Good morning Kaz,
I hope you are well today,
Yesterday, I had a lot of issues logging in and it appears to be the same today.
I am hoping that I continue to do as well as your sister, I’m glad that she went out for lunch. I’m hoping to go into work tomorrow for the day, but I will see how I feel. As today, I feel very tired. I will drink plenty and eat loads of fruits 😊
Thank you re best wishes, I hope for the same for you and your sister. Hugs too xx
I thought I had replied to you this morning but for some reason it hasnt appeared.... been having trouble logging in!
Im so pleased your first session went well, I hope you are feeling ok today. My sister had her 4th session yesterday, again all went fine, although not a great nights sleep, wide awake on her steroids I think! but Shes good, been out for lunch with her friend today.
Her worst days are usually from 4-14.... but mainly just fatigue, hopefully you will get away lightly too!
So pleased to hear I have helped you cope... this forum is wonderful.....
My sister wont post on here, its not for her, she prefers to do things on her own... but for me its been a good source of support and information too. That means Im in a good place to help her through this rollercoaster of a ride!!
Best wishes to you, Dont overdo things and take care!!!
Good morning Kaz, how are you and your sister? My first session went well 😊,
Thank you for your support too, it really helped xx
Thank you, I really appreciate it. I hope all goes well with your sister too. I will let you know how it goes.
Im sending you both a massive hug back 🤗xx
Hi Ally, just want to wish you all the very best for tomorrow....
My sister has her 4th cycle the same day, each session is 3 weeks apart. I am sure you will cope just fine. Hopefully you will have few side effects just like her.
Do let me know how you get on... Massive Hugs right back at you!!
Thank you for your support, I will think of you both too. How far apart are your sister's cycles? Mine are 3 weeks.
I happy for her that she braved the shave, I will definitely do it if the time comes. I have a wig fitting on the 7th March. I am excited about it
I feel that it is such a turberlent journey, I make myself laugh at times. one minute I am upset, the next I am normal. I guess it is apart of the process. I am off of work now, so I plan to do a lot of mindfullness. Someone recommended Maggies, so I will try there.
I will let you know how it goes on Monday, I am sendin you a huge hug too xx
So you will be having your first session the same day my sister has cycle 4.... so I will be thinking of you!
Hopefully all will go well for you too. She braved the shave at the weekend and feels much better for it, the remaining bit of hair she had was all matted so its gone in the bin... she coped fine as at last was ready to do it. She is currently getting her wig revamped and has her courtesy wig whilst its being sorted!
I would advise you get a wig sourced before you need it, they matched her style and colour brilliantly and my Dad didnt even notice she was wearing a wig when she came home with it on as it was such a good match and looks so natural
I hope you are coping ok, I think you will feel less anxious once treatment actually starts
Take care xx
Thank you for your inspiring words. They mean so much. I am sending positive energy back to you xx
your husband sounds like a great man.
Im glad that you got a whole months prescription, I hope I get this treatment too 😁
I will now be saying the small c.. no more big c.
I start my treatment on Monday, I will keep you posted x
Please continue to take care of yourself #WeCanDoThis
I hope that you have a good nights sleep tonight too x
Hi Ally, adrenaline is not a bad thing if you can direct it for good things. It helps with fight, so use it to get through your treatment. Today has been good. I managed a solid sleep, with no midnight wanderings. My poor hubby has put night lights in the hall and landing as he is worried I'll just fall down the stairs!! I am finding each day is a little better, and at clinic last week I was given two whole months prescription......for the second time. 😃. How good is that ? I've got secondaries so need to take meds for however long I can. We all need to remember that treatment these days is so good that it's now cancer with a small c, and we are living through it and with it....not dying from it. You just need to take big deep breaths, and get through one day at a time, pet. X
Thank you, I will definitely get in touch with them. I just feel at the moment I’m operating on adrenaline.. but I need to stop..
I hope that you are well today xx
Hi Ally, I found a lot of help at my local Maggies Centre . I didn't sleep well when I was first diagnosed and, of course, stress isn't good for cancer sufferers. I went on a sleep workshop and it really helped a lot. When a Mindfulness course was offered I took that too. It was helpful being taught how to pull the mind back from racing and being chaotic, and to savour and appreciate what I had. My biggest help comes from attending TaiChi which I tried to do weekly throughout all my treatments. The exercise is good for me, it helps with pain management , it strengthens every part of my body and I do my meditation every night to calm me. I'm living with, not dying from, cancer, and today that's good enough. Tomorrow ...that could be different, but I'll keep trying to fight the good fight. Lots of luck. X
I am feeling much better, I had a tough couple of emotional days. But, I’m ok now. I start chemotherapy on the 18th. I’ve got mixed emotions 🙈. I’m inspired my your sister’s journey and I know that I will be fine. Thank you for your positive words too, I really appreciate them.
