Are you TN Fairy Dust as I notice you've mentioned the asprin trial and Lesley from the Nov thread has mentioned it x
Hi Cathysid, Ali, MrsMeow,Jow
Sorry not been on for a while, been a bit lethargic the last few weeks, a bit like you describe Ali , in a bit of a silent phase, and have a bad chest infection now, coughing and lost my voice!!
Can't believe your radiotherapy non existent plan Cathy, that's not good at all. My radiotherapy team were amazing, so am surprised all aren't as on the ball, I do hope that it is sorted for you soon. I found radiotherapy went well for me, but am so exhausted now all treatment is over. I may go into a clinical trial for aspirin..to see if it will reduce the timescale for cancer recurrence. Have an oncologist appointment next week to discuss it further. I will be on a placebo, or a low dose of medication or a high dose of medication, but I will be randomly assigned by the research team so neither me or my oncologist will know which tablets I get. I may as well do it and help other ladies coming behind me with this unfortunate diagnosis. 😞
Well done to you Jow for making the decision to take part in your trial.:-) I really hope your surgery goes well next week. Thinking of you. Glad you had a lovely holiday..I hope to go somewhere in the summer, not sure where or when, but have loads of annual leave still to take so hope I can take it when I go back to work that is, I do wonder how I will cope with work next month, I will need a phased return..I hope work will be patient with me.
Thanks for your cat photo MrsMeow, they are gorgeous, I concede defeat, I have no energy for a cat..but I enjoy watching cat videos on YouTube!!
In terms of survival statistics, I asked my oncologist the question and got 76% 5 year survival to increase by potentially 7% with chemotherapy/radiotherapy, which isn't bad, but now I have a new oncologist I will ask again.
I need to exercise more so will try to work on this in next few weeks I think!
Hello and Happy Easter everyone!
I had a lovely week away in Cornwall. Seeing seals and dolphins and the beautiful beaches were a real highlight.
Had 15 for lunch yesterday and now recovering - although everyone was very helpful.
My eyes are still very watery- Cathy did you have your tear ducts probed and did it work? One of my friends (who hasn’t had cancer) has raved about Revitalash to help lengthen and thicken lashes. Has anyone tried it? It is very expensive but has 20% off at the moment so I’m considering it although wary of putting anything near my eyes .
Ali sorry to hear you are so weary, i think it is probably to be expected after that ordeal but you could get your bloods rechecked. I’m def feeling less tired and stayed up til midnight on Saturday night after a dinner party which is good for me even before BC. I’ve been anaemic since mastectomy but having bloods done again this week for the PALLAS clinical trial. I’ve not started it yet as white cell service were too low when tested 2 weeks ago.
Ive eaten way too much chocolate. My husband will need to take our eggs into work for his colleagues as I just don’t have the willpower to resist.
Love and energy to all !
Sorry to hear you are still feeling tired. I have ups and downs. I had a couple of good weeks but then this week,and last week actually, I've had achey legs, feel exhausted again. I also still have split thumbs and a runnny nose.
i do wonder if it's the herceptin. I found a couple of older posts where women said their split thumbs only healed after finishing the herceptin.
At this stage I'm just trying to do what I would normally do, but at the talk I went to on fatigue a couple of weeks ago they suggested doing less to give the body more time to heal. I'm trying to carry on eating healthily, lots of green smoothies, vitamin C and D, plenty of protein. More often now though, I find myself reaching for a coffee or some dark chocolate for an energy boost. At least it's not red bull and mars bars!
Hope your holiday is fab Jo - and I bet Cathy you are rocking the gold look - next stop platinum as planned... Fairy have a relaxing weekend after your sad week - wish I could send you my daughters ragdoll cats for a cheer up cuddle - they are better than medicine for me and I love being a cat-granny - not sure if I posted a photo before but I will try again. I did the dinner with no hat last week and survived - but got a bit ahead of myself as didn't realise when walking in to breakfast there were about 70 people sitting down and eating and i panicked as there were so many and went straight back upstairs for my hat! Hair is getting longer all the time though so it all will be a thing of the past very soon hopefully - I will never stop missing my lovely curls. Hope everyone is ok tonight - I have had a lovely day with my girls making the most of them before one or other of them leaves the country again - they are not both in the same place often xx
Ahh. I will take your cat for a sleep over Cathy. Pack an overnight bag and put him on the train! 🙂
And don't worry about your hair, gold hair sounds lovely! Is it really as bad as you think?
