Dorabel so sorry to hear you have struggled with Docetaxol, especially after I got you excited about not having sickness. If it’s any help my first was the one I struggled with most, the 2nd was easier and I will wait and see what this cycle brings. Did you contact your unit to see if there is anything they can offer to help? If not might be worth mentioning when you have your next pre chemo appointment. I really hope it gets better for you.
Gigi how have you been feeling today? Did you make it to the doctors? If so were they able to help at all? I hope things are getting better for you too.
Fiona, I hope you have rested your feet and toes and they aren’t too painful now.
I’m heading for my achey days but that’s ok. It usually starts Sunday, Monday is the worst and then starts to get better. It does help knowing what’s coming up now. Having said that that’s usually when something else is thrown up so I won’t count my chickens.
Wishing everyone a week that gets better and better.
How are you all doing? I hope the last few days have been a bit more gentle on you all and there have been no new effects to deal with.
It’s interesting to hear that aching joints and body in general seems to be unavoidable. I’m definitely aching more in my knees and arms this time than I was last. This time the pain seems deeper and sharper. I’ve been given naproxen but it’s slow to work to finding hot bath’s are more effective.
I’m also definitely feeling more fatigued and have booked to see a physio tomorrow as I need some help in getting strength exercises as I couldn’t lift my bag of clay at the studio yesterday. It was quite a shock and really upset me to feel the effect on my muscles. I felt completely demoralised for the rest of the day. A bit better today but it’s really knocked me.
Thanks for the diet info Michelle. I’ve taken a look and will try out some of the recipes on there.
As for my Russian, it’s very poor and covers only the absolute basics. My MiL definitely has better English but it does make for slightly limited conversion though we manage by using Google translate which is actually pretty good! My poor husband is exhausted by the end of visits as he spends a lot of time in translation. I’ve not been to St petersburg but it’s where my husband grew up so I’d love to go. Moscow is huge but I loved it… In particular I loved Gorki’s house and the area around it and also the museum of modern art, tho my husband’s aunt is convinced they’re all reproductions and the oligarchs sold all the originals!! Who knows!
Thanks Dorabel, I felt quite proud of myself insisting on the anesthetic. My nurse had actually only returned to work in March after having the previous 9 months off for breast cancer treatment so when she saw me become tearful and say I couldn’t cope with more pain she got it I think. You’re right , there seems to be a disconnect between our pain and the understanding of that at times. We just need to make sure we’re heard.
Thanks. Michelle & Fiona. It sounds as though we are going through much the same experience. I’m relying on paracetamol & ibuprofen for the bone aches but the effect doesn’t last long. I’m really tempted to use the codeine I was given after surgery & didn’t need but I’m wary of such a heavy-duty painkiller.
it must be devastating that you cannot lift a bag of clay Fiona. Things that make life enjoyable are stripped away but only for a while, I hope. I’m surprised that your nurse didn’t immediately realise how distressing extra pain would be. I’ve heard pain downgraded to “discomfort” but from inside my skin it’s pain.
I’m grateful for the encouragement about next docetaxel, Michelle. I’m hoping next time won’t be so bad, if only because I’ll know what to expect. Thanks for your good wishes, Gygi. Keep telling myself it’ll be better tomorrow.
Hello it’s just turned July and as I had a nap this afternoon finding it hard to sleep. Welcome to July. Went to doc Friday and she was quite worried about me. I’m quite worried about me. She didn’t want me to be left on my own. I feel incredibly weak. However although can’t really go out even for a little walk it was a nice weekend. Partner stayed home with me. I’ve been following a textile festival since its conception and it took place this weekend in the farm up the road but I couldn’t go. Too hot and not safe to go on my own. Luckily lots of pics on Facebook and Twitter about it so I could see what’s going on. So I’m inside watching the world and that’s not too awful. The weather is a factor. Was outside about 5 mins in the garden Sat morning and my face is completely blotchy and red. So a little confined to the house: will be taking the week off work and pottering. Wednesday I have to go to Guys and have bloods and hear the new plan. I am living with my energy limitations hoping to feel more energised as the week goes by. Seems to be common among us doesn’t it. Hope Monday goes well for everyone. Thank you for your comments going to try to sleep now xxx
Gigi, I’m so sorry to hear your struggles. Having fatigue is so hard and it seems like you have the turbo version! How disappointing to not make it to the festival but I also feel that social media helps when we’re limited and makes things seem a bit closer and allows us to see what’s going on.
Is there anything that you can do in terms of food that may help? My nurse advised that on the taxol drugs you can’t have enough kale and spinach which boosts your bloods but also energy. I don’t know for sure if it works but I’ve been trying anyway.
