PS to website people - could there be an avatar with a short fuzz of hair? Glory be, my hair has grown enough for me to go public with it. I look weird but less so than before. Have taken to wearing mascara for the first time in years, just because I now have eyelashes again.
So sorry that you are having problems with taste, Michelle & Linda. Docetaxel is evil stuff. I had three courses of it and for quite a while, everything tasted awful. Trying my favourite foods made no difference; it all tasted dreadful, even water. The taste distortion did wear off, though, and I’m hoping this will be the case for you. I’m not on herceptin, so I don’t know about its side effects.
My query is this. How long is it before I have to accept that the neuropathy in my hands and feet is permanent? Last docetaxel was at the beginning of August and while the pain is gone, the tingling remains.
Hope everyone is managing to avoid the colds that have sprung from nowhere in the last few weeks.
@Michelle21 The founder, Ryan Riley, tends to announce events on a rolling basis, so although the next two are in London (6 Nov) and Walton upon Trent, Derbyshire (15 Nov), there will probably be more scheduled soonish. I believe he's working on a book but it wouldn't be published til 2019 or 2020 at the earliest, given typical publishing schedules. You might try contacting him via Twitter (https://twitter.com/ryanrileyy) to ask if they might consider setting up a workshop nearer to you.
The session I went to didn't have the apple crumble, which sounds blissful, especially as I have found baked apples with a strong focus on cinnamon have been a really nice, pleasing, and easy dessert option. (There are some recipes online for garam masala apple crumble that I might try out.)
We did 3 mains instead: 1) pineapple prawn tacos (using a thin slice of pineapple as the taco "shell") and garnishing the cooked prawn with fresh sliced chilli (can be deseeded), coriander leaves, slivered spring onion, and lime juice; 2) salmon fillet coated with harissa paste and baked, with a side of fennel cut into matchsticks and made into a slaw using a bit of plain yoghurt and the juice and zest of a lime, all of it sprinkled with nigella seeds for a pop of visual satisfaction once it's on the plate; and 3) an umami-rich dish of puy lentils coaked with bay leaf and garlic, to which are added sauteed onions, spinach, butter, and toasted buckwheat, served with a drizzle of yoghurt mixed with miso paste. I make the salmon pretty regularly (I use store bought harissa and it's super fast), and I have done several twists on the lentils -- not yet with the buckwheat/miso, mostly because our pantry is packed at the moment. I can type up and share the recipes if any of them are of interest.
The general principles involve using umami, particularly by combining two umami-loaded ingredients (e.g., mushrooms and ripe tomatoes; miso and spinach) to help combat sensitivity to salts and metals, or by incorporating pineapple, which triggers the trigeminal nerve rather than relying on taste buds and olfactory bulbs, so can get around the issue that way. Ginger is similar, and I've found myself adding the fresh root to my cooking on a more regular basis as I've been noticing more salt/metal dominance on my palate. (I've not had any nausea during chemo.)
Hi Gigi and thank you for your words. I am usually a strong person which is why this period of time has hit me so hard when i have been so upset. Doesn't make me feel like the normal me but i am taking steps in the right direction. My oncologist has also suggested i contact Haven and i have found there is one near Fulham Broadway tube station which should be easy to get to. They have welcome days and i am going to book into one and see what they offer. Looks like therapy aswell as yoga and complimentary therapy.
Time gets to be important and i am glad you got to London Zoo. I haven't been for a few years but my husband goes as he like to take to photos. He prefers animals in the wild but he has taken some lovely ones there in the past. I am more of a fan of the Elephants but Penguins are cute too. My daughter has plans to go to Chester Zoo on her birthday on Saturday when her plans fell flat. I am sure that will be good too.
Have a happy birthday and hope you enjoy the rest of your half term.
