Jump to content

bri's progress


Recommended Posts

hello all my friends, thank you all so much for your so generous good wishes, i really do appreciate every one of them, some i know must be real hard to write, again thank you xxxx


Hope, how nice of you to post and welcome to your new family, drs can only give you an idea of time etc, based on the average. not good, but i think generally they have no other way of being more accurate, unless they know there are other things going on. this i believe, is not always known at the beginning.

it depends what other problems are currently being exhibited, etc etc, every one seems so differant, but with similarities, and people respond to treatment in differant ways. im glad we have given you some hope, i still get scared , wondering how long our luck will hold, if i can help in any way will do my best, but i am no health professional.!!!!

What do you think about starting another thread that will be more appropriate to your own scenario you would probably get more posts, and help. if thats what you need? tho of course you can post anywhere in the meantime chin up, and stay positive, really helps.

lots of love to all of you, and thank you again laura xxxxx

Link to post
Share on other sites
  • Replies 93
  • Created
  • Last Reply

Top Posters In This Topic

  • laura

    17

  • rachelqt

    8

  • DRAD3

    7

  • PCUK Nurse Jeni

    7

Top Posters In This Topic

  • 2 months later...

hi all, well holiday was good, certainly i had NOTHING to do! did seem strange, [bri threatened me if i offered to scrub the decks lol] had, and still have probs getting head round losing my friend wendy, she was like family.im gutted still.


anyway we saw our oncologist today, and got our first hiccup, apparently there is a small nodule showing on the wall of the bowel, was on last scan but they sometimes dissapear, apparently, so was not mentioned last time, it shows small increase in size but too small to measure, talking about the size of a pea!! they are not worried about it, will scan again in 12 wks, but open access to clinic if we are worried, [they are so good] they have said it could be a sign that its starting up but know they have the means to zap it. but not rushing to do anything, gotta have faith in them.


not too sure how i feel, i asked bri how he felt, his reply was , "good", he also said at least its something they can see, not something hiding, so onwards and upwards eh, our friend [who we met at chemo] has got to go in hosp again, yet more on his liver! this will be his 4th battle. bladder, bowel, liver and liver again, so ours is so minor in comparison. id be lying if i said im not dissapointed for bri, but the reality is i cannot change it, so must practice what i preach to all you lovely people, "chin up stay positive, n be strong," so easy to write, but ........

anyway my love and good wishes winging there way to you all , chat soon, love etc laura xxx

Link to post
Share on other sites

Been reading your postings/Bri's progress Laura, you are an inpiration to all - I only joined this forum a week or so ago, and have gained so much in that short time. You are all such lovely people. Carole xx

Link to post
Share on other sites

Hi laura

Really pleased you had a lovely holiday, you deserved the rest. yours and Bri s story

brings so much hope for people on here, you both are an inspiration. I still come on

the site to see how everyone is doing, its nice to see you back. your knowledge and guidance helps so many people, it certainly did me.

hugs and kisses

cheryl xx

Link to post
Share on other sites

Hi Laura!

So glad you and Bri had a nice holiday and had nothing too do..lol! Sorry about your friend Wendy, this place of grief sure is hard. I was so strong when dad passed away, but now 8 weeks after dads gone it has finally caught up with me, so have come too the conclusion I just have to go with it and not hide from it, trying to look at it as a time to recover from the hellish year we had.


I hope this is only a hicup for Bri and as always you remain positive and upbeat, which is the key tool for this disease. It seems your team is really behind you and will do everything to try and treat this if it plays up.


Thinking of you as always,

Stay Positive

Much love Rachel xx

Link to post
Share on other sites

Hello Laura,

It's been a while since I checked in to see how you are doing and was saddened to hear about your dear friend Wendy's passing. I was also sorry to read that Bri has had a setback, but it sounds like your team have things under control and I know for sure you are in Bri's corner and won't let anything slip by. I'm glad you both managed a holiday though.


You are such an inspiration to all of us who have ended up on a road we didn't want to travel. It would have been Steve's 60th birthday today and I felt drawn to see how my PC compatriots were doing and check on progress particularly with you both. It has been a very hard day for us and one son has really struggled. We had a family lunch planned with my parents but he was too angry and upset to come with us so ended up on his own all day leaving the rest of us to try and keep some normality going. So I started the day with floods of uncontrollable tears (they've been locked away for so long) then gradually gathered my composure and put on the "brave face" again. It was one more anniversary to get past - we still have 23rd December when Steve passed away to get through, and of course Christmas, but as my other son said, "we've already had a Christmas without Dad", so nearly there.


Having this forum is like an old friend who you know doesn't mind the odd vent, so that's what I've done and I hope I don't have to apologise for it - because most of you understand where I am coming from. The time after losing a loved one is so surreal and I can't believe that it's almost a year since losing Steve, but I just keep busy and hope that time will heal - but it is still there. A friend of mine suggested you put the grief in a box and every now and then it's OK to lift the lid and delve inside, but you have to put the lid back down and realise that there is a future. Easier said than done sometimes, but I do see their point.


