Kidney cancer update

Hiya Geoff. Nice to meet u...I only recently joined the group.  You definitely been having a rough time. My circumstances are very different to yours but you seem to be a stoic sort, taking each hurdle at a time. My biggest problem is mainly great fatigue, but I am learning to pace myself and asking for help. I am a doer, prefer helping others more than myself. Lol. It was a heart attack that brought me to where I am now. It was caused by a blood clot. I was hours from death the consultant said. During my recovery and shock I realise that I had spent my life rushing everywhere,  missing the bird song, the sunrises, the sunsets, the heart attack actually grounded me. My ethos now is day to day living. I bless the day if i wake, make my coffee and make a list of things I want to do that day. If I can tick 1 thing off that list I am chuffed. My other rule is 2 look, feel or find 3 sources of joy...which as u know on the bad days is not at all easy. Some days like you I want to give up, the pain, the fatigue, the hospital appointments..it can all be too much, but maybe I am still here to give support and a smile to people like you, or a stranger in the ct scan waiting room, or a laugh with a nurse who is tending to me..who knows..I am notcready to die either, but if I do I know i went out smiling, leaving people the memory of that mad woman, always being silly, dressing weird and not acting her age..

Always here Geoff..don't be hard on yourself..you're doing amazing. 

Hi Fleabane, nice to meet you too. Thanks for such a kind and positive reply, it was very nice to read what you had to say. 

I guess I have been taking things one at a time, but really that's how things have worked out. They fix or somehow deal with one issue, then another pops up. I end up with no choice but to go to even more appointments and have more scans. Sometimes more than one treatment is happening at the same time, or like with my recent bowel problem, treatments clash so they come up with these tailor made IV drips just for me. I'm not even sure what my treatment on Friday is for, but I'm going because I don't have a choice if I want a chance to get better. 

Like you have, I used to have bad fatigue. That's actually what alerted me to something being wrong. Since around the start of 2024 I felt more and more fatigued and also had a loss of appetite. I tried various things like iron and other supplements but nothing helped. In the end I saw my doctor. I thought from other symptoms, and she agreed, that it was diabetes. Well we were right, it was the next day I was already in hospital having tests done. Oh but before the day was out they also told me they found a lump, which was cancer. I was too stupid to have even considered that but my Sister and Niece apparently both suspected it and had been pushing me to see my doctor. Anyway, sorry to keep mumbling and drifting off the subject! So the fatigue has now pretty much gone so that's good. Not that I'm full of energy but it's not like it was. I also don't appear to have diabetes any more since my kidney was removed. Doctors aren't sure about the reason but they aren't looking into it much. It is as it is so just a blood glucose check now and then. 

You said it was a heart attack caused by a blood clot that started your own troubles. Was there a cancer that caused the blood clot? In my case I was told that cancer can cause sticky blood which can cause blood clots. Lucky they did a CT scan that just happened to find it. I'm sorry that they didn't find a clot in you before it caused a heart attack. That must have been very scary for you. 

I love your attitude to life now, it's very positive and it's more how I should be thinking. If things don't improve for me then I hope I'll be mentally able to have a similar attitude to you. At the moment I'm just scared. If my next scan doesn't show anything bad, I'm hoping I'll have the strength to pick myself up more than I'm doing so far. I also hope my girlfriend will try more, but she's being so guarded and standoffish that I'm worried she'll never try and be close to me again. I really need the closeness of a relationship and someone I can do simple life things with. I'm not someone who has lots of friends to talk to. I only have one true friend but she lives so far away I barely ever see her. 

I try to talk to people looking after me like the nurses and doctors, and of course the other patients. It doesn't really work though. They don't have much time just to talk, they have other patients. I still have a joke with them as much as I can and I do get compliments that I'm smiling despite what I've been through. That's it though, it's only a brief connection and then they're off to the next patient. I've also found it impossible to connect with other patients as the huge majority of people I've seen are either too old and deaf to even know I'm there, or they're too caught up in their own issues to even make eye contact with me. 

Keep up the positive thinking won't you and say hi any time.

Geoff.

P.S. I just read your profile and wow, you've been through so much! I am amazed at how positive you're being with all that's happened to you. I think you're amazing.

Right Geoff 2 stories for you. The first when I went for my pre op for my nephrectomy. I was holding it all together, I had to give up a job I loved, I shared then shielded my hubby and sons my cancer verdict. I really believed I wouldn't last long because my brother and mother died quickly of different cancers, nursed both. Anyway, the nurse in pre op saw me, alone, leaving my hubby in waiting area. All that masking and bravery fell away and i sobbed and sobbed. Now this is the important bit..the nurse said. That I had no control of the cancer, that was in the hands of my medical team. She said find the things in your life u can control. It sounds silly now but it grounded me a little. I dried my eyes, lifted my chin. I came home and made a nest, a place of comfort for when I came out of my op, I packed my bag, lots of pamper stuff and I am not a girlie girl so that was fun. And I keep that mantra now. 

So look at your life now.What can you control? U mention ur girlfriend. I think it's worse for a partner because they only have their imagination and not the experience.  Maybe u could invite her to visit and stay somewhere neutral for a night to reconnect.

Just throwing ideas here, remember I don't know ur circumstances.

