Day 5 'T’2 and feeling utterly crap…still. Thank god ive got a huge comfy sofa to live on! Attempted to start a jigsaw but fingertips so numb cant pick up the pieces and my eyes just dont seem to focus either…sigh. As opposed to last session and the diarrhoea this time im constipated and bloated. However im blaming my other steroids as im on 35 mg prednisone a day for my dermatomyositis which is quite high so that could be making me ache even more…
I keep wishing i felt up to having a lovely browse around the n shops but no way can i do it yet. Havent even driven since June and am stuck in a village with no transport. Th is is due to the muscle weakness, just darent get behind the wheel!
A neighbour brought me some homemade tiramisu today which im sure was lovely but couldnt taste a thing…this is so annoying!!!
6 pm and back in bed so tired and achey. Just want to cry and feel sorry for myself. All food tastes horrid so just eating soup. Really concerned about how weak I am. Sorry all I am so lucky in my support but just feel like I don’t want to play thus game any more.
Think everyone a bit down tonight so I am not helping. Scarborough to small for pkaces like haven but I have a massage whenever I can and it is lovely it has kept me sane these last two years. Going to get gel nails on Wed as my nails are so thin and fragile.
Going to blub now and then sleep some more.
Hopefully the sun will be shining in my head tomorrow and all will be well again. Think I will ring my BCN.
Hope everyone elses SE are on the up.
Nette x
Just a massive hig to everyone feeling crap tonight xxxxxxxx
Thinking of you all on this awful journey.
Sharon Osbourne put it well this morning on Lorraine - she said there is a sisterhood and an invisible bond so even though we dont know each other in real terms its nice to know we are all here to lend support
Hi All
T#2 day 8
Having complete meltdown today. Sobbed to unit and BCN. Just beside myself. All the boggy bears are coming out and just want to cry.
Sorry gang. In theory I know it is just low bloods and too much time to think cos just so tired. At least I got dressed by noon.
Thats it for today as I don’t want to drag everyone down.
Bubblebee and Julie we will b at Castle Hill for 15 days we must be able to sort something. We r taking caravan to south of Beverley to cut travel, more when we get times.
Nette x
Nette hope you ok ? Dont worry about letting it out it has to come out sometime my love. Would be nice for you, Julie and Bumble to meet up and give support to each other. Just think you are almostat the end of the worst leg of this journey and you will have a chemo free xmas
I went to GP this am as was feeling rotten and has given me antibiotics says got respiratoty tract infection. feeling bit better now but sense of taste has left me and eveything is flavourless.
Hope everyone else coping as best we can through this
Looks like this week is not a good one for JJs. Hope we get a boost of energy and lots of positive thoughts coming our way soon.
I managed to step out today after 5 days, I’d almost forgotten there is a life out there. Due to have an ultrasound on Friday to check progress. To be honest, I can’t feel much of difference in the size of my lump. I can’t help thinking they should have done more tests before sending me to chemo chair. Never mind, I guess I have to put this down to experience too. If this hadn’t happened to me, I’d never known how I look like with very little hair on my head. What starring me in the mirror is a baby monkey… ::smileyhappy:
BOF, hope your first T wasn’t very harsh…!
Sending everyone a big hug. We will beat this Beast…
One of our August girls has got shingles Mahsa so I said to her that you had been there with it. She had a swelling under her eye the size of a plum so went to gp and they dx shingles. How did you get yours diagnosed?
Lovely post by pigsy again. You are so good at remembering what everyone is up to! I got back to work as soon as possible as it helps me to feel normal. I wont allow myself to sit at home and dwell onthings if I can avoid it.
Went to see ONC yesterday and she was shocked at the state of my hands. Said it was the first time she had seen a patient with palmar plantar that severe. So treatment delayed for a week and then reduced dose of tax for last 2 sessions. She gave me the choice of going back to FEC but wasn’t overly keen as the combination of Fect & T works best and also, the E in FEC is bad for your heart in the long term (she did say 5 sessions would still be in the safe zone but she would edge towards trying to stay with the tax if I was willing to try the reduced dosage).
Have to admit I had a good blub on her this time which I have never done before. I guess that is just everything building up.
Went shopping afterwards and got stuff for my nieces 18th birthday which made me feel a whole lot better I also got myself some new clothes as I have lost 4 stone since April and nothing fits! Have to dig out my old clothes from before I put the weight on, but it’s always nice to have something new.
Went in to work today with a sticker still ont he top I was wearing and the price lable on my new boots. Colleagues thought it was hilarious and duly took the mickey - I can blame chemo brain
Mahsa - love the baby monkey comment. I was watching monkey world on tv last week and saw the orangutan and thought, that looks familiar lol
NetteW - don’t blame you at all for being tearful and dont feel bad about it. We are allowed to feel down from time to time, but as piggsy says, today you feel like crap, but tomorrow you will feel better
Bumblebee - I have found adding brown or red sauce to my food to help a lot with the tastebuds issue. I’m only just getting mine back after my last tax on 19th Sept.
Box of frogs - it’s hard when you don’t have lots of support isn’t it. I’ve been so lucky that I am still very friendly with my ex and even get along well with his new partner. They took me out on the weekend for a few hours and a pub lunch which was lovely.
Make sure you ask loads of questions about the rads if you are unsure about anything. I have found my team to be very good at answering anything you need to/ want to know. Even when you ask them to expalin something again.
Fec done T#2 day 8
After complete meltdown yesterday feel much better today. I think thrush is a little better but nothing tastes good yet. I am finding sparkling water reasonable and I think it is keaving a bit of a sweet taste in my mouth. I have also upped the teeth brushing but I am back to using milk teeth brushes as my gums are sore.