Hopefully your medical team will be able to suggest some things to help and that once the other drug gets out of your system you’ll start to revive and get back to your energetic self.
Thinking of you and hope this challenging time starts to pass by soon xxx
Thank you Fiona I will ask them tomorrow when I go for my appointment. Got lots of fruit as I’m really off my food and having to make myself eat. Doc said just drink lots. Feeling a bit better today. How is everyone? Hope you are all coping. Xxx
I just need to say that whatever we are told are the start there is no easy or gentle chemo out there. we have all suffered more than expected and i think we should be given more real details in advance. The details i had said that i may get a few of the list of side effects but i think i got the majority of the them by the end of the course.
I hope that everyone is in less pain today. I thought bruising a sensitive toe was painful enough and i can’t imagine how painful dilocating one would be. Toes seem to hurt more than expected and are so easy to knock when you are full of chemo fog.
I found i wasn’t sick or queasy until the very end of my chemo but i didn’t want to eat a full meal. I ate small meals and sometimes had to do it as i knew i should rather than wanting to eat. I also had a box of custard creams on the kitchen table and the odd one of those was a nice treat. I still didn’t eat them all in one go as i would have before chemo. I think over time you find what works for you and with taste changes this can vary as you go through treatment.
I had my first herceptin injection last week and so far the side effects have been minimal. A thread on here shows alot of people have problems with them and i started to think that may be the chemo side effects were covering the herceptin ones. I know i am not out tof the woods yet but i am now 4 days gone and have just had a few aches in muscles and joints but not to a significant extent. Looking forward to a break in hospital appointments as the weekly chemo and blood tests were a constant reminder of what was wrong.
Today i went back to the gym! First time in about two months and i just did 20 minutes on bike and a few stretches etc but i think that was a good start. Energy is still low but it is improving very slowly. I still have the allergy rash on my arms but the itch is decreasing. Wondering when the body hair will return but in no hurry.
I know we all need to trust the professionals and their opinions as we go through this but husband did remind me that it is my right to get answers and to refuse treatment. If side effects are greater than the benefit then it is time to stop.
I hope your appointment goes well tomorrow Gigi and that you are feeling a little better. Loss of appetite is rotten because it feeds in to the fatigue cycle. Will you have your new plan tom? Thinking of you.
How are your aches and pains Dorabel? I hope they have eased for you and you didn’t need to resort to the codeine. The BC support book you recommended has arrived, I have read bits and finding it very helpful.
How did you get on at the physio Fiona? I had good intentions of doing resistance exercise at the begining of chemo but haven’t quite got around to it. A doc friend of mine heard a talk the other day from an Onc from Royal Marsden and something they are looking into is getting people in a 6 week exercise plan before treatment. Apparently it improves all outcomes even lower infection after surgery. I am still walking everyday but am going to try and get a few runs in between my chemo and surgery. I am emerging from the fog of Fridays treatment. The myalgia has subsided and my oesophagus/reflux seems a bit easier this time.
This weather is crazy isn’t it? It’s been so hot for so long. It all adds to the surreal feel of this summer, one we will never forget. Perhaps this will be the new ‘summer of 76’ and every time people refer to it we will think of our treatment x
Congratulations, Christine, on getting back to the gym. I think 20 minutes is really impressive. It helps to have your perspective post-chemo; makes me feel there is an end to the grind. Like you I have an itchy rash, which has started since the first docetaxel. E45 itch cream helps a bit.
I’m so glad you find the book I recommended helpful, Michelle. It reassured me I wasn’t going mad. Thanks for asking about the aches and pains. I’ve kept off the codeine, though I will ask the oncologist about that for the most painful days. Today, i began to feel a bit better. Water stopped tasting disgustingly bitter. The OTC Imodium actually worked. I managed a walk. I’ll say this about chemo, it makes you appreciate the days when you don’t want to crawl into a hole and drag it in behind you.
It’s good news that you are feeling better today, Gygi. I hope the appointment at Guys tomorrow is helpful with regard to a new (and better) plan. “Fatigue” can sound like nothing much - until you have it and then it’s brutal. I do hope the new plan addresses your fatigue as it is very hard to bear.
I’m also really impressed Christine with 20mins on the bike, good news! It is good to know your strength is coming back after chemo.
Dorabel I have found the book useful as like you say it does qualify your feelings. I struggle most with accepting the fact that my friends and family (except my husband who has been amazing) do not understand what I am going through. The reasonable part of me doesn’t expect them to understand but I get angry in my head with them not understanding and I guess because everyone is trying to say ‘the right thing’ I find that annoying too. I feel like saying what do you know? I probably struggle more with the emotional than the physical side of all this. I will be looking into the Macmillan counselling but I think that is usually at the end of treatment and I’m just starting out. If you hear of any other support I’d be interested to know about it.
