No follow on check ups - feeling vunerable

Hi angelfish,

I was grade 1 stage 1a and have wobbles all the time, check ups seem to vary by area and individual, the open referral system that you are on seems to be used in a few areas and its purpose is to make post treatment easier so that we don't get anxious around check up times and so that we don't hold off reporting symptoms until our check ups. I have had six monthly check ups and was supposed to have these for two years and then go onto the open referral system, at my last check up I asked if they could see me in a year and they agreed, I feel better knowing someone will have a look around. 

Ive phoned out with my appointment times too as I had a few bits of spotting and other things happening and my CNS lets me know whether I need an appointment or asks me to visit my gp, etc. 

The point of my ramblings is that you could ask for a check up appointment and explain your worries, they might fit you in. Alternatively you can keep an eye out for symptoms and report them if you have any. Check ups do make me really anxious, I seem to be on the count down to them for months and they sit at the back of my mind all the time.

I don't think that there is any right or wrong, we can only do what we feel is best and talking about our fears with our teams and here really helps.

Lots of love

xxx

Hello  you're not wingeing at all. You have a genuine concern and it's good that you're able to voice your fears here. I was a higher stage and grade and I can thoroughly understand your worries. I think it's natural to have some "what if" moments. Do ring your CNS for a chat about it. She may be able to reassure you or she may offer you a check up. I do have regular checks because of my diagnosis and they do come with some anxiety attached, which I have learned to recognise - it's no coincidence that I knit more in the run up to a check up.! I've was promoted to checkups every 6 months fo 3 years in June which feels ok but I suspect there'll always be some what ifs lurking in the background. No easy answers I'm afraid - but I can send you a gentle hug and say I hope this wobble soon passes. x

Hi Anglefish,

I understand where you are coming from. I am 2 years post hysterectomy, and have gone one year with no check ups. I am on a self referral system, and thought I was told I would get a yearly phone call to check on me. So far, I have had nothing!

I am not complaining as I know how busy they are. My husband and I once worked out how many people were at his check up clinic on one morning at one hospital in one county. Multiply that by all the hospitals in Britain for each day of the week, and the numbers are astronomical. I can see that if you don't need the checks,  they can fit in more people who do!! 

My husband has gone 13 years with no more signs of his cancer returning, so I'm sure I can do that, too!!! It doesn't stop me from having an occasional wobble, though!  xxxxx

Hi Angelfish, you're not whinging.  I think there is always some anxiety for us whether we have regular checks or not.  I have been on three monthly checks and have just been promoted to four monthly ones, having now completed one year since the end of my treatment for womb cancer.  Although I was low grade and early stage it seems to be the protocol here that everyone is seen on this gradually decreasing frequency.  And the appointments come with a fair degree of anxiety and overshadow me more and more as the day approaches.  Unfortunately the clinic is a very busy one and it's quite normal to have to wait an hour or more to see the great man (or one of his deputies as I have now been relegated, which seems like a good thing in itself).  But the sense of relief when I get that okay again is worth it all!    You might want to ask for an occasional appointment if you are really anxious.  I think the medics are trying to strike a balance between making sure they catch any signs of recurrence early and trying to avoid causing us patients unnecessary anxiety.  I talked to my lovely CNS about this and learned that there really is a recognition of the anxiety that follow ups cause and there is a move to changing to phone appointments with the nurse instead of attendance at the clinic.   I hope you can get some peace of mind about this but this is a great place to talk over these niggles. Xxx

Thanks for all your responses. It was explained to me why they tend to use the self referral route and I have an open appointent for 5 years. I have rung my CNS a couple of times with issues over the last 18 months which she has discussed with me and organised scans or suggested visiting my GP etc so I know she is always on the end of the phone if necessary. I also realise that resources should be directed at those that need them most ie patients whose cancer was a higher grade than mine. I guess whichever way we look at it we are either anxious because we have to have regular check ups or because we don't have the reassurance from check ups that everything is still ok. 

This is my first post.

At this moment in time; I feel lost, and I'm not quite sure what to do with myself? When I had my treatment, I felt that I was in a very slick production line.

Everything went very smoothly and strange as it seems it was a routine that I was getting used to, and then it suddenly stopped. I know it was going to finish on a specific date and I was very relieved and exhausted at the same time.

My first week home; and I did nothing but sleep which I badly needed. By the second week, I still slept a lot, but not for so long. And I started to relax gradually. I then became aware that lovely friends had stopped asking me how I was? They were not unkind, far from it, but because I was not going to Hospital daily There was an assumption that as I was home; that everything would be back to normal.

