I'm a 69 year old man and have been living with renal cancer for 7 1/2 years now, in 2013 I had a kidney removed but my remaining kidney was not very good and left me with stage 4 chronic kidney failure. However my one kidney has proved remarkably consistent over the years since and has kept me away from dialysis. About 2 years ago the cancer came back in the colon and another operation removed the tumour and a section of colon. In March I had a follow up scan and have just been told that it has "spread to other places" and that an operation would be pointless so I am to be transferred to an Oncologist. In the past few years I convinced myself that such a diagnosis was half expected and that I would be able to handle it.
Guess what? - I am really struggling.
My appointment isn't till 5th May and the days pass so slowly at the moment it seems a year away. A great guy at Macmillans (Paul) suggested I try this group for support, I don't really know what to expect, perhaps just misery loves company but looking over the posts certainly help me appreciate what I was not alone (blindingly obvious I know). It's just not knowing where it has moved to and whether chemo will do anything worth while. A good night's sleep would help too!
Welcome to the group. So sorry that you have had this news but there are enough of us in the group to demonstrate that there is still plenty for you to do.
If you think back to when you got your initial diagnosis the most difficult part is waiting to find out what the plan is, at that time an operation. Once you have talked to the oncologist and know what will be happening next you will be able to focus on that. Until then you are kind of left up in the air not knowing what might happen.
From what you have said and the fact that you are in this group I am presuming that the colon cancer and the new growths are in deed secondary kidney cancers and not new primary cancer. What treatment you have will vary according to which type of kidney cancer you have. You should have been told about six weeks after your initial operation what type of cancer it was. I have the most common type Renal Clear Cell carcinoma, often referred to as RCC. Once it has spread it is generally regarded as incurable but it is normally treatable. There are lots of developments with this type of cancer over the past ten years giving a number of treatment options in targeted biological therapies and immunotherapies and if you have RCC you are likely to be offered one of these. I have been on a biological therapy now for 5 years and am nearly as good as when I started on it. Most of my recent problems are not related to the cancer.
Inevitably the oncologist will have to take into account your kidney failure when deciding upon treatment.
I don't know what I can advise about your sleep. Have you considered talking to your GP and asking for some sleeping pills to help you in the short term. I have sleep apnoea so cannot take them myself but I know a lot of others have used them on occasion, not necessarily for every night but just when they feel a lack of sleep is becoming problematic.
I would also suggest that you start writing down any questions that you might have for your oncologist in preparation for your meeting. It not only ensures you get the information you want when you see the oncologist but I often find that if I write down my questions they do not run through my mind as much on a night time as I know that I won't forget them now. Don't forget to take a pen to your meeting or you won't be able to write down the answers. One of the questions I would recommend you ask is for the contact details of someone on the team who will be able to answer any questions or concerns that you might have. I often use e mail as that way they can answer me when they have the time and I am not dragging them away from other duties in order to get them to answer the phone.
I know that others will be along soon with their experiences but feel free to come back with any further questions you might have or even just for a chat.
Thanks very much for your reply and especially the advice I will take them on board fully. I have never been told what type of cancer I have but it is No 1 on my new question list for the Oncologist!
Your response is well thought out and deals extremely well with my concerns and I thank you very much for taking the time to get in touch with me. It is strangely reassuring that other people like you are out there,
The meeting do not go well, it has spread from the renal cavity to nodules on lung, liver and intestines. Not curable but I will be starting on a chemo drug very soon, 3 weeks on, 1 week off. The Doctor was very good and estimated Xmas if no treatment or a year or perhaps better if I take the chemo. It may save me having the wife give me a corona cut! A helpful contact on this group had recommended I take a list of questions and this was great advice as my wife made notes against them all for consideration after the meeting. (Without it I'm sure that a lot of it would have gone through my head and out of my brain)
Yesterday was a bad day, I had thought that having lived with RCC for 7 1/2 years I would be better able to handle it. Nope! For the last 2 1/2 years since my last op I have lived from birthdays, anniversary, Xmas and other significant dates now it will have to be day to day. Depression may become an issue but my wife will be there to help with my 'Black Dog Days'.
Not looking forward to the future but trying to keep as positive as possible
I just read your response and am sorry that the news was not better. Can you remember what medication the oncologist said you would be on? I'm sure that someone on the site will be able to share their experiences and tips.
Once you get the incurable tag it is important that you keep on doing what you are doing and keep looking forward to your next treat or nice occasion. I know that is a bit more difficult in lockdown but you can still look at doing nice things and start to plan them even if you can't actually do them yet?
I'm not sure what the situation was before for you but it is likely that your treatment will put you into the extremely vulnerable group. If you are you can register on the Gov.uk site and hopefully get assistance in shopping and medication deliveries.
You might also want to have a look at the "Living with incurable cancer" group on the site. I am on there as are a number of others from this group. It is a bit irreverent at times but everyone there is in a similar position to you and appreciates what it can be like.
