Hi DiKat and everyone
I've just tried (9/8/19) to post a message to the group on Facebook and not sure if I achieved it! So, I am hoping that someone can confirm it got posted OK. It's been a catching up time for me and have read the other posts on there. I've replied about 'anniversaries' & soft drinks for nights out. The message seemed to post with a background colour of lilac. My other messages on FB always go through with blue, so it made me think something was wrong!
Click on envelope at right hand corner st the top. Click on write message icon Put in persons user name and away you go xx
Hi Absolutely Annie.
how are you doing with the rads?
Yes I’m going to the meet up. If you’re going perhaps we could travel together. I can meet you at Euston. 😍😍
always good advice from Drummerswidow. are you coming to the meet up. I think there is going to be another next year.
I expect others have got there before me but Zoledronic Acid and Zometa are the same thing, as you guessed. It is to strengthen bones - Chemo is so hard on bones. It's the outer structure of the bone that it repairs, nothing to do with the marrow inside. Apparently calcium can leach into the blood and fur up arteries so I think Zometa is about stopping that. I had a kind doctor at a review who tried to explain it to me as I was very anti the idea of ZA at the time.
I also have to take Vitamin D3 but I was doing that anyway before BC diagnosis.
Hope that helps.
I'm sure others will have posted already regarding Zometa, I'm just a bit behind with my reading!
I have to have it every 6 months for 3 years, too. Had my first one end of July. Felt OK until the evening and a bit rough for a couple of days - flu like symptoms - I had been warned that these can last for 72 hours. Anyway, took Paracetamol and got through it fine. No further problems.
I think new research always exaggerates and is often withdrawn later, so try not to think about that. Also, year by year is just that and you could lose weight any time. Plus they hardly ever even give you a percentage with these things regarding survival rates and it could be so tiny that you could discount it completely.
Try to avoid all this stuff - it doesn't help and only increases stress. You don't need that!
Pm me your mobile number
Thanks DiKat for the WhatsApp info - will try and link up this weekend.
Daffydilly and Absolutelyannie if you Email Jayne1966 your telephone numbers she will be able to add you x
You need to be added to our chat group. I think it’s Jayne1966 who can do it. I don’t think I can but i’ll Have a look. PM Jayne as I think she will need your mobile number to do it. Enjoy the Birthday celebrations xxxx
Jayne1966 sunnydaze dikat drummers widow
I have downloaded WhatsApp so what do I need to do
Hi all, zoledronic acid is the same as zometa. Very reassuring to know some of you haven’t had any side effects. Sorry for the downbeat post. I think it was just that I thought I only had to take anastrozole and nothing else - wasn’t prepared for the thought of more unknown side effects. Haven’t posted much but have kept up with most of your posts - it helps to know we all have our ups and downs. I can’t change past weight issues, but have been going to slimming world since long before bc, and recommend it to anyone else who could do with shedding a few pounds. I managed to go throughout .Didnt lose much during treatment but didn’t gain either -over 5stone lost so far.
Wishing you all a good weekend. We’re celebrating husbands 70th with a trip to Battle Proms so should prove a distraction for a while😏
I felt a bit achy after my last Zoldronic Acid, but I think I was feeling tired before I had it as I'd only lost my dad the week before. When I had it alongside chemo, the side effects of chemo didn't seem any worse than usual.
Interesting you've mentioned about the Vit D Drummerswidow, I'll check up on that. Like you, I've found counselling helpful.
When I asked about what I could do myself to help prevent a recurrence, alcohol and exercise was mentioned, but nothing was said about weight or diet x
I think we’re all feeling pretty low. Apparently this is normal according to my Oncologist as she discharged me! 🤦♀️. I’m having Zometa and am also overweight. I started Zometa when I was having chemo. My regime was 6 weekly for 3 doses then 6 monthly for 3 years.
You can get flu like symptoms but I never noticed cos it was with my chemo. The one I have had since I don’t think I had any problems. They will probably want you to have a check up on your teeth. In rare cases it can cause a problem. My dentist was happy for me to have the infusions as I go to the dentist regularly and look after my teeth. I weighed up the pros and cons, and decided to go for it. I’m on Letrazole which can affected your bones, osteoporosis, so am happy to have some protection for my bones! I also have been told to take Vitamin D everyday for the next 3 years and then October to March every year.
It’s a constant reminder and the treatment seems to go on and on but I’m managing with it ...... today! Lol.
as for the weight, well I have lost some and have a long way to go. I have read about the overweight stuff and most of the time push it to the back.
