@galdiolus
Thank you for your message you really don’t know how much it means to me this morning! I have taken myself into a really bad place since the appointment practically writing myself off which is silly. The forums and everyone on here are saviours. Xx
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@salbert I’m so glad your dad has pulled through ! He sounds like the proverbial creaking gate bless him x It really takes it out of you emotionally though when these things happen
@anb1 I’m so sorry your Consultant worried you like that , I honestly wish they’d remember that we are human beings not statistics when they talk to us … x
@jeml I love those photos of you and little legs 
I’ve had a single mastectomy but yes I get itching , weird phantom pains , chest walk pain etc … It’s apparently all not uncommon due to nerve irritation or damage x
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Ahhh i knew it would be something to do with nerve pains! I also have a really achey wrist at mo and also middle of my arm at other side of elbow… its been likt it since surgery but aching a lot today. I think i have tonsilitis again though! My throat is sore and i feel dreadfull… my entire body aches. I guess its going to take a while to bounce back after all chemo! Feel for my little love all she has know is mummy poorly for this past bloody year. I need to vent because i feel fed up today 
How are you getting on @arty1 ? X
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@jeml - I feel like I’m running on empty at the moment , driving fifty miles a day ,and running around plus work … my husband has given me strict instructions not to try and do lots of things this week! The weekend bookings are exhausting but we need to keep the business going x
Have a good rant … it’s all very overwhelming isn’t it 
people think when you stop having chemo you’ve magically gone back to normal . They forget about the disfiguring surgeries , the exhausting chemo that takes so much out of your body and takes months to start to recover from . As well as gruelling targeted therapies …
I’ve found it odd where my breast was … I still get strange sensations like it’s still there … then all the weird pains , numbness and itching … I think it’s all par the course 
This time you’ve been having treatment is just a small snapshot of your little girls life … she won’t remember it so try not to be engulfed in mum guilt x I know it’s easier said than done though
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@sms that’s one of the few London/London area hospitals that I’ve never been to… hopefully someone else has some good advice for you 
My oncologist is associated with Mt Vernon and I think he’s quite knowledgeable if you are looking to potentially switch or see someone else.
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Thanks all for the welcome
I have been catching up on all the threads and messages and thank you all for the advice and its lovely to speak to people who understand.
Breast cancer now have been amazing with myself and i have had phone conversation with some amazing woman who have walked me through some of my decisions i need to make.
So thought would also ask you ladies. I have found out i have CHEK-2 gene which increases my chance of getting breast cancer and recurruance. I need to decide what surgery is best. Lumpectomy just remove the cancerous lump, mastectomy to remove whole of the cancerous breast or have a bilateral mastectomy to reduce my risk at the same time. Then need to decide if i want a reconstruction at same time or wait as dont need radiotherapy. Or stay flat.
Feel its alot of options which is alot, especially as im strugglung with chemo fog and side effects and also bad anxiety and panic attacks. I dont want to make a wrong decision, so trying to think of all pros and cons to all the options and feel overwhelmed abit.
Cycle 4 done which wasnt good but 2 more left. Keep just saying i can do this 2 more. But as the day gets closer i really dread the thought of stepping foot in the hospital.
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I think we may consider that, once we get to know how PALS at the current hospital gets ahead on this. A fresh start would be so lovely! Keeping our fingers crossed 
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Oh my dear @grace68 I’m so very relieved that you plucked up the courage to post. You are giving yourself such a hard time that you don’t deserve. I have also questioned whether the hedonistic lifestyle that I led for way too many years was the reason my body went wrong but the genetics oncologist told me that it was probably just a big dose of bad luck. The fact is that we’ll never know so please give yourself a hug and some compassion next time you find yourself beating poor Grace up. I wanted to get the genetics testing done as I believe forewarned is forearmed. I hate the fact that you think any of this is your fault; one of my virtual hugs coming your way. Keep talking to us. Everyone is welcome here.
@anb1 - Can you have a chat with one of BCN nurses about your situation? They are on 0808 800 6000. It still sounds to me like everything is heading in the right direction and perhaps you will have to have Kadcyla if there is any residual cancer left but that’s just a slight change in the treatment path. I’m so sorry that your oncologist’s manner has left you feeling doomed and made you spiral. We have all done it. Give the nurses on here a call for some reassurance. Sending love and positivity.