Its been a busy week and my I wrote down all my concerns and questions for the oncologist on tuesday evening. Luckily she didn't seem too busy and I was the last appointment so i wasn't rushed. We started with the fact the previous plan had to be changed due to my ovaries not giving up as they should. I decided the removal of my ovaries was not going to be a good idea for me. My surgery is healing well and more surgery down there would not be a good idea mentally as well physically. This means i will need zoladex 4 weekly for 2 years but she will be doing ECGs before the first and another 3 weeks later due to the risks as i am on other medication that can effect the heart in the same way. Then i have to start Letrozole a month later which again has risks but i can't take tamoxifen due to interaction with my other medication (and it didn't work for me last time as i had a reoccurence less than 2 year after the first diagnoses all those years ago). I am concerned about the risks and side effects but I have in my head that i will stop if it becomes too much and takes the risks of the cancer return instead.
I am having problems dealing with the constant reminders of cancer with the tablets/injections and frequent hospital appointments so i have asked for a referral to a counsellor. Part of it may be the hormones kicking in due to the period i had but she said down times can get worse on Letrozole so she agreed it was a good idea. I was brought up to keep emotions inside and asking for help was weak but i can't do that anymore. My daughter is of the other opinion and has asked for help in the past so her encouragement helps.
Sorry this is going on a bit...
On the subject of hair, I am still suffering with thinning of hair and it is very dry. I have tried all sorts of conditioners and treatements but it still looks a mess. Also i braved going for a bikini wax for the first time since the DIEP surgery and she said the hair came out really easily. 3 weeks later there is very little regrowth which at least saves money on waxes but does seem a bit odd.
Hope every one is doing well and hope to meet you all.
Hope it’s all going well for us. I love the idea of meeting up. Whether I can be there depends on the location decided - travel might be tricky.x
At the moment i am a bit in limbo and waiting to find out what happens next. I am due to start Letrozole but my blood test was borderline as to the Zoladex. As i have just got my first period since chemo i assume something will need to be done about the ovary estrogen production but this could be ovary removal. I have appointments at the start of November with the oncologist and the palstic surgeon to see what happens next plus a referral to a gynacologist to see if there are any options to remove the ovaries without messing up the DIEP tummy surgery. I assume it will be zoladex but there are complications with other medicines i am on so I am in a bit of a mess in that respect.
Anyway I am free as far as i am aware for a December meet up and would love to see you all. What about you gygi? Do you have any re balance surgery planned yet as i know you were talking about that.
Sal glad to hear it went well. I am having the same op on the 22nd but just on one side initially. Had pre op Yesterday and an echo so looks like its going ahead this time as not heard anything today - it was postponed from the 3rd.
Many thaks for you kind replie.
Blue boob after that dye stuff they inject in. Ive gone one better I now have two new boobs, one lump removed and the other boob resized.
The whole surgery thing was so much easier than I expected. I have bin so lucky, with all my trearment so far . I don't have chemo fuzz. just swiss cheese brains, I keep losing thinggs, words , the inability to spell corectly
So many apoligies for the weired spelling etc. I was just about to type that I was looking forward to the radio, but maybe that isn' t the right thing to say.
Thanks again and good luck to all Sal
Hope it all goes well tomorrow, Sal.
Post-surgery, post-chemo, post radiotherapy my biggest problem now is my dreadful nails - only attached from halfway down and I think at least one is going to split across and fall off. Still got neuropathy in fingers & toes. These are tiny problems given what went before. On the plus side, I’m growing eyebrows & eyelashes. Someone told me about it’s the small things like this giving pleasure. Small? It’s huge for me. Means my body is recovering from the vile things done to it. I’m grateful for treatment but it hasn’t been very pleasant.
Hi just after a little advice, I had my radioactive injection today ready for the surgery tomorrow. They have said I will get the blue dye tomorrow , but what happens next.
I was unconcerned till now. but the wobbles have hit.