You have come along way and are doing really well. The physical side of treatment has ended but the mental impact is still there. I find the counselling I’m having helps. Remember you’re not alone you can rant to us. The WhatsApp is good and funny! And also is a great source of support. Can you talk to your breast cancer nurses. I did try someone like you which this charity offers. It was a great help in the beginning.
Blimey this was an essay! Sorry. You’re going to be okay. Every week there’s something new about cancer and health! Very confusing. Get through this bit THEN think about weight loss. One step at a time xxxxxx
Marykamille, finishing treatment for bc can be hard. I felt exactly like you when I finished my treatment last year. I live in Kent and when I was having chemo during the Winter, my friend invited me to stay with her in Carlisle in the Summer. I thought it was a great idea at the time, but when it came to it I was panicking at the thought of travelling all that way on my own and carrying my bags etc.I think my confidence had been zapped as well during chemo! In the end I did go, but only because one of my daughter's came with me to London and saw me off on the train x
Hi Daffydilly, I'm sorry you're feeling so low. I think finishing treatment is a lot harder than people who've not had bc realise. I've been having Zoldronic Acid infusions during chemo and 6 monthly since finishing and wondering if Zometa is the same thing or similar. Have you been told that it's to strengthen your bones? I've not had any problems with side effects from Zoldronic Acid x
Hey daffydilly sounds like you’re feeling a bit low. Can’t remember if we have already asked you but we have a WhatsApp group now where we are arranging a meet up and generally continue to support each other as well as on here. If you would like to join us email Jayne1966 and she will add you to the group. I’m sure someone will answer about the zometa shortly. It’s not something that’s been mentioned to me. I’m currently half way through rads. It seems never ending 🤗🤗🤗
Think this end is harder. Thought I’d finished active treatment and now have to have zometa infusions for 3years. Anyone else had this? What were the side effects like? That plus the latest research in the news today that survival chances decrease for every year being overweight have just about floored me. Might as well give up now😥😥
You are right, the tail end of this is just as hard to deal with if not more so. I think we are all finding this so please don’t think you are unusual. I have good and bad days and I’m surprised how much I am still affected physically by the chemo even though it’s over 3 months since finishing. Be gentle with yourself and know that we are all still around to support you. We will have another meet up next year so maybe you will feel ready then. Sending hugs 🤗🤗🤗
Marykamille ❤️ Step by step darling 👭👭it’s like being spat out the other end of a hurricane 👭👭day by day and bit by bit you will put your jigsaw puzzle pieces back together ❤️❤️If you are Derbyshire or Yorkshire you can get 4 funded sessions through Macmillan for spirit and soul equine therapy if you wanted to look at that, the lady who runs it is a bc survivor herself and I found the sessions empowering and the bit of the puzzle that helped me to continue to 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Every day 😘😘be gentle with yourself you’ve been so amazing 💪💪😘😘💕💕✨✨Shi xx
The end of all this is indeed as hard as the rest of it! I thought I could go to a conference but as the date got nearer realised that I was being a bit ambitious! I think it’s because we hope to be back to ‘normal ‘! Whatever that is. Xxx
Sorry, Dikat and all the others for the meeting up - just not ready and it will be too far away. I thought I would cope better with the tail end of all this but it's just as hard as all the rest of it was. Can't work out where all the optimism went!
Im sorry to hear your news. It is indeed their loss. Good luck in finding a job, that’s a stress that you don’t need just now. Cancer treatment makes us so vulnerable.
it would be fantastic if you could come on our meet up. If you can manage it, you are welcome to the sofa bed in my hotel room for free, if you can handle sharing a room and if it makes it a bit easier for you to come along.
Shame about the job absolutelyannie. Their loss ❤️ I’m keeping everything crossed that something better will come along soon. Will send you details of meet up 🤗
Hi Absolutely Annie.
Sorry you didn’t get the job. It’s difficult managing on so little money. I hope you can meet up with us all.
Rads is very tiring. I’m still suffering 😔. Off to St Thomas’ tomorrow for my ticker xx
Hi absolutely Annie, sorry you didn’t get the job, you will get one and it’s easy to think if you mention c word it’s that, I’ve not had any trouble getting work and I mention the c, when I’ve not been successful I just think next 👍and keep looking, come on girl, you’ve got a core of steel running through you, you’ll find work, just put your mind to it, because from where I’m standing your blooming amazing 👍😘💕💕✨✨Shi xx
How are you? how are the rads going. Hope all is ok.
