hi all, back home after long day. Chemo finished yay…T 3 done. My Onc had filled me on radiotherapy, unfortunatly i have to have 4 weeks (20 lots) due to being high risk due to highly invasive type and being triple negative. She wouldnt give me any actual statistics of re-occurance and i said id rather not know anyway! The 4 th week boost is just to the actual tumour site, the rest is to boob, side of neck and collar bone (unsure why there…something to do with the fact that it had spread to lymphs???)
Anyway, she used her authority to get my radiotherapy tattoo’s done and ct scan this afternoon and have got all my days and times…start 18 nov and finish fri 13 dec haha. But over by crimbo thank goodness.
She even gave me some more sleeping tablets and told me to take them without worrying as its important to get better first and if they help so be it…yay!
Anyway, need to get some food, and relax now so signing off.
Hope we soon have more of our j’j’s in the chemo finished club so we can then all discuss the joys of radio!
Nette, hope the sides effects have not sprung yet!
ps, i still have hair and was told today that it will now start growing so doesnt look like i will ever wear the expensive sodding wig!!
Well done bumblebee, wonderful news. If you Google lymph nodes you will see a string of nodes running under our neck across the collar bone which is why they zap up there.
Lucky you with dates sorted.
SE so far are just tiredness. Feel I got quite a bit done today so feel justified in being in bed at 8.30. OH out at meeting tonight so just listening to the radio.
Hope it is quiet because everyone enjoying the last of the sun SE free. OH peg out the towels today which is a bonus at this time.
Wishing you a good nights sleep tonight bumblebee. Remember that all sleeping tabs are addictive and it will be us that have to live with that not doc. I have kept off them since the GP told me. I am waiting for at least 5 days of no sleep or I can’t function from lack of same. But I WIll take them if needed.
FEC DONE T#3 DAY 5
Kat and Benedictus school hols here again, time passing and we are still at it. You are intitaled to feel down. I looked in the mirror last night as I brushed and gargled and tried to imagine what I looked like with hair. I still have a sprinkling of grade 2 spikes, 3 brow hairs on each side to guide my pencil and a few lashes. I just keep thinking of the baby orangutan.
Extreme fatigue hit yesterday and I am beginning to know I haven’t ‘been’ since Monday. Could barely get up the stairs at 8.30 but it is 4 am now and I am awake again.
Benidictus you know the time will pass and if you are not finished by Christmas choose another date. A birthday, anniversary, spring half term. I was diagnosed in April, which I expect most of us were, so we have already done 7 months and 4 months of chemo. We can do the rest.
And remember this is the site for the moans and groans we can’t express to your loved ones. This is the place to let off steam. It makes us all feel better to know others are having the same problems, fears and miseries. So keep typing.
I hope everyone is quiet cos they are all feeling great. If you are just ending half term or just starting, enjoy the weekend. I think I will spend it it front of the tv.
Kat and Tamsin massive hug winging its way across the Pennines. How is burn Kat??? Tamsin dont beat yourself up about the holiday and half term we can only do what our body allows and you dont want to over exert yourself as you would end up paying for it later.
Congrats to Bumble across the finishing line must be such a good feeling.
Nette you too even though you know you are having SE you at least know it is the last SE so that must be a great feeling like sticking 2 fingers up at it.
Piggsy are you ok???
Mahsa hope you are well too??
Would like to hear from the others i e Lynda, BOF, Senga, Biggley, Julie, Debs. How are you all??? Hope not missed anyone off!
Some good ne3ws went for fiollow up heart scan on the port aand the clot has almost gone. Thank God. The doc said that it was a very impressive clot prob the biggest he has seen. Bloody typical. So glad that the Lord works in mysterious ways and cos of having herceptin I went for ecg or it would nt have been found til I was on a mortuary slab! Still think the fact there is no follow up is p**s poor as I voiced rather more eloquently yesterday! Anyway its done now and I have said I want to be kept an eye on as long asd this port remains in place.
Bloody hell Chezzap, glad to hear you’re ok. Its one thing after another on this journey, and scary. On a good note from me, had my 1st herceptin on thurs and I’m feeling fine!!! Need to have a muga before we continue to check my heart so fingers crossed all will be ok to carry on!!! Also had CT and been tattooed ready for rads on the 13th Nov, so its all go here!!! Love to all, Julie xx xx xx
Lovely word Mahsa, put a smile on my face so thankyou. Needed today as the bone pains are kicking in and due to be made worse as waiting my first injection :(.
BOF, my sideburns where the CC didn’t quite cover started to grow back a couple of weeks after my first T and are now coming up to an inch long :D. I am going to try that FAST shampoo when I’m finished as been told it doubles your hear growth. Has anyone else tried it?
