Jo, hope the energy dip is only temporary xx
PTB, long may it last! xx
Jenny – I know Mansfield, have family in Nottingham so not far from you. Are you having your treatment at QMC?
Barbs, I’m totally with you on the bad arm risk - I always offer my good arm and so far its been ok. Think from what you’ve said best thing to do is tell them you have lymphodema regardless, that’s what I’m gonna do – even my onc said that in a life-threatening situation they’d use the at risk arm if they had to. I’ve been told that for bloods they can use lower legs or feet as a last resort – come to think of it, Jenny had this done. You can get a special LD wristband for the at risk arm – think it’s yellow which is probably code for LD-type issues, just hope it’s not too tight, ha!
Ally, good to hear that you’re still doing well. Have you looked at Trendco Hair Supplies, think they have a shop in Birmingham. There’s also Browns of Tavistock which I’m using because they have an arrangement with my hospital. Don’t live near Solihull but know Brum really well. xx
Hi Blue Topaz (am liking the name change!) It’s important that we check our temperature regularly during each chemo cycle and not all hospitals provide a thermometer with the medications package which we're given on the day of chemo. Most hospitals have a wig clinic and/or an arrangement with a regional wig specialist. Some if not all, also provide patients in England with an allowance to cover the cost of, or put towards a wig of their choice. Think this service is free in Wales, Scotland and Northern Ireland. xx
Beam and The Batman – will be thinking of you both tomorrow. Let us know how you get on, if you can. xx
Hope you are all well. Just to let you know that I have changed my user name from Dtebbs to Blue_topaz. Sounds nicer.
I noticed that some of you are getting wigs and thermometers. I start my chemo on 10th, but nothing brought up about these to me. Are they discussed at the chemo session?
Dont want to talk too soon but i am feeling really good today.....maybe i have worse to come 😞 Good to hear that everyone is surviving so far and good luck to those who are yet to have their 1st chemo. Barbs i having difficulty finding the FB page....maybe the old brain is affected afterall ? 🙂 Going to take a look at my wigs tomorrow as i had to order 2 blonde ones in as they only had brown ones to try on in the shop...i do hope they look ok as it will certainly cut down on the usual 1 hour blowdrying & staightening session LOL. I suppose if they dont look right i still have time to shop around ? Has anyone found any good websites for wigs ? Keep safe & brave ladies. Oh by the way does anyone live near Solihull ? xxxxxxxxx
Not sure if i am doing the right thing but i am carrying on working as normal as possible ? I will go in when i feel ok and stay at home when i feel crap. Of course will stay at home if anyone has a cold etc in the office. I suppose i am lucky that i can work from home if necessary but feel as if i want to keep things as normal as possible...but if not possible will definately take up knitting again LOL xxxx
Nikki I can't believe how much you have had drained again. Bless you, hope you are feeling a bit better after all that. xxx
I have spent £50 on art materials today so that I can have a go at journalling and do some more card making. Chemo is an expensive time. x
PTB, my hospital has told me not to work as I am a tecaher and teach KS1. I ahve asked for emails on main points from meetings though! Feel the need to be kept in the loop.
Ordered a Braun thermometer online £24..... might send it back and nip down tescos x
Well energy levels have taken a nose drive completely today and Everything is such a chore .......and spots!!!! havent had them since I was a teenager Grrrr!!
Samj's - i bought a digital thermomemter from Tescos for £2..15 which is great - i then got given 1 at the hospital yesterday !!! oh well 1 for home & 1 to take out.
PTB - thanks for the tip on porridge i will remember that as i love it anyway.
Just reading everyone's comments its good to know that i am not the only one who does not want to be in this club and will have a rant & rave every now & then. Just good to know that the support is there from some lovely ladies who i will probably not meet but will share a very difficult time with....but hey we will all come out the other side and this time next year it will just be a bad memory...onwards & upwards girls xxxxx
We are getting married next May PTB so we are having a mini moon in May half term (I am a teacher). Then a long haul holiday in the summer. I intend to really make up for it. Just sick and tired of being in this flaming house at the moment plus most of the house is here too- will be glad when they are at work and school so that when I do the cleaning it stays clean for longer than 5 minutes!! Sorry moaning again!!! xxx
PTB glad you had a good time even if you didn’t get a foot massage! Thanks for the lowdown on what to expect. My OH will be impressed that you’re eating porridge, it’s good for constipation too! Hope the metallic taste disappears soon xx
Jenny – can’t imagine a time when I’d go off chocolate but a waistline might be worth it. Are you anywhere near Nottingham itself?
handc, thanks for looking in, it’s good to know that se’s don’t affect everyone.
Jo – great that you’re still going strong – hope they’ve given you something for furry mouth.
Frenchfancy, as others have said, don’t feel you have to bottle things up – cyber rants can work wonders, hope you’re ok now xx
Lulu, you’re a godsend - thanks for your weighty 3 am posting, guessing from this you’re another night owl. Flu jabs aren’t available at my surgery until 21st September (I’m away then) and hoping to start chemo on 24th so going to ask if I can have it a few days earlier as they should have it in stock, also pneumonia jab. Given the choice, think I’d prefer the underarm portacath but it’s still looking like a cannula for me – others seem happy enough with it so might just give it a go. Edinburgh rocks (but you know that already) – got married there and get back as often as we can, might bump into you sometime xx
Barbs - I wont be having a meeting with the chemo nurse or a visit to the ward beforehand, and I haven’t signed a consent form yet – like you, have been told it will all happen on the day. Thanks for keeping the list updated, I’d be in a real jumble without it.
