I get really angry when everyone thinks you are OK just because you have gone back to work. Nobody asks how you are feeling anymore,all the sympathy has gone, I sometimes feel like screaming,I have terminal cancer I am not OK,but I dont.I am so sick of this, every day is an effort. ... View more

Hi Jenny, It was good to hear from you.It is great that you are able to get away for awhile and hopefully enjoy yourself before having to come back to the grind of chemo.What is your chemo regime?I would have Cisplatin and Gemcitabine one week followed by Gemcitabine only the following week.Then I had a break for a week before it all started over again. The Cisplatin was a real pain as it takes so long to give,so I was happy when they changed me to Carboplatin which is given over an hour. I would not be too concerned about being seen by the Palliative care nurse. They do not only offer services to the dying but try and improve quality of life in those who are undergoing chemo etc.I always remember my Oncologist saying that I was not curable but treatable.so that was some small comfort.I was initially told that I had two years,but that was before chemo so hopefully that time limit might be extended. The trouble is you dont know when this thing will come back again.My cough is still hanging around which is a bit of a worry. I am due to see my Doctor in a few weeks so I will discuss it then. My friend had her kidney removed today. I dont know if it is RCC or TCC but will find out soon I guess.I think she will have to have chemo and radiation for the mets in her bones.Anyway she has a long journey ahead of her.I dont think the whole thing has registered with her as she said she wants to be back at work in six weeks. Anyway bye for now will talk again soon Judy ... View more

Hi Jenny Just wondering how you are going as I havent heard from you for a while. I have just learnt that one of my close friends from work has just been diagnosed with kidney cancer. Sadly it has already spread to her bones.It never seems to end does it. Judy ... View more

Hi Jenny, It is 2am in the morning and I have been awake for hours coughing so thought I would turn on the computer.Glad you appear to be getting through your chemo ok I was on the same drugs you are having however it was the cisplatin I couldnt handle.It is a very poweful drug and I had to stop it.They switched me to carboplatin which I was able to tolerate much better,The doctors admitted that it is a very hard drug to take,so if you can take it that is great.Everyone is different I guess. It is understandable that you dont feel like doing anything. I remember I preffered to sleep alot and that way I didnt feel sick.It really is unfair that we all have to go through this. I stumbled on this site by accident,in fact it was my son who found it.Some comments I found helpful,others very depressing.How is your hair going? Mine is starting to get thicker again but it is taking a long time.I used to colour my hair before treatment,but they advise you against it for at least six months. Any way Jenny I am going back to bed now as I have to work in the morning. Thinking of you Judy ... View more

Hi Jenny Glad to hear you have started your chemo at last. Unfortunately it does not come without side effects,nausea being the main one.I was given Emend for three days which got me over the worst part and then I was on my own with the exception of the little white pills which I found did not work too well.Ifound sipping ginger ale/beer quite helpful.I suffered quite badly from constipation despite taking a multitude of aperients.Fortunately I did not have a problem with mouth ulcers,although alot of people do.I think the first round of chemo is the worst as you do not know what to expect.I was not too troubled about getting an infection as I was pretty much self isolating except for visits to the shop.I felt too tired and sick to see anyone or go out.Saying all that it is amazing how well you recover after treatment has finished.I still have days when I feel really tired,but not so bad for me to take time off work.Do you know which chemo drug/s you are having? It was my birthday last week and my family gave me tickets to see Andre Rieu on Saturday night,so I am looking forward to that.I still have a bad chest.I do suffer from emphysema as well and so everytime I get a cold it stirs things up,so hopefully that is all it is.Actually my oncologist was not going to do another scan for four months,however I think I will ask to have it done sooner just to make sure Anyway Jenny take it easy and get lots of rest.It will all be over soon and hopefully seem like a bad dream Judy ... View more

Hi Jenny Glad to hear you have started your chemo at last. Unfortunately it does not come without side effects,nausea being the main one.I was given Emend for three days which got me over the worst part and then I was on my own with the exception of the little white pills which I found did not work too well.Ifound sipping ginger ale/beer quite helpful.I suffered quite badly from constipation despite taking a multitude of aperients.Fortunately I did not have a problem with mouth ulcers,although alot of people do.I think the first round of chemo is the worst as you do not know what to expect.I was not too troubled about getting an infection as I was pretty much self isolating except for visits to the shop.I felt too tired and sick to see anyone or go out.Saying all that it is amazing how well you recover after treatment has finished.I still have days when I feel really tired,but not so bad for me to take time off work.Do you know which chemo drug/s you are having? It was my birthday last week and my family gave me tickets to see Andre Rieu on Saturday night,so I am looking forward to that.I still have a bad chest.I do suffer from emphysema as well and so everytime I get a cold it stirs things up,so hopefully that is all it is.Actually my oncologist was not going to do another scan for four months,however I think I will ask to have it done sooner just to make sure Anyway Jenny take it easy and get lots of rest.It will all be over soon and hopefully seem like a bad dream Judy ... View more

Hi Jenny, Glad to hear of your good news and pleased that you will be able to receive chemo closer to home,as it can be quite draining.Hopefully you will get through it OK. Everyone is different.Your regime is different to mine though,I guess Doctors have different ideas. Keep me posted as to how you are going Judy ... View more

Hi Jenny, Let me know if you received my last message,as I think it got lost somewhere out there. Regards Judy ... View more

Hi Jenny, How did you go at the Doctors,I hope he had some positive news for you.I can understand your tiredness,it seems to be the main complaint for all of us.I do think that it does get better somewhat.I forced myself to go back to work and that was my salvation.It gave me something else to think about and make me feel as though I had my old life back again.The one thing that I do find upsetting is that people seem to think you are cured of cancer because you dont look sick.I guess it may sound strange but I hate being at home alone on my days off,mainly because it reminds me of the six months I was more or less housebound while having chemo. Did you work before your diagnosis? Anyway do let me know how you got on at the Doctors Regards Judy ... View more

Hi Jenny. I had to wait a month or so after my operation to start chemo, mainly because they were not sure whether the malignant lymph nodes in my neck were the same type of cancer (TCC)as in my kidney.The Doctors were hoping that it was a different type of cancer which meant that the cancer had not spread from my kidney.Apparently it is uncommon for a kidney cancer to spread to the neck.Unfortunately after having another operation it turned out to be the same.I imagine you should start chemo pretty soon.I am very anxious about a week or so before having the scan and then having to wait another day before getting the results. In a way I am lucky, as I am a nurse and can mostly understand the jargon.As I mentioned before the chemo is pretty horrible.The worst side effect is the nausea,however they do give you alot of drugs to help prevent it. I f you cant cope with one type of chemo drug tell the Doctors and they can give you something else. I was about to give up on the treatment altogether until they changed me to another drug.The tiredness is another thing you have to cope with.It has has been four months since my last treatment and I still get pretty tired.I did not lose all my hair although it did thin alot.I guess it is all worth it in the end. I do hope everything goes ok for you as you seem to have been through alot ... View more