I am sorry but I am soooooooo tired from rads at 9am then Marsden at 2.30pm and all the info to take in.
I will keep it brief but in my heart it isn’t. They were in another league the Marsden. They went into the fact that I could have had an injection in my vertebrae that possibly would have stopped this fluid build up on my spinal coloumn where I can hardly bloody walk…I am mad this was NEVER OFFERED at Brighton at first sign of back problems.
Back to basics…and they are. My blood tests have shown my liver is starting to deteriorate so action must be rapid. Because alot of chemo is passed via the liver I have one option…a drug called Carboplatin. This will pass via Kidneys so put less stress on Liver…Now I can kick myself as I didn’t ask if anyother drugs in other parts of world that would do the same.
I am booked in for Kidney test Thursday, Friday booked in for chemo and injection in back. He did say that there was no treatment B. Hopeless again…I said I dont feel unwell etc and he said in younger women they have fewer symptons.
He siad this was our best shot and could see the determination I had to try this…no other option…!!!
He said if he didn’t see improvment in first one then unlikey it will work in second…Noooooooooo wayyyyyyyyy I feel so sick. I feel Brighton have made so many blunders…I was on a sodding trial surely you would think more care.!!!
I am knackered and feel the need to rest…Thank you girls for all your love support and kindness…if anyone has any knowledge on a chemo drug that filtrates via kidney pls can you let me know…
My mum is back at the Marsden tomorrow for her results after surgery etc. Your comment about them being in a different league has made me feel a litte less worried about treatments etc. in the future for her. Infact it has made me think if anyone can get her better it will be them.
Keep fighting Paula , we are all behind you sweetheart, it is realy dreadfull the way Brighton has treated you.
You are in my thoughts and prayers.
Lots of Love and Hugs
Lindiloo xxx
Thanks for taking time away from your family to let us all know how you got on. As many have said, none of us can stop thinking about you - especially when I’ve seen how bubbly and determined you are.
You were sorely missed at the LGFB workshop today - it didn’t seem right being there without you when you had suggested it.
Thank God there is some hope - I pray that this chemo will work for you.
Paula i am so glad that you feel in safer hands now. Thank you for troubling to tell us how you got on you must be so tired. I hope that you are able to relax tomorrow before your Thursday visit.
We are all behind you in this sending positive vibes… I will continue to pray for you.
Brighton has a lot to answer for.
Margaret
Paula, thanks so much for updating us. As you can guess, many of us have been thinking of you all day.
As Sharon said, you really were missed at the LGFB workshop today. I was so unsure about going given you had organised it, but glad I did because I met others who felt exactly as I do regards your experience. You were very much in our minds.
I’m so angry at Brighton - yes, my hospital too. I’m so angry that you’ve had to struggle with them and as you rightly say, being on a clinical trial should bring in more care. What a shame that the real care comes from the clinical trials nurse alone - I never see my oncologist!! Blunders in your case is probably a mild description … I’m horrified at what’s happened to you.
Paula, good for you for not giving up. I so hope the chemo works. I’ll be thinking of you on Thursday and Friday.
Like everyone else I have to say thanks for updating us.
I know that Brighton have been the pits but the best thing to do now is think about the treatment you are having. Today you have hope - which you didn’t have last week!
We are all rooting for you.
You must be totally pooped - try and get some rest before the chemo.
Hi Paula
Ditto what others have said about taking the time out to update us. I have been thinking about you all day and am pleased you feel in safer hands.
Regarding your info request on Carboplatin if you log onto the cancerbacup website they have a whole list of drugs and info about them. Carboplatin is on there as I have a friend with hodgkins whose on it. She has tolerated it very well.
Good luck with your new treatment.
Cyber hugs
xx
Hi Paula,
well done for getting through today it must have been pritty exhausting - rads (still in Brighton i assume) and then up to the Marsden plus all the stress. Still at least you are now 'logged in at the Marsden and i am sure they will do their best for you. can you move your rads to the Marsden - surely you can’t be expected to travel between both hospitals? I am so sorry brighton has messed you about so much and from a purely selfish point of view now wonder if the treatment i’ve had there has been up to scratch. Like FB said best to put that behind you and focus on the new treatment. Hope you get some sleep tonight and can enjoy a cuddle with your kids in the morning
cheers
caroline
Hi Paula,
Thank you so very much for updating us especially after the very long stressful day you’ve had…you must be exhausted.
So pleased the Marsden have given you a ray of hope though…try and rest tomorrow as thursday and friday are going to be stressfuldays for you again…but at least something will be being done and will…we all pray…help you.
Go in their with your fighting spirit…we are all behind you and beside you in your fight.
