Hi Junash. It’s lovely to hear from you. Sorry to hear your mum’s been ill and you’ve had so much on. As if you don’t already have enough xxx
AMDriver so sorry your feet are so painful. It’s rubbish that the exercise made them worse. Hope they start to feel better soon. Xxxxx
Bettypoppit I can now relate to how you’re feeling. I’m so stiff and sore and I feel shattered. I’ve been sitting in my jammies all day today and I’ve dropped off a couple of times. Xxxxx
Sending hugs to everyone and hoping these horrible SEs will wear off soon ???
Junash - so sorry to hear your mum has been poorly. It’s no doubt such a lot of worry on top of your own problems. In the past 4 months my mum has gone from healthy and independent to needing carers and meals on wheels and the most distressing thing for us both is that her marbles have started to go too. I have to admit I’m not coping that well with the stress of it all. Desperate to get back to normality, but sadly that normality has changed. I think I’m going to have to get the posse motto “just one sodding day at a time” tattooed on somewhere.
I’m also very sorry to hear of everyone’s painful feet and other issues. I’m afraid I don’t have any helpful tips to offer, but am sending virtual hugs.
On a happier note, in the last week I have sprouted 5 o’clock shadow eyebrows and 2-3 mm long eyelashes. At last! Hairs are also burgeoning on my chin and upper lip too though - darnit!
Am driver ditto with feet , ditto with exercise . Have had it for 4 weeks now but I have carried on walking regardless as I want to loose weight and get fit quickly so I can ride my pony again . I have tried a variety of boots / shoes and bizarrely my steel toe cap yard boots are the comfiest although not ideal for a night out ! The amytriptyline is starting to work after 2 mega sore feet and 2 mega sore hands I now have one ok hand , one slightly sore hand , one slightly sore foot and my left foot still hurts like hell . I wud get a second sitting with a diff dr if u are still suffering as the pain is in humane in my opinion and an animal would not be allowed to suffer like that ! X
Also yes I have 5 o’clock eyebrows and mini lashes and the dreaded chin hair which I have just plucked . Sorry about the parent issues too ladies … Yes I tick that box as well xxx
Hi Peta , thanks for the link .
I’m sorry that you are having a tough time , that is a very gruelling regime that you are dealing with . Try to take heart in that it is zapping any potential nasties and giving you more protection .
I have 7 more left , tbh I have gone thru the first 8 in a complete daze as my feet have been so bad . On the days when I have to drive myself I have to try and keep the car in 3rd as if I change gear it makes the nerves in my foot zing ! Hope the next 2.5 wks pass quickly and that you get some well deserved rest xx
Well done Peta - not everyone is as articulate and capable of overseeing their own care as you are, and your complaint will most definately help others. I shudder to think how many people must blunder through their treatment with misplaced trust in their teams.
Hi Peta. I can’t believe how incompetent your so called professionals have been in dealing with your case. You’re quite right to complain! As Linzz said how many patients are just going along with their treatment with no idea of how poorly they’re being treated? Your complaint should hopefully help others in future. Thanks for the info re drugs. I can’t understand how I’ve been given tramadol and nortryptilene together. It was initially a pain consultant who prescribed them and my GP has gone along with it too. I was originally on 8 tramadol tablets a day with 100mg amitriptylene /nortryptilene. As I had no ill effects I’m assuming the odd tramadol now and then should be ok lol xxxx
Hi. I’ve been trying to find out how long after chemo is finished we should be avoiding infection e.g. friends with colds etc. Does it take a long time for our immune systems to recover? Xxx
Hi ladies. PETA that is terrible the mistakes made concerning your care. Like the others have said, it’s scary to think some people would just go along with things and not question it. My mum who was diagnosed the year before me would be one of those people, she never questioned anything to do with her treatment and basically done as and when she was told, no questions asked. I’m not like her, I want to know everything.