Second story was from last saturday. I was ready for my CT scan and I got talking to a bloke who's cancer started in his lungs, he was given 6 months to a year. He didn't think he would see his grandchild being born. But low and behold he took her to school on her first day. So that's 5 years. His has spread like your into his neck, his liver...he can't be cured but each treatment is shrinking and managing it all.he was about ur age. He looked well and said he felt well...treatments are amazing now, and new ones coming out all the time.

There is always light to find if u look hard enough. Don't let the darkness overwhelm u. 

Hugs and best wishes

Hi Fleabane,

When I had my preop I don't think I was very with it. I didn't hold it back from anyone, I just got on with it but as it was my first surgery I wasn't sure what to expect. The whole thing was so surreal for me. It's good that what the nurse said to you helped. I don't remember having any helpful words at the time. I've been offered various types of counselling since but I can't see that helping me if it's just one on one with someone I don't know. 

You asked what I can do about my situation as I can't control the cancer. Well I do have some control of the cancer by going to all the appointments and getting all the recommended treatment. As for other things, well I'm trying to get on with life. I've been out today actually as part of that, had a walk, eaten out, sat on a bus. I was with my mum but I'll do that stuff on my own soon. I have asked my girlfriend many times recently to sort out a weekend she can come to see me. She isn't keen at all though and won't even make a tentative arrangement. I've told her I won't be myself but at least we could have a day together. She is being very guarded and holding back a lot. I really don't think she wants to see me any more. Maybe me being so ill is too much for her. I've thought a lot about how I could persuade her to visit, but I only think I'll push her away more. I don't know what to do but I can't not see her ever again. The time may come where I cut myself off from her for my own sake. I hope it never comes to that.

That's nice to hear stories like the man you met who's lived much longer than expected. I often read stories like that but then the negative side of me wonders how many stories there are where the person has lived less or the same time as expected. What scares me most is the unknown and how fast things can change. One thing leads to another too, like my cancer led to a blood clot and bowel issues plus more cancer. Who knows what's next.

Yes you're right that new treatments are coming out all the time. I'm supposed to be on one of those now but it's just caused me nasty side effects. I have an appointment booked today for the 14th April which will be to make sure I'm recovered from current issues, then if all is well, to put me back of this fairly new medication. I don't think they'll do immunotherapy again unless there's a different type they can give me but this new tablet will hopefully give me more hope.

Now that I'm able to get out by myself, I'm going to look again at any groups I could go to for people like me. I really need that if I can overcome my anxiety. 

Take care and thanks for your helpful posts. :)

Geoff.

....I understand all you say, our anxieties are very personal and I like u don't get on with counselling.

If u need a rant at anytime just shout out.

Am usually around..lol.hugs

Hi SiFitz, thanks for writing. I can't actually see your reply here any more for some reason but I've already written a response so I'll send it anyway.

Hi Geoff,

it can be a minefield with the terminology and their impacts. I asked my nurse  and she gave me a description of incurable- meaning that it can’t be cured (obvious) but you are expected to still be around for more than 12 months. She told me that stage 4 means that the original cancer has spread to other areas/organs and then there is terminal which is a life expectancy of less than 12 months.  The reason for the 12 month seems to be driven by a few things. Things like benefits can kick in, also some insurance companies will pay out if you’re declared terminal. Also, treatment options may change too. 

That was a quick chat with a nurse but seems to make sense. See if you can have a similar conversation with your nurse or possibly better would be talk to MacMillan about the definitions?

re Hospices, I don’t think that I will be staying in there when the time comes as I’d like to be at home but I may get to the point that I want to go to the groups that they host. You don’t have to be terminal to attend these and it may help. Time will tell. 

Take care and all the best!

Thanks for that info. Yes I do need to talk to my nurse and others about options of help. I wish I found these things easier. I keep turning down offers of help because I feel I won't get on with whatever they offer. 

From what you were told I guess I must be stage 4. I did read that somewhere to that it's stage 4 if it's spread, which mine has. It's something I'm struggling to accept mentally because of how much more serious it sounds. 

I have an IV drip for a few hours on Friday and there's a Macmillan office there, so I'll try and get the nerve to ask them questions about any groups they're aware of.

Just a quick thought before I go to bed

MAGGIES...Google maggies, see if there is one in your area. It is for cancer patients and their families.

Maggies is a beautiful place. It is a charity. The one near me is so beautiful and calm, there are trained people there if u want to talk about anything

If u just want to sit and have a free cuppa and biscuit just help yourself

Ours is open plan with little area where families can sit, made private by lush greenery or cosy places if u want to be alone

They have an amazing garden if u want to sit in the sunshine

Nothing is expected of u at all

You can sit alone and enjoy the serenity

Or take a friend or member of family 

It is not a hospice, it's just a retreat to pop in and have a cuppa.

Many people like yourself with social anxiety have made friends there over time

There is NO pressure at all

Hope this helps

Hugs

Thanks so much for that tip. I had heard of Maggie's before and it does sound just what I'm looking for. Doing a location search though, the closest to me would take most a day to get to and home from. If I can get myself properly better and able to get out all day without constant worries of seizures or toilet issues, then it might be a possibility. The Southampton one is the only vaguely viable option.

I'll look again at that and see exactly where it's located and whether I'd be able to get there or not. 

I'll be at Worthing tomorrow for treatment where there's a new Macmillan centre, but it's not clear at all what they offer. All I've seen there are very kind volunteers offering people drinks and sandwiches. I'll maybe speak to them tomorrow and see if there's more on offer locally, as that's quite an easy location for me to reach. 

Thanks again.