Oh motherland is extra funny!! I’ve seen it!!
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Thanks @naughty_boob counselling is great and this lady is amazing as she does provide perspectives and makes me reflect on myself without taking side.
Yeah I mean am still shocked about oncologist. Then you make me realise I write in English and clearly speak well cause you understand v clearly all I said in my previous message therefore it was deffo the doc that messed up and not me 
am not going mad.
I hope you have less side effects soon xx
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Hi Ladies, I am back at work this week so responses are slower. First day back today. Its been a killer. Luckily a four day week for me as I didn’t think I’d manage a full week. Already wishing for the weekend but one of my new things is trying to enjoy each day a bit more rather than living for the weekend. It is a work in progress.
@pinklilli3s sorry to hear about your oncologist. Mixing you up with another patient is unforgivable. Considering how often the nurses check our names and dates of birth you would think the doctors would do the same. I am sure he won’t make the same mistake again now you have complained. In terms of your other post it sounds like your boyfriend is also dealing with a lot. Maybe counselling would be good for him, perhaps easier for a counsellor to help him work out how to make progress in his life and support you and his family rather than you having to try and help him when you have limited capacity. My partner got very stressed out during my treatment. He had previously lost his best friend to cancer and his mum died a few years after. I think having several close people who are ill at the same time is a lot. Having said all that, I did say to my partner that I couldn’t be his support for me having cancer and he needed to speak to his friends and/or macmillan as I already felt I was dealing with a lot mentally and couldn’t take on his stress/worries too. We’ve found a way but it has been hard at times for both of us. Cancer really does put a lot of pressure on relationships. I think also because cancer really does make you think about what you want in life it is bound to make us all review our relationships whether that be partners, family or friends and I expect all of us will end up changing at least something in some of these areas. I hope you work out what is right for you with the help of your counsellor and go from there.
@copperycat I know what you mean about January. It does seem like a very long grey month! I only ever think about the questions I want to ask after my consultation has finished. It sounds like you might be similar thinking about your queries regarding the change in scans. I think I might start calling the breast cancer nurse with these questions. Were you allocated a support nurse at the start. They might be able to tell you why things have changed or find out for you. Lastly well done on getting through your first radiotherapy. Another treatment completed.
@naughty_boob sorry to hear you are experiencing new side effects with the radiotherapy. Hopefully they won’t last too long.
@daffodil1 sorry to hear your are feeling overwhelmed. I am sure your friends will understand now you’ve explained. I feel like my friends think that now chemo is over I can ‘get back to normal’. Not quite sure what the new normal will look like but pretty sure there isn’t any going back.
@plum1 are you home yet?
As ever much love to everyone on the channel. We are getting there, tough as it is. I have my pre-surgery consultation next week so another step on the road for me. Hopefully I will get my surgery date next week at the consultation.
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Thank you so so much for your kind words and it’s great to have your perspective. Thank you for sharing and I am glad you have found a way. You are more than right that cancer has put a lot of pressure on our relationship, at time the steroids and hormones were talking for me and when it’s been 3 yrs of happiness, it’s hard to realise that things have changed so dramatically so quickly, however I do think that you are 100% right, I’ve never look to the future and live in the present more than now. But again that feeling of looking forward to the future probably only resonate w cancer people, because I have learnt to appreciate the smallest things in life, like being able to take a breath without being in pain, having a normal 
in the morning lol, be hungry etc…
So I think cancer has precipitated conversations that I knew would happen/needed to happen in perhaps a year or so or when I was ready to buy etc… but it’s just happened/happening now.
Having people sick around you is not fun I acknowledge that and he’s already lost an aunt to cancer last year. I suggested counselling to him. I have however so very little energy atm and whilst I can be supportive and want to be, I have to recognise that unfortunately am still the one who needs help, chemo isn’t over w its shannenigans, clearly, and I also do feel he’s leaving me in the middle of it all, I don’t have a job, don’t have family here, he was my family 
but luckily found out through this experience I have a good friends support network 
so whilst it’s hard, I think it’s best to move forward. You never move on from someone you loved and a relationship you enjoyed, it remains part of you, especially when it was made of good moments and its enriched you, however you learn to know what’s better for you and learn to listen that inner voice. Back to booking overpriced holiday for one I guess!!!
Anyway! Am curious any you cold capping and kept your hair or some of your hair? I have some left and always get anxious every time I wash it but due to wash it tomorrow and always hope I get some left afterwards.
Good luck with the pre op xxx
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Hi everyone. Frazzled, lovely to hear from you and just wanted to wish you luck being at work. I’m so impressed that you are back already. Hope you can ease in gradually and have a lovely restful weekend.
Pinklili, not good about your oncologist. Some medical people seem to forget they are dealing with human beings. Hope you find some peace about your relationship too, must be really hard dealing with that on top of everything else.
I seem to have a bunch of ulcers in my mouth now. Guess it’s being run down after all the chemo.
Naughtyboob how are you doing now after the radiotherapy?