@carrie5 That’s amazing that you haven’t lost any hair yet. Sounds like the cold cap is working well for you. It doesn’t surprise me that The Caving Granny’s hair follicles are also made of stern stuff!
@sassy3 Best of luck with the next infusion. We’ll be keeping everything crossed for you.
Hi @sshini93 - Despite a bit of a blip, it still sounds like your mum is doing well. Tell her we are cheering her on.
@sms - This is not good. I had to speak to PALS about a completely unrelated matter back last summer and it had the desired effect. I got a call from an Advanced Nurse Practitioner and was given valuable information which led to me resolving a matter that had been outstanding for years. Everyone was very civil and it worked. I would urge you to keep going with your case. Sending you both love and strength.
@jeml I love Haworth. I have been there twice and the second time they were having a World War II day and everyone was dressed in 1940s outfits. It was like walking about on a film set. Lovely to see you out and about living life again and making wonderful memories with your little girl. 
And yes, I sometimes get itching around the scar where I had my lymph node removal. I figure it is nerve damage/repair.
@arty1 That’s a lot to be doing so soon after chemo. I’m still really enjoying saying no to things I would have said yes to without a moment’s hesitation back before bc. Women are too good at running themselves ragged and you’re right, we are still recovering. It’s about getting a balance between doing what you want to but being able to put the brakes on when we feel tired. Easier said than done, I know. I went to London for the weekend with old college friends and have had a couple of bad nights sleep and feel whacked again today. This week is, of course, my beloved Eurovision week and I appear to have organised a full on party for a load of friends who live in my village. Sometimes I am my own worst enemy!! You do so much good for us all with your wise words on here so I hope you can give yourself some words of wisdom and take time out when your batteries are low.
@munchkin1 - I had a single mastectomy and it was absolutely fine. Personally I think I would have had a double mastectomy if I were at increased risk genetically but of course this has to be your decision. I will be having my reconstruction done at the end of next week so I will post to say how it went and what the results are like. I’m not surprised you are feeling overwhelmed. You are getting there with the chemo. You can do it. Can you get something to help with the anxiety? You’re not struggling on with that on your own, are you?
I have taken delivery of some multicoloured butterfly wings that I intend to wear with my rainbow trousers for the Eurovision final this weekend and yes, I will be posting a pic. I felt a bit rubbish last year as I was smack bang in the middle of chemo so this year I am really pushing the boat out!
Love to all
Salbert
x
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@salbert - sadly it’s a case of having to we can’t pay our bills unless I work and I’ve no one to help in the week now that hubby has started a new job … Daughters school is 12 miles away and no school bus 
… tbh though I think I need to get busier ! I’m literally piling on the weight at such a scary rate that I feel I am going to ask my gp to rule out cushings … I’ve put two stone on since November !! I’ve actually started a calorie deficit and I’m still gaining … my oncologist is u nconcerned saying . Oh it’s the steroids but this is not helpful
Now I won’t be organising any street parties ! That does sound stressful and busy ! I love your fun attitude though … I can’t wait to see the butterfly wings !
@sms - I’m sorry your partner is having a rotten time with right royal c**k ups … it’s just not acceptable … it’s stressful enough when you are worried sick without the added incompetence… please do not be put off and push to lodge a complaint . How can hospitals be held to account if people don’t complain ?
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@salbert just been in contact for the first time with my BCN and she referring me to pschiatrist and oncologist called me and changing my antisickness meds as apparently ones im on side effect is anxiety. So hopefully these new ones are now going to help with cycle 5. So fingers crossed things start improving.
Sounds like loads of fun happening in your place for eurovision. Cant wait to see pics x
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@grace68 do stick with us and I absolutely agree with what @salbert said, try not to find fault in yourself and what you did- I think most of us have been there. You CAN redirect that energy to thinking what will help you in future, how can you take good care of yourself to enhance your outcome. Really feel for those having a tough, energy sapping time whether that’s facing the next chemo, making those hard decisions, the complaints procedure or like @arty1 the demands of life when people think you’re better now. This whole business is gruelling and energy sapping and all you ladies on here are incredible in how you face up, share support and experience and won’t let the b…r beat you. This may be an unwise decision on my part in terms of conserving energy, but I’m getting in another cave experience on Saturday . I figure the high of managing it if I can will also energise me! Love, Crazy Granny Carrie
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Hi All,
It’s taken me a while to read through all the posts , @sms, have you had anything back from PALS? Keep a record of everything I put a complaint in verbally then via email, I got a much better response from the email.it’s not fair your other half is going through all of this stuff as well as treatment, please send her my best wishes.