That must of been nice for your sister to go home and see her partner for a bit. Im thinking of staying at my sisters for a bit. I will see how I go.
Your job sounds very interesting, each day is not the same. Xx
Hope you are coping ok. My sister has had a good weekend, she has gone back to her flat for a few days in London to spend time with her partner. He was working abroad but has decided to return to the UK to support her while she is undergoing treatment. A big plus for her!
She has had slightly more fatigue with her 3rd cycle, but just 3 more to go!
Me... well I have spent all weekend working in the Emergency dept.... 2 brutal 12 hr shifts! But knowing she has had such a great response to treatment so far gives us all the strength to carry on. I am sure you will get a great response too. Have you got a start date yet for your chemo?
sorry for the late reply. I didn’t receive an email, I just came on to search through the feeds to find you lol
Thank you, I will definitely google them.
How are you and your sister today?
Forgot to say Mai.... no IBC diagnosed, she has locally advanced Ductal Carcinoma, extensive lymph node involvement. Still awaiting clarification on a sclerotic area in her hip, CT and MRI have proved inconclusive. But being treated with Zoledronic Acid anyway as a precaution.
Ally, if you want a great wig and have money to burn, google Sheitel..... wigs for orthodox jewish women who cover their real hair in public. Think my sister went to somewhere in Golders Green, they are used to dealing with other women facing chemo or who suffer from alpoecia. She has to go back next week to get it revamped.... they even give you a courtesy wig to go out in whilst they sort it lol, bit like getting your car serviced! we had a good laugh over that...
Best wishes to you all
That gives me such a boost to hear how well you are doing, we have all been worried sick about my sister. I am a nurse so I know only too well how much of a battle she is facing. However the news from the oncologist last week after really just 2 rounds of chemo was fantastic, even better than he expected!
She had noticed a crusty scaly area on her breast back in August.... mentioned it to the Practice Nurse at the GP when she attended for something unrelated and sadly was told dont worry about it!! Her 7cm tumour was picked up on a routine mammogram at the end of October, thank god she went!
Ally, Im sure you will do very well too, if you are on the same chemo regime as my sister you are getting the very best treatment and they are getting great results with it. She was originally told radical mastectomy post chemo but her oncologist told her last week that this may well now be reviewed and surgery may not now be quite so drastic. Wine is good lol.... she was so very anxious to start with and it helps her to relax and sleep. Not getting hammered but the occasional glass with her evening meal. Anxiety has settled... yours will too as you start on this journey. We actually quite enjoyed her 2nd chemo session.... hahaha, gave us 5 hrs of quality time to sit and chat about anything and everything! The time flew by and the staff at the unit were fabulous. Might have been better to do it in Costa but hey ho.... every cloud!
my biggest problem is that I live 300miles from her and I can only get down south every few weeks, But I support her and my parents as best I can.... lots of phonecalls, texts etc, I go back down next month for a few days, cant wait to see her!
Hi KazB65, sorry to hear of your sisters diagnosis and I'm glad you came to us for help. It really is a very anxious time. Your sister's diagnosis sounds similar to mine. In March 2017 I had a 90mm tumour and 9/12 nodes involved as well as symptoms of IBC (skin involvement). You didn't mention whether your sister's skin was actually broken or whether there was a red "rash" area. Has she had a diagnosis of IBC? The treatment she has been prescribed is the same as IBC protocol anyhow. If your sister would like to read my personal blog she may find it of some comfort: http://lifeafterlola.com/ It is a very scary time and I think the anxiety is something you just have to work through. It takes time to sink in and grasp the enormity of what you are faced with. I've listed lots of ways I coped but just the fact that I have survived a similar diagnosis may be of comfort. Please send my best regards to your sister. xxx
Good evening Kaz,
Thank you for replying, I really appreciate it and letting me know how your sister is doing.
I think, I will definitely have to have a glass of wine too!
Ok regarding your sisters wig and hair, I am currently enquire about a wig now too. I can only imagine how the wig must give her a confidence boost too.
I will I’ll keep you posted to how I am doing, I may need your advice xxx
Hi Ally, sorry that you are having to go through this too.
My sister's chemo regime has gone so far better than expected as she is on some tough drugs looking at what I have read on this forum but she has coped brilliantly. She is otherwise very fit apart from the breast cancer, just has very mild asthma which is well controlled with an inhaler so that is all in her favour. No nausea...just a few mild nosebleeds and a slightly upset tummy on the first cycle which was easily sorted with immodium. As for diet, she is not doing anything in particular, just a healthy balanced diet and the occasional glass of wine!! The Macmillan Nurse recommended that to help her sleep lol. She is taking regular daily walks along the seafront when the weather allows. Her main issue with her chemo regime is general fatigue, but she is currently staying with our parents and my Mum is waiting on her hand and foot!!
