Sorry for not posting for a while. Life just seems busy sometimes. Partly cancer stuff (appointments) and partly like getting a bit closer to normal. My hyperthyroid meds have very very slowly been getting me better. I can’t measure it in days but week on week there is an improvement. I can walk around again, get out of a chair a bit more easily and drive but can’t really get very far or exert myself very much. But hoping things will continue to get better.
I start radiotherapy next Thursday for two weeks so that will be another big hurdle out the way. I think I have had my last herceptin as I am on a trial that is half the treatments. Still torn about whether this is the right decision but my peripheral neuropathy has been getting worse so it probably is right decision.
Really lovely to hear about everyone’s progress in terms of treatment, holidays and exercise. Feels like people’s lives are moving towards their own new version of normal which is great.
I hope everyone is doing okay and has enjoyed some early summer sun. I have been gardening most weekends trying to get my back garden into some kind of shape for summer. Been nice seeing things growing and doing something small for the future.
So nice to hear from you and glad that the thyroid medication is working.
I found this about the 9 instead of 18 Herceptin and the results seemed really good. I have also heard on here there is a new trial called HER2 radical.
I’m at 13/18 Herceptin and just had my MUGA scan to check heart function, my ejection fraction from the left ventricle has reduced from 68% to 60%. Normal range is 55-70% so hopefully I will still be in normal range. I think the cardio toxicity is a big reason for having 9 as well as costs for the NHS.
I had a wonderful week away in Northumberland, visited Bamburgh castle and the dog had a lovely run on the massive beach. Also had a trip across the border to St Abbs in Scotland where they filmed a bit of Marvel Avengers End game. We are big movie buffs. Watched the film the other day and it was so lovely to see it on screen, although there was a bit of CGI. I love a superhero film, I had some T-shirts that I wear to all my treatments, the staff during chemo thought it was great.
Still waiting on the lymphoedema referral,
Be thinking of you during your radiotherapy, make sure you start moisturising now and keep doing it. I had mine in January and the breast care nurse says to do it every day still.
There is a monthly radiotherapy group that you may want to join.
Hiya, Glad the Northumberland hols went well. It is a lovely part of the world. I didn’t know some Marvel locations were in the UK. Something to look out for on my next trip further afield than the next town! HER2 radical is the trial I am on. The headline is that it is the same outcome as 18 cycles but the original journal seem to say it might be slightly (<1% difference) less effective. But it is the numb fingers which have made me stick with it.
It sounds like your heart is holding up and well within the normal range which is great news. Sorry to hear your other referral is slow. Hopefully you will hear soon.
I’ll take your advice and start moisturising like a good 'un.
@naughty_boob@annemanc@copperycat@daffodil1@frazzledmcsazza@plum1@Shi, hopefully all goes well.
I am thinking of you all
I am back to work from May, days off as I accumulate loads of annual leave from last year, and now I am back full time, and I am happy with that, I felt is time to leave the comfort of the house. I am tired but also happy to be back.
Mammogram came back clear, blood test results all good.
Hopefully you all done the treatment, if not I wish you all the best health and happiness. I am on Zoladex and tamoxifen, tolerating all, a bit rash on my arms( I got antihistamines), and pain on my joints and bones( I take magnesium glicinate) , tired at the second part of the day, hot flushes not to bad mostly on the night.
Take care and big hugs
PS: At the end of August I will run with a few of my colleagues work, to the Pink marathon in Kilkenny Ireland
I will send you pictures,
I lost 10 kg from my weight, with intermittent fasting, eating only from 12am-6pm, carbohydrates out, my hair grows back🎉
So lovely to hear from you and that you are doing so well. Well done for losing the weight, I’m still struggling. I’ve increased some exercise like walking but feel rough after my Herceptin injections, luckily I have only 2 more to go. I still have some chest pain but I’ve seen a physio who said I have a trapped nerve in my neck and a lymphoedema who said I don’t have that. One of the nurse who does my Herceptin injection said it’s probably radiotherapy and could take up to a year to feel better😔
I find it hard to pick up weights, one shopping bag at a time takes forever. I wanted to get on with some weight training but it’s so sore.
I had my annual mammogram last week and they said it will probably 4 weeks for results due to holidays. A letter in the post if all ok and a phone call if they need to see me. I was warned there could be a call back due to scaring showing on the image which they want to do extra checks on.
I did a Moving Forward course a few weeks ago and eventually met 4 lovely ladies who live more locally and 10 others within 20 miles. It was such a great course, very flexible with lots of time to chat and share our experience. A breast care nurse came to answer our questions in the second week. I would highly recommend it if you haven’t done one already. (Virtual and face to face).
