So had a dentist appointment this week and he was super kind, kept asking how I was feeling and whether I needed anything which is great, right?! Well, I think I have become too used to doctors talking about the hard things things that need to be done… surgery, chemotherapy, radiation etc, that a doctor feeling sorry just made me feel like a person with an actual illness. Could also have been post chemo fatigue, but I left feeling more sorry for myself than I am comfortable with. Alright, done, with today’s very random post.
@salbert I definitely know I’m not that organised 
I did get some ginger sweets to suck on during the chemo, but I’ve gone completely off ginger for the moment. Marmite crisps sound lovely, might have to get some of those in my grocery order tomorrow.
Also to your other question, yes… I’m all about the potatoes. Love em and haven’t gone off those yet 
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@taniak - I know what you mean. I don’t want sympathy as it makes me feel worse. I want practical advice, ways to deal with this. This is why the best advice comes from those who have been there and understand. Sympathetic looks and flower deliveries…no thank you! I particularly hated the flowers that kept arriving when the news got out. Nobody has died but it made me feel as if my news was up there with it. I know it was well meaning but I hated it. I do not want to feel like a cancer victim. I want to feel strong and empowered which is where sympathetic dentist misjudged his loveliness.
@kartoffel A woman after my own heart. And now I have to ask what is your favourite form of potato? Mine still has to be the perfectly fried, chip shop chip. Closely followed by roast potatoes. Then crisps. Then baked. Then mash. I could go on. Get the Marmite crisps, you will not regret it. Today’s prayer is that chemo never puts us off potatoes. 
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@salbert I think that’s part of the reason why I’ve barely told anyone about my diagnosis in my real life… I don’t want people to feel sorry for me and act like someone has died. I just want to get on with things and power through this period in my life. Had a lot of bad things happen in the last year in my personal life and the way people would look at you and treat you like you were a fragile, pitiable thing was almost worse than all of what happened.
That said, on to something more important - potatoes! I think my favourite is something like a rosti/potato pancake, crispy on the outside and warm and fluffy on the inside, then chips/roasties/mash or just any potato with cheese. I’m making myself hungry now!
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@kartoffel @salbert that’s exactly how I feel, no one wants to be that little pitiable thing however well meaning the sympathy is.
since we are talking about potatoes, I am pretty much living on roast potatoes, looks like it’s a potato party here
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@taniak @kartoffel - It’s good to establish these things - no sympathy and no flowers, thank you very much!! Let’s power on through. Powered by potatoes!! (Oh…a rosti. I used to work in Vienna and the rosti and kartoffelpuffers there…
)
By the way, anyone who hasn’t booked for the Look Good, Feel Better Skincare & Make-Up Workshop…well…book it! I went yesterday and the bag of goodies they give you is incredible. Really lovely high end stuff and a great chance to meet a load of women in the same boat. I had a lovely afternoon although my make-up didn’t turn out great. I resembled a ghostly skull who had been punched in both eyes but no matter, at least I have learned that purple eyeshadow and a very pale foundation don’t work for me!
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Sounds fun @salbert I wanted to book onto one of those workshops but they don’t have any near me that aren’t in the middle of the day and I’m still working. I know they have virtual ones but I’m motivated by a goody bag…
I just got the call yesterday that I can pick up my wig on the 20th and it’s probably not going to be a moment too soon. My hair is shedding like mad and it’s showing no signs of stopping, even with the cold capping. I still don’t LOOK bald, you probably wouldn’t notice if you didn’t know me - you’d just think I had fine, thin hair but if it doesn’t stop soon I’m going to be bald by next week.
Rough times, but at least there were cheesy chips for dinner last night…
@kartoffel I hear you with the shedding! Mine eventually slowed down so I do still have a full head of hair albeit very very fine and my parting is the worst with a small patch showing my scalp. Hopefully yours will slow too.
@salbert i took your advice and booked a look good feel better session for 17th April, I’m going to use it as an alternative birthday treat seen as I can’t go to a spa! 