So please keep positive and try to have some "me time" if that's possible. Thanks for reading,

Lots of hugs, Diane xxxx

Link to post
Share on other sites

hi rachel and diane,


rachel really pleased to hear from you, you have been in my thoughts recently, i cant say i know how you feel cos havent trod the road you have, it has surprised me how im feeling about wendy, i know its anxiety, i wake up with a sick ache in my stomach and feel so sad, how on earth will i cope if anything happens to bri? i know i dont have a choice, but im so scared. rachel your so right about being able to cry and not bottle it up, i havent cried over wend, which is weird, cos i really cared about her! guess it will come. still got her clothes etc to sort for her husband and her bank stuff?


diane much of the above is applicable to you, but please please, never feel the need to apologise, every one here is here for you xx i knew it was close, the anniversary of losing steve, i think you are doing so well, am sorry your one son is finding it difficult to cope with, would he talk to someone?, perhaps one of the folks on here, he might cope not being face to face? we all hurt when we cant sort our kids hurt out, dont we? we have to remind ourselves we are human ourselves. hope you are managing to get some pleasure from your conservatory. thinking of you both and sending you big hugs and a cuddle, keep in touch if you feel up to it. love as always laura xxxx

hi to all my other fellow correspondants, wishing everyone peaceful times with your loved ones, laura xx

Link to post
Share on other sites

hello again everyone, just a little update ! sort of,! our clinical physciatrist, whos lovely, visited today, see him 3 monthly re bris mcd, he read the result of last wks scan, and explained it so well, with diagrams etc, he said it was so minimal, forget about it, but would look the scan up when back in office, so do feel better about it, i know this seems so paltry to what others on here are going thru! sorry folksxxx

ali/helen didnt mention your name, hope you are coping? love to all laura xxx

Link to post
Share on other sites

Laura, will be thinking of you and Brian, don't trivialise anything, its what is happening in your life and don't compare cos it's important to you and we all want to be here for you like you are for everyone here! Keep us posted! Love and hugs xxx

Link to post
Share on other sites

Laura, you and Bri are an inspiration to all of us here and I totally understand how you must have felt when you got this recent news. But I am so glad you are feeling a bit better since you spoke to your doctor. It probably is minimal but I suspect you are on the 'alert' for any sign or symptom and that is completely understandable.

You and Bri are often talked about in our house. Even though I dont know you I feel as though I do. I tell Bri's story when I see Dad wilting under this terrible disease and it always gives him a boost, Dad loved the fact he is able to go bowling again! I think he thought if Bri can do that, I might be able to do that again soon. So let him know how much he is helping others - as you are too. Much love, Lulu x

Link to post
Share on other sites

hello lulu, tks for your reply, am so pleased that some of bris acheivments are able to help others, i dont recount too much because i wouldnt want it to have the opposite effect, if you understand,


this weekend we both have had such lazy days. yesterday i had real bad fibromyalgia would not have been able to post, bit easier today, slept most of the day!! bri today has slept most of the day, says he has achey body?? Anyway onwards and upwards eh!

thinking of you love laura xx :|

Link to post
Share on other sites
  • 2 months later...

hello to everyone, sorry for being absent for a while, just not coping very well at times, should be buzzing really, my "get up and go, seems to have got up and gone"

However, we saw our oncologist on thurs 7th and all is well, no change to scan and he said nodules been there some months, just the way the radiographer wrote the report, says brian is doing very very well, see us in three months but no scan next time, he thinks the scan and then the wait makes brian quite anxious, would agree there, they are going to try fentanyl patches instead of mst and see if that helps with profuse sweating, our physciatrist also visited on 4th and is arranging a head scan, as brian feels the symptoms from that are causing possibly more probs than the pc, have to say things are difficult sometimes and when bri gets stressed it has a knock on effect on me, but hey, we are i know, very lucky, so onwards and upwards

much love to all of you and your loved ones, real sorry im not very animated at the mo.

take care laura xxxxxxxxxx :roll: FUNDRAISING, OOPS didnt post this either!! did my yearly bowling tournament last sun 3rd, had 64 bowlers, 16 teams from various parts of cornwall and even one in plymouth, some travelled over an hour!, managed to raise £650.00 clear profit, so was pleased with that, great supportive people, even had 37 raffle prizes, had food available all day, went well, fair dinkum knackered the next day, thought you all might like to know, love n hugs laura xxx

Link to post
Share on other sites

Laura,


That is brilliant news. But there is no wonder you are feeling non animated and a little stressed - you've had three years of this roller coaster and life hasn't been kind to you in the mean time. Take some time for you, and do some things you enjoy. Well done on the fund raising. You must be exhausted though - have a lovely rest if you can.


Lots of love


Catherine xxx

Link to post
Share on other sites

Hi Laura,


So pleased that everything is stable with Bri! Gives so many so much hope, I know it did with my Dad and family!