X
Hi guys how’s everyone this evening? I have a new regime: will be starting Pactlitaxel for 6 weeks from Monday. So if everything goes with no further hiccups will be finished 13th August! Pleased with the news. X
That’s good news Gygi. I do hope it’s a gentler treatment than the previous one. How wonderful, to have the end of chemo in sight.
I’m guessing mine will finish some time towards the end of August but that depends on how well I tolerate the docetaxel. I loathe the side effects, including the latest: spreading skin rashes and nosebleeds (spotting rather than gush). At least the earlier problems are easing.
I’m really interested by what you say about others’ reactions, Michelle, especially the lack of understanding. I sometimes feel such a fraud, though. The public face is brave little canceree being positive (yes it’s horrible but I’m feeling better today). Inside I am terrified, especially at 3 in the morning when I can’t sleep.
I’ll let you know if I find out anything useful about counselling. What I’m trying to arrange is through a local charity. The setup is that you are encouraged to choose 4 treatments which are free, after which a donation is requested.
Don’t know how but missed the last two messages! Just seen you have a new plan Gigi so ignore my message! Blame it on my chemo brain! Good news, hope it all runs smoothly for you. X
Dorabel I’ve tried to find local charities offering support groups but surprisingly there doesn’t seem to be a great deal here. I know the Maggies centre is on its way but I think it doesn’t open until October. Although maybe that will be good timing for me. Maybe over time I will be more forgiving of my friends as I get more used to my new situation. Being awake in the night is horrible. I’m greatful for the light mornings as things don’t seem so bad when it is light. I used to love to have a lie in but now when I wake I have to get up and get on. Distraction is a big help.
I’m also getting nosebleeds with docetaxol. It has been one proper bleed with each cycle but I had a couple yesterday. As I also have a runny nose se it’s difficult to tell before it’s too late and blood has dropped everywhere. My swallowing has been better this time but still isn’t normal.
I’m really pleased for you Gigi, it must be a relief for you. How are you feeling now?
I had a phone call this morning from a hospital for an appointment in gynaecology I’m assuming relating to the recent ultrasound and cyst discovery. The receptionist couldn’t tell me what the appointment was for and it isn’t until Tuesday. Don’t the doc’s realise than appts like this we are just going to worrry about. I have asked my Onc’s secretary to find out what the appt is for. I don’t want to worry until Tuesday. I thought it was all ok so hopefully this is just to double confirm.
On a positive I had a good nights sleep and went for a long walk today (7miles). Longer than I would normally do and I think I am going to suffer today as my back seems to be having spasms but I don’t care I’m just happy that I did it. It feels good to do things you used to do without thinking. I’m going to look forward to getting back to running hopefully at the begining of August.
This really is turning into a weird year, do you think England will win the World Cup?!
Have a good day all x
Hi everyone felt well today and went shopping with my new friend (my cleaner asked me to go out for a shopping trip and coffee) We ended up having lunch and I bought a jumpsuit!!! My first! It’s a phase eight one very glam for Xmas. I also got some pressies as there were sales everywhere. Some jewellery and purses for my daughter and friends. Never done that before either get Xmas pressies so early. Had such a fun time. And a beautiful silk scarf in Moonsoon for me in the sale too. And coz everything was on sale didn’t spend too much.
Head in a better place: I deleted some “friends” from Facebook a few days ago as they have ghosted me since December. If they want to come back at some point I’ll decide then but I don’t want to see their profiles when I go on Facebook and be reminded how they have treated me. Four friends contacted me when I got home to ask how I was today. Lovely! One lovely friend told me his dad has cancer and he will be spending summer with him in Spain helping him through radiotherapy. He apologised for not being in touch. Important for me to remember others have things going on too. It was good they caught me on an up day. A lesson maybe to wait a day or so if I’m having a difficult time. I have left the people who have “found it difficult to talk to me” behind now and making new friends and savouring how wonderful my partner is and talking more to my daughter about stuff. One of the groups I’m on Facebook for breast cancer is having a meet up at the end of July! Excited to go and I have a look better …day booked the day after I finish chemo.
Tomorrow is the allergy show in Olympia and have a free ticket but not going as I need to save energy to be chemo ready on Monday. Depending how I feel I will go to work Wed or Thurs or both. This weekend will be all about the footy and I’ve bought some mocktails and going to make some tasty food. Yes my appetite is back …
Fiona I forgot to ask about food yesterday but have decided from Monday when chemo starts to get really really healthy food wise and start gently with exercise so when chemo finishes then I have a good regime to move me forward.