I’m prepping for round 3 next week, this will be my last EC and I’ll hit the halfway mark so that’s my positive to take from it. They’re also reducing my dosage due to the severe side effects. So again hopefully an easier session. In terms of potatoes and carbs, I literally live off of roast potatoes and toast for nearly a week after my session. It’s the only thing I can stomach
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The shedding is the worse bit I think !!! No one really tells you how to cope with it falling out everywhere. Gets in your mouth on your glasses and all over the furniture and carpets !!!
Just returned from the hairdresser’s, she cut my hair shorter again and trimmed the wig !!! Think the wig looks better, not entirely sure my hair does. Just feels thinner than ever.
I didn’t have the energy to wash and style it again post the wig malarkey, so I’ve shoved a turban on. Weirdly getting used to being seen out in it is part of the process I think. Popped into Waitrose to get milk with the wig in, felt super self conscious, but did it !!!
I’m known for being a bit eccentric so probably no one will notice anything unusual.
Love Carmen Miranda (for those that are old enough 
)
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@kartoffel I really hope you find the time to go to one of those workshops. The goody bag is seriously worth it! I am taking so much time off work for appointments that I figured one more wouldn’t make much difference. @sammybp - I am so glad you have booked one. You will not regret it. Make sure you book a spa day for when treatment is over. I must do that too, come to think of it.
Let us know how your wig is @kartoffel . My hair is shedding away now so I am expecting to make that call any day. It’s crap, isn’t it, but let’s all celebrate not having bad hair days for a while. Talking of which @Vibby I love it! Or should I be calling you Carmen! The pink vibe is great and I love that you’ve gone shiny sparkly. Thanks for sharing as it helps to know what works and what is possible. I’m signed up for the Headwear, Wigs, Brows and Lashes Virtual Workshop on Tuesday of next week. I seriously need to learn what the hell to do. Eccentric people are the best in my book. I guess it must feel a bit strange to begin with to be out and about with it but going pink and shiny just flies right in its face. You are doing it in style and with pride. All power to you, sister! I’m looking at you and thinking of Jenny Eclair and that’s ruddy brilliant.
@sammybp I have round 3 of EC on Thursday of next week too. I have to have a 4th EC unfortunately so only halfway through. I’m so sorry to hear you’ve had such severe side effects. It’s horrid stuff. Thank goodness for spuds and bread, eh?
Now…girls…I have to share with you that last night I cut up some leftover new potatoes from the previous night and roasted them in olive oil, freshly ground salt and pepper and a sprinkling of herbs and, and, and… because there weren’t quite enough for a carb queen such as I, I TEAMED THEM UP WITH OVEN CHIPS!! GET IN!
Happy Friday everyone. Hope you all have a good weekend.
Salbert
x
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I just did my food shop, but not entirely sure why because my cupboards are stuffed full of all the stuff I’ve craved since starting chemo.
Mad mad mad.
I’d just say a word of caution about strong flavours !!!
My very first craving was Haribo Tangfastics, resulted in a very sore tongue, and the same with tomato and chilli crisps !!;;
So be a little bit cautious.
Fortunately my super soft toothbrush and alcohol free mouthwash held it at bay.
Xxx
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@Vibby Too late. I made the mistake of putting Encona Hot Pepper Sauce on my ready salted crisps yesterday. Oh the heartburn!!
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Is anyone experiencing numb finger tips with their EC. I had it cycle 1, then it resolved a bit and now back cycle 2.
I wanted to discuss it with my oncologist, but they’ve cancelled my appointment because the clinics overbooked 
Hi everyone
I had some numbness in a couple of my fingers - not all of the time just a couple of mornings when I woke up but I did mention it at my oncology appointment this week. As a result of that plus the rash I had and the issues with my mouth they are reducing my dose for my next EC on Monday.
Hopefully that will result in less side effects?