Went and had gel nails done today which meant I left the house for the first time in a week for more than a short local walk.
I think I am over the worst of T for this cycle and feel much more positive. I really think the reduced dose has helped. I willmget back into the threads tomorrow.
Just popped in to say hi from cold and breezy London. Hope we are just quiet due to lack of motivation and not because of nasty physical SEs!
I am due to see the BCN later on today to discuss my concerns and perhaps to talk about surgery. Would be good to know what you think of your BCN? Do you think they are doing a great job, or just there to tick one of the boxes?
Let’s all imagine we are somewhere warm, beautiful. Facing the sea with it’s all glories and no baby monkeys on site. Just a little baby bear for a long bear hugs.
Just a quicky
Just spoken to my GP who asked if I was having flu jap I said yes 5 days before next dose. She queried with unjt who have said I must only have after chemo within first 4 days.
As on 4th day I am too tired to move I have had to make it on the day after chemo. I didn’t think I needed to check just that it needed to be close to chemo day.
Looks like we need to have the actual conversation with the chemo unit. Take nothing for granted. They also approved thrush tablets until end of treatment even though long term taking of tablet can cause side effects.
Happy days back later busy day today with massage at 11 then visitors due this after and more this evening.
Hi JJ’s. Well I have a chest infection complete with gruff voice and hacking cough! Started antibiotics and feel rotten. Managed to mime the hymns at my friends funeral this afternoon and not cough during the service.
Tamsin I’m feeling the nerves in preparation for Monday’s fun too. Did your wee one chose Macbeth? It’s always been Tudor wear here and it’s amazing what you can knock up from old curtajns.
Nette poor you and your tastbuds and thrush, wish I could come up with a magic cure for you. The T is bringing us all down it’s amazing how it affects our moods.
Chez are you feeling better?
Piggsy have a wonderful weekend.
Mahsa my first BCN (from 5 yeras ago) was and is fab, she now holds a senior managerial post in cancer care but still manages to check in and see how I’m doing which is more than the new young BCN’s do. My orangutan hair is growing but I now have monkey mouth, which is that my lips stick to my dry teeth !!!
Julie My nails are attractively ridged and odd brown thumb nails. Scared to cover them in case of infection.
Hope Bof F and all are feeling minimal SE. I’m going to make a cup of lemon amd honey
love to all Kat xxx
Kat hope you feeling better although the antibiotics give another host of SE dont they? Hope the funeral went as well as these things can and she had a good send off that she would have been proud of.
Tamsin hope you managing to sleep better Ive got my flu jab next Thurs few days before chemo
Piggsy glad to see tyou feeling your old self again.
Well in true cheza bad luck style Ive had a crap few days. Went on Wed for heart scan as due to start herceptin and they discovered that the line from t he portacath that leads to heart is full of blood clots! I had to go immediately to Christies for a blood thinning injection and now I have to have them every single day in the stomach for at least three months. Stomach already starting to bruise. Im so angry that there was no monitoring after they inserted the port if they are aware that can be a possible complication. If I didnt have the heart scan which was for something else it would nt have been discovered til it was prob too late and would have travelled to lungs. The port has to stay in for time being as removing it would dislodge clot and again risk travel to lungs etc so the plan is to keep it in for the weekly chemo and then after that in 3 months time look at how it is and maybe by then the injectable form of herceptin may be available. Who knows what will happen. Am completely and utterly fed up with it all. It just seems to keep throwing more crap at me until I cant take anymore. I also am on antibiotics for throat infection and wisdom tooth infection. Sorry Im not my normal cheery self ladies but am just fed up. THink if it wasnt for the two boys would have thrown in towel by now.
BTW Lynda are you ok I know you were having rough time with first tax??
Sorry to see some of you have nasty coughs and colds. My unit told me not to have the flu jab as I should really have it before starting chemo and it wasn’t available at that timje. Strange how they all give such different advice isn’t it!
Piggsy - glad to hear you are feeling a bit more like your old self The weight I lost was a mix of conscious effort between April & July, then lack of tastebuds/desire for food during chemo. Like you I used to be a bread and carb fiend but I cut them right down (can’t stomach bread since being on chemo which helps). Weight has fallen off with the mix of low carb and fasting days. I feel so much better in myself for it.
Benedictus/Tamsin - I have terrible trouble sleeping for about a week after chemo, it gradually then gets better. I asked for sleeping tabs on cycle 4 as I’d had enough and they were given with no problem. Still only got about 6 hours a night, but it was 6 hours of uninterrupted bliss
Chezza - so sorry to hear about the probs with your port I had a small lump along my vein in my arm after my last dunking and I convinced myself I was going to have an embolism! Really hope it all gets sorted for you.
I’m making the most of my weeks delay and am pleased to say that the extra time between this cycle is having a great effect on my piles. External one shrunk to almost nothing which is bloomin welcome news.
Oh Tamsin another blinking delay its so frustrating isnt it. My chemo will end 6th Jan if no delays so we may well be the last two standing so to speak!!!
Kat dont want to alarm you re the port but they couldnt get blood out of mine either and that shoud have alerted them to the possibility of blood clots . Also I didnt have any other symptoms of clot such as swelling and pain in arm or around the neck so yes try and get bit checked out even if its just to ease your worries.
Thanks Deb for the good wishes and hoping you enjoy your extra week of chemo freedom. Congrats on losing all that weight too thats some achievement
I had a small lump along my vein in my arm after my last dunking and I convinced myself I was going to have an embolism! Really hope it all gets sorted for you.