Could you wait a week or two and then try again? But I say embrace your hair, own it and strut around as if you meant to do it!
I must admit I love my ability to wash and go in the shower. Boys always had it so much easier, now I never want long hair again!
Hope the tamoxifen side effects aren't too bad..Really wish the best for you.
I've been to a funeral today, of my aunt. Died of multiple strokes over three years. @aged 70.
I would hate to be immobilized through stroke..it made me think though..anything can happen to anyone at any time. So am gonna write my will. 🙂
Thanks so much for your supportive words ladies, you don't know how much I needed to hear that. I can appreciate more than ever the support you ladies offer, and how very special it is. We're all in circumstances we didn't choose, and we really are a unique group. I guess those who aren't in the group don't understand. I have no I inclination to speak to her again, I don't need the stress and I no longer want what I thought was her friendship, reaching out didn't help in my case. .I'll keep my self to myself..
Thanks though to you for being here for me :-), and allowing me to vent. Very kind of you..x
Hi all..Hope all are well..
I've had the weirdest text conversation last weekend, with someone I`d only recently considered a close friend. Since my diagnosis I revealed more about me and my past and future dreams to her. Without going into detail, she completely had a go at me and threw confidential information I'd shared with her right back in my face. . Now I can't trust her with any information or not to share anything I tell her with others. I have done nothing to provoke it. I hate confrontation in all circumstances. It's a shocking lesson for me. At least on this forum we're pretty much anonymous, so I can speak freely without judgement. But in the real world not so.
Lesson learned. Be careful who you trust, whatever your circumstances. I'm really confused and hurting from this, but have to go on. I won't contact her again and she's blocked from contacting me now. Such a shame.
I wish I lived near Penny Brohn. Hope you are enjoying the yoga, jo.
What does the Pallas trial involve?
Fairydust- how far into rads are you now? How are you finding it? Any side effects?
ive been to the second "moving forward" day of my course. It's been really good. The first session brought up a lot of emotions - we were focussing on fatigue, and how our lives have changed. The second session was more practical - we talked about being breast aware, signs of recurrence, bras and prostheses. Next week its exercise and lymphodema.....
I'm really enjoying going to the gym. I just do 10 mins on exercise bike and a few other bits. I got a nhs referral so it's free and I get a personal trainer!
hope you are all feeling well, cx
Hello Jow, wow, I'm impressed with you doing yoga, it does take some patience yet also stamina I feel. Good on you. I'm struggling for energy and motivation at the moment, I'm sure it will pass, but right now it's all I can do to get to radiotherapy every day. Maybe I'll improve once all treatment is over end of March.
I'm sorry Jow, it wasn't me you were thinking of in regards to zometa of any kind, and can't think who you may mean unfortunately..but I do hope your biophostonates issues aren't very bad. Is it good to be in a trial? I have not been offered a trial in my area, but it must be quite rewarding to enter into a trial that may help develop treatments for future patients. Good for you.
Well, the weather was lovely on Monday, but has deteriorated since...winter coat still needed..!
Enjoy your day.
Oh I’m sorry to hear that Cathy. Yes i agree Fairydust, it does feel like such a long trudge this BC and that lack of control feels so unfair. Especially when you are doing everything you know to help yourself. Hopefully having to deal with all this adversity somehow this will make us stronger in the long run..... Cathy I think you’ve had more than your fair share, even amongst us cancer girls.
Im still at the hospitals a lot- every day this week. Some of the appointments are for nice things like creative writing yesterday. Today I had bloods and preganancy test (haha!) for the PALLAS trial I’m going into. I’ll be randomised next week.