Chezzap, great news the clot is disappearing fast. Can’t believe they picked it up only by chance
Nette, does make me laugh at you saying you resemble an orangutan. Funny how we see ourselves. I’m a cross between the bloke off little Britain who says “I want that one” and the thing on a bike out of the Saw films. I’m sure though in reality we don’t, well I hope not
Kat, hope you are feeling better today and glad my burnt butt managed to make you chuckle if only for a while. You’ll be glad to know I purchased another 4 hot water bottles to insure no more burn incidents lol
T3 day 5
Masha, Lovely words.
I got my sign off letter this morning from the chemo unit. Hooray. Line drawn.
Just been to see friends new motorhome. Operation site burning so dragged myslef upstairs to take off bra and realised I couldn’t face going back down so I am now in bed listening to Dermot and reading everyones lovely posts.
BoF I have lost more Hair with T but past caring.
I have decided to get some nice photos of me without Hair, hat, scarf & wig. It will be a record of my acheivement this year although OH seems to be upset by the idea. He says he just wants to forget it but this could be a defining year and reallybi don’t think I look to bad when I have a bit of slap on.
How does everyone else feel. I know this year will fade but never completely be forgotten.
Nice to see so many posts. Hope you all miss the high winds. Enjoy the rest of the weekend as SE as we can.
Lynda, l felt exactly the same. Everyone kept saying its your last dose and all I could think about was that I had to have one more dose and go through the SE again and would I have the strength for another round. No joy at in the build up to last dose.
However, once the last dose was in my attitude did seem more up beat. At least until last night when bone ache was horrid, bit of nausea set in, legs felt like they would collapse under me and OH saying “last time don’t cry I can’t take it!!!”
Well I took a sleeping tablet and had reasonable night and now I am one day closer to recovery. I do know that energy level should start to improve by Tuesday. So Lynda don’t feel you have to be upbeat, to me anyway, chemo is not over until I get my taste back.
Good luck with you dose the light in the tunnel is heading your way.
Nette x
hi all, sorry no post yesterday, felt absoluely s***!!! Day 4 after final T and i can say this is one of weekend so far so thank god no more sessions to go! Coulc barely move yest, couldnt be bothered to eat as wooly, slimy, cardboard tongue syndrome again… I even felt sick which is the first time plus gallstones played up! Nette snap-i took sleeping pill last night so that i could just go to bed and wake up the next day hopefully feeling better without laying awake all night. Everything is aching and like you, dont feel like my legs will hold up my body! Managed to cook sunday dinner but feel like ive run a marathon!
Pollyanne, i have the peripheral neuropathy in fingers and toes, was trying to do a jigsaw earlier but due to the tingly electric funny feeling couldnt pick the blooming pieces up. Ive had it every T session.
Cant remember who mentioned hair growth whilst on ‘T’ but my onc told me last week that it usually starts to regrow on ‘t’. I appear to have been lucky to have kept a short covering plus my lashes and brows, tho they are so fair you wouldnt notice it i had them or not!
Does anyone have any idea if periods come back as mine abruptly stopped when chemo began. Forsgot to ask at hosp. I am 50 and was pre menopausal so am hoping and praying they stay away!!!
Anyway, getting dark now, see if the storm reaches us here in east yorkshire! Guess we will all be snuggled up inside tomorrow!!t
Love to all, hope we all have a decent week ahead…4 weeks to go till i start the wonderful 4 weeks of sorting out a lift for radiotherapy…!!!
Well done Bumblebee. I have just got up at 4.30. Lucky me as empty nester. I have felt nauseous for the first time on T this time but luckerly still have stock of tablets. Also have had flashing headache all day. Still weak. Mouth indescribable. Steak for dinner to build blood cells.
I am hoping to hear from Castle Hill on radiotherapy now I have been signed off from chemo unit. It seems I will see my onc on the set up date as he will be in attendance? You did ask who who onc was from CH but Dr names don’t get through BCC scrutiny. He wears a turban!!! Young and very nice. Only thinks in one step at a time.
I have got three appointments booked in next two week. Two I can’t get out of what are the chances I get my set up appointment on one of these days!!!
It has started to rain in sunny Scarborough now. The storm is a coming. Wishing all JJs a quiet night.
Thank you for your lovely comments. As Kat said we do rally when needed and I feel a special bond with you all. If it wasn’t for you and this thread, I would have gone out of my mind by now. I do hope we’ll meet once we are all at the end of this long tunnel! Today was a positive day for me, I managed to do some tidying up and cleaning. Nothing special, but felt good to do something normal. Poor mum been doing everything, so grateful to have her around. On the negative note, I think T has reached my nails. I haven’t lost any yet, but two of my finger nails and 4 toenails are getting ready to drop off. Anyway, I am sure they will come back together with my hair, eyebrows and eyelashes!