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Hi copperycat, how are you finding the radiotherapy? Hope they explain to you why they are changing tests too so you understand that decision.
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Hi @frazzledmcsazza thank you , yes I need to understand why the change . I did speak to a nurse before they made the change and she suggested I seek a referral to a Musculoskeletal expert if the PET scan came back showing the lesion is benign. So maybe this is my oncologist’s way of doing this in a roundabout way. I’m in awe you are back at work , and hope you find it a smooth ride back into it all. I’m planning for the end of February but will wait and see how energy levels are after radio finishes.
@daffodil sorry you are having post chemo mouth ulcers. Hope your team have given you something for that. Radio is going ok so far. Mild nausea and a pain in my armpit so far which seems to be normal.
@pinklilli3s sending you big hugs, its so painful for you to go through all this. Relationships are difficult for all concerned.we need to conserve our energy for getting through treatment and getting better . It’s hard being supportive to people we love when we don’t have the wherewithal ourselves . I hope you find a way through with help of your good friends and family xx
@plum1 hope your are home from hospital in the way to recovery xx
@annemanc how did the op go? Hope you are home and recovering well xx
Take care everyone, have good weeks if possible 
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Hi everyone,
Thanks for your concern, I am still in hospital but hoping to be discharged tomorrow- I didn’t feel happy to go home to an empty flat and today was the earliest my parents could get back to London, plus the team here seem to have been dragging their heels on setting up district nurses/ after care, they took some convincing that due to the location of the abcess I can’t really take care of it on my own, with the best will in the world I just don’t bend that way (and don’t have eyes in my arse)!! Feel a bit like I’ve outstayed my welcome, but it is what it is!
Had my delayed Phesgo jab yesterday and a visit from my BC nurse, I think the most frustrating thing is being told something different every time I talk to someone. My lovely oncologist said I need to be completely healed from this before we can contemplate the lumpectomy, which will poss be 4-6 weeks- then the BC nurse comes in and says it could all happen in 3 weeks! I don’t want to delay things but I also don’t think I can handle two things at once and I definitely don’t want to risk further infection/complications… I just want to get everyone in a room rather than having the same (but slightly different) chat with three different people!
@pinklilli3s I’m sorry you’re going through tricky stuff with your partner. I agree that this definitely shifts priorities and perspectives- I’m definitely pivoting towards a drama-free life and realising who is and isn’t worth my time and effort.
@frazzledmcsazza i hope work is going ok, 4 full days is ambitious for the first week back! I tried to check in with emails/colleagues/projects yesterday out of boredom and got chased away 
Hoping I’ll be able to do a bit from Monday once I’m home as otherwise I’ll go a bit mad- both the boredom and anxiety, I’ve got a fairly new/green team and while they can muddle through, I like things done properly 
Love to everyone with treatment this week xx
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Hi @plum1 hope you’re out of there soon enough. You did make me laugh when you said you don’t have eyes to see your derriere get looked after you’re absolutely right cause wound changing on your own is challenging!! Good luck once you’re out
@frazzledmcsazza how is your week going? Don’t hesitate to adjust your work hours and take it progressively if you need for a few weeks and build up…they have to accommodate. (HR lady talking here 
!!)
With regards to the rash and mild temperature this could be caused by the immunotherapy drugs - which I’ve received since October - but apparently it can happen any time.
I picked up a prescription if steroids this afternoon. You’ll never guess the dose. Bear in mind I am tiny 5.1
16 mg 
I took 8 mg this afternoon and need to take another 8mg at 6pm. If any of you have any cleaning that needs doing or any kids entertainment, dinner cooking, baking of any kind, or work done, HR queries or dog walking I have a full 12h ahead of free time on steroids so please send your request through!!! I already feel it kicking in 
I am the seeing the oncologist again in a couple of days. Am due to receive immunotherapy -pembro- for another 8 months so it begs the question whether my body will accept it or not.
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@pinklilli3s you seem to know what you want and are making it happen. Sad that it means the end of your relationship but if it is not making you happy or your future plans just don’t align then it is the right decision. Perhaps mid-cancer is exactly the right time for some radical changes to get us on a better more joyful path long-term. Think of all the interesting people you will meet on the holidays for one and the lack of compromising for a bit. Doing what you want, when you want with the people you want. I love my partner but I also quite liked my single life pre-partner. Got to find the happiness in wherever you are in life regardless of relationship status.
@daffodil1 don’t be too impressed by my being back to work. I work from home (normally its hybrid but am fully WFH until treatment completes) so it is pretty easy to get to and very easy to have a lunchtime snooze if needed. Having said that my best laid plans of easing in sort of went out the window and I am back on normal hours already. I have booked Friday afternoon off and same for next few weeks try to and make sure I get some extra rest. I have also warned my colleagues I am not firing on all cylinders and to bear with me. So far it has been okay apart from being annoyed with my own manager who has zero emotional intelligence and hasn’t asked once how I am doing. I normally let him off for being rubbish but this week I just thought FFS. I hope your ulcers heal soon and if not you get them to give you some medication for them.