Had appointment today with oncologist. She had a look at my boob and my arm scars, asked how I got on with radiotherapy and that was about that. I had a few questions written down that she was quite happy to answer. Main one was about the joint pains. She said defo due to letrozole which I’ve now been taking 3 months. She said to persevere up to the 6 month mark and if no let up re pain she will change me onto another AI. I also asked about zoladex injection. I had previously been told I would be having these injections for 2 years (by another doctor) but today the head oncologist said I would be having them till I was 55, so 3 and half years. I had been told last week that it was dangerous to be taking letrozole if pre menopausal so she said having injection till I’m 55 will ensure I am defo post menopausal. I wonder what would’ve happened if I’d not asked!!! Also because I’m taking letrozole you are more prone to osteoporosis so they monitor with bone density scans. I’ve not had one yet so asked her about it. Seemingly I should’ve had one during my radiotherapy, she doesn’t know why I didn’t get one, so she’ll request appointment ASAP. Again what if I hadn’t asked. In general I have no complaints whatsoever about my care throughout my treatment, everyone has been wonderful. Anyway that’s me been signed off by the oncologist. She said I wasn’t being taken off the books and could get back via BCN if any problems. I’ll now be reviewed by surgeon yearly for next 10 years, first appointment in September for mamogram.
Got results through yesterday from genetics and great news, I don’t have the faulty gene. I am so pleased, it means my kids don’t have this hanging over them either. One less thing to worry about.
I hope everyone’s problems are improving, bettypoppit with your fatigue and sore skin, debtex with your sore hands and feet, PETA with the longest stretch of radiotherapy (I hope your skin is holding up) and lainie with your orange hair!!! I know that others have also been having a time of it with various things, thinking about you all and hoping you’re all on the up soon. Great to hear eye brows/lashes are making an appearance xxxxx
Congrats Murphy on your good genetics news :robothappy: As you know I’m on the zoladex + tamoxifen (for 5, possibly 10 years) and I asked about osteoporosis as I’m concerned my back condition will get worse. He offered me a DEXA scan which I think would not have been on the cards if I hadn’t known to ask about it. Grrrr. Anyway, the drawback - it’s a 6 month waiting list when it is just a check “before” treatment. My onc is talking about swtiching me to an AI in a few months time “if” my menpause symptoms have been tolerable on tamoxifen and “if” his calculations on % benefit come back as “worth it”, so I’m very interested to hear about your experience with AI side effects as the months go by.
Hi mystery mouse, I’ve not been offered tumour blood marker test but my daughters partner, who has just recently qualified as a nurse, asked me if I’d had my tumour blood markers checked, so I take it some cancers do get this, but I’ve never heard anyone else mention for bc. Re the dexa scan, I think you are routinely offered this if you are taking AIs because of the increased risk of osteoporosis, however tamoxifen doesn’t carry this risk so if you’re taking tam you won’t need the scan. Linzz I was speaking to a lady who’s been treated in edinburgh last week at my Moving Forward course and she and the BCN both said the waiting list for the scan in edinburgh is lengthy. I’ll be going through to the Beaton to have mine so hopefully won’t wait too long. You will no doubt hear all my moans and groans about side effects on the Letrozole, apart from the joint pains I have been fine, very few hot flushes. Fingers crossed these pains ease up by 6 months and I don’t need to change tabs - the other ones could bring on a whole new set of problems!!!
Been for a super long walk this morning with a couple of friends and our pooches, so sitting with my feet up now. I’m going to continue looking for holiday insurance, the problem isn’t with bc, it’s the blood clot that’s causing me grief.
Hope no one been caught out today being April Fool. I have and I’m blinking annoyed with myself hehe xxx
Enjoy the rest of your holiday jingo xxx
Hi everyone not been on for abit so havin a catch up, easter school holidays are doing my head in having to take the kids with me to rads apppintments luckily they havent been running to late like previous sessions. 7 more to go but they dont work over easter so 1 more tomorrow then back tue.
Murphy must be a relief to get the good news you havent got the faulty gene one less thing to have you worry about.
Jingo hope your enjoying your holiday what id do to be away right now.
Can i ask the ladies getting there lashes and brows back how long since chemo mine dont seem to be doing anything gutted ! All other hair coming back !!