Also when i had my lumpectomy back in march I was told i may wake up with blue boob but i had had a nuclear injection and scan the day before which should show the nodes effected but there was no guarantee i wouldn't need the blue dye too. I also had a tomsil biopsy in the same operation and was told the inside of my mouth would be yellow so was expectiong to be multi coloured but it was just the yellow mouth 🙂
Hi Michelle. I have only had the muscle aches in the days after the herceptin injection followed by the joint aches throughout which means I can't find a comfortable position to sleep in. I did notice on one of the forums that someone talked about taste changes. After surgery for the DIEP i was prescribed a low dose gentel laxative to stop the strain on my tummy. I am still taking them as i am slightly constipated. Not sure which way your toilet troubles are. I agree i am not happy with this going on until April but i have an appointment with the oncologist this afternoon and i will ask what i can do. I am not sure there is a lot they can recommend.
I also need the results of the hormone blood test to decide if the ovaries are still working and if i will need zoladex with the letrozole i am due to start shortly. As the Zoladex is a 4 weekly injection and the herceptin 3 weekly it looks is if i may bee spending a lot of friday mornings at the hospital being stuck with a needle. I just want to feel normal and it just seems to be going on for ever. Having a bit of a down week but that may be due to expecting to have to have zoladex. will find out later.
On the positive side my daughter just messaged to say she had passed her driving test. The sneaky thing hadn't even told us she had had a test booked. Previously she had one booked and cancelled it as she wasn't ready. I very pleasant surprise but now i will worrying about her driving home down the M1 to see us...
Hope everyone else is coping.
Thanks for your kind words. I'm looking forward to the blue boob
. Love from mama smurf
Hope all goes well with the surgery, Sal. I turned to the radiotherapy board when I started that treatment but returned to this board before long. It’s only my experience but radiotherapy, while it’s no joke, is not as bad as chemo was. Good luck with your treatment (the blue dye fades eventually).
Hi I guess this should be my last posting here.
I finished chemo on the 10 sept and have my surgery on 10 October. At the moment I am looking forward to the blue boob, ( named Mama smurf by my daughter).
After the surgery come the radiotheropy, so I am not sure which threads to read and post on. Thank you for all the advice I have read, and good wishes to all on this treadmil.
It’s good to read that post-surgery is generally going ok. I love the “anything boob shaped” idea; am so grateful my left boob still looks like a boob. It’s getting sore, though, from the radiotherapy.
No more injections + port gone - must be such a relief Gigii. Not surprised you are tired. Every aspect of treatment swallows great wads of energy. I was told I would be very tired after radiotherapy and, for me, this doesn’t mean I want to sleep. It means I can’t cope with small setbacks because I just don’t have the energy. I muddle through somehow.
It’s back to the chemo ward on Wednesday for a zoledronic infusion (hoped I’d seen the back of that place for good). I imagined it would all be over once radiotherapy ended. Wishful thinking, that.
It does seem to take it out of us doesn't it. I went back to the gym a few times between chemo and DIEP but didn't do a lot and now i feel like my leg muscles have gone to sleep. Hoping to get back this week even if it is 20 minutes on an exercise bike.
I have a wound check on monday and hopefully get rid of the additional dressings on the unhealed bits of the wound and then the oncologist on tuesday to talk about letrozol and anything else. Hoping the blood test shows my ovaries have given up and no zoladex is needed but will wait and see.
Must be such a relief gygi to get the port out and stop injecting. I have found the herceptin aches have reduced as i have had more injections so hopefully yours will too. What have they said they are going to do in order to balance you up? Is it liposuction? I have an appointment in 6 weeks to discuss what is next. Scars don't look too scary and i bought some ordinary non wired bras today to keep me going until i know what my final size will be. I seem to have gone from a D cup to a C cup which is fine as i was told i would be slightly smaller and expected to be nearer a B cup. Anything boob shaped is fine by me.
Still not sleeping well but i am getting there. Trying to find a comfy position.
all the best to everyone and hope the energy levels improve. Great on you both for running.