22-05-2017 09:15 PM
22-05-2017 09:08 PM
Hi - hope everyone is OK. I've done a full day at work today which was quite enjoyable, mainly because nearly everyone was out of the office at a meeting and I joined via video-conference so I didn't have all the hassle of travelling.
WMJ - in order to send a private message I think you need to use a laptop or similar as I can't seem to send a private message on my phone. You have to be logged in, click on my name and then it gives the option of sending me a message. I have actually messaged you so you might just be able to do a reply if that helps.
Agarside - I'm impressed you managed to get to the Take That concert given that you are in the middle of the SE's but pleased that you enjoyed it. I have to say that whilst all of the SE's are rubbish, the lack of taste made me particularly miserable especially as I enjoy my food. Even now there are some things that I don't enjoy eating because I associate them with being tasteless during the chemo. Chocolate appears to be the exception!
I have my appointment with the surgeon tomorrow when hopefully I will get the biopsy results - have to say I am getting more and more nervous by the hour so I'm glad I'm at work tomorrow to distract me.
I will also have to have my seroma drained - at the moment I have no need of the cumfi/softi insert for my bra on that side as it actually looks like my boob has grown back. I've had to pop it in on the non-mastectomy side to even things up ha ha.
To add insult to injury I think I have started the menopause as I have been having terrible hot flushes over the last week but only during the night. I've gone from someone who can sleep for 8 hours solid no problems to having about 90 minutes then waking up with a flush and then it takes me 30-45 mins to get back to sleep and so the cycle continues. It starts in my head and feels like I am going to spontaneously combust. I've had to move into the spare bedroom so that I can have all the windows open (OH hates having the windows open at night as he gets too cold). I'm debating whether to invest in one of those Chillow Pillows to see if that helps.
I've had most mobile numbers messaged to me (just waiting for Evie, SALowry and WMJ). Once I have the majority I will set up the list and send out a test message.
Right well wish me luck for tomorrow and fingers crossed that the news is good!
22-05-2017 07:28 PM
Well, I wasn't sure that losing one drain would make much of a difference, but carrying one around is so much easier, even though they were in the same bag. There's also more space for my phone, and some painkillers (yes, I am keeping my phone in a bag with my bodily fluids at the moment). Looking forward to getting rid of the other one on Thursday.
I have just taken my sturdy sports bra off and replaced it with a crop top for a bit of a break, and because there is a little sore patch under my boob. Now I have all sorts of weird sensations. The closest I can come to describing them are like braxton hicks contractions in my boob!
22-05-2017 03:56 PM
Here is a pic or our view! I really had a great time, but oh such a long day. I did contact the arean (Manchester) before going as I would be taking a large bag with meds in, and had to make contact with medics there, in case I didnt feel well. The nurse was an ex oncology nurse so was completely ok.
I was able to use disabled entrance, but steps to seats was a bit of a climb. But managed it!
I had to sit down a lot, as just sooo tired but the buzz of the music keeps you motivated! Was glad to be home after mind. All good, I was the driver so immensly pleased I did it!
Day 3 - as normal, SE's kick in and I just feel sh*te - just keep saying to myself, this is the LAST time!!
These were the worse, with sickness as well. Just lay on sofa or bed watching Greys Anatomy... just no energy, headaches, bone pain and this horrible mouth where nothing tastes as it should... arhgh..
So Day 5 now, and it should be "Big Mac" night... just not feeling up to going out, like last time, so will have to be a take away for me...
I just need my energy back!!
Am reading all posts and trying to keep up, hoping everyone doing ok, and feeling much better!
22-05-2017 02:38 PM
21-05-2017 08:43 PM
WMJ - great that you are home and that you feel better than expected. Pain about the allergy to the dressings. The dressings nurse also used that Cavlilon liquid on me - it's like that spray on plasters you can buy and I haven't had any issues with it. Interesting that your surgeon doesn't use drains - isn't it strange how we all have such different treatment.