Took the dog out for a walk and going to get up early to take him out before the heat. As it’s so hot and I’m still not that fit will be a little one like this evening but going to start everyday now Michelle
Hope you and Dorabel manage on the Docetaxel ok this weekend.
Christine you are an inspiration although I’m still quite a way from going to the gym! Going to start with some dancing to you tube probably Bruno Mars!
All in all I know I’m feeling better coz I feel healthier so grabbing on to that and squeezing hard. And you guys can tell coz I’ve gone long again…lol Read something the other day about changing my mindset and not apologising for things so no apologies for the length of my post just thank you for reading. Have a fun Friday x
Gigi. So glad you are having a good day or too as you deserve it after all you have been through. Good luck with the paclitaxel too. If you are having 6 weeks worth then you should hopefully not have the accumulative problems. Most of mine didn’t set in until after that point and you deserve one that treats you better and gets you to the end point.
Dorabel i understand the being terrified bit especially when the sleep is hard to come by. I have left the chemo worries behind so now i am terrified of the surgery. I just need to see beyond that i think. I did google DIEP and found some before and after pictures that were not great and had to pull myself up as i have seen pictures of my surgeons patients and they were a pleasant surprise. It is more the surgery and first few days that scare me the most.
My itchy chemo rash is defintely improving now but it did have to use prescription anti histamines and hydrocortisone cream for a few weeks as it was driving me mad. Now i am back to the E45 only and the itch has gone. Just the skin colour needs to return to normal now.
A couple of active days have left me drained toaday but that could be the heat too. Yesterday i went to the gym for another gentle session then met up with my personal trainer for coffee. He has been in touch all the way through and kept my spirits up. He also has a cleaner that he recomends so hopefully that is sorted. Then i went for pizza with a friend and although my appetite isn’t back to normal i did manage a starter and main with wine.
I have tickets for for Hyde Park next weekend for Michale Buble on Friday the 13th then Bruno Mars on the Saturday. Hoping to be well enough to enjoy them and sing along with my lovely daughter. I am looking forward to it but hope the heat is not too intense.
All the best for a lovely weekend and a win for England.
Christine, how cool you have those concerts! Love them both! I had the surgery and was also terrified but I found it much easier than expected. If you ever want to chat about it I can dm you my number. I had an amazing team and found myself waking up from dreams and was walking the next day. Amazing view at St Thomas’ too. Everyone is different and I joined some groups on Facebook too and they all share their experiences so if you haven’t found the groups and want them can send you a list too xxx
It’s so good to hear you sounding back to your usual self Gigi. It made me laugh reading about your shopping trip with an outfit and presents for Christmas! I have been avoiding shops until the end of chemo but seem to spend a lot of time thinking and planning Christmas. Hopefully most of our treatment will be done by then, apart from herceptin or hormones for those on them. We all need to have something to look forward to. I’m also envious of your concerts Christine! I’m sure we will all have a social life soon. We are all closer to the end of chemo than the begining now.
I feel like I have come out the other side of my last chemo. I actually think it is the higher dose of steroids that cause most of my SE’s. They definitely cause the reflux which make it really horrible to eat for a few days. However I persevere usually with mini magnums. I have also noticed I get really quite low for 2-3 days around days 6-8. Also I wake up a lot earlier and therefore feel more tired. It really felt as if the steroids left my body on day 10, I could eat properly, sleep properly and didn’t feel low. I am so relieved to only have to go through this miserable cycle one more time, although then I have surgery.
Gigi you mentioned surgery, I know you said you have had a mastectomy, did you have lymph nodes out too? I think I will be having mastectomy with axillary clearance which I am dreading. I haven’t spoken with anyone from the surgical team yet so don’t know the full details but it seems recovery is slow when lymph nodes are involved, I was wondering what your experience was? How long was it before you were up and around? Hi long before you could drive again? Where I live there is nothing within walking distance so I’m not looking forward to being isolated. How much pain were you in and how long was your stay in hospital?
Well I am sitting in the garden this afternoon, going to try and read my book. I hope everyone is feeling well and time is moving swiftly xx
Hi Michelle I hoped you enjoyed your time in the garden…Unfortunately chemo is the gift that keeps on giving and I had an allergic reaction to pactlitaxel. Managed to get through it the second time but they dripped it in so 8 hours there cold capped all day (nearly gave up but got through it!!) And got home at 7pm. Didn’t get to do herceptin so got to go back tomorrow afternoon. So pumped full of steroids right now so will write about surgery and an tomorrow when a bit more chilled. Take care Gx