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chat tomorrow

16 REPLIES 16
tracy1964
Member

Re: chat tomorrow

hi , dawn i am in london on the 11th and 12th to go to the marsden . will discuss SIRT then .
feel nervous today as no chemo and it was my chemo day and as you know my 6 have finished . xeloda alone now .
am off tomorrow to get a port put in , will be back sat night .
love to all , Tracy xxxx

dm1968
Member

Re: chat tomorrow

Hi Tracy

Glad it went OK today and that you did what you needed to do. Sounds like things are going in the right direction and as you said, scans didn't show much change as had them quite near to each other.

Have to let us know how you get on in London - what date you over and where are you going (apologies if you posted this, brain mushy - herceptin day to day). Let me know what is said about SIRT too. Have emailed to my sis-in-law as she works in chemo unit in Falkirk, so gonna get her to ask her oncs. Interesting to see what they say. Will let you know.

Hope you are OK this evening though, and can relax now.

Take care
Love
Dawn
x

tracy1964
Member

Re: chat tomorrow

no wasnt too bad , when we got in there he was running late so wew just got down to facts . seems he thinks all is going well and the reason my last scan didnt show much improvment was because it was so near the last scan. The scans were sitting on his desk on the huge brown envelope but strangely enough he or us never mentioned them , they just sat there !!!!!!!!!!!!! well i wasnt going to bring them up , so that was that ! dont get me wrong we went through all the results on paper and he did little graphs etc but that was that . going to continue the xeloda at a higher dose now the tax has ended and keep an eye on markers .
when we go to london in 2 weeks other options will also be discussed , ie the SIRTS .
well hope everyone is ok and thanks again for all replies .
love Tracy xxxx

Kay123
Member

Re: chat tomorrow

Been thinking of you today Tracy - hope the day has not been too stressful.

Lots of love

Kay xx

ForumMember
Member

Re: chat tomorrow

Hi Tracy

I hope all goes well for you today.

We looked at the scan to my eye and I'm afraid I will just stick my head in the sand if offered to see scans of all my other 'alien friends'. I think Blondie's idea is good, as my OH would like to see everything.

Take care
Love, Jen x

tracy1964
Member

Re: chat tomorrow

well just off , thanks for all your replies i have digested all of them . at this moment i have decided i dont want to see them but like you sixpen i will prob cry in the corridor beforehand which i have done many times before . i have taken 2 lorazepam (highly strung natrually ) and hope i can be calm but once in there all my questions come firing out i get in a tizz . oh what a way to live it really stinks eh .
be back later , love to all Tracy xxxxx

ForumMember
Member

Re: chat tomorrow

Tracy

Perhaps it's not my place to comment but it is difficult for the "OH" and I personally can see this from your husbands point of view. I think Blondie's suggestion may perhaps offer the best compromise but ultimately it's got to be your choice. In our case if my wife said she didn't want me to see the scans then I would accept that decision. Currently we have not seen the scans, I would like to but my wife is uncertain and I am not pushing it.

Good luck

Nigel

allie4
Member

Re: chat tomorrow

Hi Tracy,
Its a horrible situation to be in. Being an ex nurse I like to know everything though sometimes its not a good idea. At my last appointment I found out I had an infarction in my spleen. They don't know how this happened bur apparently there's nothing they can do about it and it won't do me any harm. Another thing to worry about!!
Good luck seeing the onc,
Allie

blondie
Member

Re: chat tomorrow

Tracy
Could you not leave your husband with the Onc., to ask his questions and see the scans without you being there (you could go off for a coffee or something)? You can always see the scans another time, as Belinda said. I can see both sides, your husband's need to see what you are both up against, and your reluctance as it is bad enough to have to live this without having to see it as well.

All the best whatever you decide

Blondie

dm1968
Member

Re: chat tomorrow

Hi Tracy

I had never been offered or shown my scans, but when I went for my liver referral, the professor asked if I had seen them and if not, did I want to see them. When i said yes, he was very honest and said would be really truthful and open. We went ahead and saw them, and at first I was really scared, as wasn't sure what I was looking at, and saw big black bits which i thought were the tumours, but they go from feet upwards and so it was not what I thought. However, I was a little shocked as i thought I only had a couple of tumours (my onc led me to believe), but actually I had quite a few areas on the right hand side of my liver and one on my left.

