Dear JayKai

Firstly, i have had my rare cancer for 12 years and a lot has happened to me during this time.

I dont know if you can access my history?

Please take comfort from the fact that actions are taking place very quickly.

You may be tired because of the situation and McMillan may be involved at a later stage.

I believe that you are now on a two week list and that this is good as they want to remove the problem quickly and give you the best possible treatment.

I cannot say why your consultant gave you a short time? Dont think too much into the situation.

Your job now is keeping yourself in order ready for the surgery. What ever you do is keep away from the internet apart from recognised site like this one. They can scare you.

It is hard and what you describe is a normal response.

Many years ago i had scans on the same day and they found a tumour the size of a cricket ball in my upper left rib cage and i was placed on 2 wk waiting time but two great surgeons removed it and saved my life.

I too was very scared but keep positive as i believe that you will have good proffesional people taking care of you.

I am 54 years and worked as a Proffesional public servant and i had all, my diagnosis and friends visiting me but the cancer was rare so i also knew that i was hard finding any details?

I will stop now and give you more advice. Keep the people you know very close to you and dont be scared to talk about it.

Just try and be strong and you could maybe get more advice from the CRUK nurses the number is on this site.

Finally, i will say is NEVER GIVE UP and do your best to move forward. You are doing really well by coming onto the forum and asking the questions that i would say are normal.

Keep on going and stay close to good friends and family.

If you need anymore questions answering please come back to me as i have a long knowledge and experience over the years that i did not want it. However, now i want to use it to help people like you and make the journey easier.

All the very best Jay Kai and keep CONFIDENT that you can do this and get to the other side. x

Andydorro1

Hi Jay,

Welcome to our forum, although I'm sorry for the reason that's brought you here.

No question is too vague to ask your care team. I have had 2 bouts of breast cancer in the past 8 years and initially found that I didn't always remember what we had discussed at an appointment. I found that by the time we had reached the hospital gates, I had forgotten almost 70% of what had been said.

I was then advised to always take someone with me to my consultations and to draw up a list of questions before each appointment. I then started to draw up 2 copies of my questions. When we visited the hospital I would give my hubby the copy and he would write down the answers whilst I asked the questions. Many of us here do this, so your consultant won't be at  all surprised at you doing this.

You ask about tiredness. I can only really answer for myself. This has been a great problem for me and it is only now that I have finished my course of hormone therapy, that I am beginning to feel less exhausted. I found that I had to give into my tiredness and have a nap every afternoon. There is  no point in fighting the tiredness, you have to succumb to it! Many people here also complain about tiredness. Some seem to have it from the start, whilst others seem to find that it comes with chemo or radiotherapy.

Do you have any family or close friends who you can discuss things openly with? This can be a great help. If you don't have anyone, many charities offer counselling free of charge. There can be a wait for this, as it is a popular service.

It is a very difficult time when you are trying to come to terms with your diagnosis. Most of us find this amongst the hardest times of our cancer journey. We cry a lot. If you find this, let the tears flow, as it is a great release valve. We also find that our emotions are all over the place and our families can find it difficult to cope with our reactions. Fortunately, this usually settles as we move on to surgery and treatment and, you will feel more positive, as you start to fight the disease.

I shall be thinking of you on 18th and hope that your operation goes well.

Please stay in touch and let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Thankyou Andydorro1, I agree with you re the internet, too much information, too much to make me alarmed and not necessarily relevant to me. I'm doing my best to stay positive and it seems that my prognosis is good at this stage but I feel very alone. I have only told a few close family and friends so far as I am still coming to an acceptance myself and can't deal with other people's feelings and reactions. I hate fuss. Hoping Thursday's procedure is successful and simple but not helped by my dread of anaesthetics! Thank you for your encouragement and welcome, I will read your story and keep focussed, very best wishes, Jay x

Dear JayKai,

You are right keep the confidence approach and the fact that you are going to take this on fighting. You are dealing with Proffesional people who know how to look after you with empathy. You are in a good position and they are onto it straight away. My kind of people.

You must keep yourself strong and my story is very large but 12 years on i am still here.

My very best wishes Jay. GAME ON! and KEEP POSITIVE. The team looking after you cannot do anthing more as they are moving so quickly that does not mean you are spcial :) but they are not messing and it appears you have good people on your side. x

Hi Jay,

Welcome to the chatroom - the perfect place for asking vague uninformed questions :-) 

The first few weeks after diagnosis are difficult - so many emotions whirling about and the stress of this alone is enough to make you feel unwell. 

As others have said, writing down questions for your consultant is a good idea - there's also the option of phoning the CRUK nurses on 0808 800 4040 anytime between 9am and 5pm on weekdays for more professional advice.

Best wishes

Dave

Hi Jolamine, thanks for your warm welcome and comprehensive advice. I had no plans to join this "club" but it's a relief to find a group of people who have been where I am now and understand. I was alone for my diagnosis but will be sure to have someone with me in future. It's taken me until now to be fully aware of the questions that I need to ask and have made two  lists to ask the urology clinic tomorrow as you advised. I am having to acknowledge the tiredness, which has definitely got worse, but, as a busy active person, it's hard.Just conserving my energy for Thursday and encouraged by having an appointment date for the post op follow up appointment - at least the professionals can see past the op which I can't just yet. I know I will adjust and deal with this but know that I need to be gentle with myself and go with the flow. At least things are well underway now.  As you say, my emotions are allover the place and tears come unpredictably. At the moment my prognosis seems good so fingers crossed. Thank you again foryour reply, yes, I will keep in touch, and I appreciate your thinking of me. My very best wishes, Jay x  

Hi Dave K,

I feel encouraged by the responses that I have had from yourself and others, 

It's helpful to not feel so isolated and as if their is a barrier between me and everyday life. I'm confident that,as you say, once treatment proper starts I will be able to engage as positively as I can with the process. 

 Thanks again and all the best, Jay.

Hi Jay,

I am glad to hear that you are bringing someone with you tomorrow and that you have drawn up a list of questions. This should make it more difficult for any doctor to cut your consultation short.

You will probably be even more tired after your operation, but you’ll just have to give in to it. Are you managing to sleep at night? I hope that your urologist can enlighten you further tomorrow.

Kind regards,

Jolamine xx