I didn't get the job - sure it is because I mentioned the C word. disillusioned as I need a job. cant manage on £73 a week.
I would like details of the meet up but I think it is up north and unless I get work would not be able to get to it. Please message the details through and I will try to work around it. would love to meet everyone
Really shattered today but only 6 more sessions to go.
Hi absolutelyannie and MaryKamille
We have planned a meet up in November and would be lovely to see you both there. Let me know if you are interested then can send you the details privately xx
Drummerswidow Marykamille G and Dikat
Thanks for all your good wishes. Interview done - not too fussed whether I get the job now that I met the panel. I was very frank with them and told them where I had been for the last 6 months. What will be will be. I am not looking forward to going around doing interviews. I have fought all my life to earn my living - perhaps at a cost to my health.
You know I was talking to another lady today whilst I was waiting for my treatment. She has a very rare form of cancer in her leg. To watch her walk gives me pain. She lives on the coast and has to stay in London Monday to Friday as it would be too much to travel daily. The accommodation is not great and she is so far away from her partner and children I felt so bad complaining about a stupid form my GP would not sign.
It sounds awful probably to you ladies but I got a feeling we got off lightly. I know we suffered to get where we are now but talk to other people with different types of cancer and I don't think I could cope at all like the lady today with the tumour on her leg and the professional sportsman who lived a healthy lifestyle yet got liver/rectal cancer.
Glad your rads are going ok.
got to tell you all a funny story - you know us Irish like to chat!!!
I always shout "thanks driver" when I am getting off the bus as driving around London is quite tough and the drivers have 12 hour shift. I was getting along to my bus stop and thought that bus is just going to drive off when I reach it so I am not going to run for it. Anyway I got as far as the door and the driver shouts "come on Mum" . A lovely cheerful young man. Made my day it did and brought a smile to my face.
Thank you absolutelyannie
It does put it all in perspective, doesn't it? It does make you angry if you feel, like that man, that you haven't done anything wrong in your lifestyle. The disease seems absolutely random most of the time.
I can't imagine what the tube is going to be like - but this heatwave won't last - if that's any consolation. I know some people love it but most of us are a bit too fragile for it at the moment. I've heard of people filling a hot water bottle with ice cold water and hugging that!
Very best wishes for the interview and brave you for doing all this! xx
Good luck for for your interview tomorrow. Will be thinking of you. Fingers and paws crossed here.
Blooming GP practice for you. I think they need to be kicked into the touchline! Xx
Sending you lots of good luck for your interview tomorrow ☘️☘️☘️
Halfway through your rads, yay you’re getting there!!
I will be a quarter of the way through after session 5 tomorrow. Going ok so far thank you 🤗🤗🤗
I was really lucky as I had my "Simulator" appointment today where a big circle was drawn ready for the booster rads. I had the form and asked the doctor if she could fill it in and she said no problem and promptly signed the form.
oh I am going to have a rant when I go for my medical certificate.
I had a truly lovely GP who was from Iraq - he couldn't do enough for me (I had known him since 1991). Sadly he had a heart attack and his wife died from brain cancer so he retired early. It is not the same place now as younger people from the Middle East have taken over. I get irate when people don't understand - I was told to send back my work Capability form unsigned by a healthcare professional. I tried to reason that the question would not be on the form if it could be returned without a signature from someone who knew I had cancer. just could not get through to this person
so walked out.
I will have a problem too when my medical certificate runs out - they messed me about something else. Anyway reading up for my job interview tomorrow so hopefully wont be state dependant much longer. not looking forward to the tube journey in this weather but will bring my water with me.
how are your rads going. hopefully not too bad. Tomorrow I will be half-way through. booking a trip "home" to Ireland after all this.
enjoy the heatwave as it is not going to last!!!I hope
Absolutely Annie. Hope it’s not too tiring s day for you. I had to leave my form with the nurses but they did it quickly. I’m lucky as my GP is lovely. Hope you get on okay today. xxx
I don't want to be accused of being racist. But I am fed up of my gp surgery now. Feel that because I am not of a certain faith I am not getting anywhere. They messed me about with my med cert, prescription and now this. I had no trouble until my GP retired. I am going to try to get the Macmillan Nurse at the Marsden to do it tomorrow. I have a strange day as at 11.00am I have Simulator then 11.10am my actual treatment and the doctor wants to see me at 2.15pm. I will look for the nurse in the gap.
My MacMillan breast cancer nurse filled mine in and signed it. It’s disgusting that your GP refused to do it. I think I would put in a complaint but I can be a bolshi cow 😂😂.