I’m on Letrozole and due another Zometa infusion mid October. I wa shaving so many issues with Letrozole, aches and pains in my joints, hot flushes (loads between 7pm and 7am and some so hot I just couldn’t cool down), my sleep was horrendous, I tried Sleepio app (free for cancer patients) but it didn’t take into account my medication! I intimate areas were sore and painful. I had been referred to a Menopause Specialist on the NHS but after 4 months waiting I decided to pay privately. I booked on Friday and saw her Monday. I was prescribed Fezolinetant/Veoza on a private prescription to combat hot flushes, within 4 days the severity had reduced and now 6 weeks on the frequency also. She also asked the GP to prescribe lowest dose vaginal oestrogen in the form of Imvaggis (internal) and Blissel (external). Eventually got them from GP who wouldn’t prescribe without a specialist letter. I feel so much better now.
I did a post
I’m also having some more counselling with a local lady who I spoke to during Covid. She’s so lovely, I’ve had 2 session so far and feel more positive than I did with all the session with the previous counsellor.
I had my leaving assembly at work and officially finish on the 31 August. (school year end). It was lovely to see al the children and staff, two others also took redundancy and early retirement, we’ll be meeting for coffee! When I sat in the hall, I thought I miss this then realised I couldn’t remember hardly anyone’s name, how on earth could I teach. I regularly volunteer at the local foodbank and on this forum which keeps me busy. I enjoy giving back and lucky to be in a situation where maybe I don’t have to work. In a year or so I may decide I want to work again but probably not in a school.
Off for a few days in Shropshire soon so something to look forward to.
I’m glad to hear from you, I understand you’ve been through a lot of hard days. I hope that soon you feel strong again and forget about everything.
Like you going back to school was strange as the staff were very welcoming and made me feel welcome, the children in my group were very happy to see me back even the parents even if they didn’t know what happened to me.
Now I work in preschool with the 2-3 year old group. I realized that I fit in better than school students. Try to see what suits you, we are not the same person who worked before, we tire very easily and we are emotionally sensitive.
We have to rediscover our body and understand what needs we have.The oncologist told me that I will always have bone and joint pains, they don’t go away no matter what I take, also the hot flashes, we’ll just get tolerate it.
I’m glad you meet new people and have a chat, I was lonely and didn’t want to see anyone around me😞But now I’m trying to integrate and socialise more.
I would have been happy if we were close to see each other and share our stories, but we never know Maybe someday you visit Ireland and see you @Shi the marathon will take a place on 1 of September, I received the email confirmation. I will send you pictures:heart_eyes:. Hopefully you are doing well.
All my best dear pinky friends
Hey am good, lots happened and thanks for checking in. How are you? Been on holiday, riding, family, amazing.
Am good, but now really under the weather post immuno 3 weeks in , I’ve lost my voice, summer cold or whatever (not my spirit though lol) and whilst I still have some immunotherapy left, maybe 1 or 2, I think my body is done w it all and I will stop. It’s coming up to the one year anniversary of finding out and I want to stop all this and move one…focus on my next riding holiday and get my energy back.
The dog business is doing ok, I got scammed for a fence tradesman so that out my inspection wbthe the council sadly on hold -fencing is a priority and safety requirements.
I am teaching weekly at local yard and gosh the amount of drama is unbelievable.
Get your popcorn … Read only if you have time to spare haha
All clients are graded and this kid today has been over graded for some reason and couldn’t follow the lesson. Cut a long story short, it wasn’t safe, she couldn’t control the horse, I gave her instructions she didn’t follow, parents interjected in the lesson, then screamed in the lesson at me, called me patronising and the kid exited the lesson. There’s more to it but that’s the jist and that’s a LOT and bad enough! Parents are theirs and their kids worst enemy some times.
Anyway we all have a group chat where you report anything major but I wasn’t going in the details of it all on there, just said she was over graded and would benefit from more private lessons.
Thennn (get more popcorn!) some b* atch is an instructor and belittled me in the group chat. She had nothing nice to say, thought she saw or heard what happened, or bit of it but bits of it does make the story, she didn’t mind her own business and felt the need to also message me privately at 9.30pm this evening to tell me off, how I was wrong and blah blah blah, and apparently there was a sreaming fit on the yard.
Am like b* tch you weren’t there, you stir sh*t, you weren’t in my lesson, don’t know what happened, and the best thing you can do right now dude, is at at least asked questions and support a fellow instructor not dig them in the ground! If anything is to be discussed it will be w the yard manager. I felt I had to remind her to stay in her lane. I’ll keep you posted if I am allowed back to teach next Sunday dam the horse world is rotten by entitled little people with misplaced big ego and low vag energy
Great to know you are doing well and feeling the same as me that you’ve had so much treatment you need it over. At least it’s not too long now.
Sorry to hear about your horse teaching issues, yes parents can be the worst. Some only see one side and think their child is ‘special’ ‘gifted’ etc when they lack concentration, commitment etc. luckily within school I didn’t have to deal with the parents watching the lessons. You would think the stables have a policy that parents can watch but should not get involved while the lesson is on. All the staff should have your back and no belittle you.
