Oh my, reading this J, Em, Caroline, I am even more depressed about radiotherapy and hormone therapy. My oncologist hasn't discussed this with me yet as he didn't want to talk about it too early, but next Friday is my last chemo then I see him on Monday so guess I have it all to come. I really don't want to do radio as I have over 2 hour round trip and don't know how I'll have the energy. I have my recon surgery 3 weeks after chemo finishes then 3 weeks to recover before radio. Hormones sound horrendous if the side effects are worse than chemo I don't know how we're supposed to cope with it for 5/10 years!!! What a nightmare journey we're all on.
ooops... that posted before I was ready.
Re the rads... I had a similar journey time and thats the worst of it and the hospital I went to was also extremely busy and appointments didnt always run to time .Although they were pretty good at letting folk know how long we would be expected to wait so at least we could go off and get a coffee etc....to kill time..
I would recommend a good book and a large spoonful of patience.
Marli ..... sorry your still feeling so low about everything. Have you thought about maybe talking your worries and options over with another member of your onc tream? BCN or the helpline on here ???
This whole thing is so overwhelming and we truly need all the support we can get. Its hard to make decisions without knowing all the facts. Your Onc team owe it to you to give clarity.
I tend to write all my questions down when I see mine a my memory hopeless.
Sending you both hugs and hope you get some peace of mind very soon.
Lots of Love xxx
I think your onc is very luckly you didnt smack him right in his insentitive mouth! You poor thing talk about crushing you when your feeling down! Sounds like he needs training in bedside manner.
Hoping you got some re assurance/clarity and empathy from your BCN.
If not it might be worth thinking about speaking to another menber of the onc team for the clarity you need.
Not that Im sexist but I find it much easier to discuss BC and the treatment with a women. I'm blessed to have an mainly female tream and on the one occasion that I did see a male, looking back, he kind of spoke to my husband rather than me. Looky for him I wasn't mu usual self...
I'm sorry oncologist left you feeling so homicidal, but I think that is exactly where I am at the moment too 😞
I feel so rotten I can't even see the point of last chemo on Wednesday.
My oncologist said they could "pop" my ovaries out like it was shelling peas. But absolutely no one seems to be able to tell me the effect hormone therapy will have on my (oestrogen driven) lipoedema. I saw my GP and her actual response was "I don't know - do what you want".
I'm definitely not going ahead with radiotherapy. I feel more devastated now than when I was told I had cancer.
I'm sorry to rain on everyones parade when everyone is being jolly about finishing. I just feel quite hopeless right now.
Marli - so sorry about your wrist! I hope it isn't painful and you have lots of help to wait on you 🙂
Can't believe it - just when you think things can't get worse!! Been shopping this morning and slipped and have broken my wrist. What a total fool am I - never broken a bone except for my little toe. Hope pot if off in time for surgery. xx
Tomcat ..... so sorry to hear you are suffering so much. Hope you can get to see your Oncologist very soon and get some relief from the pain asap.
Sarah ... yes this is my second episode. The last was in 2010 and was DCIS. I had the cancer removed followed by radiotherapy. My Oncologist telsl me that this time it isnt a reoccurrence but a new cancer (same breast) but Im not convinced but hay what can I do.....
Re radiotherapy. For me it was every day for 3 weeks.
A week before the treatment started I was carefully measured and three permanent dots were tattooed around the area to be treated. This was painless......and yes Ive still got the marks.
The marks allow the staff to be very precise about the area needing the rads. They carefully measure and move you into the exact position before each treatment.
The actual radiotherapy is painless and take a few minutes. It happens whilst laying down, arm above head and the radiotherapy machine moves around you then beeps and thats it ..... done.
I was told not to use any perfumed products what so ever during treatment this includes deodorant. I found this hard because I love my products but anyway I just used simple shampoo/shower gel for the three weeks.
Also to wear a loose or no bra. Not great if breasts are ample as mine are but post surgery bra fine.
Skin can break down toward the end of the three weeks and mine did a little but was quickly sorted and healed up and also it made me feel very tired but hay thats nothing new girls!
The worst thing about rads for me was the travelling every day for 3 week as the hospital was a bit of a trek.
It truly is nothing like as hard going as chemo.
Hope this makes sense and Ive not rambled on too much........right Im going for pre chemo blood test..
Good Luck today Sarah......oooo last one.....HURRAY!!
Wow so much going on - keep going girls.
I have now had 4 AC and 6 Taxols. 6 Taxols to go.
I love the idea of coconut fluff on your head. I think mine is growing rather than falling but no one else is convinced so we shall see.
I am finding I am in terrible pain right now. I have nerve issues in my left leg, it is always cold and my foot just isn't working right (shoes keep falling off too). I have terrible bone pain in random places but mainly in my back, hip, leg and ankle on my left leg. I am currently taking Tramadol which is a narcotic and Optalgyn (something you dont have in the UK) together. It isn't perfect but it is better than nothing.
