Fredrico, Onlymee, buttercup01
I've just been catching up on the recent posts and realised that we have recently had an influx of new members and wanted to welcome you all to the group. It is always shocking to get a cancer diagnosis but I realise that it must be so much more difficult trying to make sense of it when the whole world is also turned upside down by the covid 19 pandemic. It has changed how we attend appointments, where we have to go and what can be done.
The forum recently underwent a significant upgrade which in the manner of these things was very chaotic. As a result the numbers of people posting regularly has dropped and is just starting to increase again. I would encourage you all to join in the conversations as if a few people are chatting it encourages others to join in.
If you want to see if a particular topic has been discussed before you can put the topic in the search bar at the top of the page, it is useful for looking up medications, treatments, side effects and the best way of dealing with them.
If someone has put a post that you are interested in then you can reply to that post. It can be useful to look at the persons profile before you do so as they can be very informative. If you click on the members username it will take to directly to their profile.
For anyone that has not yet completed their profile if you click on your username at the top right of the page then you will be taken to your profile page. There is an "edit profile" button which you click on and allows you to add or remove information from your profile. You can do this as often as you like. People add different amounts of information but it can prevent you being asked the same questions again and again by others. If you click on a few usernames you will get an idea of what people put in them. Mine is one of the lengthy ones although it currently needs updating.
One important thing that I would say is that you can ask the medical professionals anything you want and it is important to do so. Your GP coordinates your care and if you cannot get the answers then they might be able to do so. Try to get direct numbers or e mails for your team. If you are expecting to hear something from them and don't then chase it up. Hospital admin is very slow and things do get lost. A couple of you were saying that you cannot get your operations at the moment due to covid. I would be asking them why not? can they do it anywhere else? and making sure your MP is aware that you are being dealt with like this. Kidney cancer is generally very slow growing and tumours under about 7cm are classed as small. As such it is not uncommon for a watch and wait regime to be implemented but I would want to be sure that this is a medical decision and not a logistical one.
I saw that some people were worried about a recurrence and were trying to google for information. Google tends to be very out of date for kidney cancer as the treatments have developed so quickly over recent years that the statistics are all out of date. I find that the Kidney Cancer UK website is very good (better than Macmillan) for factual detail about kidney cancer, Cancer research UK is another good resource and you can also get information about trials from them. When I was diagnosed that my cancer had advanced to stage 4 I made the mistake of googling it and scared the crap out of myself. Six years later I am still here and still taking my first line treatment. Since then more treatments have been developed so I am not terminal but incurable and living with cancer. That might change when I run out of treatment options but equally they might cure it during that time, who knows?
I'm afraid I didn't have time to respond to everyone individually but hope that this has reassured you a bit and hopefully answered some of your concerns. I will try to keep up with the post a bit better in the future.
Keep on making plans for the future as it gives you something to look forward to and something to enjoy when you get to it. I know it is difficult during lock down but I still intend to go abroad on holidays again, plan birthday parties and Christmas do's. I buy new clothes and start new hobbies and probably do more than i did when I was first diagnosed. The Macmillan helpline is great for emotional support but can also advise you about things like employment rights, life insurance, benefits, blue badge schemes, early retirement on medical grounds and a host of other things that I had not thought of.
I look forward to talking to often in the years to come.
All the best,
Gragon x