My hair is shedding loads now, I had it cut really short before I started chemo and I didn’t cold cap so it is expected but I’m still finding it difficult, the amount of hair on my clothes and pillow is crazy!! My scalp has been so tender too it’s even painful when I lie on it in bed but this seems to be easing as my hair is falling out so maybe when I am bald at least I’ll be pain free 
.
I’m getting my wig tomorrow so hopefully that will give me a bit of a pick me up. I’ve also bought quite a few headbands and caps so I can mix and match those too .
I did a virtual look good feel better course this morning on nail care which was really informative and apparently we get sent a goodie bag of products in the post so will wait and see what’s in that.
I think potatoes must be a staple whilst doing chemo - I’m loving jacket potatoes with lots of butter and cheese at the minute!! Trying to team them up with a salad to ease my conscience and calories .
Hope you all have a lovely weekend I’m just relaxing at home with family and getting ready for EC round two on Monday.
Xx
That’s why I want to discuss it with the oncologist in case the dose needs lowering.
I had my hair cut today and my wig !!!
I agree the shedding is a complete pain in the ass !!
I have a silk pillowcase at night and it seems to help the scalp tenderness.
My hair feels so thin, although my hairdresser was insistent there’s no actual bald bits yet !!!
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Love the turban - colour is fab 
.
Hopefully you can speak to oncologist before your next chemo. I wasn’t keen on them lowering the dose initially but apparently it’s no less effective?? Not sure how that works though as I will be having my dose reduced to 75%?
Xx
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That’s interesting. Yeah, logically you’d think a lower dose would be less effective !!!
I guess it’s one of those things we have to trust the team on.
I’m playing merry hell with my Trust for pretty awful care throughout.
I feel even if it doesn’t help me, then it may benefit women who come after me.
In some ways having cancer is like a super power !!! I just don’t care if I upset/annoy/rock the boat !!;
Even considered going to the press !!!
Don’t ever upset a woman with cancer 
I developed neuropathy in both hands and feet after round 2 of EC. It’s hard to describe as it’s sometimes tingling, pain, numbness, swelling. Mine was enough to have my dosage reduced by 25%. But what you can do in the meantime is invest in some compression gloves and wear them during infusion days and after. They’re fingerless and Amazon has some. They’re about £7-12. They’re also used by people who get arthritic pain. I hope you get another appointment soon.
On the dosage reduction. Chemotherapy is a big science experiment. Everybody is different. So they start on what worked best based on trials and previous data but then adjust as needed based on the person if needed.
There’s a study that looks into survival rates after dosage reduction. The magic number is as long as you get 85% of the overall amount then those had the better rates. So mine was reduced by 25% for round 3 &4 which would still be 88% of the overall.
That said, the study had people aged 24-77 from memory. And the younger ones tended to not need the reduction.
And after 5 years you would expect more survivors from the younger age groups than the older ones anyway. And you would expect other diseases and conditions to affect the older ones. I’m always interested in what’s behind the study data as it’s clearly not just the dose reduction that would have impacted who is still around after 5 years of chemotherapy in this study.
Anyway, round 3 of EC and no neuropathy. I did use compression socks and gloves and iced socks and gloves this time alongside the dose reduction and I have made myself walk every morning for 45 mins-2 hours even if I’ve had to stop and sit. It’s made a huge difference getting the blood circulating.
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Hiya it’s totally normal how you feel and people often need to be educated. I used to update “everyone” so to speak and then people want to feel sorry for you and say things like how awful it is and aw Yiu must be in pain and I was like yet, you don’t need to remind me thank you so started educating people and not tell everyone, but then other people think it’s ok to tell your news and really that used to p me off but people can’t help themselves and I lose it for 2 min instead of 2h now
It’s ok to feel sorry for yourself, it’s not fair, cancer is a waste of time and I always used to say I’ve got better things to do. But there is a light as the end of the tunnel. Hang in there …big big hugs 
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Hiya Get some sifflam mouthwash prescribed from your nurse or oncologist. It helps. I would use it 6 to 8 times a day when it became bad. Get it checked it’s not thrush
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