7th Taxol tomorrow and I want to make an appointment with the oncologist maybe for Sunday - we shall see when I can get in. I wish he worked Thursdays when I go to the hospital as its a 70km round trip as it is.
I want to find out about better pain relief as I am struggling like this when stand or move from sitting. I can walk but moving from stop is a problem. the more I sit for work the more I struggle after work!
I also want to know about Radiotherapy as I have heard some stories about 30 days here - which I dont have. I have exactly 6 weeks from the day of my last TAxol to my brothers wedding in the UK! I wasn't epecting such a long run so I need some more info and fast. Rather scared about that - its bad enough going in once a week. not looking forward to daily thats for sure,
Hazeir ... Congrats on finishing chemo and PICC line out .... whoop whoop!!!!
Wishing you a speedy recovery from chemotherapy and lots of luck with the surgery.
My Op was back in October (single mastectomy) and I recovered very well. My BCN was allocated when I was diagnosed and has been in regular contact throughout. She phoned after each chemo cycle and has been very supportive especially on the bad days.
Honestly, for me chemo has been much harder than surgery. My final blast will be this Thursday and then 5 years hormone therapy. Roll on life getting life back.
Marli... Hope your final Chemo goes ahead next week as planned and hope you get some clarity re your cardio problems etc next week.
Re the extra week recovery. Ive been finding it harder to recover each cycle since number 4 in terms of fatigue and some SE have been harder to manage than others. Last cycle I found myself feeling quite low and really didnt want this to spiral downwards. So I met with my Oncologist to discuss delaying number 6 in order to not only allow myself to recover more physically but also emotionally and she agreed.
I am feeling stronger physically but nothing like my pre chemo self. Emotionally.... it's harder.
My Oncologist offered me some good advice. She told me not to expect to 'ping back' after chemo as it takes a good 6 weeks for the chemotherapy drugs to leave the body and then can take between 2 and 4 months to recover.
Here's hoping we all have a speedy recovery xx
Well done Hazelr on completing chemo. Whoopee !!!! AND the PICC line out.
It must be very unsettling now having to think about the next stage of surgery and all the appointments and tests relating to it. Are you going for immediate reconstruction or are you having radiotherapy next?
I thought that a BC Nurse was allocated when diagnosed. I was and saw her once before chemo and expect her to contact me after it is finished to discuss surgery. I think you should ring your hospital and ask to speak to a BC Nurse and she should be able to advise and reassure you regarding your surgery.
I have my last one next Wednesday (8th) and saw my surgeon to discuss mastectomy and reconstruction. Now need to see Plastic Surgeon, have CT scans, MRI and cardiologist before surgery predicted for approx. mid May. Got to see cardiologist because Herceptin has been suspended because of changes in the heart but the appointment is not until the day after chemo so have not idea what is going to happen .
Caroline - was pleased to hear that you were able to delay your chemo for a week - will be interested to know how you feel as that will indicate how we will react when we are finished.
How are you feeling now Em. A little more settled I hope.
Tomcat - how goes things with you?
Hope everyone is coping ok and looking forward to the finishing line. Much love to all . Marli xx
Very quiet on here hoping everyone ok and coping.
J .. hope you have recovered from you hospital admission.
Emm ... Hoping you are feeling a bit more settled about your treatment.
Im feeling thankful for an extra week of recovery time and think Im ready for final chemo on Thursday.
Wishing everyone well if having treatment this week.
Love Caroline x
Emm sorry to hear about your dilemma. It sounds like youve got some tough decisions to consider and you need all the support you can get to help you. I do hope you are feeling more settled about your situation but if not Im just wondering if it might help to talk it over with one of the workers at The Haven.
Honestly, I carn't recommend them enough and even if you don't live near one of there centres they will speak to you on the phone. I've been struggling emotionally lately about the future and I went to talk things over with Debbie (she is an ex senior BCN) at The Haven in Leeds and she absolutely understood how Im feeling and gave me some good/sound advice. Ive also got a treatment plan to help me to move on and I suppose cope.
Hope this helps xx
Marli .. sorry to hear about your heart being effected by your treatment. I hope your been taken good care of.
I saw Onc today and my 6th and final treatment has been delayed by a week and Im soooo relieved as Im warn down by the whole thing.
Looking forward to a week of feeling well.
Hoping everyone else ok.
Lots of Love xxx
So right about not knowing what is best for us. Have asked for copies of onc clinic reports to be sent so I can try to work out what is happening because I feel a little in the dark. Next decision is about mastectomy and reconstruction operation - am waiting to see breast surgeon.