Hi Paula,
well done for getting through the day and I know exactly where I will ask to go if I ever need another opinion! Carboplatin was mentioned in the book in 2003/2004 I believe in the US. I have several US books and will do some reading to see if anything comes up that is of any help or interest to you. I too am disgusted by the seeming lack of care given you and now regret moaning about the routine bone scan, CT scan, chest x ray, etc that I had as of routine. Waiting for results on mine and being on the same trial as you, it has made me more determined to follow all mine up. I just assumed everyone is checking all mine as I am on the trial!
Mainly I wanted to say that I am so glad that they have this option and that you were strong enough to fight for it. Well done.
A little while ago there wasn’t even a plan A to try, so you have still moved into a much more positive position I think. No-one needs a plan B if plan A works and that is what we are all hoping for you.
Thinking of you and take it easy when you can and stay away from crowds, etc, you don’t want a cold or bug at this stage.
Hugs
Lily x x
Hi Paula, Can’t believe you could have had that injection!! I really hope that the treatment plan they have works for you. You must be exhausted. Hope you get some sleep, you brave woman. Sleep well and chat tomorrow. x
Paula, You have had a very long day and I’m sure a lot of info thrown at you. I wonder if Plan A works and shrinks those tumors enough if then they could come up with a Plan B at a later date. Bless you and stay determined!! Funnyface
Early start to day as usual with tears and a cuppa.
I am finding it sooooooooooooo hard to get this plan A as positive as I can. I thinks it juts each time I went to Onc feeling positive and TRUSTING !!! him I feel so let down. My family are watching me hobble not walk alone due to the fact all nerves are damaged from cord compression. If at first opportunity of seeing a T5 fracture did he not think…well I can give her that injection. Nooooooooo he said nothing to worry about MRI test that will show up…3.5 weeks later with result…very worrying possible sedcondary in vertebrae. Mhhhhhhh still no injection. Lets do CT scan time frame to wait and get results approx 2 weeks then the news…the smack oh yes your Liver is enlarged. All along this time I complained about bloatedness my own GP’s were the guys to feel it then said to Onc you had better look at it…yes he looked at it the day I was told CT results anyway…the day of NO HOPE. His nursers backing him, no if he sayd noting to worry about then it wont be…dont be silly Paula you wouldn’t get a secondary this quick. There was no sign of cancer on original X-RAY ( that I paid for myself)
As I said before being on a trial having bc in general does not give this ONC the flippant approach they some display…would they treat there wives the same???Blood tests that show increases in liver function…so a 3 week test can go from slight changes to this and no-one picked it up until this late…!!!
I need to focus on this I know…sorry just need a right kick up bum and sod Brighton and the Onc there. I am being taken on by Marsden and thats my hope…
I am sooooooooooo angry I may take this further…in fact I know I bloody will…too damm easy to be flippant when dealing with BC and its many forms.!!!
Thanks darlings moan over…will try to get a bit of sleep before babes awakes…can’t even lift him now and my 6yr old helps me walk…soooooooooooooooo not right.!!!
LOve and hugs
Thanks always you help me so much xxxxxxxxxxxxxxxx
My heart goes out to you Paula.
I’ll be keeping everything crossed for a brilliant response to plan A, then as Lily says you won’t need plan B.
Love
Claire x
Hon, you are so so justified in being livid. I am sure everyone here is spitting feathers on your behalf. It beggars belief that whilst on a clinical trial your hospital and oncologist can have such a cavalier attitude. We know our bodies - hell, most of the time bc is detected it is because we notice something ourselves and request a referral - and to be ignored and dismissed when the stakes are so high is criminal. There is no doubt that there has been a cock up here, for which I am truly sorry, and I agree that questions must be answered at Brighton so that mistakes aren’t repeated.
But right now the priority is you and your well-being. You haven’t exactly had much time to get your head around this Plan A, so you don’t need to be oozing positivity right now. Perhaps once you move out of this horrid diagnositic stage into a treatment stage you will start to feel differently. There is no pressure on you, either way. Gain hope from the posts you’ve had from women who were written off months and years ago in similar predicaments. We are all unique and we all respond differently to treatment. You’ve got good things going for you regarding this treatment - you are young and you are strong and fit (ok, present ailments excluded) to physically take the chemo and side effects. From reading your posts, you’ve also got incredible resilience and mental strength. I am in total awe of your ability to still come on here and post throughout this (I confess that I was dribbling on valium when I was dx). You’ve got the love and support of your family and friends -at home and in our cyber micro-climate. And, you’re being treated at a fantastic hospital who are going to give it their all. Be kind to yourself & try to rest today.
Yes Paula focus on your treatment but don’t let Brighton get away with this. There are one or two ladies on here who have had cases or have ongoing cases against their NHS Trusts so will be able to put you in touch with medical negligence lawyers.
In all this flux and anxiety do please try and keep records of where you went, when, who you saw, what was said etc. etc. and get copies of your records and ensure that you continute to get copies of notes/letters to make sure they do not write untruths whilst telling you something entirely different. You wouldn’t think it could happen but then you would never have dreamed that you could be treated by Brighton in the way that you actually have been.