Im still struggling around the bisphosphonates issue. I think I mentioned that we get the oral drug here rather than iv zometa- Fairy I think you had that with your chemo? Or was it Mrs M and Geordie? I’m a bit worried about the side effects and although it is recommended of course I have a choice.
Im doing yoga now at Penny Brohn. I’ve never done yoga before. I’m usually the sort of person who likes to rush around and achieve the maximum productivity for the minimum amount of time . Yoga doesn’t really fit with that, but I’m giving it a go!
We had an amazing day of blue sky and warm sun yesterday, I hope you all did too. Wish I could bottle the sense of well-being that the sunshine gives.
Hi Cathy, oh dear, that's rubbish for you..So sorry. It never seems to end does it?
We just have no control over what our bodies decide to give to us..hang on in there...jump the hurdle and see what's on the other side..
Thinking of you
Just catching up..and congratulations Ali..couldn't be better news..Really pleased for you..chemo has done its job splendidly! Enjoy your celebrations to the max! Thanks for all your support to us too. X
Jow, that's a relief with your MRI results, again congratulations to you! Great news for you. Really pleased, and again, enjoy your celebrations to the max!
Words sound not enough compared to the enormity of your results, and CK, you too had the good news a little while ago, but we've never met and just have words to express our sentiments and feelings..Hope you have lots of hugs, and cuddles in the real world as you all deserve ..x0x
CK, no cat 😞 I have no energy to do my housework so can't see me looking after a cat just yet..I'd rather have a cleaner right now lol..
But your Merlot sounds gorgeously adorable still..v jealous..x
Today is International Woman Day..and you're all very lovely kind strong inspirational women..enjoy the day!! X
That’s wonderful news Ali. I’ll raise a non alcoholic glass of champagne to you, We are also celebrating. I had my spine MRI yesterday and today I’ve been told that my bone abnormalities don’t appear to be secondaries!
Thank you Cathy for that useful lymphoedema and exercise link. I’d asked my surgeon a few weeks ago how much I could lift and she said “ just a bit more than normal” which left me none the wiser. I’ve been buying a lot of alcohol free wines. Not massively impressed so far so can’t yet recommend a substitute for your Pinot . Tonight I also tried seedlip which is a non alcoholic gin. I quite liked that.
And CK hope the radiotherapy went ok. Glad to hear Merlot still being an amazing companion- who needs a man when you have a cat like that!
Ive been out all evening at the hospital to find out more about breast reconstruction. Another big hurdle but the waiting list is very long which gives me time to get my head around it.
sleep well all of you, if are not already . A late one for me but head is full
Someone told me that going down the stairs backwards is best when you're unsteady on your feet...not too sure about that. Have yet to test it out.
Thanks for the link..got one for dodgy hips..Lol
Hi Cathy, really jealous of your weekend break..sounds just what you needed. Pinot and all..glad you were still able to travel safely in this snow..All pretty much gone now where I live which is good as slushy ice is moot great for the older folk in the UK.
I fell down the stairs a bit this morning when my hip gave way, grabbed onto the banister..now I know how older folk must feel..only 48 and need a walking stick!! Lol..I hope they'll recommend physiotherapy to resolve it..and its not anything sinister.. poor you Cathy. You're younger than I am and arthritis must be awful for you..but you're always cheerful..Good for you!! X
Well, have a safe journey and a happy day back home with kids and dogs, beet they missed you too.
Oh Jow, thanks for letting us know about your results..cleared of one thing, but another issue raised..Oh I'm so sorry. I hope the scans work out in your favour..you're handling it well by not telling everyone..gives you time to think.
I'm glad you have a date for your operation on ovaries and tubes, but can see that this too could create issues, I wish you all the best. I will at some point have an operation to remove fibroids on and in my womb, makes me look 3 months pregnant or very bloated! I too am incredibly grateful to our NHS for all they offer, I wish we could prioritize it more than we do already..It's not something we should play party politics with in my view.
Good luck with your injections. Never ends does it..Have a happy day!