Obviously she has lost her hair, which started coming out around the time when her 2nd cycle was due. She is having chemo every 3 weeks. However she spent a small fortune on a fabulous real hair wig, sourced from the Jewish community as she teaches religion so had some contacts to obtain it. This has given her such a massive confidence boost to go out and look just as she always has
Best of luck and keep me posted on how you are doing xx
Thank you for the update, I am so glad that your sister is doing well. I’m also happy for you too, as I can only appreciate how hard it is for you too. My sister is finding it very hard, I’ve asked her to join here too, so she can share how she is feeling and get advice.
I am so happy thstvis is now palpable xx
I will be having exactly the same chemotherapy, can you recommend what your sister’s diet is like please?
Many thanks in advance, Ally xx
Hi, Just thought I would post an update on my sister....
3rd round of neoadjuvant chemo was on Monday and she is coping brilliantly! Apart from fatigue she has had minimal side effects and the anxiety and panic attacks have resolved. She is eating well and managing to sleep.
Today she had a review with her Oncologist and the news is great. Her original 7cm tumour is barely palpable... even he was surprised at just how well it has responded!
3 more rounds of chemo to go and then prepare for surgery but he said today that surgery may not be as drastic as first thought as she is doing so well.
So hang on in there ladies.....
Well my sister has survived her first round of chemo yesterday. She has to go back on Monday for the second half of her drugs as too many to give all in one hit at the first session. She had a small panic attack during her treatment but the Nurses were brilliant and reassured her all was well. She was just washed out afterwards, felt very tired but not much nausea. I will be able to go with her for her second round of treatment at the beginning of January as I have some time off work then. Hopefully that will take the pressure off my Mum and Dad!
Told her to look at it as a positive..... the first step on the road to recovery!
The anxiety surrounding a cancer diagnosis is often the very worst part, I've never known anything like it and actually thought at times It would suffocate me. It does get easier one step at a time but for now medication will help her get it under some control. My Gp was wonderful and allowed me stronger doses of diazepam until it began to work and along with Citalopram it took the edge off and helped me function.
Knowledge is the most helpful tool, as she gets more information about her diagnosis and treatment plan it' becomes more bearable and you get beyond this horrendous diagnosis stage where you feel you won't survive the week to feeling like you can and will cope.
There is so much support across the forum and we have all felt just as your sister does right now, you are not alone Xx Jo
Thanks for your reply Ann,
I am a nurse with 30 + years experience and even I am struggling to suggest anything else to help her cope. Her anxiety about her diagnosis is about as bad as I have ever seen. I have tried to encourage her to maintain some sort of normality in her life and talked to her about her imminent treatment as much as I can but up until now she can barely even talk about it. I wondered if a low dose anti depressant such as citalopram would help to lift her mood. Because she is currently living with my parents it is taking a toll on them too seeing her in such a state. They are fit but both in their 80's!
Maybe some counselling would help, I will suggest it to her and see what she thinks
Sorry to hear what your sister is going through, inevitably anxiety will be there, we all experience it when going through this to varying degrees.
Just a thought, has your sister accessed any counselling support to help her cope? Her team will know who to refer to. Quite a lot of us here have accessed counselling support when going through this, alternatively give the helpline here a ring or Macmillan can help.
Do have a look at chemotherapy in the 'going through treatment' part of the forum. Family members do often post here & we are happy to help.
My 56year old sister was diagnosed with locally advanced Grade 2 Ductal breast cancer 5 weeks ago. She has extensive lymph node involvement and a 7cm tumour which has come through to the skin of her breast. She starts neoadjuvant chemo on Friday and will then need a full mastectomy followed by radiotherapy. Its is HER2 Positive, ER and PO neg. She will receive Carboplatin, Docetaxel, Pertuzumab, Trastuzumab and Zoledronic Acid. So she has a long battle ahead, also waiting on MRI results of a sclerotic area on her hip bone which we are all praying is an old injury. Her biggist issue is currently terrible anxiety and panic attacks which makes eating and sleeping dreadfully difficult. She is taking diazepam [low dose] and zopiclone to sleep but is there anything anyone can suggest to help her cope any better? Breaking my heart seeing her and my elderly parents trying to deal with all of this and I live 300 miles away from them...
what side effects can she expect after her first round of chemo? ,she does have a great wig organised as she knows she will lose her hair