They should give you a date as they are giving the talk aswell. Xxxxx
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Good luck tomorrow TC xx
Good luck t.c and janey. Let us know how you both get on xxxxxx
Well a little disappointed after my appointment today. I should have been seen at 1pm, did not get seen until 3.35pm, only to be told it will be the registrar as the consultant is ill. She basically told me everything my surgeon told me 2 weeks ago. Gave me some leaflets on the chemo I will be having - FEC T and said I need to come back in 2 weeks to meet the consultant and also another appointment which will posted to me to have an introductory appointment with the chemo team. They have said I shoul start within 3 weeks!!! I’m so frustrated with this, I was hoping for a plan today so I knew what was happening and when, but no - more waiting ???
Went to see my GP today and got antibiotics (in case it gets worse), prednisolone steroids for asthma ( but need to check with chemo team whether it will be OK to use them).
Hi Jayney that’s sound like the appointment I had last week. I am due back next week. I can’t understand why they can’t do it all on your first visit . Xx
I don’t understand it either! I’ve had a few appointments because of a the scans I have had! But if your not having them also my first appointment with onc they said I hadn’t healed well enough to start straight away. Is it so you can just get your head round the treatment you are having? Xxxx
My onc did say that I should list all the questions I had after reading the paper work and that next time I would get a tour and that I should know my start date, but this all stemmed from wether my surgery had healed properly xx
Hi folks been for visit to chemo ward armed with anti sickness tablets and after the Insertion of my marker I’m off to have my first session. Went through all the side effects from head to toe and signed consent form. Given a free car parking ticket for the next four months. Basically immune system is low so any sign of infection report it straight away. Had to but a thermometer. If temp goes above 37.5 you have to contact them straight away to receive antibiotics. Was told I could be referred for a wig. You have to pay £65 and the rest is funded by the NHS. Some of these wigs are up to £300.
How am I feeling. I cant sleep its 3.36. I haven’t had my op yet so its the start of a very long
journey. For those of you that have had their ops. I can understand why they want your wounds healed and to be tip top. Any infection could have serious side effects. Otherwise I’ve been told to carry on as normal. Whatever that is. Not to go too far ie holiday. Until Chemo is finished. Need to be near unit if things go wrong. However will make exceptions if you really need to go away. Drink plenty of water xx Hope this helps. Catch up tomorrow xx
Oh an Christmas cant come quick enough. I finish on 30th December. Xx
I know I’m impatient, but my wounds are healed, I’ve signed the consent, read and re read what the side affects are, but still I wait. Luckily I do now have a parking voucher for the hospital, but it’s still the 20 mile round trip which depending on the time of day can take up to an hour each way, which is quite Stengel and exhausting. I was told yesterday I will get a wig voucher for £65 and I will have to pay the rest. This seems to be different for each lady. I think it should be consistent across the country. It looks as though I’m going to ha e to probably pay about £100 myself if I am to get something decent.
im really sorry everyone, I’m on such a downer at the moment, I just want to see light at the end of the tunnel. Hope you are all ok and doing well on your journeys, much love xxx
Ah Jayney so sorry you are feeling like this hopefully things will happen soon. I wish my operation was out of the way and the lump gone. I will check again about the wig I may have got it wrong my end the Policy should be the same across the NHS. Sending hugs, xx
I’m sorry you are on a downer Janey. It’s quite normal to feel this way as you still in limbo and not started treatment and not knowing how you will be with treatment. Once you start you will be more positive but you will still get down days in between but I keep trying to remember I’m heading in the right direction towards getting rid of this bleeping illness! Keep strong and keep your fighting spirit that us ladies do so well big hugs xxxxxxxxx
I printed a calendar one month per a4 sheet of paper to pin up in my study the idea initIally was to record all my various appointments, times to take tabs or day to inject myself etc but what I found most therapeutic was the big cross I put through each day as it ended and best of all was when at the end of the month I could screw a sheet up & throw it in the bin - I guess a bit like an advent calendar. I think it helped me to concentrate a day at a time because when you start off on this awful journey it seems a long way to the finish line.
Also bear in mind that for a day or 2 after you stop taking the steroids you hit a bit of a low, remind urself it’s just the tabs making you feel rubbish & u will bounce back in a day or 2
Take care x
I’m glad you mentioned about the steroids Nikki as I’ve felt really low yesterday and today and took my last steroid Monday. I’ve not felt this down for ages it just seems I’m stuck with this and everyone else’s lives are just carrying on as normal. Just sat here worrying about everything! I hope it passes soon! Xxxx
Scaredchelle my last dose of T was Christmas Eve, (not sure if your on Fec-t but the T bit messes with your tastebuds) and my tastebuds lasted till just after Xmas dinner which was fantastic but alas by teatime they had well & truly gone & sadly the sherry trifle tasted of salty soap ?
Shazza what you’re describing is how I felt ‘proper depressed & feeling very sorry for myself’’ for me it was definitely ‘a steroid low’.
I kept a diary of side effect each month and low and behold a pattern begins to emerge. You’ll feel better soon x
Hi folks had my first session and it was not as scary as I imagined. Its always the unknown that’s the worst. Ill be asking you all about the op towards the end of my treatment. Lots of info in wigs, skin etc. Make up lessons. Learning to put on false lashes and pencil in eyebrows.By the way Jayne I asked again about the wig and you do only have to pay the first 67.50. The NHS pays the rest. I think in Wales and Scotland they are free. Im feeling ok my pee is red and im sure my tummy wants to be sick but the tablets they give you tell your brain that you dont. Im sure im going to feel rough in the next few days. And will come on here and share my experience and compare. Don’t be frightened. Looking forward not having to pluck wax and shave. The couple of hairs on my chin had better bugger off too. Chin up. 1down 5 to go xxxxxx
Thanks Nikki!
Good luck for your treatment tomorrow Sarah.
Xx
Good luck Sarah.
Cant sleep is it the steroids. Just yo let you know there is a really good article in October’s Good Housekeeping. ‘Now there is life after breast cancer.’ Xx