Hi all! I’m well jealous you are all on your last one! I have 4 more left, as long as my infections have cleared up!
I got my rads ct apt through today, but had to ask them to move it due to my chemo being put on hold. Seems I’m getting 20 days worth of rads instead of the normal 15.
Vicky I completely understand where you are coming from. This treatment has completely knocked me for 6 and all the house decorations and my garden are all failing due to it. Makes me frustrated seeing all these things waiting to be done but I’m too weak to do them.
My partner is hardly here too, so that makes it even harder. He’s here for the first 3 days of chemo but then away for the rest. Even if he’s here and just working a normal day he misses the main events so to speak as they occur during the day, and then he is too tired to do the work I’m dying to have done. Even when my mum is here, nothing I wish to be done gets done. Argh, frustrating!
To help get over that, I do try and take heart in the little things I achieve, even if it’s just getting dressed.
Tina, I’ve put on a stone since chemo. Feel like a whale! None of my clothes fit me now and since getting my hair cut super close (which is great and freeing) I kinda feel less like a woman, especially one who is in her early 30s.
Ah well it’s a sunny day, so I’m going to sit in the garden and hope this nausea passes(might be off chemo for a week but man these antibiotics are harsh)
We had a lovely couple of hours at the beach with the kids yesterday afternoon. I was flipping tired but it’s easter holidays so felt I needed to make an effort even if it was just to walk over and sit on a mat on the beach.
Just been and had my picc line out this afternoon. Feels good that it is out.
We are getting there ladies! Nadz there might be 4 left but because they are weekly I am sure it will go fast. Second opinion on Monday for me and hopefully some answers.
Gillian how are the rads going?
How is everyone else doing?
Xxx
Oh boy I could taste McCoys flame grilled steak crisps at lunch! Only thing I have tasted in ages! I think I love them! No, I know I love them. New favourite! ?
Tina I feel much the same. Just about got out for a small walk today (due to heavy rain) and yesterday (due to legs hurting). Slept for 7 hours straight last night I was so tired. Woke up with the headache from hell as I hadn’t drunk for 7 hours. Usually waking 3-4 for a drink and loo! Luckily headache didn’t last too long and felt like more energy after sleeping for so long.
Did some craft today. Painting glass trinket boxes. Thought I could use them as wedding favours maybe.
Has anyone heard anything from Gillian? Wondering how she is doing with rads.
How is everyone else doing?
Xx
Chemo has been delayed again due to infections not clearing up. Gutted. Need this treatment over. This week has given me a taste of what’s to come when chemo free and I’m not sure I like it. Been super depressed, keep telling everyone I’m ok but I’m faking every happy moment.
Glas tonearm you finally got some decent sleep Vicky and to finally taste something!
Good to hear from you Gillian, I’ve been informed that the se of radiotherapy don’t start appearing until week 2, so will have fingers crossed for you xx
Hey Gillian I was wondering how you were doing.
Glad it’s not so bad so far. I have also heard that the se’s kick in around week 2 Nadz. If I go ahead (depending on second opinion) I will have a 23 mile, 50 minute trip each way.
Nadz so sorry to hear your infection still not clearing. Take it incredibly easy and make sure you eat/drink/sleep right. Hopefully it will help.
Fred on the other hand pleased to hear your news.
I have been looking for info about when to start caring for your hair more normally and how after treatment finished. I came across this pdf
It is incredibly helpful in more ways than one. Hope it helps you all too xxx
Hi everyone, been out of the loop for a week, T2 hit me like a ton of bricks on day 4… basically all the SE’s you get listed came along and camped out for nearly a week! Day 11 now on feeling more normal at last!
How are you after your first week of rads, Gillian, are you doing 3 weeks? Keep your skin moisturised and drink plenty of water…same as chemo really! It’s a bit of a minefield what to use on the area though!
Thanks for that hair care link Vicky, very informative! I have a short, white fuzz all over but more at the sides than on top. I usually wash my scalp (and now new hair) with some baby shampoo. I think I might get some McCoys…finding the lack of taste very annoying!
Oh Nadz, poor you! What a pain in the a**e!! I do hope that you will see a big improvement soon and be able to go ahead next week. It just goes on and on doesn’t it, seems never ending, and it’s really hard to stay cheerful let alone positive, I was really down and crying all over the place on Friday, everything just got to me, but I’ve improved over the weekend with the SE’s settling down at last.
How are things with your nose now Tina, I saw in the Recently Diagnosed thread you were having a bit of a nightmare with it! I hope you had a reasonable night and are feeling better today. I have the blooming munchies all the time, too! I managed to maintain the same weight on FEC but since having T, I have put on 8lbs!! I have a theory that because we can’t taste anything properly, we want to keep eating in a vain attempt to find some flavour somewhere! To make matters worse, I have a sweet tooth and I can taste sweet things quite well, so eating to much cake and chocolate!
Hope you’re doing ok Fredflowerpot, did they reduce your dose for your last FEC? I hope they did so you won’t be so knocked out by it!
Next bloods 19th and then… fingers crossed, last T on the 21st!
Love and hugs to everyone,
Amanda x
Your welcome Nadz.
Well I understand things a lot better now. Same outcome. Royal Marsden say rads too. 15 sessions over 3 weeks. They explained a lot better how they came to the decision. Basically Worthing should have been able to tell me back in December! I am so cross that the didn’t. It would have given me time to get my head around it instead of having it sprung on me at little notice.
