Dont know y i feel the 2 need to share

FormerMember
FormerMember
  • 13 replies
  • 42 subscribers
  • 6068 views

Bad news today 

This afternoon 

Telephone call at 13.20  was told a MDT meeting  about me today 

Following a recent full body scan I had done (im sure last full body scan was in October) a urological would like to c me 

Oh I ask when 

Today at 15.30 

Ok I say

Go to the appointment thinking it was about the cyst on my kidney 

Wasnt worried about appointment I was told back in April no1 is concerned about the cyst they want to start chemotherapy soon as possible and because cyst is not causing me any problems they will leave it until after they have givin me treatment 2 try 2 control cancer growth.

Get called in 2 c the urological

Only to be told he wants to operate on me to remove my kidney as it is cancer 

Not until march

reason he is leaving it till march is if all the treatment I've had has not controlled  my cancer it will be pointless to operate 

I ask r u not goin to do test 1st he said no we can c all we need 2c from your last scan

I dont know what to say think I'm in shock

Sorry 2 all that read this n it dont make sense I cant get my head around it all 

Kym xxx

  • FormerMember
    FormerMember

    Dear Kym, I am so sorry to hear this news, you must feel completely overwhelmed by all this information. It’s a lot to process all in one go, so give yourself a couple of days at least to take it all in. I understand how it feels to have the proverbial rug pulled from underneath you, but don’t loose hope for a positive outcome, I’ve been on the mat before and then risen again to fight another round, and that might be the case for you too.

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you jane 

    Kym xx

  • FormerMember
    FormerMember

    So sorry to hear this

    I also know what it's like to go into that room unsuspecting and have the floor disappear from under your feet.

    Give yourself a bit of time to get over the shock.

    I can't make sense of it either, ask to have another appointment with your team to go over everything when the dust settles. It's a big blow, there are many people on here who have survived similar situations so hold on to that. Sending love and hugs xx

  • FormerMember
    FormerMember in reply to FormerMember

    Oh that must have been a terrible shock. I had breast cancer and kidney cancer going on at once so know how worrying it is. The main thing to know is whether they are connected. Perhaps your GP could help you find out. Mine’s been very good at helping me make sense of confusing information. 

  • Hi ,

    I'm so sorry to hear your news.  It has obviously all been a big shock to you and it is so much to take in and understand.  's suggestion of talking to your GP is a good one as they should get all the information from the hospital.  I see you have also had the support of a Macmillan nurse and they are also a good resource for chasing up the information and the reasons behind any decisions.

    I also have kidney cancer and they did not do any additional tests following my scan as they were able to get enough information from the scan to see it needed removing.

    I hope that things become clearer for you soon but in the meantime please remember to look after yourself.

    hugs,

    Gragon xx

  • FormerMember
    FormerMember

    Hi Kym,

    I am sorry you had such a bad experience, no wonder you are still in a state of shock. If they are waiting till March I don't understand the urgency to see you today? I have another type of cancer but still remember the shock and disbelief when I was told about it. I would discuss this further with your Macmillan Nurse and also phone the helpline if you become distressed. Is there any cancer centres near you such as Maggies where you can get peer group support? I hope you get some answers and you also manage to have a peaceful, stress free Christmas. Will be thinking of you. Love and big hugs Pat xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Dearest kym

    what a terrible experience and shock for you

    my specialist nurse and gp have helped me so much , the nurse is a phone call away and i can always see her ,  gp appointment similar .do speak to them to help you with this news 

    i don t live near a maggies but have heard wonderful things 

    i too have had kidney cancer and  have incurablebreast cancer

    my kidney cancer was 16 years ago ,had total nephrectomy,but every scan ,biopsy ,investigation i have now they make sure the two are not connected ,

    wishing you well 

    peaceful thoughts 

    janet

    xxxxx

    positive thoughts 

    janet

    xxxx

  • FormerMember
    FormerMember in reply to FormerMember

    Thank you all 

    I have still not been given a new nurse yet (my 1 left a few months back ) I could phone the unit n speak to a nurse 

    My gp is a nightmare to get a appointment  n I have not got a regular one  my surgery has had P.LS for a few years now 

    But I did decide last night that I'm not telling my children until after Christmas the last year has been all about me 

    After Friday (tomorrow) is my last trip to an hospital for a test or a appointment  we were all looking forward being hospital free until the 3rd of January   I'm goin to let my children have that still and deal with everything after Christmas 

    Thank you all so much for your advice and 4 understand my very mixed up post 

    Many thanks 

    Kym xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi

    What a blow. I’m so sorry this has happened. I don’t have any advice that hasn’t already been given. I think the decision not to tell the kids is probably the right one but be prepared to be flexible. They have a way of knowing that something’s up. I know my kids would always prefer I tell them the truth when they ask me a question. 

    Lots of love xxx

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Daloni 

    Thank you yes a big blow last appointment with my oncologist was very positive  even though she stop my radiotherapy as side affects  were very bad 4 me mainly my skin was so sore like they say in all leaflets  like sunburn she was worried it would go to a burn  and I would end up having to go to a burns unit  but I had 25days instead of 40 x and yes if my children ask I would never lie to them I would tell them but I'm think they wont ask they will put my quietness down to the radiotherapy even though it's only 2 weeks after radiotherapy has stopped u still will get side effects my oncologist did say it could last a bit longer 4 me as my skin is very red (I look nearly as red as a tomato)  I'm hoping they will have a lovely Christmas my daughter decided she is staying over from Christmas eve till my grandson gos back to school x it will b nice listening to my 3 all at home n I get to have lots of cuddles with my grandson it's the 1st Christmas  he will be at mine  xx 

    Love kym 

    Hope u r well I've still not caught up with all the post yet

    my son is out of hospital he had a brust appendicitis  n was operated on kept in 4 a week my youngest daughter had more mok exams  

    xxx