Feeling a little alone and scared

Sorry going to be a long post...

I have suffered with indegestion / heartburn for years (minimum 20) I went to my Dr years ago and told them but because over the counter remedies were working he just told me to keep taking those, so I did and never went back even though the indegestion etc continued, it was managable, dont eat spicy food, or eat in the evening, always have antacid tablets etc. It was just the way I lived. 

On Thursday 23rd April I felt like an mucsle under my right breast twisted and cramped, after that I was suffering with extreme heartburn , I went through 72 antacid tablets in 4 days. On the Monday 27th I rang my dr and had a telephone consultation and he said I need an endoscopy, he would put it through on the 2ww which because of the Covid 19 situation and having to self isolate for a week before etc was not performed until 28th May. 

 

When I had the endoscopy, the Endoscopist made a few comment which I felt were strange, for someone who does this all the time she commented "ooh that looks sore". After she gave me the news, I had a 3cm Barrett Eophegus, a small hiatus hernia, an ulcerated area in the Barretts area with abnormal cells she had taken 6 to 8 samples, and she was going to request a CT scan.

 

I had the CT Scan on 10th June, was contacted by the GI Nurses on Friday to tell me I had Oesophegal Cancer plus there was a 4cm mass in my right lung, and the lung cancer team would contact me as well, as they could not do any treamtent etc until they know whether they are connected.

 

I was contacted by the lung cancer team on Thursday 18th June to say they had reviewed the CT scan and I also have swollen glands in my right lung aswell as the mass which in the worst scenario could indicate a 3rd cancer. I have a bronchoscopy biopsy booked for the 30th June. 

 

I live alone just me and my two cats, I have 2 grown up sons, one lives near with his girlfiriend and there 4 children,  but the other is 70 odd miles away. So am feeling a little alone although both boys ring me daily. 

 

So this is where I am at the moment, been unable to eat proply since 23rd April and no nearer any treatment untill end July as the biopsy results wont be back until Mid July then they have to decide on a treatment plan etc. 

 

THe GI nurses have been amazing but I feel the Lung Cancer team are not as helpful they took over a week to even review the CT scan, the appointment for the biopsies seem quite a long time away, and the woman who rang me was quite patronising.

 

 


  • Hi PJL Queen, 

     

     I read your post and just wanted to say that my heart goes out to you. I am amazed how long you have to wait for the biopsy results from the endoscopy and the lung ones are not been taken yet - if I understood you correctly. It must be the most trying time. I can relate to your situation as I also live on my own and currently have health concerns. I do hope both of your sons can be there for you, I know the one is some distance away. I guess you have also found organisations like Macmillan for support. I am quite new here but hopefully others might give you more ideas for support during this difficult time. Im sending you healing waves and lots of good wishes,

    Bianca

  • Thank you Bianca, I am finding all the waiting the hardest especially as I am struggling to eat, the GI nurses and dietician have been amazing and have given me meal suppliments etc, but I am surviving on porridge, blended and sieved soups and liquids, I am just about keeping my weight at the same level by adding cream, and cheese to stuff to increase the protein/ fat intake and eating as frequently as I can (every 2 hours ) as suggested by the dietician. 

    I just can believe how long everything is taking the lung cancer team have been so slow and no sense of urgency but they cannot treat the oesophegl cancer till the lung cancer team have finished their diagnosis so I am just in limbo.

    It is now 56 days since my referral, I know the guidelines say 62 days from referal to treatment, I am going to be nearer 100 I think once everything is finished and a treatment plan arranged.

    Thanks for reading and responding I do appreciate it

     

    Pam

  • I think you are doing good to keep your weight steady. I wonder what you do to manage to rest and sleep in this limbo period...I find this the hardest. Also, is there no way at all to try and hurry up a bit the lung cancer team? I have had my GP ring or contact various hospital stuff for different issues over the years and seemed to have always worked. 


     

  • Sleep isn't a problem, everytime I sit down I doze off lol, I sleep when I can if i am awake at night it is normally because I gave dozed a lot in the daytime so I sit and do some adult colouring or something similar, helps with mindfulness and stops me worrying and brooding. 
    The GI nurse pushed the LC team to actually get the appointment for the 30th June, I will keep nagging and pushing as much as I can. 
     

    Pam