I am really pleased I had the second opinion though. I came away with 4 leaflets vs none at worthing. The staff explained things easier too so I completely understand why now. It is to do with the size of it, my age, and the fact that lymphovascular invasion was present. All my nodes were clear so not a factor. They hadn’t even communicated that lymphovascular invasion was present before. I had to look up what it ment after seeing it on a letter that came through after my rads consultation. I can’t believe the hospitals communication has been so poor since going to oncology side of things. Will definitely be putting in a complaint so noone else has to go through their journey the same way as me. Being told squat!
Good to hear that the rads are going well Gillian. Must admit I am scared that I will have a bad skin reaction. Will have to keep my fingers crossed.
Xx
Oh and signed off another week too thanks to 14 cases mid way through at the school. The kids came down with it in the easter holidays so hopefully it’ll be the last of it. Hate being forced to be off. Feel up to going back in today even for just a morning but can’t.
Frustrating I think is the word. Oh well blood count should be on its way back up this week at least for the last time.
Xx
Wondering what I have let myself in for! I am going to a new gym down here that is specifically for Cancer patients today for a gym assessment. Never been to any kind of gym before. I usually swim. The idea is over 12 weeks I sign up for classes and get fitter.
? this will be later on this afternoon. Panting and sweaty lol
Xx
Well that wasn’t quite what I expected. Went along ready to be put through my paces and all that happened was talking about how my cancer has affected me and what I want to get out of it. Medicines I am on, where scars are, height weight and blood pressure. Signed up for 2 classes a week. Boxing style resistance exercise class on Tuesday nights and ‘get up and booby’ dance class on Saturdays. I’m not kidding that’s what they call it!
Start next Tuesday.
Does anyone know how swimming might affect our hair after chemo or if it is ok to go swimming at all? Now my picc is out and healed I am desperate to fit in a swim before radio in case I get skin reactions and can’t go.
Xx
Hi Fred… I’m expecting to start rads around the 9th?.. ?
Vicky! ? Well done! Let us know how your classes go!?
I’m desperate to get a tidy up from hairdresser… Has anyone been told when a hairdresser visit and colour is safe!?! Xx
I will ask tomorrow at my appointment Tina xx
?? Thanks Hun … ?
Hi Tina. My Onc said he would recommend waiting for 6 months for it to grow out a bit. He said you don’t want to do too much to new hair growth as it is fragile. He said its same for cutting, colouring etc. You can always visit the hairdresser to discuss a plan moving forward I guess. That is what I propose to do as I really don’t know what to do regarding shorter bits and nearly waist length bits! Could end up with some interesting hair lol.
Hope that helps
Vicky xxx
Tina that pic has made me laugh - that looks how my hair did before I lost it all and the reason I didn’t cold cap ? OK, not quite so bad!
How are you feeling now? Have you side effects gone - never to return?!
Think there’s still a couple of Dec starters still having chemo, so wanted to send some January starter support to you both, must be frustrating, but hopefully not long for you now too either 
Lots of love xxx
Hello ladies
Just a pop in from a Feb starter. Over half way through now and just thinking ahead to radiotherapy. I have to have 20 sessions and drive about 40 mins away. Can you drive after it or are you too tired? How does it compare to chemo? Xxxx Thankyou sal x
Tina you do make me laugh! That’s the look I am rocking with my think hair but down the back as it’s longer.
I have no idea yet Sal. Tina, Fred and myself are awaiting our planning scans and to start. Think only Gillian has actually started on this thread.
I am interested in knowing too as had someone who’s mother in law has gone through Radio was told she couldn’t drive but I was under the impression I could. I am actually ringing them tomorrow to ask the question as the rads hospital in an hours drive from me so if I can’t drive I can’t get there unless they lay in transport.
Tina still laughing! ???
xx
Thankyou! Star lady I’ll wait to see! Maybe they’ll put us on a limo… Be good!!! Xxxxx
You’re welcome Sal.
Mmm stuff what the doctors say about working and rads. If I am able I am there. I will be ok if I push myself to work through the fatigue like I have on chemo. I find it brings my energy levels back up faster to near normal. Also will have 2 classes a week at the gym from next Tuesday too so that should help as well. Anyway I have used up all my council sick allowance so would be on sat sick pay and can’t survive on that so in I will have to go. Luckily my doctors haven’t said anything like that to me so far anyway. Thanks for the info on driving Gillian. I was just about to ring them after checking on here. You have saved me a job!
Hoping all this will be over with by the last week of this half of the term then I can have a week off with the boys anyway. Got told yesterday for anyone with a port be it from reconstruction or iv thingy with port up by the neck that they don’t normally take them out for 6 months after as if they make an incision in the skin it will take months instead of weeks to heal as the rads make it heal slower.
Vicky xx
Hey Tina, I had the exact se as you in the first cycle of T, I was suffering from nose bleeds, that after blowing a stuffed nostril it would be bloody gunk then would free bleed for minute.
I’m back on weekly T now, very tired already.
I’m only received SSP, was told no to any of the benefits us with cancer are meant to have help with. It has been a struggle.
I’m not to go back to work until a month after treatment and then it’s to be phased, due to the nature of my job, because of immune system will still be low and se’s still happening. Problem is think my ssp will be finishing by then. My employer has been wonderful but I am leaving them short staffed. Quandary.