Regarding you wife cutting your hair? I started going bald at 16 and in my early 20s I got some electric trimmers and have done my own hair ever since. I'm now 58 and I think I'm on my third set of trimmers and have no intention of going back to the barbers, go for I say.
I'm so sorry that's rubbish news for you. What drug have you been offered out of interest?
It sounds as though you're familiar with depression, but do try to look after your mental health along side your physical. Having been through depression on a few occasions, I know that being mentally well is almost the key to managing physically with what comes my way now. Like you my husband knows to watch out for this, just to be safe.
I can't imagine anyone being ready to handle your news. Every new turn is a process to get through.
I hope you can start your treatment very soon and that it's good for you.
I am due to start on Tivozanib (Foyivda) soon, just waiting to hear from the oncologist support team to go and fetch them.
The next significant date is my 70th birthday in June. You are quite right as I have been put into the extremely vulnerable group and have only been out in the car with my wife to travel to a local shop 2 or 3 times in the last 8 weeks. It's actually a little easier as my Mother in Law had just moved into a nursing home immediately prior to the lockdown so that care support is now massively reduced - it worked out just right.
I think I will have a look at the incurable group as the 'irreverent' tag seems very suited to my sense of humour, (Which perhaps needs a bit of a kick start!)
I've got all my hair (at the moment anyway), my youngest son has a growing thinning spot and tells me he is looking forward to be able to give me a bit of stick back.
I'm sleeping better now but have to be honest keeping depression at bay is going to be a task but Macmillans support mechanisms are very good. A great wife and family help even more though.
I appreciate everything you and other respondents have done in contacting me, it is surprisingly reassuring that strangers are so kind,
From your profile it rings some bells with me, I have very good relationship with the surgeon who performed both my cancer ops (and one other) told me of some patients have had surgery 5 or 6 times over many years, one of them being late 50's and just rode his bike the length of the country!! Bloody silly idea!
all the best for the future and thanks again to you and the others.
As far as I am aware Tivo is also a Tyrosine Kynase Inhibitor similar to the Pazopanib that I and several others on this site are already taking. It is a newer version which they develop to try and reduce the side effects without reducing the efficacy. If you do have any issues with side effects then please ask on the site as the people here tend to be much more aware of the best ways to manage these side effects in practical terms rather than the oncologists who rely on our feedback to advise others anyway.
I am pleased to hear that you have the space to cope with your Mother in Law having recently moved to a nursing home. I am in the opposite position as my MIL was visiting at the time the lock down came into being. She was due to stay about 5 or 6 weeks but now we are not sure when she will get back. She had been living in Crete but following the death of her husband she was looking to return to live in the UK. There were some problems in sorting out her house in Greece but that has now been resolved but of course no-one is looking to buy a house at the moment either here or in Crete. She was staying with her other daughter in North Somerset as that is where she hopes to settle but visited us to give them a bit of a break.
Unfortunately there are three of us here already, me, my wife and our 15 year old son. Although it is ostensibly a three bed house the third room is a box room and a built in cupboard means that it is no longer possible to use it as a bedroom. This leaves four of us in a two bed house. My wife is also working from home so she occupies our bedroom through the day and our son is doing his home schooling in the dining room leaving not a lot of space. Thank goodness the weather has improved and I can get out into the garden. Hopefully the travel restrictions will be lifted soon and she can move back to North Somerset where they have more room.
I think that depression is quite difficult when you are diagnosed with cancer as sometimes you can be very positive and then something happens and you suddenly end up thinking what's the point of it all and thinking about all the things that you are going to lose or not able to do anymore. It is especially difficult with the lock down as many of us use activities and meeting friends and family members to give us something to look forward to. I had three trips away planned for this summer and as things stand I might just get one of them. I can book something else in the future but it is not as good a motivation until it is booked and we don't know when that might be. Similarly with family and friends, I know that we can talk on the phone and even use things like facetime but it's still not quite as good as actually meeting. I am generally OK but when I do struggle I try to keep myself busy to avoid me having the time to sit and brood on my situation which tends to make it worse. The garden is good and I also do most of the cooking as my wife is working. I also come on this site one or two times each day to see how everyone is getting on.
I think you should possibly experiment with your hair as no-one is going to see it at the moment and it might help stave off the depression. I believe that at one point some ancient Britons used to bleach their hair with lime and then style it straight out at right angles to the scull to create an effect like a mane, especially effective with the sun behind you. You could go for the Jonny Depp Pirates of the Caribbean look with a couple of small plaits at the front and long at the back. How about going for a 50's look and seeing how big a quiff you can style into your hair. I speak as someone who has sported a monastic style tonsure with hair around the sides and none on top since my early 20's. If you do go for this option please post some photo's!
Wishing you all the best and I hope that your treatment works well for you.