@copperycat good luck with the continued radiotherapy I hope it is not too draining. How often do you have the treatments?
@plum so glad to hear you are nearly on your way home and super impressed you have stood your ground and got them to arrange the help you need. I know what you mean about different professionals different opinions. Hope you get some clarity soon and enjoy being taken care of by your parents.
Love to you all.
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Thanks my dear. I would definitely initiate a conversation w your manager and mention how you feel even if they don’t ask. Maybe they’re too scared?
I think it’s important they know where you stand
Thank you, it’s not too bad so far. I have 5 sessions in total with the last one on Friday.
I bumped into my oncologist after my radio session today. I had emailed him earlier asking about changing to an MRI from a PET scan and he had replied to say why he had made that decision. But when he met me later in person, he said he was sorry he couldn’t give me exact details of what they are looking for as the radiologists are the experts not him. And then said he was already doing more than he did for his other patients by arranging an MRI through the Musculoskeletal radiologists for example , and emailing me directly (like I should be grateful or something). And that once he had proved that it was not metastatic, that I should be pleased. It was very odd. Anyway, I am having it on Tuesday so will have to wait and see what it shows.
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Thank you for sharing at what must be a very emotional time for you. It can’t be easy ending a long term relationship let alone during cancer treatment.
@frazzledmcsazza you are a star, working during your treatment when you could easily be sign off. I know you say you’re WFH but it still a lot. I can’t believe your manager is not enquiring how you are. I thought they had an o Lito check on your well-being when you are ill/receiving treatment. I wouldn’t be sure if they just think well you are working so I don’t need to bother. Maybe you should get a Fit for Work note to say you can’t work and they’ll be soon on your case! I do one haven’t worked since my diagnosis. My Headteacher suggested I needed time to process my diagnosis, then test after test then surgery, chemo and now radiotherapy. I haven’t been back. I work in primary school and there is always so many infections, so not the best place for someone with cancer and being immune suppressed.
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Hi @daffodil1
Finished radiotherapy just over a week ago. Very tired and achy in the back and chest area. Told this is normal and there could be more side effects 2 weeks after finishing.
Had my first Herceptin injection at home today. Male nurse was lovely, had a great chat about our love of Star Trek! He was allocated an hour for a 3/5 minute injection with a bit of ‘paperwork’ on a tablet.
Hope you are well. What is going on with your treatment plan now ? doctor prescribed Corsodyl for sore mouth.
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Hi @plum1
So nice to hear from you. Sorry you’re still in hospital but it sounds like it’s the best place for you😘 you made me laugh about not having eyes in your bum!
It must be so frustrating that the doctors and medical staff are telling you different things. Maybe you could suggest a combined meeting. You want the right advise first time you’ve been through enough.
Wishing you well in your recovery and subsequent surgery.
@copperycat your oncologist is an arse! That was my first thought as I read your comments. It’s their job to explain things to you and why they need to be done. He’s not doing you a favour he’s doing his job referring you to the most appropriate people! God this makes my blood boil. 
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Hi naughtyboob
Lovely to hear from you. Sorry to hear you’re still experiencing side effects from the radiotherapy.
Plum1 really hope you’re home now.
Unfortunately it’s my turn now to be in hospital as I seem to have picked up my son’s cold so they’ve asked me to come in to the hosp to check me over on the ward. Apparently I have a slight temp 37.8. They are going to do bloods and blood culture and give me antibiotics in case. My heart rate is still up too so they are going to do an ECG and chest x-ray.
I do feel a bit fed up to be honest.
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Hi @daffodil1 so sorry to hear this. I hope everything comes back okay and you are sent home sooner rather than later.
@naughty_boob I think I would definitely not be working if my environment was a School. Good call by your headteacher. My manager did come through in the end in our regular catch-up and even managed to remember I was having extra issues helping my mum who has memory issues a few weeks back. He is good at the practical stuff and would give me any time I asked for. Just not good with the emotional intelligence stuff.
@copperycat I hope your last session of rads went well today.
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Oh dear @daffodil1 being in hospital, it’s surprising how a cold can develop with a suppressed immune system. I hope they find the right antibiotic as I had to have 4 different ones back in November.
Hopefully you won’t be in too long
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So pleased your manager eventually came through for a catch up. Sorry to hear you are having to help your Mum with memory issues, that can’t be easy on to of your treatment.
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Hi all, apparently I have COVID . Think I must have caught it from my son, they are happy for me to go home though. Just waiting for discharge papers. I’m finally in a side room on an oncology ward.
Let’s hope symptoms don’t get any worse. Feel pretty ropey. They are giving me antibiotics just in case a chest infection materialises.
I had to push to see someone from oncology. V relieved to see one of the consultants as the registrar downstairs was quite vague and think they just wanted me out once they knew it was COVID!
Love to all of you
xxxx
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