Saw my onc today shes quite happy with me at present said after i finish rads on 14 april wont hear anything for 8 weeks for a check up then i will have a yearly checkup for 5 years. Tamoxifen going ok but very early days hot flushes started before i took the tablets which i thought was strange but with all my menstrual probs during chemo i now have gone the other way and missed this months.
Hope u all have a good easter hoping to do something at weekend with kids so i dont go crazy. X
Murphy fantastic news that you don’t have the faulty gene ?? . I’m still limping on , feet marginally better but worse at night , I described it to my husband as like a firework display going off in my foot . That made him wince somewhat . ! Hands a bit better tho , apart from crumbling nails . Hair is white / silver but I quite like it now , a bit Annie Lennox like x
Great news Murphy. It must be a weight off your mind to have the negative result for the gene. Xxxxx
Jingo glad you’re enjoying your holiday. Wish I was away somewhere nice xxxxxx
I still have very sparse eyebrows and eyelashes are appearing very slowly. Wish they’d hurry up. I’d like to look like me again instead of seeing a stranger in the mirror. My hair’s growing at a reasonable pace tho. I’m going to a wedding on the 17th and it would be nice to have my eyelashes back for then. Fingers crossed! Xxxxx
U2 bp xx
Sorry for late response on this, I’ve been distracted by my mum being poorly again. Tamoxifen actually has a protective effect on bones I am told, so the DEXA bone density scan isn’t usually offered. I am only getting one because I have a pre-existing spine problem, to set a baseline for future monitoring. In fact I was always told by my orthopaedic docs that HRT in due course would help protect my spine from deterioration as I got older but of course being Er+ that’s not an option any more.
Switzerland sounds lovely! In fact anywhere except rainy “dreich” Edinburgh would be good!
Hope everyone has something nice lined up for the holiday weekend :robothappy:
Hi Jingo. What is your bloods form? I never had one. I guess every unit has its own ways! Yours scarily involves a form with stuff listed on it that makes you worry but I suspect that these things will be “routine”. I’m sure we’ll all be interested to hear about the markers though, if you manage to extract any info on the subject from your onc.
My first day back at work is tomorrow - arghhh! I have been off for 7 months. This has made me reflect a bit on what’s happened to me, and I know that if I hadn’t found my lump when I did last July I might well have been gone by now. So, although this time has been hard, it’s been time I have valued. Thanks everyone for helping me through!!!
I feel ready to get back to work - equally I could quite happily never go back. But alas my lottery numbers haven’t come up. Although I’ll do loads of hours from home I am only going in to the office three afternoons this week and next and then building up from there.
My hair hasn’t come in enough to go au naturel - my scalp still shines through on the top at the front. A foray into (temporary) colouring turned it ginger/pink LOL. So I will go back in scarves - the team have never seen me without the wig, so scarves will hopefully serve as an intermediary before my soon-to-be-revealed short grey do. My poor, confused mum has twice failed to recognise me in a scarf though, so the wig might have to remain for her.
Hope everyone is enjoying the Easter sunshine. We’re off for a long walk along a river trail today. And we might just end up in a pub…:robotwink:
Still struggling with my feet . The skin is breaking down under my toes and really really hurts . Have smothered on sudocreme . 3 more radio to go and have had no effects so far . Hair grown back after only 7 weeks , I can go out with no hat and that’s great . Apart from my feet I feel fine now , however not being able to walk without pain is a bit demoralising to say the least !
Peta , sorry you are still going thru the mill . I hope your cough goes quickly . I’ve been paranoid about getting a cough in case I coughed and got zapped in the wrong place !
Linzz I hope work was good to you on your first day .
My GP has told me to up the dose of my meds until I get some relief with my feet , but the fact is the chemo has damaged them and only time can heal them . I had 1 dx and then 8 px chemo so that was 11 wks of the nerve wrecking stuff so no wonder it’s effected me .
2 more rads to go , a little tired but that’s all , my skin is really good so far so maybe radio will be kinder to me than chemo.
Love to everyone x