I have another radiotherapy planning meeting booked for the same day as my next consultant & bloods appointment 28th July, lets hope it all goes smoothly, better than yesterdays performance as I will have to travel from north to central London to UCLH, they only wanted to book it for 6 days after the last chemo again the appointment was offered by telephone this time and I explained that I would likely feel to wobbly to be traveling around too much at that stage, so they agreed to change the appointment to the day before the last session, its still not ideal but I have got to the stage where I really do not want to delay anything the sooner the treatment if finished and PICC line is out the better. I am sure we all feel the same, I have my eldest daughter down in London this weekend, both daughters will be off looking for bridesmaid dresses, I won't be joining them this time, it will be too soon after my treatment . Lovely to have nice things to look forward to though.
Keep well ladies
Hi Joan47, EAM28, Wildpurl, Nelli and Rosie and lovewine,
I had an eventful day yesterday to say the least after being as sick as a dog (not sure why that expression is used) after the dredded 4 steroids at 8am (I had eaten breakfast first) I phoned the chemo dept to see if they had any advice they just said go ahead with the 12noon tablets as usual and hope for the best (they sayed down thankfully.) 1.40 appt with the consultant slid to 3.00ish I was then seen by an unknown doctor and a pharmacist who seemed far more knowledgable even to the extent of helping the doctor to fill in the follow up appt form lol, bless. I then had to wait until the whole story of my admission (I had by luck brought the discharge letter it had not found its way to my notes yet) the recent sided effects were then relayed to my original consultant! I just about made it at 3.45 to the bloods dept and was releaved to see it was empty, was invited into the room, you should have seen the poor guys face, I could have been speaking in another language, he started looking at the arm without the PICC line in and asking about my veins, I explained that that is the whole point of having a PICC line you put treatment in and take blood out, he eventually said come with me please I will speak to a collegue, his collegue informed me that they could not take bloods from a PICC line because of hygine issues and that I needed to speak to the chemo dept about it. (They were not happy about seeing me it was obvious so late in the day) We waited for about an hour but it was straight forward in the end both the lines are working OK.)
We then went off for lunch at 5.20, its a wonder I had not fainted since the bit of toast I managed to force in for the 12 noon steroids.
Rosie sorry about DH's melanoma diagnosis, I hope his sore arm recovers soon, I am sure they can find a nice waterproof cover for it, I don't mean to sound mean. I have had a wide excision on my upper arm about three years ago lucky for me it was clear nothing malignant but I still had a nice crater in my arm for several months which has filled in nicely now with new fat I guess. You will both have to look after each other or as you say the dog will have a new job! Glad you both had a nice break and good luck with your forthcoming surgery. X Cassie
I found most things out about triple negative just by trawling the internet but being careful of the credentials of the sources of the articles. Most of my family are doctors and I even muddled through half of med school myself so I guess I like to know the nitty gritty!
In particular I was interested in the risk factors for triple neg - none of which needless to say applied to me, and the prognosis. I am very conscious that statistics although useful in some situations are not an indicator of one’s own outcome and should be treated as such. It seems that although triple neg has a higher early recurrence rate, once you get past five years your pretty well in the clear. So swings and roundabouts really!
You may find the following interesting:
I found this little slide show put things quite succinctly:
This is an overview from good source.
Last one: this huge document deals with all cancers but I found it was helpful page 19 on, where it discusses breast cancer risk factors and how they don’t apply to triple neg. Ignore if you like!!
I hope the links work - if not I can try something else but not sure what? Will be interesting what your doctor has to say.
How lovely to hear so many reports of ‘back to normal’. EAM, Lovewine, Wildpurl well done for battling through it again. I am doing much better this cycle - I don’t know if it’s the extra tablets or just knowing what to expect. I certainly won’t need to call 999 this morning unlike 3 weeks ago! Everyone’s comments have also helped to buck my mood and I feel positive enough to tackle little things between rests - so thanks all.
Jos well done on your penultimate TAX I am glad it went without a hitch. (Just think it will be us finishing next time!!!) Did your mood manage to lift a little before as I know you said you were feeling a bit mouldy despite it being the third week? I am really noticing the zero taste buds this time - bit of a bore but not too bad in the grand scheme of things. I plastered last night’s dinner with Worcestershire sauce so could at least taste something!