Think an early night and a good sleep should set you up for tomorrow. You could ring the Helpline and have a chat with them to put your mind at rest. Sleep tight. x
I think I am probably just a bit overwhelmed with all the information at the moment. I'll give it some time, and think things through.
I am really sorry about your Herceptin - but better they found out instead of just carrying on? I think thats what I'm finding hard - there really is no easy way to know what to do for the best, is there?
Early night for me I think 🙂
Em - sorry you are feeling confused after your appointment with the onc. There is a lot to think about. Don't know what angiosarcom is - sorry! Is it the chance that the radiotherapy can damage the heart? Probably understand concerns re lymph - I have it in my breast.
Regarding Tamoxifen and weight - I managed to loose a stone and a half with weight watchers after my treatment stopped. Also had exercise on prescription from doctor and did aquarobics which really helped. Take some time to think about your options and perhaps get an earlier appointment with your new doctor to discuss things. My onc went on maternity leave and with first appointment with new once found out heart had been effected by Herceptin so that has been stopped pending investigations.
We are here to listen to your concerns and some might even be able to give real practical advice. Try to have a good night and think about it tomorrow when you feel fresh. xx
I saw the oncologist this afternoon, and I didn't come away feeling as positive as I would have liked 😞
I was already on the fence about radiotherapy, and am terrified about angiosarcoma as I already have lymphedema. Add to that the possibility of extra side effects because of my weight. But then there is the (apparently considerable) risk of bc coming back if I don't have the rads... Now I wonder if I should have had mx rather than wle?
Then we started on hormone treatment - Tamoxifen might exacerbate weight problems so alternative is chemical menopause or having my ovaries removed. Having no hormone treatment basically means I've had chemo for nothing.
And now my doc has gone on a break for a year! So I have to have a new doctor, and make these decisions. I know I am not feeling at my best after treatment 5 last week, but at the moment I just feel like I will do nothing, and take my chances.
Glad you all sounding perky.....
The sunshine and the first signs of spring are definitely helping and
of course the end is in sight for many of us. It kinda feels like a new start if you know what I mean.
Sarah Jane .... Lovely to hear the date went well. There is nothing like the first flush of a new romance and I love your positive outlook on life even though youve been through so much. Dare I ask if a second date is planned? Go girl!!
J.....So glad your starting to pick up and if youve found someone who can go the distance through the bad times ... hang on to him. Ive realised that my husband is my true sole mate. We have had out ups and downs but he has held my hand through all the sh*t and is still here even though I do look like a tortoise EVERY morning.
Im slapping on the makeup every single day too (apart from the bad days) and it helps me to feel a bit better about the way I look just now.
I know your trying to work through the chemo but do try to make time for a Looking Good Feeling Better session as will really give you a lift. I picked up some nice little makeup tips for the tortoise head too...lol. Didnt get a goody bag, as someone mentioned on here but really enjoyed the session and chatting to others in same situation was helpful.
Ive decided that Im definitely going to delay my last chemo by a week. I need a break and another week to recover from number 5 will give me the umph to get to the end. Also, will feel ok for one of the two weeks of the Easter school holidays.... Seeing Onc Wednesday to discuss.
Think will also show my head to the very weak sunshine today to encourage a bit of re growth. Dont think will last very long as still pretty cool out there.
Enjoy the day everyone. Lots of Love xx
I'm really pleased the date went well Sarahjane 🙂
And glad you are feeling stronger J - long may it continue!
Be careful of those heads in the sun - our skin is very sensitive, and I only recent found out that women who have had bc are more prone to some skin cancers. So splash on the spf please 😄
Have a good day all.
What a shame Em , don't think next one is for about 10 years!! Was cloudy here but could still see the eclipse . It is now clear blue sky in Co. Durham - going to hang out the washing and may have a cuppa on the patio. The sun really is a tonic. xx
Have a good evening Sarahjane. 🙂
No noticeable eclipse here in Kent, Marli. At least, not one that I noticed! Anyone know when the next one is - I have some unused glasses that I want to get my moneysworth from.
Take care all.
Sarahjane - your posts this morning have really been a tonic. Looking forward to you joining our party - quite a group of us now. Sounds like, Jammy Dodgers, choccie biscuits and perhaps a glass of bubbly for us !!
Brows seem to return fairly quickly ladies as I remember, if that helps. Think Brows and lashes make us more anxious than hair ! Estee Lauder pencil I got at the LGFB workshop is great , has a wax section that really is good.
It seems that some partners can't deal with our BC and do a runner and disappear , I remember that from a couple of ladies 5 years ago.
Hope you have a lovely evening Sarah jane. You are so you are right about needing to laugh through all of this rubbish.
Everyone else - have a lovely day. Been watching the eclipse from my kitchen which made me smile. Love Marli xxx