@salbert I’m so pleased your dad has pulled through, these parents keeps us on our toes, don’t they?
@arty1 wow, no wonder your worn out, you have my admiration,this is hard enough as it is and there’s you handing everything, while I feel I’m failing at everything.
First chemo this week- Herceptin on Thursday and then paxitaxel on Friday spilt to see if I have any reactions. The nerves have well and truly kicked it, I’m imagining alsorts!!! Thank you @carrie5 for your comments they have eased some of the fear)My chemo nurse told me of the damages if getting an infection!! but then Told me to go and enjoy my life during chemo. How do I do that if I’m trying to keep germ free, any suggestions or examples would be great.I’m lucky I’m off work for the duration but working from home when I feel like it. I do have the pleasure of looking after my elderly mum and 2 pups at the same time, I’m concerned I won’t be up to it.
Just a quick thank you to everyone here for providing giggles, reassurances and invaluable information @grace68 it’s a horrible situation you are in but this group really does help.
X
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It is indeed worrying and needless to say tiring too. We are waiting for my partner to get better after this Kadcyla cycle and then pick it up again with PALS . Also going to send out an email and have this documented once again from our end to ensure they do something about it on time. We aren’t giving up so easily.
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We haven’t heard back from them yet. It’s been a week now, so our plan is to document this on email as well this week and then pick it up again. As it is, we are so tired and adding these extra layers to the entire process does no good to anybody. But no other way to get through it, we have to keep going !
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Totally agree with you regarding if we don’t complain they will never improve! The issue is that for many medical professionals we are just numbers, they may be seeing several patients in a day or dealing with several cases but that should not deter them from showing basic human values of compassion and care. It is a problem when medical professionals feel they play god and there will be no consequences.
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@jobieejo - If I had my way I’d be watching gardening and home interior videos on TikTok all day and slowly getting fatter 
my treatment day is actually rest day as I’m in the chair for about six hours … so there is that I guess !
I was worried sick before my first chemotherapy because I’m an overthinker and had convinced myself something dreadful would happen … as it happens I was fine with the nab paclitaxel on the day and had a mild reaction to the herceptin which was promptly dealt with … I continue to react to it hence day long infusions and endless steroids still
My chemo finished in Feb and I was beside myself that over winter is surely be hit with some awful nasty etc but I avoided even getting my teen daughters vile colds . For me I couldn’t do a great deal while having chemo as I was just exhausted but still managed a trip to n wales in Jan to see my mum ,walked on the beach . I went for as many walks as I could manage (just short twenty min hops ) I generally avoided having visitors just in case but did go out to the local garden centre with a mask on and even enjoyed Christmas dinner although we had a quiet Christmas at home … do what you feel up to doing … remember your body is being zapped so rest and allow yourself to recover in between cycles , but do things you enjoy … if you are up to going for a walk or visiting somewhere nice then go for it … I personally wore a mask whenever I was indoors just in case … and certainly whenever I go to the hospital I still do xx
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@sms - it’s sadly true I saw a registrar for one if my oncology appointments and the follow up letter never even refered to me by my name . It said “the patient “ it felt somewhat dehumanising … I am not a patient … I’m Erica … I wish we could be seen as people and not just a “diagnosis “
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Erica we see you !! I am so grateful for this community and all the support they provide. Cannot change the empathy levels of the medical community but all we can do is hope for the best. Sending you healing vibes and a day full of sunshine and happiness 
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@sms - You definitely see me in real life with all the weight I’ve put on … it’s certainly been eye opening … as an ex nurse myself … to be on the receiving end of all this treatment … I feel like shouting the line from The Prisoner …”I am not a number!!!”
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You are NOT a number and the weight is just a number and numbers can change 
It just means more of the glorious you for now. Your body is really fighting hard to get this cancer out of you and it is okay if some weight had been put on, you will lose it I’m sure You go Erica!! 
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