Oh and also great news about your hair. Mine is now growing faster in the middle of my head than on the sides so very soon I am going to look like a punk!
Cookie - hugs to you from me too. Thanks for offering to set up the group for us, that's kind. I'll PM you my details. I'm very impressed at all the things you have done today but not going to tell my family or they will expect me to get off the sofa and help!!
Fiddlercrab - yes, one drain done!
Jacquie - hope your next week off helps and that your exhaustion starts to go. Lots of films on the sofa I think.
Agarside - how was Take That? I am guessing the SEs might have started to kick in but really hope they haven't.
Love to all
21-05-2017 05:19 PM
WMJ - I suddenly had an allergy to various dressings etc after being fine with them for a while, particularly Tegaderm. I am OK with steristrips, silicon dressings and, strangely, cheap packets of plasters from Poundland! You can ask for something called Cavilon (not sure of correct spelling) but it's a clear liquid that they can apply before putting on any dressings and it protects the skin. This also worked for me really well.
Looks like a WhatsApp group is preferred - from what I can gather looking at the posts the likely participants are Jacquie, Evie, Agarside, Fiddlercrab, Snail, SALowry and WMJ and myself. So, if everyone wants to private message me their phone numbers I can get this set up. If you want to remain anonymous (eg not providing your real names) that is fine but I can assure you I am not an axe murderer/stalker although I am probably mad!
I had my seroma drained last Thursday but it has re-filled over the weekend - in fact, I don't really need any chicken fillets/stuffing in my bra on that side as it has evened out a bit with the fluid build up. I think they will syringe it out on Tuesday. Good job I am numb on that side as at least it doesn't hurt when they do it.
Hope everyone had a nice weekend. I met a friend on Saturday and we pigged out on tea and cake! Today I have been planting some pots up and trying to tidy up the garden. I am a bit achey now as it's been a few months since I did any intensive gardening. I can definitely feel all that squatting, bending and kneeling. Oh yes I also cleaned the car but drew the line at mowing the lawn as I thought it a step too far being less than two weeks after a mastectomy.
I have just bought a FitBit so looking forward to building back up again.
21-05-2017 06:52 AM
Thanks Snail, my first thought was to use a sanitary towel but as it was for the blisters I thought it may be best to use a sterile dressing. However not using anything and appears to be okay overnight. Did you have to have any fluid siringed off? My BCN told me that this maybe a possibility when I see them Tuesday if there has been fluid build up.
BTW. my hair has started to grow a lot over the last few days, I was thrilled to see all the lovely white/grey hairs appearing on my head! 😊To think this time last year I'd have been mortified by grey hair appearing on my head. The issue is it has also started to appear in areas I don't want it, namely my chin 😡
20-05-2017 11:47 PM
20-05-2017 07:06 PM
Hi, Thanks for all the good wishes and asking about me. Got home this afternoon, so had a 2 night stay. ALl went well and fel better than I anticipated. Obviously uncomfortable etc, keeping with the painkillers and started the excecises😯.
OH had a bit of a 'lymphodemia' panic this afternoon because I have had issues with dressings. I now appear to be allergic to any dressing. They sprayed me with a clear dressing, which seems fine, but for some reason put some steri strip across & low and behold I have blisters under the steri strips. Strangeley enough 2 weeks ago the steri strips were fine when port removed! One has now leaked so OH rung and has been out to buy dry pads but can't hold them on with anything & a bra or crop elastic top are both a no no. Just have to se how I go, I am back on Tuesday for them to take a look at the wound.
BTW... no drain, my surgeon doesn't use them!
The numbness is quite bizarre I have to admit.
My rads, fingers crossed are pencilled in to begin 13th June, so I will be joining those of you starting in June on that thread. I also would certainly like to keep in touch as this forum has helped with my sanity through all of this and by the forum I clearly mean you lot. So thanks & that's another hurdle over with. 😘
I will look over the thread and catch up with what's going on in more detail over the next few days.
