Emotions

So sorry to meet you here. I had a look at your profile and you've been through such a lot already. The uncertainty around your x ray and CT scan must be very difficult to cope with especially in these frightening times. No wonder you're feeling emotional.

I would look into retirement on health grounds regardless of anything else. Once you've started thinking about it unless your job is really important to you it does make sense.

The MacMillan helpline can give you advice about benefits etc, I'm sure someone here will be able to provide a link for you. 

I'm sorry to hear about your daughter's wedding. My niece's wedding was postponed too, so we've both got something to aim for next year.

For now it's about finding ways to manage the anxiety until you know what you're dealing with. That's harder to do when you're screening, can you find some distractions? Even if the results are not what you hope for there's every possibility that your Oncologist will have a plan for you.

Nothing to apologise for, you've come to the right place to share these perfectly understandable feelings. Sending love and hugs to you, hang in there.

xx

Hi Ali, 

May I call you Ali? Have i surmised correctly from your user name that you are an Ali? If not, then AliN is fine. 

I’ve just had a look at your profile too and I see we are womb mates. I’m living with metastatic endometrial cancer and although I think the primary site barely matters in this community of incurables, it does mean we both know of some of the indignities of our particular cancer corner and can pass over them in mutual understanding. 

It does sound as though you have a particular period of confusion and frustration on your doorstep. For what it’s worth, I’ve been in and out of three different hospitals over the last few weeks. In my experience they are now well organised into “hot” and “cold” areas for corona virus. There’s been a marked drop off in people attending for all kinds of appointments and there is spare capacity in the scanning department. A week or so ago I was with my consultant who was able to organise an MRI for me on the spot. The longest weight was 10 minutes for the porter to get a wheelchair. 

Based purely on my experience, I would say if the CT scan on May 11 will give your oncologist information that allows him to make informed treatment decisions, then take the precautions you need to take around making the travel safe and go to the hospital and have the CT scan.

I think the next item is around the anxiety. Whether you are anxious about the scan or not anxious about the scan makes not one jot of difference to the result of the scan. So in my mind, the task at hand is to tackle the anxiety. I know this is really easy to say and incredibly hard to do. I find the approach of getting up in the morning and being determined to find something nice on that day is really helpful. It sounds almost to trite to work but, set my horizons right, aha I usually manage it. 

At the other end of the day I have a “three good things” kit by my bed.  It’s a little notebook, one of the fancy ones they sell in gift shops, and a nice pen. At the end of the day, especially if it’s been a bad one, I’ll pick up my book and I write down three good things from that day. It might be a simple as a cup of tea in the sunshine or a phone call from a friend. The simple act of considering the three good things and writing them down and doing this over a sustained period of time really does make a difference to my frame of mind. The longer I do it, the more I know the times that I need to do it.

I am so sad you had to postpone your daughter’s s wedding. I know several people in the same situation. It’s one of the hardest things I think people are facing. Again, from my personal experience, I recently had a conversation with my oncologist about a milestone I’ve been trying to reach. She said she hoped she could get me there, but that the most important thing was having the milestone. People with something to look forward to tend to do better was what she said. I found this very helpful. I hope you do too.

I’m with on the work thing. Just do it. 

You’ve definitely come to the right place to let off steam and get things off your chest. We’ve all been there. It’s awful. It does pass.

I hope I’ve been able to help just a little bit and I really hope you carry on coming back and let us know how you get on.

xx

Hi ,

Firstly, there is never a need to apologise on here for going on as we have all had to "unpack it all" sometimes in order to try and understand what is going on.  It helps to clear some of the confusion when it is written down in front of you and hopefully you get some helpful comments and support back.

It always feels worst when we don't now what is going on and what the options are.  Uncertainty is a horrible feeling to live with and both cancer and the current coronavirus situation add huge amounts of uncertainty.

I took early medical retirement and found that I was entitled to significantly more when retiring on ill health than if I simply took early retirement.  If accepted you are paid as if you worked to your state retirement age (in my case 67) rather than my actual age of retirement (about 56).  I was therefore credited with an extra 9 years of pension payments both for my monthly pay and my lump sum.

I would suggest that you ring the Macmillan helpline on 0808 808 00 00 when they open (8am to 8pm daily) and ask to speak to a financial advisor.  When I did this they arranged for a convenient time for me to talk to them before they rang back and took me through everything step by step explaining my options and what I needed to do.  They can advise you of any entitlement to benefits and often help you with the claim.  They are very supportive and will go at your pace to make sure that you understand what they are saying.  They were extremely thorough with me and were asking me about areas of my finances that I had not even considered.

After going through this process I found that I was quite clear what I wanted to do and it removed a lot of the uncertainty and made my life significantly more relaxed as it removed one major area of worry.

I hope that this has been helpful and wish you all the best,

love and hugs,

Gragon x

Hi danoli ,

Your words are much apprecciated and thought provoking .I try to tell myself I just have to get on and it is what it is but at times it just overwhelmes me.

You have certainly been on a journey yourself and I commend your positive attutude .Like you my Consultant and other staff are brilliant but  my Consultant often mentions about quality of life compared to quantity ,which I  find hard to get my head around .I try to stay upbeat but it is hard at times .

Thank you for your advice regarding work I think I am just scared to take that step as probably it acknowledges what I am facing .You are right I just need to do it .My husband has just taken retirement at age 55 from NHS after 38 years as he wanted to spend more time at home and do things together .

I do appreciate your support and advice it is thought provoking and helpful.

   Thank you 

Hi Gragon,

Thank you for your support it is much appreciated .I have been pondering health retirement as I think I wanted to keep going but lately I am finding it much harder .I get so exhausted and by about 2pm I just want to lay down for a sleep .I don't sleep great at night and often end up sitting up til early hours .Somedays my breathing is worse than others and I get frustrated as I cannot do things I used to do.Your advice about benefits is much appreciated I think I will give Mcmillan a ring for more information and advice .

I think having this opportunty to share thoughts and feelings is helpful so thank you again for you words of advice .

Virtual hugs .

AliN

Hi

I’m so glad I’m able to help a little bit. Just one thing to add. I know how hard this is and I really don’t want you to beat yourself up if you find it hard too. Just be kind to yourself. We all have bad days and that’s okay.

xx