I then started to panic "what if my cancer came back? " The next few months were like a sea-saw up one minute, down the next day. I slowly began to unwind, but I wanted to see and talk to my Cancer Nurse desperately. Then I made excuses to myself that I could not be bothered.

I've gradually learnt to accept "What will be will be, and live for today." And that one breast is smaller than the other. It's no big deal, a small price to pay.

There was one person to who I did not have to be polite too. Her Cancer had come back. We supported one and another, just by simple little things; private messages on her Facebook page. We promised that when both our treatments were over, we would go out to have *High Tea.* in a fancy place such as The Ritz or to The Hilton to celebrate.    Sadly, we won't be going to Tea. It has hit me hard.

I've started to sleep a lot lately. I don't know if it is stress or I'm just fatigued.

Hi Angel, when you were put on to the 5 year open path way we're you given any idea of why to look for that may be of concern?

I can understand your worries as my cancer was picked up by a smear and not really by any signs or symptoms. 

Ring your cns and see us there is any advice she can give you. How supportive is your GP?

I would hope the worries decrease over time for you. Also don't worry about comparing yourself to others, ultimately there is only one you so of course you want to make sure your health is good. 

Hello Claracat.

Thank you so much for getting back to me. I really appreciate it. Last night to my surprise; I had a bit of a cry. I don't know who I was crying for? I don't know whether it was for my friend who I lost or me? Or perhaps for both of us?

I finished my radiotherapy a year ago. And I have been feeling *lost* ever since. Generally, if something terrible had happened to me; I would brush myself down. And then I would start all over again. My philosophy is "it's happened, there is nothing that I can do about it. Time to move on." This time, I can't seem to get my act together.

I've only seen my GP once since I've finished having my treatment. We briefly touched on the subject of my Cancer. We then talked about my other aches and pains. He is an excellent Dr but, like all Gp's he is rushed off his feet, I was lucky that I got  20 mins. Getting through to his surgery by phone is a nightmare. I have to email to get a response.

At this moment, it seems that the Cancer Nurse at Bart's is my best bet. I hate talking over the phone, yet this appears to be the preferred method of communication. When I email her, I will try for a face-to-face meeting.

I think that I need to take some very deep breaths, and stand back to get my thoughts together. Today, I have not done any housework, normally I would panic, and be angry with myself today I feel like "so what, it's not the end of the world."

Best wishes.x.

Hello Welcome to the group. I'm very sorry to read about your friend. It's obviously hit you very hard. Gentle hug coming your way. I think the feelings you express are quite common. You are likely suffering the effects of stress and fatigue, as you say, and when this happens it often magnifies other negative feelings. Many of us here can understand how you feel, and we can say that these things do get easier with time. If the feelings persist longer than a few weeks or start to take over your thoughts, it might be worth seeking some counselling - your CNS or GP can arrange this. It can help to talk to people who aren't emotionally involved - which is one reason people find themselves here. The fear of recurrence is very real for many of us. Most if the time I can keep it at bay, but it lurks unbidden and unwelcome in the back of my mind waiting to pounce and did when recently our church fellowship lost two longstanding and much loved members to cancer. Counselling, meditation, prayer and so on can all be very helpful ways of processing and dealing with these thoughts and fears. I hope that with time these negative feelings will pass and that you'll feel more confident about things. Take care x

Dear Fairycake.

I would like to thank you so much for your very kind and thoughtful letter.

It is a great relief to know, that I'm not the only one; who has these fears and concerns it feels as if a great weight has been lifted. Today has been much better for me. I've slept quite well for me. And I feel a lot calmer and relaxed.

Today, I saw a Christmas present that I would like to buy for my Sisters Mum-in-law. I put it on my wishlist. A few weeks ago; I just wanted to spend Christmas day on my own. The thought of being with people has not filled me with joy. I would rather be on my own. But, my sister is insistent that I spend it with her and her family.

I've been thinking a lot abought seeing a Councillor. I'm not dismissing the thought but, in the past, I've had CBT councilling which is all the rage, but I never got on with it. And this is at the back of my mind if I'm only offered CBT and nothing else.

I realise the importance of small positive steps, which is the best course of action for me. I've learnt in the past, the hard way; that I have to be very good at walking before I start running.

I know that there is no magic wand just a lot of hard work on my part.

Thank you for being around.

Best wishes. P.C.