Glad the dog business is doing well. Not missing HR then?
Funnily enough this lady apologised this morning.
I do miss HR, a bit, the nice side of HR, helping people and obviously the ££, but also being in a team. I do not miss, the corporate rigidity, the back to back meetings and the “no we can’t do this”. I am still in contact with my previous HR boss.
I think this month is going to be quiet -she hopes- and will allow me to regroup, reset (once more!) and get this garden fencing job done so I can get the dog licence and start earning money and have more than one dog boarding at a time. I also need to train for this next riding holiday. People are like but you don’t have to prove anything to anyone. Baaabe … Am doing this for me! Not for anyone else and I’ve always done this. People and their opinions sometimes, I just wish they stayed quiet
You took redundancy, how you enjoying retirement? I see you volunteer which is great. Any holiday planned? Big hugs xx
pinklilli that’s a shame to hear, you were trying to protect the rider if things are beyond their capabilities it is not safe for both them and the horse. Hopefully the parent will see that there are more hours required of lessons to ensure competency before progressing to a level their capabilities can handle. Money can’t buy talent and natural ability, it can buy lessons to teach it and even then that can differ from student to student Shi xx
look forward to seeing that, think your amazing doing that you should look at tge moonwalk in London next may too there are a few of us looking into it for next year already Shi xx
Haven’t had a pension money yet! Not even sure when I’ll get it, probably end of September as I officially finish 31 August.
As I’m still having Herceptin, I feel that I’m still in treatment. I had an injection last Thursday and feel very achy, tired, need to rest more after a walk and even falling asleep mid afternoon. I could suggest I’m just resting my eyes but I’m really tired and do take a nap. I’ve learnt to listen to my body. I’m fatigued most of the time and struggle to get out of bed before 8am, some days it’s after 9am. I wouldn’t be able to work as I had to be in by 8am.
Hoping with my new medication my sleep will improve and hopefully the fatigue will reduce. I remember the Moving Forward course mention cancer related fatigue and that everyone reacts differently.
We are away for a short break soon and hoping to book something end of September after my Herceptin finishes, not sure where yet.
Hope you get your fencing sorted soon and you can enjoy more dogs. Having our dog has been great, he snuggles when I feel rotten and we play when I’m well. He seems to know what I need.
The menopause and cancer charity are doing an event in September at Coworth hotel and spa in September, I looked where it is and it’s not so far from Windsor Great Park (I think you mentioned you’d ridden your horses there) so it made me think of you. Unfortunately for me I would have just had my last Herceptin and don’t think I could drive the 2 hours.
What date is it in September? I have a small spare room (one single sofa bed) but you’re welcome to stay at mine or we could simply meet up for a coffee, if you feel like it. Let me know. I have a holiday mid September xx
Hi Pinky girls, hopefully you are all doing well.
I am feeling well, as I told you I am back to work full time, from May, not bad at all, tired at the end of the week.
Is anyone else on tamoxifen and Zoladex injection? How you feeling about hot flushes and bones pain?
I went on yesterday in Kilkenny, Ireland, for fundraising breast cancer Very Pink Run, we did 4km. Lovely day, and great archives.
Hugs to all and best health wishes
Lovely photos ! Congratulations on doing the 4k. Good to see you are getting through this next phase despite the side effects of the meds
I’m doing ok. Have good days and bad days , mostly good . But anxiety rears its horrible head unexpectedly. I did a moving forward course, which was really helpful. And met some lovely women in similar circumstances and we are going to meet up next month.
I still have back pain but my MRI isn’t showing anything has changed with my tumour. They are going to review it again in a years time . In the meantime I have gone privately to see a pain specialist who has recommended a host of things to try , including physio and some meds to help block the pain. All working so far
Hope everyone is ok. This after phase is so tricky. I didn’t expect it to be this hard. Totally lost my confidence . Time will help I’m sure. I have three counselling sessions left so I’ll make good use of them .
Hi dear, I am sorry for you, I can understand you how you feel.
I had been on the similar mood and is horrible to have no power to stay alive, mental or physical.
Ask your doctor if you are allowed to take Magnesium bysglicinate, I start on the same time with tamoxifen and Zoladex and I can say that everything changed, I am happy, I am full of life, I want to be more active, and my feelings to, I am very optimistic.
Hopefully your group meeting will be beneficial for you, sharing our feelings with someone else is good for us.
Please keep your head up and don’t give up.
I am looking at the back and I am impressed how better I am after all.
Big hug take care
… Read only if you have time to spare haha
) some b* atch is an instructor and belittled me in the group chat. She had nothing nice to say, thought she saw or heard what happened, or bit of it but bits of it does make the story, she didn’t mind her own business and felt the need to also message me privately at 9.30pm this evening to tell me off, how I was wrong and blah blah blah, and apparently there was a sreaming fit on the yard.