Joan I am pleased your MRI scan went well and the machine was not too claustrophobic. Sounds like a very flash hospital - I am afraid I would have probably missed my appointment due to being in the Costa coffee queue! I bet it was lovely to have some time with your grandchildren who hopefully will have restored some of your vigour - or completely worn you out!?
Cassie sorry to hear you struggled with sickness; thank goodness you already had an appointment yesterday so fingers crossed they were able to get you sorted quickly.
Hope everyone has a good day!
Lovely to hear you are still battling on bravely. I am so glad your little holiday was restful even though your mind must be spinning with all you have to contend with. Your ability to be positive is even more impressive as we all know what effects the drugs have on our poor brains! I think your double mastectomy decision sounds very sensible and definitely the best way to go forward. How reassuring to actually have the doctors confer directly about your case - hopefully the extra few days’ recovery after chemo will make things a little easier.
I hope DH is not too sore after his ‘wider excision’ you could always opt for paper plates for a week until washing up arm back in commission! My poor dogs not getting much attention other than cuddles on the sofa and pottering in the garden. Still they should be grateful I did not have the heart to diminish contact due to infection fears - I still get my face licked! Yuck!
I've now joined the "one more to go club" and feel very happy about that. Tax went fine this morning and so far just very tired and mouth starting to dry up. Bye bye tastebuds, hello cardboard tasting meals!
Rosie - so pleased to hear you had a good time away, that you've had your last chemo and your surgery is now properly sorted. Sorry to hear of your husband's melanoma but as you say it could have been worse.
Cassie - hope hospital visit went ok and picc line is feeling better. Cant's wait for mine to come out in three weeks time. it's been in since the beginning and I want shot of it now.
Joan - glad you had a lovely time with the grandchildren and hope you have a good afternoon at the support centre.
EAM and Lovewine - glad you are feeling better.
Very tired here so signing off. Sleep well all.
Evening ladies,well i feel completely back to normal now (day 11) apart from a sore nose (it was really dry & sore this round & had a few nose bleeds). So actually enjoyed the little things in life - nice cuppa & a cake!:)
Wildpurl your village rock festival sounds like fun for next wkend - great thing to look forward to! Hope work is going well. I to will be making the most of this 'up' week - have something planned for every day & may even have a take away one night just because i will enjoy it compared to last week!
Sounds like youre race for life was lovely too lovewine - of course you will do it next year - no doubt about it! Yeah the fatigue is unbelievable the first few days - could quite easily hibernate!
So glad you are feeling good after youre 'down' weekend jos. We all get these moments - not nice at all. Hope tax going well so far. Also interesting to hear what you have read with not much difference between lumpectomy & rads v's masectomy also. Both you & lovewine have put my mind at rest more.
I was a bit grumpy this time too tlj63! I kept thinking the s\e's where lasting forever but when i looked back in my notes from last tax it was the same timescale & the pains where only niggly not full on like last time! My husband said im just getting impatient with myself coz so close now!
Totally relate & agree with your post louise 3721!!
Im not sure if the sweats are steroids,chemo,zoladex or a mixture of all nellie 2099! But do wake up absolutely drenched at times - lovely! I had emotional mood issues on fec more than tax. Jekkle & hyde!!
Hope youre feeling ok now cassie86? Hope youre appointment & bloods all good to go! Mine where down to 96 last time & aneamic so praying they pick up for last round!
Hope you enjoy youre support centre tomorrow joan47. There doesnt seem anything like that around here. Just a little group a couple of girls have set up once a month which is nice.
Haha youre can roulette sounds a laugh louise!! We kind of had that tonight but with frozen meals - when i make a big bolognese etc i put the rest in individual tubs with labels on but with hubby helping out & me not on the ball....there are lots of tubs with no labels on! But we didnt do to bad - ended up with a couple tubs of chilli & a bolognese de frosted!
Youre last one today rosie??!!:)
Oh and one more thing, I'm not sure if I'm getting hot flushes or not!
Every now and then I seem to feel a bit warm for about a minute and then back to normal. There's no sweating and I just carry on doing what I'm doing at the time. Because this has coincided with warmer weather and because the temperature in my house is quite variable, i haven't thought too much of it. At night, I often get too hot in the summer and kick the duvet off anyway only to grab it back later on.
Do these sound like everyone elses's hot flushes?!
I'm up and ready to roll. Even managed a cooked breakfast. Round 5, here i come. Feeling much more positive after a rather difficult weekend.
Louise - food roulette making me laugh. My daughter would love the idea of that.
