Unexpected recent diagnosis

Hi Candysmum. I'm not totally alone, but often it feels like it. I have one person I can talk to face to face and 2 on the phone, but only sometimes is that of any help. I do wish there were others I could speak to face to face or even on the phone. Most my  extended family never contact me and still haven't even though they know about my diagnosis. Well I did get a "thinking of you" card from one but not a sausage from anyone else. A couple of other family have been great but complications have meant that I can't see them again for now and I rarely speak to them. It's a long story why that's happened.

I can't say I'm doing anything this Weekend. I'm so stupidly lethargic that it's hard to even get out of bed. I didn't get up until midday, which isn't like me, but I'm just so tired. I can't go anywhere other than a short walk as I'm too wobbly and feel too rough if I do much. I think that's the cancer causing it but honestly I don't really know for sure. As I have other things wrong too, it's hard to know what's causing what.

Hope you're having a nice Weekend.   

Hi Jd.  :)  Yea I hope I'm not totally immobile or they won't even release me from hospital. I'll have one elderly parent to help me once I'm out of hospital, but she's limited with what she can do. So I just hope I can manage basic tasks like going to the loo and getting in and out of bed without help. If not, I'm unsure what I'll do, but I'll face that if the time comes. I don't want to think too much about "what ifs" as all that does is scare me more.

The NHS notes I was given make it all seem easy and that I'll be dancing around the place within a week!

If you feel mentally ready for work that's a good thing on it's own. If it turns out you can't fully cope, it's not a big deal and you will be able to before long. I guess only time will tell.

I'm sooo sleepy still even though I've been sleeping lots today. I just cannot wake up properly. ZZZzzzzzzzz.

2 more days until my post op appointment. Why couldn't they do it at my nearest hospital instead of where the surgery is being done? The same team use both hospitals so I think it would have been doable. Later today I need to read my notes about what to bring to the appointment and check on anything else I've forgotten about.

I'm not very nervous or worried yet for some reason. I just want it all over with and I just hope they'll get all the cancer.

I've also got a diabetes appointment on the 27th which will be a waste of time. So far I've taken care of my insulin, ordering more bits and adjusting my doses without their help. Nobody in that department seems to make notes so I've had to explain the same things to different people.

Then surgery is on the 5th September. I hope it's in one day and out the next but I'm prepared for a longer stay. I'm petrified about the personal side of staying in hospital for more than 2 nights but I'm too embarrassed to explain details here.

I've done some more looking around and cannot find anywhere appropriate where I could go to see Macmillan staff for help and counselling. The only places don't actually seem to be real as they're only for virtual help, meaning via the Internet. There is a different place not far from me but it's more about activity groups and going to the pub and various classes that wouldn't help me. I just want someone to talk to face to face but I don't think I'm going to find that.

I hope whoever reads this is doing well and having a nice day.

Hello. Thank you for your update. Don't feel embarrassed!! I've discussed toileting in here, because no one talks about the fact that when no2ing your abdominal area /incision sites feel like they're being ripped out! Well for me anyway.. I'm ok now 8 weeks post op! 
We are all here for you. 

Hello again. It's not toilet stuff I'm embarrassed about but other personal things. I just can't say even though I want to. I'm very weird with one particular subject and nobody would ever understand. I may be able to avoid it in hospital depending how long I'm in for.

Well I am worried about the loo too, but I guess everyone is in the same boat. Plus I don't quite know what will happen about that, and I don't want to know! So then I can't worry about it.

I'm looking forward to picking the scabs all day every day. Teehee. I know I shouldn't but I know I won't be able to help myself.

Hello Beefymoo

I don't have any practical help, I am just offering you some moral support. My husband was diagnosed with kidney cancer today, like you an unexpected diagnosis as he had successful treatment for bladder cancer a month ago. When we went for the biopsy results (from the bladder) he was told that scans indicated kidney cancer. He is shattered and terrified. Luckily he was told in a sympathetic manner, unlike yourself. He will also have to have the kidney & "bits" removed in a few weeks. I know what you mean about finding it difficult to speak to people, I am also like that. 

I hope that you find support on here, I was a member of a bladder cancer on-line group and they were amazing.

Sorry I can't do much but I am sending you positive thoughts and hope that things go well for you.

Hi Beefy Moo

This 'different place not far from me' may be worth trying, especially for face-to-face conversations. Often, centres organise 'classes', because shy people find it less scary than just sitting in a circle talking. The activity lets you chat, and that is the important thing, not the activity itself. Why not give it a go? You can always leave early if it doesn't suit you!

Hope your diabetic appointment goes well

best wishes

Kate

Hello MathsLady

So sorry to hear the news about your husband's kidney cancer. It's good that they have already made the decision to do surgery, so you know what is going to happen next. It must have been such a blow, after going through the bladder cancer too.

I hope you keep posting on here...this forum is full of supportive empathetic people who will help you through this if they can.

Fingers crossed for you!

Candysmum

Hi MathsLady, thanks for your message.

I'm so sorry that your Husband now has kidney cancer. After having successful treatment for bladder cancer he must have been so relieved, so to have this new diagnosis would be devastating. He isn't alone though and at least it's been caught now, so once removed hopefully that'll be the end of it. Try to look on it as an annoying set-back that will soon be resolved.

Is it the adrenal gland and lymph node they'll remove at the same time? I was led to believe that it's normal to do that with kidney removal, but I've since read on here as well as implied at the hospital that sometimes they leave the other bits where they are. I was also told yesterday that it's actually 2 procedures they're doing on me at the same time. It's so confusing that I've stopped asking questions and shall just trust they know what they're doing! Afterwards though I'll want ALL the answers.

I appreciate the positive thoughts very much, it means a lot when someone on here writes and shares their own story with me. It makes me not feel so alone. I hope your Husband's surgery goes well and it's the last cancer scare he has. Write to me any time if you want to off-load or just share how things are going.

Hi Kate, it's nice to hear from you again.

I understand about classes but as a shy person myself, it really would be so much worse than a one to one thing. I just don't want to be part of a class, at least for now. I'm too self-conscious too for anything that involves exercise, which many of these classes do. I just need to talk to someone face to face.

I've look up Maggie's locations as well as Macmillan and there is nothing anywhere near me. I keep on looking for somewhere near me but there is nothing. I've pretty much given up on the idea of any face to face support now. I could travel further away but the time, cost and anxiety of the journey both there and back just isn't worth it.