computer......all appointments, your feelings, side effects etc.....useful and interesting to look back at the things that have happened since diagnosis. I was diagnosed with routine mammogram august 2014. I wouldn’t have remembered all the tests etc. My ‘diary’ is just read by me at the moment, but shows me how far I’ve come on my journey....(hate both the word journey and the word positive!) Someday others might get to read my scribblings. My very best wishes to you.
Thank You for your reply. I am not a feelings person- never found it easy to write a diary which used to last about a week but I do like the idea of writing down all the tests and appointments and side effects etc just in case people ask me for advice later. At the moment I have bits of paper all over the place with phone numbers etc- I need to put them all in one place.
Hello Joyce , from the other replies I see you have some practical advice , and similarly I had surgery for stage 3 breast cancer , a hefty tumour I hadn’t noticed , so required radical mastectomy plus a few lymph nodes , then chemo. FEC and Paclitaxol. It’s a tough journey , full of surprises , and many side effects ; fatigue is ever present apart from the steroids you have afterwards to boost your system . Watch your temperature as if it elevated over 37.5 call your medical helpline team in case of reduced white cells leading to infection ( the expert onco team will sort out ; could mean a brief admission with antibiotics etc) . H2o yes very good idea after the chemo I v. It’s possible the dose can be reduced if it’s a bit strong for your system . Eating normally will very likely go.
I lost weight and could hardly eat much but found a few old favourites despite my daughters and friends cooking for me. Smoothies , juices, soups, were quite well tolerated. It will be a challenge but I’m sure you will get yourself some helpful things to get through this. ? Talking books ? Netflix?
Skype? A daily diary? Phone by your bed?
Bath salts ? Vitamin supplements? New pjs?
Favourite ready meals in freezer? Magazines?
Very best of luck and all best wishes in the next few months , Joyce.
Really sorry that you have to go through all this, its such a shock and a whirlwind. Very good news about the lymph nodes. Chemo is not much fun and treatment seems to go on forever. It does end though and I like many many ladies are thankfully on the other side and living life to the full (as far as anyone can at the moment). I know I am one of the lucky ones despite being a grade 3. Be kind to yourself. Its allowed to feel miserable some days and have an afternoon snooze. xx good luck caroline
Sending you a big hug. The unknown is always the worst and all the waiting!!! The best thing you can do is prepare. Make a list. So for example I had a chemo bag for my trip to the hospital in it I put, a drink, Sandwhich/snacks, boiled sweets ( great for the funny taste in your mouth), ginger for nausea, tissues, wipes, some money, crosswords, book, -something to entertain you as chemo is a long process of waiting around for your turn, then the actual chemo.
I bought ginger biscuits, ginger and lemon tea bags, intense hand cream such as Atrixia (your skin can get dry), eye drops, a wig (you can be fitted before it happens), simple face cream cleanser, shampoo, scarves and a soft comfy beret & had my hair cut short, stocked up on comfy pjs, dressing gown, new slippers, stock the freezer with easy meals. You may only fancy light stufff the few days after chemo, keep plenty of cold and hot drinks in. I preferred squash, went off water because of the metllic taste in my mouth. I enjoyes the little fromage frais, easy to eat and not too heavy.
I also bought a small electric heat mat/pad.....better than a hot water bottle as it never goes cold and is light. Throw/blanket for the settee to snuggle under so you can watch tv. And nappy rash cream -wonderful on your bum!
Tidy your house. I found I d have a week where I felt better before the next round and would rush around getting everything ready for the next round. And give yourself a treat!!
You are right to line those kind friends up to take you to and fro from hospital and do your shopping. They will want to help you -let them. I hired a cleaner and a gardener as well.
Always tell the oncologist your side effects, mostly there is something to counter effect them which believe me makes a massive difference.....dont suffer in silence, no need to. There is lots they can do to counter nausea for example. I think I had a mouth wash onc prescribed at one point cant remeber why but I do remember it really helped me. They will have heard it all before so dont think you are being a nuisance. You are not!!
You might want to pack a little bag for hospital just incase you have to go in.....you may never have to though. I was admitted twice for neutropenia sepsis.....when your white blood count goes extremely low. It was ok being in hospital but noisy!! A ready packed bag made life easier. I put my meds in a coear zippy wallet, listed them all, with when I took them. The nurses liked that!!
I had stage 3, very aggressive Her2 positive, estrogen positive bc and had a radical masectomy, chemo, herceptin, rads, reconstruction, estrogen blocker. Am still in remission 5 years on since finishing treatment and well. 😀😃
Thank You for your reply. Well I went to the Hospital but my heart rate was too high. I sat there for an hour but it didn't go down so I have now got to go back to my GP to get it controlled before they can start. Hopefully it won't take too long. It just feels like one thing after another!
Ditto all of the above advise. Only a couple of things to add, my sense of smell was really heightened too and I would advise to get any creams either unscented or citrus smelling, the smell of my handcream really added to my nausea. Also I wouldn't use any of your favourite shower gels perfume and creams etc as afterwards I found the smell just reminded me of chemo.
I bought 2 wigs before I started but never needed them. So I really wasted money. Best to chose one but then wait until you needed it. My hair thinned but the cold cap saved it. If you use the cold cap let them be quite brutal at putting it on as it only works well of it fits well.
I had a pretty easy ride during my chemo, felt a bit rough the first week after each round but didn’t have any side effects other than nausea and bone pain from the injections to boost your blood count and found the 6 sessions went quickly. I was however able to rest a lot as my hubby did an awful lot to help.
Thank You for your reply. I haven't bought a wig yet but have bought a hat. I am thinking of giving the cold cap a miss but haven't really been told much about it yet. Just waiting on a phone call to tell me when to go back now that I have been to my GP and got the pills to stop my pulse rate rising so much.
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