Struggling a lot today & had a tough day. I am experiencing huge waiting times with my hospital. Is this the same for anyone else?
I completed all ‘active treatment’ in November & am genuinely traumatised by my experience. (No one originally thought it was cancer.)
I think i have lymphedema (hospital says otherwise) but am on a waiting list for 12.5 weeks. 6 months post smx i still haven’t had a prosthetic appointment…. Is this normal? I have a new lump underneath my collarbone and am terrified and have the same feeling i did before.
Went to the gp. Was the same one that also was certain it wasn’t cancer and sent me to day surgery. Had huge panic attack in reception as she was running 45mins late (as before too) and same the day of the diagnosis at the hospital. It set me off and have been in an awful state since..
I can’t imagine what you’re going through as I’ve lost the plot today as had date through for radiotherapy consultation in two months time when consultants told me that it would be two weeks. I tell myself they’re stretched but I find the waiting unbearable and just want to move forward and get through this.
Sounds like you’ve lost confidence in your go so try and see another one in future if you can. The system is broken. Can you try the Bcn and see if they can advise or help you find out what the current waits are because they seem to be way off what they’re supposed to be at the moment. Bcn may be able to help you about your lump too. You could try contacting the nurses on the forum see if they can direct you.
I wish you well and hope that you get some answers as sounds like you’re feeling unsupported at the moment. I’m sure you’re in the system but it’s just so slow. Make some calls or get someone else to do it for you if you don’t fell upto it.
@sbee . Hi there. I can imagine you are very anxious. Yes, I posted about huge waiting times in my area Kent and Medway Trust. I’ve put a complaint in to PALS. Not because it’s going to change the outcome, but because I just couldn’t let it go. I had my mammogram on 12th Nov. I had to chase 7 weeks later for a result. Turns out it was cancer and no one had had me in from what was plain to see on the scan. So I’m starting treatment today, 24th Feb. Over 3 months since I should have been diagnosed . I agree with the other person who commented. The system is broken. I really hope you get a response soon. Try calling your McMillan nurse or getting your GP to chase things. Email your oncologist. Ring or email everyone and anyone involved. Lots of love
@sbee . I re read your post, and feel for you so much. Could you go back to your gp, insist on seeing another doctor and say you want to go on the two week wait pathway and insist. I can’t see how they can refuse? Take someone with you who can calmly advocate for you and explain this needs looking at.
It is so exhausting especially when tackling it alone - I try to push, but my emotions often get the best of me & at 38 I never expected this bus to hit me so am still shell shocked & seriously traumatised.
I have considered going private for the lymphedema… but it is spenny. I feel totally neglected. X
Does anyone have any tips for coping with going to the hospital when traumatised? I need to go tomorrow & can already feel the anxiety brewing. Not sure how to get through the night tbh. X
Hi @sbee . I’m awake, 3am steroid jingles! I’m going to make a cup of tea I think. I’ve just read your post, and am hoping you are asleep. I don’t have any real advice. Your feelings are understandably very high. I think all you can do is know in your heart you HAVE to do this, and look forward to going home afterwards. Picture going home in your head, maybe have a little treat waiting for you at home for afterwards, plan what you are going to watch on TV later? That sort of thing. Things to make you content and comfy. You may need to see the dreaded GP about some rescue medication for these sorts of situations. There’s also rescue remedy from the health shop.. is there a trusted friend or relative who can go with you? I am so sorry if this all sounds feeble. I just hope and pray it goes well. If you can speak to your BC nurse too. Please let me know how you get on. xx
All my friends have young families (as one pal said to me ‘not many people get cancer at 38’) so they just don’t have the time & are all dotted over the country. I know i am meant to be on a hoard of drugs and i am not & tbh I have days where I just wish this thing would take me. I just wish it would do so quickly. X
You have finished active treatment @sbee? Surgery, chemotherapy, radio? What makes you think anything is going to take you now?
So this may or may not help but I will share anyway as it is really helping me.
I am seeing a therapist at the moment (it has been a life saver) and we have been working on automatic thoughts, the negative ones. When I have specific thoughts I try to write it out like this…
First the Situation (where I was when the thought happened, what I was doing, was there any physical sensations, heart racing, tension etc)
Next I write the Emotions that come with the thought (sad, anxious, angry, disappointed etc)
Then I write the actual Thought. What it was that was going around in my mind.
After this I take a second to read the thought and think about it. Challenge it a little bit “where’s the proof?”
Then I write down an Alternative Response.
So for example one of the thoughts we worked through yesterday was me saying “I should have done some yoga today. I didnt bother. I don’t care enough. I’m lazy. I’m letting myself down”
Now during the day I made a great breakfast, went for a long walk with my mum and had lunch with her, I did some chores, I visited my husband at work and helped him a little bit.
So my alternative response was… “I did lots of other stuff! I wasnt home most of the day. I spent time with people I care about. I clearly do care very much. With everything going on I still managed to get up and out of bed”
The last thing to write after that is the Outcome. Do you believe that automatic thought now? What emotions do you feel now?
It turned out I wasn’t lazy at all! I’m proud of myself (this revelation made me cry) I focused on that one negative thing, forgot all the good stuff and gave myself a really hard time and actually, look at all I achieved! Not bad really for someone dealing with a load of s*** haha
This is simplified a little bit and I used an easy example but I still think it could work for some of the thoughts racing around your head at the moment Apparently the more we practice, eventually it will become a more natural thought process.
Our thoughts arent facts! And if your thoughts are anything like mine, they cant be trusted at all Big hugs
Thank you @foxgem - you are so kind & supportive on this forum. I feel like I am a walking s**t show! You are right, I just get myself in a spin. I finished radiotherapy in November but actually am feeling very different / experiencing different challenges this side of things. I genuinely cannot remember much & everytime I have to go to the hospital I almost black out. (Mentally) can never remember my date of birth, or who I am seeing. I lack a lot of trust given I was dismissed a lot at the start & sometimes am now. X
Apparently the more we practice, eventually it will become a more natural thought process.
Big hugs