20-05-2017 06:51 PM
20-05-2017 06:42 PM
Ha I am going to milk the chemo brain for a few months yet - a good excuse for forgetting stuff.
It is very easy to set up a private group on the BCC forum or am happy to do via WhatsApp - just let me know and I can sort out quite quickly.
Just having a moment as a friend of my parents has just emailed me some lovely photos of my Mum from about 5 years ago when they were on holiday in France. I can't believe how well she looked - good memories but has still made me cry.
19-05-2017 07:12 PM
19-05-2017 12:25 PM
ps - just thinking about our group and personally I think whatsapp might be easiest to set up and to use for this sort of chat. I don't use FB much and tend to miss notifications. People might also be happier giving out a mobile number rather than full FB access. Just my thoughts but happy to go with the flow. xx
19-05-2017 11:16 AM
Cookie - thanks for that tip, I seem to think I had heard that somewhere and it makes sense. As you know I have been frustrated by the amount of conflicting info out there. I forgot to speak to my Doc yesterday about such practical advice but I'm seeing an expert nurse on Monday so I'll pass on any more tips when I have seen her. One thing my Doc said is that I won't need deodorant under my bad armpit for a few months - something to do with stuff being cut means I won't sweat there for a while. Hope that's right or that my family/friends will tell me!!
Sorry you feel crap today, tiredness makes everything so much worse. Hope you have a good film/show to curl up on the sofa and watch - but keep the said cat away! No idea when chemo brain will go.........
I'm happy to send you contact details via private message so we can set up a closed group - if you are happy to set up the group, I'm sorry I'm fairly hopeless with setting stuff up so can't advise how to do that.
19-05-2017 10:31 AM
Evie - thanks for updating and good news for you so really pleased. I have just remembered another tip re the prevention of lymphodema - don't use a razor to shave under your arm. Best to use a cream or an electric razor as a slight nick with a "manual" razor can cause a problem.
Agarside - I'm very jealous; friends went a week or so ago and said that they put on a really good show so I hope you feel up to going.
Snail - not liking the sound of the black armpit! Will this go back to normal over time?
I'm feeling a bit crap today - not sure whether it is the side effect of the Herceptin injection I had yesterday. I can't remember if I had a reaction last time but I felt very tired and achey after I had it and then had a rubbish night, being too hot to sleep. Everytime I put my leg out from under the duvet to cool off the cat pounced on my toes. I woke up with a horrible headache.
I had the seroma drained too yesterday - 265ml taken out! Such a relief afterwards although I can see it has started to fill up again and the nurse said it can take 4-6 drains before it gets to a point where the fluid build up is minimal and is left to be reabsorbed. I'm back to see the surgeon on Tuesday so they will recheck it then.
Finally, it was great to read that you would all like some sort of forum so that we can keep up to date with each other. What is everyone's preference? I am happy to set up a Whats App group if everyone sends me their contact details (presumably you can do this by messaging me privately via this forum).
I have no idea how to set up a closed Facebook group but can certainly Google it or maybe Fiddlercrab can give some instruction having mentioned it.
My preference would be FB or WA as I find them easy to access and reply to on my phone. However, I will have a look at setting up a closed thread on the BCC site if people prefer.
If we aim to set something up for the beginning of June that gives sufficient time to check out the best option as we have this thread to communicate on in the meantime.
How long does chemo brain last - I did my online shopping at the weekend with the aim of doing a home-made chicken, goats cheese and leek pie made with filo pastry but forgot to order the blooming filo pastry (and although I like baking, filo pastry is way too faffy for my liking),
19-05-2017 09:30 AM
Agarside - no you didn't mention that! How fab. You will find the energy and this will help you no end, it's just great to do something "normal" - although I guess I can't really call a Take That concert a normal everyday activity. Hope the last T treats you as kindly as possible, and that the fluid goes. Now make sure you come back on tomorrow and make us all jealous about your eve out!