Cheers for that you always liven us up.
just wondered if you knew if the rads people would be able to sign my Work Capability Assessment form that I got from the Employment and Allowance people. Macmillian said I would just need to get my doctor to sign this but he refused point blank to sign it - told me to send it back but it clearly says it needs to be completed. really mad with my GP as they have managed to botch up my med cert, my prescription and now this.
I am bringing the form to the Marsden tomorrow so hope someone will sign it
😘❤️😘❤️😘be kind to yourselves, it’s like you’ve sledged down my Everest on a plastic frisbee this journey and you are now getting to your feet heading for the clubhouse for a mulled wine and a fondu, bit wobbly but with every step forward you gain strength and so much joy as you find you all over again and you know what, you’ll look at yourself and say yey this is me and I am proud of me ❤️❤️because you are all amazing, don’t ever forget that 😘😘💕💕✨✨Shi xx
Regarding the two on your ward that didn't make it, I go to Maggies and feel a complete fraud when I hear some of the stories. 27 rounds of chemo etc. 2nd recurrence . met a professional sportsman who told me he never smoked, drank kept fit and was careful of what he eat. He now has liver and rectal cancer. He said he felt so angry because he always had a healthy lifestyle. I came away in tears for the man.
I have been told at the outset that breast cancer is the most common form of cancer and is the easiest to treat. Sitting at the Marsden waiting to be called in for my rads, got talking to another Irish ladies (us Irish are notorious talkers). she has to have 25 sessions for colon cancer. gosh I did feel such a fraud. she was telling me she couldn't eat - I wish I had that complaint as I seem to clear everything in sight and have gained 6kg.
this heat affecting me already - don't know what the tube is going to be like in a suit!!! anyway gotta try it.
off now for a bit of a nap
I absolutely love reading your posts. Although it is so easy to dwell on all the negatives that we have faced and will continue to face, you always manage to point out the positives. That in turn, makes me feel more positive. Thank you for that and good luck to your friends 💕🤗
you are one in a million. I totally get you about family. However sadly my friends let me down and it was my family who provided support. I think sometimes we expect more from family - some of my friends just walked away.
you have kept us going here so I hope you don't dwell or over analyse.
Hope you’re all doing ok, especially Annie and Dikat as they
continue to get on with rads. Sometimes it feels like wading through treacle, especially when
You have other big life issues to
deal with. Clearing out your ML’s house will be tiring emotionally and physically Dikat and I hope it goes as smoothly as it can for you. Xx
Hopeful you will be able to rent it out
ASAP with good tenants.
Annie, the building work sounds really
stressful, especially in the middle of rads. The additional stress of going for an interview is tough too. Good luck with your prep and remember
if you don’t get the job, remember
someone will see your worth, but i hope it’s this one. You are very brave going for an interview.
Mary Kamille, I’m sorry to hear that you’ve had such a terrible time dealing with radiation burns, but pleased to hear you are bouncing back slowly but surely. The black hair sounds amazing!!! Mine has just come back 100% grey. I had about 5% grey previously, so having to deal with grey is very aging and I’ve only just turned 50. Harrumph, but at least my hair is growing back which is a joy, but catching myself in the mirror with my new short crop just reminds me of the pain of breast cancer and it’s harsh treatment. At least we’re still here...
As Drummerswidow widow has stated life will never be the same again and like everyone else I feel like I’m trying to glue back a favourite piece of china. It will never be the same again. I’ll just have to make the very very best out of the new normal, but it’s not easy dealing with recurrence fears and the trauma of what has gone before... We can do this and I can cast around to a couple of friends who are still here 12 and 6 years later, one of them with stage 4 and has just returned from a cycling holiday in Germany. These ladies will be my positive role models , I think.
Have a good day ladies
Yours in sisterhood
Hi MaryKamille and everyone else.
Hope you have had a good weekend. Next week is going to be hot and I’m going to hate!
I have just come back from my sister’s. The visit was okay but I get really tired but keep on going putting ‘a face’ on it! In fact I almost enjoyed the weekend even with her bloody awful spare bed. No good on my poor aching and hurting joints from the Letrazole. And then she said something. That little throwaway remark and I have come away feeling hurt and upset. How do we cope with it? I don’t know but she has made a reasonable weekend not so nice.
Her husband has Parkinson’s and I can see he has deteriorated a bit. I know she has a lot to contend with but sometimes she is just not a nice person.
Don’t know about everyone else but I’m finding it a bit more difficult to cope with it all now chemo and rads are over.
Sorry rant over!