On a couple of topics raised:
I haven't heard of anyone saying radio is worse than chemo and I'm holding on to that thought. Tiredness and sore, red skin is all I've heard and after the numerous ups and downs of chemo, I'll take that.
As for lumpectomy vs mastectomy, i have read some interesting (and reputable) research to say that rates of recurrence are very similar for lumpectomy with radiotherapy and mastectomy which I found encouraging so I am very happy to go for the lump/rads route with the feeling that I am doing the right thing at this stage in my life. Of course, everyone needs to feel happy with their own decision and everyone has different factors to consider.
Good luck with your days everyone, whatever you're doing and wherever you are.
Managed a reasonable 6 hours last night having finally remembered I had been prescribed sleeping pills so took one at midnight. EAM funny you should mention the steroid sweats I have found last few nights very damp indeed! I’m still on edge looking out for the bone pains but only having a slight niggle now and then so far, I hope the gradual reduction in the steroids like Joan and Tlj have will help.
Seems a lot of us are having some emotional mood issues, it is good to know that a lot of them can be put down to the drugs and are not necessarily real. (Yesterday’s most ridiculous ruminating was I have to give the dogs away as I could not cope with their training and exercise - same thoughts day 3 last time too!!) Tlj I hope your mood lifts as you get nearer the end I agree it is hard to be massively positive yet when after all there is still one to go.
I also find I am nagging my girls (14, and 16) in the hope of more help around the house after all I have cancer. Then I have a massive downer and think they should be allowed to still be children getting on with their own lives and letting their hair down occasionally, because I’m not really ill just being selfish. I wrote a list of helpful 5 minute jobs and stuck it on the fridge a week ago ……zero items ticked! My biggest hang-up is meals so will definitely be threatening can roulette tonight if I don’t get any help preparing the Lasagne I have planned! What a fab idea Louise.
Jos a massive good luck today I hope it all goes smoothly so you can join the “one to go” club!!
Rosie I hope your break was enjoyable and you too have an uneventful chemo today.
I hope you have had as good weekends as possible.
Cassie, I'm glad you got some sleep. How's the PICC? Good luck on Tuesday.
After a week or so of being reasonably energetic and on an emotional high, I completely crashed on Friday afternoon. Felt very tired and very down so the weekend has been a bit of a struggle, mainly on an emotional level I was a bit confused because i was feeling like I feel the week after chemo and yet I'm right at the end of the cycle. Cumulative effect I suppose and maybe I overdid things a bit when I was feeling "up".
I have Tax tomorrow morning so have had a day of Dexamethasone but, silly me, i completely f.orgot to check how many I had left. I seemed to recall having lots of packets but find I have now run out! Apparently they can just give me some to take straight away when I turn up tomorrow so i'll go a bit early.
I hope all of you currently with SEs are seeing an improvement and good luck to all who are in hospital this week. I will be relieved when this one is over and then I'll be able to say only one more to go!
Sleep well everyone.
Sorry some of you are having issues with sleep & steroids. I dont find too bad,its the hot sweats that make me have broken sleep. Do you all take your steroids by midday?
Yes nellie2099 the dr told me each rad session is 10min so leaves quite a lot of the day to do stuff but going by what jackie 09 has heard i could be spending most of my hol in the waiting room! Thanks for the advice on rads polar1 - the dr told me the tiredness would build up & would prob need a month afterwards to recover. Cant imagine its worse than the chemo at all like the lady said to you louise3721! Most people say its the traveling day in day out that does you in.
Hope you had the energy to see youre granchildren this afternoon joan47 after a better night sleep? Yes it will be a 100 mile round trip every day for 4 wks so thought we'd break it up a bit with hol nearby. Shame we cant do that for the full 4 wks!
I have found it hard to stick to things & concentrate too wildpurl. I have been sent some lovely letters of support but only just got around to replying - felt rude but explained people will just have to bare with me for a bit - sure they will understand!
Yes sorry lovewine!! Yes it is nice to have someone on the same timescale. Sorry you have found it hard going:( the worst part for me is the really sore,dry mouth & no taste - only just got back to normal today! And had a few nosebleeds this time but hardly any pains. Still prefer to fec! Thank you yes she will be so excited! We are staying in south devon. Beach 5mins from park & lots of attractions around:) Its reassuring to see what you put about the lumpectomy & mas - not much diff reoccurance wise. Yes i really enjoyed the race for life - really good atmosphere! Will defo do nxt yr & dress up!