Ah dear, thank you so much
We need to be strong mental, I know it will be up and down, but how you know , sometimes you can’t anymore and then you find you are stronger and can go 
Thank you for all your words,
All my best to all, 
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Hi everyone
Good to hear from you all.
Cami, just to say that in 2018 I had a cough that I could not shift, seemed to puzzle all the doctors, it was whopping cough. There is a simple blood test they can do. I really hope your cough disappears because it is knackering when you’re well, let alone when you’re on chemo. Remember the steroids play havoc with your moods too.
Is anyone else having strange eye twitches on paclixatel?!
Hoping for a decent night’s sleep for us all.
Annemanc have a lovely holiday too
xxx
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Pinklili thank you for psillium husk suggestionxx
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Hi @Camy_Radika
Like @pinklilli3s says don’t worry too much about Paclitaxel. I’m on a 12 weekly and get 2/3 days feeling near ‘normal’ and two days feeling totally exhausted, the other days I’m 7nder the weather but can function. But saying that I’m doing the 100 mile challenge in October and have managed to keep up. Obviously some days I walk more than others.
I also cold cap and 6 infusions in I still have a full head of hair. I shed a bit everyday. I wash it once a week and use a scalp specific shampoo, conditioner and serum/oil at the roots. I do have a very sensitive scalp and have to wear a hat outside as I don’t like to feel of wind or cold in my hair.
I did Look Good Feel Better hand and nail course which recommends twice daily cuticle oil/ balm and hand cream. Nail strengthener and varnish to be removed every 3 days to check your nails. It was pointed out about using dark red/black nail varnish on Docetaxel or Paclitaxel. Also good if out in sun to protect nails from UV light. Worth booking a session. I have started getting some ridges and soft nails, so will paint nails tomorrow.
I had an issue with my PICC this week in clinic. It would not give any blood. Had 6/7 flushes and left for an hour, two different staff poking and prodding, still no blood, 1 more flush and eventually it gave blood. I was so relieved as it would have meant having an X-ray and clot busting drugs to see if it could clear line. We were already in clinic for 2 1/2 hours. Been told higher risks of blood clots but not specifically in the PICC. 7th Paclitaxel tomorrow so hopefully it will behave!
Been feeling a bit down this week. So called friends have stopped contacting me, obviously been ill too long! One friend said they’d be there for me help with lifts to clinic and treatment but now they have a family issue and moved to the other side of the country to help a gap family member. I know it’s family but i can’t help feeling let down because they promised so much. It’s a bit if a strain on my husband to do all the trips with full time work, the cancer centre is over 70 mile round trip, so it’s very time consuming. I can’t drive on Paclitaxel infusion days as it contains alcohol, it’s one of the two days I feel well enough to drive aswell. I drive locally but 30 miles on a motorway with a fuzzy head some days is not a good idea.
Luckily I have all of you for support. It’s true that people show their true colours when you have cancer.
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Thank you dear, definitely you encourage me a lot, I am also with you with my soul:revolving_hearts: Take care of yourself and I feel that you are strong, you even manage to calm me down Hugs:bouquet:
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Please share your meal with me, I can’t find anything as before to tasty, I am starving and I am afraid that if I eat that I am not well after, , I had a menu with fibre when I felt constipated, then fruits make reflux, now I start with diarrhea, I left fibre but nothing taste nice,
I love fruits but not sure now what to put in my stomach to not make me feel bad.
So I am curious what you all are eating, maybe I can change something too
Good luck tomorrow @naughty_boob ,
And anyone else having the treatment this week.
Big hug 
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Hey Camy, I try to visualise my food and ask my body what it wants to eat. If I get a thumb up I eat it. I also do CBD (smoke )which help being relaxing my mood around meal time and open my appetite a bit .
My taste buds have completely changed. I like ketchup now?! I also seem to agree w chicken…if am not eating a lot I leave it for later and I try to do little and often. Bananas, apples are my friendly snacks. Anything w strong flavour works, like rocket salad and tomatoes, balsamic vinegar, crisp s&v. I try to take anti sickness meds before my meals. It helps a bit expect if Yiu have to take a meals, but ondansetron I think you can take before the meal. Very hazy but psyllium husk helps , so are dried mangos, prunes and figues (expensive dried fruits, but I’ll do anything for a poo these days 
) xxx
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Hello @Camy_Radika I’ve found I’m craving lots of carbs with green veg on the side at the beginning of my chemo cycles. All the toxins we’re taking in has made me more focused on food, thinking about ingredients and what will taste good together.
Tonight I cooked up some nice dried pasta with sauce from fresh tomatoes, garlic and basil, plus lots of Parmesan, and yesterday I made a big cheese pie with lots of greens.
For breakfast porridge is sorting me out, with lots of honey and raisins. It feels nutritious and simple. It’s strange, I thought I’d want more pre-made stuff because of fatigue, but am feeling urge to cook. Maybe it’s having control over one element of what’s going into me. 
@naughty_boob so sorry you’re feeling let down by some of your mates when you need them. You do have us! 
