I have just come back from seeing my oncologist and that was quiet a meeting…
So… I was preparing for bad news as far as brain mets but then I didn’t expect the possibility of surgery.
The tumor on the brain is 8mm and there is no swelling so there is a very strong possibility that the brain people might give me the option of the knife!
Bupa have also agreed to fund for paxataxol and avastin…(really thought they would worm their way out of that one)!!
So its all systems go but at the moment not sure what and when because of if and maybe.
What I do know is no more driving for me.
Will keep you all posted.
At the moment it looks like chemo start next week, brain surgery the week after and then after 6 weeks of the post op period will move onto avastin…
Bl**dy he** that statement read back was a bit scary;{
In the meantime I am trying to get the pain in the left side undercontrol…its killing me just typing.
I haven’t really had a chance to catch up with everyone else so please know that I thinking of you all,
That is sounding like good news - though an awful lot to go through. You did well to manage to post as much as you did - what a lot to take in all at once. So hope everything goes to plan and extends quantity and quality of life for you.
Hi Tess,
wondered where you were up to with treatment plan. This sounds scary but good that they have made the decision to finance avastin. Really glad that you wont have avastin until after surgery, it can cause a problem with healing. Don’t know if you read my portacath sage?
Tax combined with avastin has worked well for me so really hope it does for you too.
Really sorry about the driving though.
Take care and keep us all posted.
Love Debsxxx
Gosh Tess,
What a lot to have to get your head round and what a comprehensive post. Sounds positive that you have the possibility of surgery as well as taxol and Avastin. I was on Tax and Avastin last year for 9 months and it worked really well for me so really hope it does for you too.
Must be very tough to not be able to drive - I hope you’ve got lots of support and help to get you around.
Really rooting for you and thinking of you.
It certainly does sound “a bit scary”, Tess - so many treatments one on top of the other.
Am sure you will miss the driving too - one more thing this sh?* disease can take away. Hope you have lots of willing friends/relatives though who can provide a taxi service. Some of it though is about independence (or would be for me at least).
Thinking of you and really hoping that all goes smoothly and that you also can get that pain under control.
Hi Tess
Just to say that I have just finished 9 months on Taxol and Avastin which has been very effective. BUPA paid up so the question now is whether they will pay for avastin alone.
Hoping the surgery goes well for you, really sympathise about the not driving , one of the frustrating aspects of this disease is having to try to accept limitations on what we woukd previosly have considered normal
Love Kathryn
I went to see a GP on Sat morning and he has given me some steroids (dex) for the pain …
(The idea is that the dex will help to reduce the swelling in the chest and neck area.
I can not beleive the difference its made!!!
Atleast I can think straight again.
Yesterday was a normal day and the simple things like
loading the dishwasher were almost (and I did say almost) a joy to do!!!
Hubby bought a new computer on impulse!!!
First time ever…
but you can guess whos putting it all together!!!
I think he got in quick before I pegged it!!!
I thought I would just give you a little up date on what has been happening for me.
I have been very quiet this last week getting the pain under control, memory boxes for the children and the general getting my affairs in order.
I was put on some steroids which have made a huge difference to the pain and helped with the appetite. Also the Amatriptyln has been increased.
I have found in the last week most of the strength in my left side has now gone and Im struggling to get the fork up to my mouth.
It is scary how quickly this seems to have happened…the frustration is now taking over from the pain.
For me at present there are two things going on I am seeing the surgeon on Wed about the brain mets which is of course a big thing in itself but its not the b/met that are giving me a problem it’s the regional ones that are making me feel each day I am becoming more and more deformed and able to do less and less.
I have been waiting to hear from m McMillan nurse and also the pain Dr from our local Hospice ….Even my usual lovely GP is not as supportive as I have in the past found him to be.
My car went back on Friday and on Saturday the bike went, I couldn’t even get the bike of the side stand…really strange to think that I will never drive nor ride again.
My friends and family are very supportive but its so hard when you are used to being so independent…… the last few years I have been the one supporting my poorly friends so for the rolls to be changed its a nightmare.
Gosh Tess - what a lot you are contending with and you write so eloquently about it all. My heart goes out to you and I understand where you’re coming from about the frustration of losing your independence and so much at once is a lot to cope with. You are still you though and I really hope that you find strength to keep going and let people help when needed hard as that is. Sorry that you’re not feeling the support from your GP. I get the impression mine is scared of dealing with me as he’s somehow out of his depth which isn’t very comforting.
I hope it goes smoothly with the brain specialist on Wednesday.
Wish I could find the words but really thinking of you and wishing you well. Big cyber hugs xx
i wish there was something sensible and uplifting I could say to you but all i can do is cry alongside you becuse you should have something better yhan all this. Sending you so mych love and every best wish.
Wish there was something that someone could do to help.
As you knwo Tess I so can empathise with the impact of the regional recurrence. I’ve pushed my old regioanl recurrence moan thread back to the top. The impact on my life ‘just’ with regional recurrence is as you know massive.
But so sorry about the brain mets, so sad and sorry.
So far my GP is great and doesn’t seem scared of me.but can imagine how you must feel with he loss of that bit of support.
Just to say thinking of you and yours.
Understand the hell of having to be dependant on others, think free spirited bikers find lack of freedom hard to take.
All the best for Wed with lots of love and fighting spirit.
Hi All, just catching up on my last couple of days….
Life seems to have been quiet a roller coaster of emotions but today I have felt more like Tess again.
Yesterday I went to see the Neurosurgeon about getting under the knife only to be told that in my situation I would benefit from having the ‘Gamma knife’.
That was quiet a shock I can tell you….with the best will in the world its quiet hard not to let the fact you might be having brain surgery effect you but then to be told there was another way, non invasive, no general anaesthetic, no recovery period, good results and if all else fails then there is still the option of surgery.
(I am sure there are some side effects but I don’t know them yet)!!!
My Appointment is on the 15th next Wed so I am looking forward to finding out more.
In the mean time I had an appointment with my GP and I had the chance to tell him how disappointed I had been at the total lack of support and communication over the last 3 weeks from not only the McMillian nurse but also support for the children and help with my pain control……
Needless to say I had a phone call from the Mc Millian nurse!!!
Tess that is sounding like some encouraging news for you. I really hope this is going to be totally successful. Good for you for telling the GP just how it is!!! If only you hadnt needed though.
Goal! There is nothing like telling someone in a calm way how things have been for you, and it sounds like you certainly did that, and with that follow up phone call from the mcmillan nurse you achieved a lot. Well done.
I don’t know anything about the gamma knife, but here again it sounds like a muich better initial option that general anaesthetic surgery. You are on a roll - long may it continue.
Hi Tess,
really pleased to hear you will be having the gamma rather than full blown surgery sounds like a better option. Well if there is such a thing, it would be far better if you didn’t have to go through any of it. Sorry, I have just read that back and I am not sure it sounds as sympathetic as I mean it to. I think the stress that you have gone through in the last few weeks and losing your beloved bike is so sad and unfair.
Thinking of you and wishing the best possible recovery.
Love Debsxxx
Tess, this news sounds really encouraging - far better than full surgery, I hope it works brilliantly for you and that you are feeling good again very soon. Really sorry to hear that you can’t ride the bike any more though, that must be just horrible for you.
Glad the Macmillan nurse finally got in touch - better late than never, I suppose. My GP must be related to yours, I think - he almost physically shies away from me whenever I see him
Take care and my very best wishes that your treatment goes really well
Hi,
Great news Tess so pleased that you don`t need to go through surgery … what a relief.
Good luck with your visit next Wednesday, hope you have even better news!
Take care,
Love,
Janx