I am glad that I saw my scans and wished that had seen my recent ones from December, but they had not been sent for some reason.

It is down to ones own preference really, and how you think you will take it. I was quite upset really when I saw how many tumours but now I have come to terms and have since been told my tumours responded specatularly well to chemo.

I think you have to be the one to decide and not your husband really as it is you and your body.

Anyway, good luck and let us know how you are.

Lots of love
Dawn
xx

dawnhc
Member

Re: chat tomorrow

I have always asked to see my bone scans - I felt it helped to know and have explained where they were because sometimes that would help me to identify why a particular area was hurting. I also questioned my oncologist about which areas could present particular problems, e.g. I have damage to the odontoid peg in my cervical spine (the bit that enables us to turn our head from side to side). Last year i had extreme pain in that area which they seem to regard as quite dangerous and urgent so I knew to contact them straight away. I suppose you can ask exactly where the mets are, but I find it helpful to 'see' as well. I have also found it very encouraging to look at subsequent scans and see how some of the areas have improved so for me it has been quite a positive experience to see them. But as everyone is saying - it has to be what is right for you. I think if my husband didnt take seriously how much of a problem housework is for me (smile) I might want him to be shown the scans!! Sensible advice from Belinda - you can always look when you are ready to.

Dawnhc

belinda
Member

Re: chat tomorrow

Hi Tracy you can always look at the scans another time..if you don't want to see them now you might want to next time..or perhaps not. I don't know exactly where all my bone mets are, know I have them, that's all I want, need to know. I haven't asked how long to live either. Love Belinda..x

ForumMember
Member

Re: chat tomorrow

Hi Tracy

Firstly, I would like to send you a great big cyber-hug (((hug)))

Secondly, I too have recently had scans - my 2nd lot. I have bone mets and had doubts as to where it had spread - regarding aches and pains. It really helped me when Onc had the scans side by side on the screen and went through it with me - it was my choice btw. It has spread but not to where I thought it had. She showed me CT and bone scans. I was really frightened before I went in - I started crying in the corridor. I wanted her to tell my husband and not me!!

My first CT had shown a 4mm cyst on my liver - it was still 4 mm on 2nd lot of scans!! I dont think that I'd have believed it if I hadnt seen it for myself iykwim.

I would like to send you my best wishes for tomorrow - go with how you feel when you get there.

Please let us know how you get on.

Take care

Anne xx

Jacksy
Member

Re: chat tomorrow

Hi Tracy,
Hmmmmmm, a difficult decision. I haven't seen any of my scans, and I really don't know what i would do if offered to see them. I can't really offer any advice, just came on to offer my support. Useless I know, but hoping you can find a solution you feel at peace about.
love Jacquie

Kay123
Member

Re: chat tomorrow

Think it must be your decision, Tracy - only you know how you will react. For me I've always seen scans etc when possible (but like Jenny don't want to know about life expectancy partly because I feel that that is based on statistics and probablilities rather than true knowledge as to how my particular disease will progress). If I didn't see the scans etc, I think I would worry far more about what was happening inside me. My view somehow is knowing the facts helps me deal with what is the reality - and also recognising when things are going well, eg knowing that the mets are still there but are much smaller, or that the tumour markers are still raised but are much lower than they were.

BUT that doesn't mean it's the right decision for you - we all have our own individual ways of dealing with this. Also difficult if your hubby has a different view - mine went through a stage of wanting to know life expectancies (in detail) and I had to convince him that he didn't really!!!

Good luck with the appointment whatever your decision - let us know how you get on.

Kay xx

Jennywren
Member

Re: chat tomorrow

I do ask about most things but I haven't looked at my scans (don't want to) and I don't ask about life expectancy.

Good Luck with your appointment.

Jenny
x

tracy1964
Member

chat tomorrow

just wanted an opinion , am seeing oncologist tomorrow to chat things over with hubby re end of chemo etc , now he wqants to go through scans with us to show the mets , where they are and how big but i feel scared s******** to see them and cant decide if i want to or not . what if they are all over and i cant bear it ? what would you girls do ? hubby thinks its a good idea but im all mixed up .
love Tracy xx