My treatment update......

[ALUNONHISOWN]

I apologise for not posting sooner as I have had a terrible time since New Year's Eve.

I had my first round of Chemo on Christmas Eve and a follow up dose at home on New Year's Eve. All down hill from there on in.

To cut a long story short I ended up in hospital on two occasion both times with Gallstone problems, never even knew I had Gallstones, and also Pancreatitis. I have never experienced pain like it. Both times I ended up in hospital for 5 day stays with blood markers over 4000 and should have been 50-60. What blood markers they were I cannot remember.

Chemo was stopped and was told I will be given Radical Radiotherapy instead. Went for my Mapping Scan and the radiologist decided I was not well enough to have the Mapping Scan let alone the Radical Radiotherapy, bearing in mind I was only out of hospital a few days before and dragged myself out of bed ( I was isolating in bed from Covid for my wifes sake in case I caught the virus in hospital). Seen my Oncologist a few days later and she was in agreement with the Radiologist and decided I could only have Palliative Radiotherapy to try and stop the tumour bleeding. I did have the Palliative Radiotherapy over 5 days and the bleeding has indeed all bar stopped, just seen a few spots after a coughing fit in past 3 weeks almost.

I have since been told twice by same Oncologist that there is no more treatment for me, so in essence I am terminal. Not what I wanted to hear and asked for a second opinion which I will get within next 14 days.

I am struggling to sleep with my breathing being difficult. All I can see is my demise, mates carrying my coffin down to the hearse. I am at my wits end, not knowing how long I got, not even wanting to know how long I got, and feeling sorry for my wife,.

On a lighter note I would like to express my most sincere thanks to the Roy Castle Foundation for the Grant I was awarded and used it to buy me some much needed new clothes.

A million thanks.

[Cockailschemocancer]

I’m sorry to read this, I really hope you get some more positive news on your second opinion. I wish you all the best x

[Manninmaid]

I too am very sorry to hear what an awful time you have been having and your oncologist’s view. I am glad you are seeking a second opinion and hope this proves positive. Sending you very best wishes and positive thoughts.

[KT22]

So very sorry to read of your terrible experiences. Please ensure you get that second opinion & a third of necessary. It’s my biggest regret that I didn’t push for a second opinion for my husband.

Sending a virtual hug, positive thoughts & wish you all the best. X

[simlut]

You’ve really been going through it and for them to change the treatment plan must be so disappointing and frightening.

I hope your second opinion is more positive and gives you options for treatment xxx

[JanetteR57]

Gosh what an experience you've had - such an ordeal - it's no wonder you're terrified and upset. Many patients have palliative radiotherapy to help them and other supportive care services to help them. do you have a lung nurse you can talk to about this? they're used to helping many patients at different times and many receive a terminal diagnosis but it doesn't necessarily mean 'imminently' which most of us assume. hope you get some answers and support soon.. thinking of you.... there may be some answers to your questions on this link..... roycastle.org/about-lung-ca...

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Hello ALUNONHISOWN,

It sounds as though you have had a pretty awful few months and I am sorry to hear that the oncologist can not offer you any further treatment. As JanetteR has said palliative or terminal does not mean immanent, its supportive care for you and your family to live with and deal with any side effects as and when they come along. A second opinion is a good thing as it means that you will have another expert look at your case with fresh eyes and give you peace of mind.

I am pleased to hear that your patient grant has been of help to you

Kind regards

Roy Castle support team