Feeling like a fraud

Hi wickedwoo,

I'm sorry you are having a bad experience with aftercare, or lack of. I have found this to some extent, and I know others have. I have had worries and concerns and also I ask many, many questions at every stage - and I get the feeling that some medics cannot cope with my questions and that frustrates me - not their fault, as I know I am very OCD over asking every tiniest detail to be explained to me....but I've been like that all my life and it's hard to be any different. 

I assume by Macmillan nurses, you mean the in-person ones?? On here, there is a section called "ask a Macmillan nurse" (think it's called that - have a surf around and you should find it) and as far as I've seen, the nurses are very prompt at responding, and if they don't have the relevant knowledge, they are adept at posting links to sites or forums that will give you the answers you need.

There is so much support also in these forums from those who have gone/are going through cancers. 

I found aftercare after my hysterectomy, was hard to access. Likewise my most recent experience of kidney cancer. I feel like I am having to push hard for answers. I appreciate they are all very busy and that I am one of very many. However, knowing that, doesn't necessarily make me any less anxious of course, so I totally get what you are meaning. It does seem to be quite a common thing, this lack of aftercare. It's not an actual lack of it, but I think when we are worried and scared, we need more reassurance than they are able to give us, so it feels like we are being abandoned. I am learning that you really do need to push for action once the surgery bit is over, and especially if you are not deemed "priority".

I had my 6-week follow-up cancelled. I was told why, and that it would be at least "a couple of weeks" but when it got to seven weeks (this week) and still not a sign of any follow-up being booked for me, I took action and rang the consultant's secretary. When she rang me back, she offered me an appointment next Weds. If I hadn't rung, I have the impression that it would have dragged on longer still. So my 6-week is an 8-week and I haven't even been told what is next - further treatment, etc?? Regular scans? I have no idea!! Nobody has told me anything so far.

Why I mention priority, is because I did have a letter at 10 days from my consultant, giving me the histology result and that he had got it all out with a good margin and it was early stage low grade and the implication was that no further treatment would be needed - but other than that, I am still in the dark as to what follow-up I am likely to have. My follow-ups from my hysterectomy (same thing: early stage low grade) were supposed to be every three months for a year and then every six months for two years, I think it was. They didn't stick to this schedule and by 16 months after surgery I was on a six-monthly by telephone follow up! and even that, was late by two months and wouldn't have happened if I hadn't rung them and pointed out I wouldn't be around for a phone call for a bit as my kidney surgery was going ahead. They said they "had been very busy" which is why they hadn't rung me at the right time!!  So after the phone call in March, I am now sent on my way with no further planned follow-ups at all - 23 months after my surgery. The ball is in my court to report if I spot any bleeding. So yes, I too feel abandoned now!! 

Use these forums as much as you need to. You should find them very helpful and supportive. I have been to my GP four times in three weeks for my latest surgical incisions, one of which is still not fully healing. I actually found them easier to access than the nurses supposed to be following up my kidney cancer. If that had failed, I would have used the pharmacist. 

Do you have a cancer charity attached to your area/hospital, other than Macmillan? We have one called FORCE. It has a little building on the far side of the hospital car park. They have a library, leaflets, free tea and coffee and biscuits, and a little garden even, and volunteers who are there to listen, to talk, to point you to where to get advice or help. They even organise things like craft groups, subsidised swimming at a local pool, and other activity or hobby groups. Whilst they are volunteers and not medics, if you have anything like that - an independent cancer charity local to you - that could be invaluable to you.

Hi Wickedwoo

I am sorry to hear that you feel that you have been left to your own devices after surgery and that you are not getting the answers and clarification you need from your nurses. 

I remember the feeling that everything happens so quickly. It can certainly feel a bit like a whirlwind. 

Is this the cancer nurse specialists at your hospital? 

I wonder if it would be worth emailing once more and ask if you can be seen or have a telephone appointment to address your worries. Maybe prepare by writing a list of questions. You could perhaps email the list to them- but still ask for an appointment to go through them at a convenient time. 

With the free floating cells found in the peritoneal wash it seems that they are not sure if they are significant or not. This is something I would ask for clarification about. It may well be that you will be having regular check ups and/or scans as part of your follow up? I had appointments every 12 weeks for 2 years- but it can vary a lot between hospitals and also with stage and grade. 

Another thing worth considering is to make an appointment with your GP or practice nurse. My GP was sent all results and details of all appointments so they would be in a position to be able to interpret them for you and if necessary chase up the hospital for clarification. 

I can understand that it would affect your mental health. Its tough to go through cancer even with the most supportive team. It may be worth thinking about some counselling at some point. 

I recently did the Hope course and found it helpful. Online HOPE programme for your patients | Macmillan Cancer Support

Many people find Macmillan buddies helpful so I will pop a link for you.

Macmillan Buddies | Macmillan Cancer Support

We do also have the Support Line that is available everyday from 8am-8pm which can offer you support. 

If you prefer to post questions rather than talk to someone, I will post a link to the nurses. They will normally get back to you within 3 working days.

(+) Ask a Nurse | Get answers about cancer | Macmillan Online Community

Hope this helps a bit. Hopefully things will feel a bit better once you are able to talk to someone and get answers to your questions. 

Jane