All the travel must be tough. Can you get transport organised by the hospital at all to take pressure off? I know the Christie (where I go) offers it if you live further afield. Xxxx
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@annemanc hank you girls, I feel the same, strong flavour seems to works better, but unfortunately my stomach is responding strange, there oncology team He changed the stomach medicine to protect me, probably also for this persistent cough, but any combination of food ends up changing my state or my stomach. I hope it’s temporary. once the cough goes away,I also noticed that I want more carbohydrates, but it seems that salads and fruits are not accepted by a fresh stomach, I will try steaming maybe, I feel that I am not eating vitamins from fruits fresh, as I used to, but I understand that everything changes in the body, and it takes time, I just don’t know what to eat anymore
@naughty_boob I didn’t mention nothing about my expectations about friends and family, but I understand you. At first I chose not to tell many people around me, I thought that I was managing somehow, and I stopped those who found out from looking for me, that’s how I felt at the beginning with the diagnosis and the operation, now since May when it all started, maybe I would like them to be more active too, but I pushed them away, and honestly today I have a bad mood tomorrow, so they probably don’t know how either to behave with me. But how you feel, they should try harder in your case, or you can tell them that you need them, maybe if they know how you feel too help more, honestly a lot of people don’t want us to feel bothered, or they don’t know how to make themselves useful.Talk to them, don’t wait for the daily routine to take you away.
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Agree @Camy_Radika on the friendship stuff. Someone I respect hugely (my old boss who has the biggest heart) said to me that cancer diagnoses had floored her in past, particularly in younger people, as she wasn’t sure what the person wanted from her or what to say. When there’s a danger you might upset someone or get it wrong the temptation is to retreat once you’ve given the usual “let me know how I can help” platitudes. While probably feeling a bit shit about it.
I found it hard to know what I wanted… but am maybe trying to take control now and directly suggest stuff. I’m lucky though that treatment is every 3 weeks, and I don’t need support with domestic stuff so far. What I need is friends to go for walks with, tell me rude jokes, make me laugh, buy crap stuff with in charity shops. Encourage me to have one glass of wine or who’ll organise a little play date for one of the kids so they don’t kill each other! So I’ve been asking for that. Telephone calls while walking are good too.
The hardest parts are people who aren’t really close to you and have no real interest in friendship but are just nosey and interested in a gossipy way. Not come across too many of them but not keen and have kept a wide berth. Although conversely have met people I really didn’t know before who are real gems I want to keep in my life. Xxx
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The friendship stuff is really tricky isn’t it. I find I really only want to be around my husband and son, and sister and a couple of very close school friends who don’t live close by. I feel too overwhelmed to be with many others, just find it too exhausting. I miss my lovely mum more than anyone but she is in heaven now and I know she’ll be looking down. Sometimes I just need to be on my own too.
Think some of you are having chemo again today so good luck to all of you. It’s another paclixatel for me later today, I’m a bit anxious as I feel I haven’t had a ‘good’ day this week and the thought of having more chemo when already feeling like this is a little daunting. The sun is shining though so will try and have a short walk this morning…
Food wise Cami, nothing tastes the same but I keep eating Wotsits! Yesterday I had some home made soup which was really yummy. Hope you find something you fancy. At the weekend the only think I could manage was marmite on toast.
Much love to you all
xxxx
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And totally agree re those gossipy ones…xx
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Hope you have an enjoyable break in North Wales.
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The friendship support is a tough one and I experience first hand w my partner. We don’t live together and I try to explain my best what I need for him and sometimes it’s just him being here and taking a day off for me and keep me company, cook some stuff for me. It’s a new way of doing things.
I’ve reduced the number of people I inform about progress and how I feel because when I don’t feel well I don’t want to talk about it repeatedly and if I am well I defo don’t want to be reminded I have cancer and want to enjoy life. So I’ve asked all my friends that if they ask me how I am they have to distract me with some of their life nuggets otherwise pls don’t contact me because it’s hard to rehash stuff whan I am not well . A friend is coming later, it’s my intense low week. Beginning of uti felt so coming to pick up some meds. They reduce the carbo dose this week but my kidneys are still not liking it obviously. Much less nauseous this week but still bothered w thrush grrrr and cant seem to shift it even doing all the right stuff w meds, oessary and pro biotics . Very very constipated, I took all my meds at 5.30 w fruits, banana, apple and 3 movicol, and one Dulcolax then danced the poo out for an hour on boogie night and men in black and many other disco tunes (steroid obviously took over!!). My bf was leaving for work returning to work in essex at 6.30 and I didn’t want to feel miserable and down ince he left. Guess what I won. I pooed. Twice but then UTI kicked in about 8am so that’s probably going to set me back on the thrush treatment but will get meds soon and pain is mild ATM 
Anyway upward and onwards. A friend is coming later and I will welcome the company for a couple of hours w a cup of tea 
xxx
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Ah dear, I’m glad we can still tell everything with a joke,i read your post and cry and laugh at the same time, i feel exactly the same as you.
Big hug
Take care girls, have a good time and treatment goes well.