Glad to see everyone trying to bring some normality to their lives and embrace unwanted SEs.
Few of us up this week, tomorrow Tamsin and Chezz, BOF on Tuesday and my last dunk on Thursday. Anyone else I missed? Good luck to everyone with chemo, Rads and any other appointments this week. will be thinking of you.
Hope storm will not cause much of damage or interruption to your lives.
Waiting for my appt for muga, have to ring them if nothing by thurs. Have appt to see my onc 12th Nov so will be before then. Arnt looking forward to it as they can’t use my picc and it takes them about 4 tries to get cannula in my hand xx xx
T#3 Day 6
Stayed in bed till 5 as I couldn’t face stairs, and had no energy so would only have sat on the sofa.
Good luck Benedictus tomorrow. Better bored and one canular. Good book time or a snooze.
For every going down this week have a great few days pre dunk.
I have got oral thrush back and metal mouth. Just can’t understand why I am not shedding weight by the Ton. I haven’t nibbled for months and only eat enough to kill hunger at meal time. I think it just shows how little food we actually need.
Locked all the Windows as wind was whistling round the house. Sleep tight everyone. One more day of SE got through.
Well done those of you that have completed last dunking. Glad the clot is sorted Chezza So sorry to hear about all of you suffering from one pain and fatigue. It’s so strange how it affects us so differently. I have had no pain at all from bones but have all my toileting issues instead.
Nette - I get oral thrush each cycle and the doc gives me Nystan which works on the thrush and also helps with mouth ulcers. Doesn’t do anything to help with loss of tastebuds but we can’t have it all can we I have lost another 5lbs this cycle so far due to not being able to eat properly. But that is also due to an extremely carefully managed food intake due to my constipation/piles.
Haven’t been on here for a bit as I’ve been fighting the dreaded palmar plantar syndrome again despite having the reduced dose of Tax. Having gone through it before though I had some tricks up my sleeve and it didn’t get anywhere near as bad as last time. No shower or bath for 8 days makes for an interesting few smells though! I could kiss whoever invented wet wipes
Best wishes to all of you in for a dunking this week. May you have minimal se’s
Hi Debs
I have got it all and still got oral thrush. But hay ho last time.
Managed to get downstairs for lunch and a short walk round the close in the sun. Just finished slicing and freezing smoked salmon from the Whitby smoke house. A friend brought it back for me yesterday. The last lot got caught up in last weeks dose and we only had one meal then it got forgotten in the fridge.
Is anyone else obsessing about food. It maybe just the food programes, I really like Gino, or just that nothing tastes but all I can think about for Christmas is cooking books and experimenting. I will need to loose 3 st when this is all over as weight seems to be a contibuting factor to all cancers wnd having already had two primary BC a sister with BC and sister with gall C I have to take my cancer risk very seriously.
I see the gentics on Friday for the 3rd time. They have always said as a famliy we are a cluster but at no more risk than the national average. Well I think they are going to have to do better this time. I don’t have the BRACA gene.
Benidictus hope all went well today.
Bumblebee hope you are ok .
Bof for Tuesday go girl and Masha we will be with you Thursday.
For those still a bit from the end, I must be horrid to hear about thoses finishing but it will end and we.will all be routing for you as we get over th SE and come out of our bubbles.
Nette x
Oh BoF, your dentist made me smile, upset tummy and taste effected, greeted with a rye smile. This is really horrid having a problem that they don’t want to sort. Toothache is the worst so all credit for bring a smile to me. T2 this week. One step closer. Fingers cross meds sort the tooth and dose goes to time.
T#3 Day 7
feeling a bit better but still got no strengh to legs but taking an interest in what is going on around.
Hi Nette, yes i appear to spend half my time watching cooking programmes, fantasing about how nice it must taste if only i could taste something!!! I just eat basically because i should, tho it is soooo depressing as i really used to enjoy my food!!! I am still not able to swallow all food due to my dermatomyositis so my fave sarnies and chips are still off the menu lol but i really miss toast! I am having to eat high calorie foods tho to try and put some fat back on as i lost quite ad bit of weight over the period i couldnt eat any solids…tho i do have a big bloated belly due to the steroids i am on…and a hamster face!!
Currently on day 5 of the final T and still feel weak and wobbly…i dont go back upstairs from getting up in a morning to going to bed-thank god our bathroom and toilet is downstairs…however not so good in the middle of the night as its our only one! Like you, empty nester here too, just me and hubby for last 10 years since son left home-he is now in manchester, rarely see him unfortunately but at least his bed is getting some use as i go in there most nights when laid awake!
Anyway, my mum has given me her slow cooker so now going to browse recipes!
night all jj’s and good luck to anyone being dosed this week. x