I know its hard for you because you feel all the emotions that come with this and that in itself is a great effort to face everyday.

It does catch up with you every now and again which is 'normal'. I can totally understand the knock on effect, so if you can grab a little 'me' time, take it!


Personally I feel drained after our experience, I go over and over it all the time sometimes with disbelief that a strong man went so downhill and amazed how we got through it all, but I do know it takes time to get to a better place!

I intend to live life to the full for my dads memory!


Wishing you strength & love Laura

Rachel xx

Link to post
Share on other sites

Hi Laura

Great to hear from you, I have been looking out for your update on bri, great news that the tumour hasn't grown :) he really is doing amazingly.

I'm not surprised you are feeling a bit all over the place, it really is hard work trying to hold it all together all the time, i'm so up and down at the moment it's pretty exhausting isn't it?!!

Please keep in touch, sending you big hugs..


Morwenna x

Link to post
Share on other sites

what great news Laura, Bri is as other people have said a great inspiration and

sends hope to everyone. Im not surprised you are feeling low at the moment, you have been

through a tough time lately and the rollercoaster ride of the last few years cannot have helped. you are always here with your undying support for everyone on this site, take some time out for yourself, im sure everyone on here will be right behind and right here if needed. Keep Strong

love and best wishes

cheryl x

Link to post
Share on other sites

Hi Laura

Wonderful news! And well done for the amazing fund-raising too! Did you manage to get to your counselling appointment? Was it helpful? You have been through such a lot, Laura and continue to live with the worry of "what if", so understandably you feel very weary. The time of year doesn't help - so cold and grey. I know you have a lot to be thankful for but you are also entitled to be totally fed up too - guilt free! Take care of yourself and have a well deserved rest.

lots of love

Deb

x

Link to post
Share on other sites
  • 2 months later...

hello sammy-lou, so very sorry to read of annes passing, i cannot imagine how you are all feeling, but feel sure that all the strength and support you gave to your hubby and to anne will also now help you through this very differently sad time, i really hope you will soon find some peace and comfort, and be able to enjoy your precious little girl,xxxx


really pleased to say Bri is doing remarkably good regards the P.C, scans showing no change, we are so very lucky I know.


he has had couple of blips!! on 5th april had numb lower right leg which at night progressed to totally paralysed left foot and ankle. out of hrs called as this was saturday, they collected him by ambulance, mri scan of whole spine----- nothing

bloods done ---- nothing,, however blood sugars are back up, also b.p bit on high side.

right leg back to normal, foot drop [- its name!] still there?


following friday, 12th, his speech went gobbledy gook for bout 4/5 mins, this has since been confirmed as T.I.A, but no residue of any problems. been seen by tia clinic and stroke nurse, so your guess whats going on is as good as ours, the things he will do to keep my attention lol, but he seems to be well, very tired but well,


me, im not too bad, life seems a bit of an effort at time,age i guess, my daughter [the twin] is still not coping with her twins death.n i dont seem able to help much, she has a councillor for her own probs and also a bereavement councillor who deals specially with suicide, [how awful, there must be so many] so she has support and guess it will take time.


bri and i are off to turkey next friday 26th [ fingers and everything else crossed eh ]

for a week, its a local flight from newquay which is marvellous, must admit i am really looking forward to this one, our last just after wendy dying wasnt great, still miss her so much, am keeping eye on her hubby now as hes not too good, trying not to get too involved, but wouldnt see him without support.


enough of me and my moans, sorry, thank you so much for thinking of me and bri in the midst of your sadness, thinking about you tomorrow, love to you sammy-lou, and all my other soul mates on here, debs, hows you love? love to all and strength laura xxxx

Link to post
Share on other sites

Hi Laura

So nice to hear that Brian is still doing well despite his blips as you call them, such hope to others on here. I hope you enjoy your holiday in turkey, you both certainly deserve it. take care,

cheryl xxxxxxxxx

Link to post
Share on other sites

Hi Laura - so lovely to hear from you and wonderful news that Bri is still keeping the enemy at bay! I am not too good at the moment. It is that awful time that many will relate to - the first anniversary of Gary's death. Vivid memories just keep coming back, which I don't seem to have any control over and I am just trying to go with the flow and get through the next couple of weeks. My daughter and I are going down to Cornwall for the May Day bank holiday to scatter his ashes - this will coincide with the anniversary of the funeral (and what would have been Gary's 48th birthday). I feel that this is another "obstacle" to get over and am not sure how it will effect me - I am still surprised how little I am in control of my feelings (not a comfortable place for me!) I am just trying to be very kind to myself and am spending time with good friends and do very little (which is why I have not been active on the forum lately - sorry everyone).

Sending my love and strength to you and to everyone else. You are all in my thoughts.

lots of love

Deb

x

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue. By using our forums you agree to our Terms of Use and Privacy Policy.