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Hi Pinklili, well done on winning with the constipation. I do think the carboplatin is particularly bad for this. Which then makes you feel sick. Which then makes you not eat. I’m hoping this week won’t be so bad with just paclixatel.
How have you all fared on EC for constipation?
I have another two sickness drugs to try this time, forgotten the name of one, then also onedastron. But worried that will bung me up even more.
Perhaps I need to order some chocolate prunes!
Xxxx
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Did you ask your team about CBD? I was using the oil under the tongue before chemotherapy and it helps with stress, menopausal symptoms like hot flushes and sleep. My team said to stop any additional supplements including Vitamin D and now my levels are insufficient at 25 and having to have very high dose for 6 weeks. I only know because I asked at the clinic, I did get a bit of a flippant answer that if we checked everyone’s they would be low… but maybe not this low, < 25 is deficient so I was very close. I’m hoping it will help with fatigue but it’s also good for bone health.
I did a Penny Brohn treatment program cause about complementary therapies today while cold capping and having treatment, they’re only on a Thursday 
and that’s weekly infusion. They address CBD saying it can benefit but check with oncology pharmacy team rather than doctor or nurse. They said many studies done on mice or cancer cells and not humans. Some treatments can be affected by CBD. She did say to query if they say No and ask reason why. She believes it if can help with symptoms of nausea etc why shouldn’t you use it and there is an anti sickness medication that is made from CBD!
Thank you for all your comments and support re friends. I agree with @annemanc that I have met a lot of people in passing with dogs on our dog walk and people I’ve only just met got told about my BC and treatment as when they ask if I’m ok I’ve decided it best to say No… actually… it make me feel better. Most of these people ask how I am when we see them but it’s infrequent but very kind they remember a ask when they don’t know me that well. Some people I’ve been very careful not to say as I know they are gossipy and can’t be doing with that. I feel I should let people know they’ve upset set me so I can release that negative energy. Normally I’m the sort of person to placate others and keep the peace so to speak. I have an old friend in Australia that touches base weekly which is so lovely and some family ring regularly. It’s so hard with friendships I understand some might feel their own mortality or have experienced family or friends with cancer or themselves. But again I’m the one in ‘need’ and you’d think they would want to help, I know I would.
@Camy_Radika Food wise, I’m craving more salty food rather than my go to sugary. In clinic they said to minimise stomach upsets including diarrhoea to restrict fruit, veg and brown breads etc, which I thought were the most healthy. I like to cook fresh in y good days and have leftovers for bad days.
Thank you again it’s made me feel so much better.
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Hi Naughty boob, I declared what I was taking/want to take and the pharmacy confirmenld whether I can take it or not. For example I would normally take cranberry tablets ultra strength but I can’t so I am stuck w the juice and antibiotics! For the CBD, I smoke it. Couple of puff. I told them they said it was fine because I don’t smoke lots of it. It does help w appetite and nausea some time or simply pain and relaxing my body.
They are some friends I had to educate and some I just had to distance myself from and stand up for myself as they were expecting to make myself available for meet up or take them for a ride out (am a horse ride leader in spare time and work as senior HRBP) when I couldn’t take them and they got upset and made me fell bad for not taking them. Dam you, you really didn’t get it I stood my ground and pointed out they were a diva and they need to cut me slack. Some people are just selfish and self centered. They say you find out who your friends are during cancer treatment 
I agree! xxx
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I’ve been very lucky with people checking in and sending little parcels which has been very sweet. Although lots of lavender based products to help sleep and there’s nothing I hate more than lavender 
I have a strained relationship with a girl on my team at work as she has a tendancy to speak without thinking and dropped an absolute clanger in lockdown that I’ve never forgiven her for… she got me a get well card that basically implied I don’t have any friends and then announced she’d like to come to chemo with me as if it was a nice day out. That would be a no. I can’t imagine anything worse than being trapped in her pity company. Luckily she has two small kids and is always germy so I was able to throw a few excuses at her 
Food wise, I went through a phase of nice soups with cheese and crackers, then a bit of a beige phase… I’ve not really lost any taste for anything yet luckily although I’ve gone off milk and coffee. I’m trying to have yoghurt and fruit for breakfast and chucking a few dried apricots in to help things along…
my worst day for that seems to be Tues after chemo the Thurs prior. Currently on my way for an MRI and going to grab an M&S Xmas sarnie as a reward!
Hope everyone is doing ok xx
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Hi again!
Had to pop back to cancer centre so spoke to pharmacist. They didn’t say a total no to CBD oil but said research is not there for chemotherapy and your live has to work hard to process that that the CBD is just another thing it has to deal with. They said if I can hold off for another 5 weeks when I finish my chemo that would be better. But she that it is a balance with treatment and quality of life. I did point about that there is an anti sickness drug using CBD!
She said the Herceptin is injected and not so hard on kidney so I could try and see what happens then. I’ve looked into other treatments for hot flushes and they all have contraindications with other drugs I take for my heart so they aren’t any good.
Maybe it’s time they did some studies with chemotherapy and CBD in all its forms and see what happens.
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