Ally – great to hear that you’re ok and nothing more than metallic mouth (like PTB) hope it stays that way! Thanks for the mouth tips xx
Samjs – I’m thinking cheapest ear thermometer because they work fast and if mouth is sore might not be able to cope with the oral one. BCN told me that armpit isn’t as effective for checking temperature, and I’m certainly not going to stick it where the sun don’t shine xx
PTB- I find the laimon nice but rather strong so I am using it almost as a juice and diluting it with sparkling water. Also it is really high in calories!!
I bought a digital therm. from the Pound Shop - am taking it in with me today to give its first outing. Will let you know how I get on with it later as I am being dunked at 1:30pm today.
Hi everyone i have been absent for a while just getting my head around starting on the band wagon. Anyway 1st one done & dusted and feeling pretty good today. Like you Barbs i was a little in the dark as to the procedure as i had my assessment & chemo on same day (yesterday). It was a little overwhelming going into the unknown but everyone was great. I opted for the cool cap which is uncomfortable but not unbearable. Had to wear it for 1/2 hour before treatment and 2 hours following so 4 hours in all. I took mags with me and a snack but was supplied with tea all day long. The one thing that was stressed to me was to look after my mouth, regular teeth cleaning and to gargle with salt water after taking in food. I have a nasty metallic taste in my mouth but no other effects...hope this carries on ? Not sure if i will continue wth the cold cap as you cant use heat on your hair or have colourants and with my hair being a little unruly i dont feel as though i can give in to looking a mess...Ha Ha ! i have to pick up wig on Friday following a delay with the suppliers so i guess i will make the decision following that. Barring any infection my next session is on 23rd September but good luck to those just about to start...If we keep on sharing experiences & tips we shall pull each other through xxxxxx
Just read Barbs list - sending wishes to Katepb and hg12 who I understand are being dunked today.
Will have to compare experiences later? Big hugs to you both. Stay positive.
Hi all hope those of you who have had your treatments are doing okay and those of you about to have them have minimal se' s.
Unfortunately I won't be joining the September Stars, my appointment has come through with the oncologist and it isn't until the 25th . Hope you don't mind if I lurk around with the Stars although I will join the October group.
Should have the results from the node clearance next Tuesday and also my referral has come through for the complimentary therapy and appointment for that is on the 26th so will hopefully get some Reflexology. Also got to have the interview with HR for the first stage of MOA (Management of Attendance).
Anyway think it's time to get back to some sleep. Goodnight everyone, take care and stay strong xxx
I haven't posted much on here but I try to read every day and it really is so informative - I have a notebook full of tips and questions. Shame I didn't know about the flu jab thing, as I had my pre-chemo talk thing today at Cheltenham Oncology Centre. It makes it all so real and scarey now, D-Day is Friday for me. There seems to be so much to take in! Does anyone know where I can get large containers of hand sanitizer? With two strapping lads at home, who are always out and about, I have decided that is one way to keep germs at bay. I looked in Asda today and they only had travel sizes.
The boys have been much better this week, I think a talk from their dad has helped. Mind you, I have my own demons there as he is getting remarried the week following my first chemo, so I don't even know if I will be able to go and see my boys all suited and booted, I just hope the SEs will be minimal. The lack of planning is doing my head in! Everyone at Oncology was so kind, I have visited the ward, and reckon I will bring one of those eye masks you get on an airplane and just "zone out" for the duration.
Managing to keep the stress, fear and utter panic at bay with Diazapam - well, with all they are going to give me, I figure one more drug can't hurt too much.
Still scared beyond all rational thought. Am going into work/school tomorrow to see the new Y7s and Sixth Form, I will have 2 days before Friday and FEC.
Best of luck to anyone who is having it tomorrow. And if anyone is attending Cheltenham, do let me know. x
Avonlady its nice to hear from you, glad you are feeling better now and hopefully you won't be feeling that crappy next time.
PTB glad to hear youre back safe hope you manage to get some rest tonight and the bag of goodies they gave you help keep any se's at bay so that sick bucket isn't used.
Nikki Have you started them antibiotics?? hope they do the trick it's just crappy!! will they drain it again?? I'm in a place called Balsall Common not too far from Solihull.
Bonnie Thanks for the tip on the nail varnish that'll be one i add to my list
Jo Once Barbarella added me as a friend I was sent a private invitation to the fb group, have you had a friend request yet??
Thanks for the update in list Barbs 🙂
Also wishing katepb and hg12 best of luck with their dunking tomorrow, hope all is well when you manage to report back.
Love and hugs
Nighty night xxx
Just wanted to welcome Avonlady back ...... good to hear from you . We were all so worried about you. Sounds like you have had a rough time of it but so glad your back and feeling well enough to post.
Welcome back PTB so glad your dunking went well today dispite a few wobbles along the way hun.
Hope Ally and Tracey are doing ok too??
Sam , keep your chin up hun, start planning next years BIG!! holiday instead , something to aim for. xxx
Good luck !!!! to you ladies taking your dunking tomorrow. xxxxx
How do I join the Stars FB Group??
All still ok with SE"s nothing major to report except the horrible furry mouth the last 2 mornings Yuke!!
Love to you all. xxx