Some difficult decisions for you i can’t imagine how difficult it must be. There are no right answers go with what feels right for you I wish you good luck …biggest hugs x
1 Like
You are the only person who can make this decision Mr F , but getting all the info you can may help.
I once said I would never go through the side effects of Chemo again, but I think if I needed to I would! After all the effects of doing nothing could be worse. 
1 Like
At one point my only option was surgery and I had emphatically said no to this because it would have taken from me far to much. Although I do not have much in the way of taste buds and my swallow function is pretty none existent I enjoyed a cup of coffee with a bit of Lindt Lindor chocolate, surgery would have meant a permanent feeding tube, that I could not accept under any circumstances and I am well aware of the consequences, likewise if radiation treatment was an option this would also have been refused because of the side effects I still suffer from a dozen years later.
1 Like
You make me feel lucky because I never had to make those choices and only have minor problems caused by my chemo.
I hope you can decide on the right choice for you. I am sure all the members on here, and your regular feline visitors would miss you, so I am hoping that you choose the treatment & it proves to be successful!
Your funnies make me smile every day , so no matter how long you choose to be with us, I am happy that you joined ! 
1 Like
Difficult decisions for you to make MrFraggle and I send my best wishes to you…
1 Like
I am very sorry to hear this and send best wishes.
1 Like
The best news of all, Glenn, is that you’re able to talk about it and not stewing in your own juices so to speak. All I can say is stay positive, read up and learn all you can, and listen to what the professionals tell you to do.
I appreciate you aren’t looking for sympathy Mr Fraggle but as others have said, I too feel for you. It’s tough decisions to be made. Sincerely wishing you well in whichever road you choose to take.
I am sorry to hear your news MrFraggle, but as others have said, it’s good you can talk openly about it - it’s never a good idea to bottle things up. Thank heavens you seem to have at least one medic you can trust implicitly and, hopefully, you will find your oncologist to be another one on your side here. Good luck with whatever choices you make about your future treatment. I sincerely wish you well.
Yesterday I thought I would try to get more information on why suggested treatment has been delayed by at least three months.
This proved easier said than done.
I first contacted MacMillan as I thought they would know, nit the specifics of my case but why generally treatment can be delayed, except the nurse I talked to could not think of a medical reason why.
My next port of call was to email my ENT consultant who as present at my consultation with tge oncologist last Tuesday. Problem as my email was bounced back which a odd as it was certainly the right address as i confirned it via his Spire Health profile page where he does private consultations.
Next i tried his secretaries phone number supplied in the 64 page booklet of information I recieved on Tuesday, the problem here was she only works three days and Friday was not one of them.
Finally I left a message for the specialist nurse I was introduced to on Tuesday I await her return call.
You have every right to ask these questions MrFraggle67 so don’t give up. Try sending an e mail to the oncologists secretary , to ask this question, & ask for an urgent reply because this is a life or death decision for you & you can’t make the decision without all the relative info!
I will not give up, unfortunately I cannot email the secretary as I do not have her address but I will phone again Monday. But it does really show that in some respects we still make it difficult for patients to get information, admittedly it is far better than a decade ago but we have a way to go.
I agree , but if we don’t fight the current system we will lose the battle…so well done you!
I had problems with major delays when receiving my chemo ( which is only effective if the timing of delivery is correct … and it wasn’t. It made me son angry that I complained to my MP, the hospital and PALS and got results. 
I sometimes wonder if that anger made me focus on my illness less, and if it did, is that why I managed to recover , as it removed some of my stress!
I really hope that being able to talk on here is helping you make the right decisions! 
We do not have PALS up here in Scotland we have PASS which seems quite different and is provided by the Citizens Advice Bureau an organisation I try to avoid as 10 years ago I was looking for advice on a complaint about my cancer treatment and was put in touch with a person that could help. What they failed to mention is this person was paid by the NHS Health board the very same board I was wanting to make a complaint about…
As for stress nope have not got it with this issue it is what it is. I am getting some good advice from a Facebook group though.
You talk of delays I was speaking to a fellow volunteer at a cat charity I support and she was telling me a friends daughter had had her cancer treatment, surgery, chemo and radiation start delayed twice and is still waiting.
Just had a response to my email to my ENT consultant Andy Evans.
The 3 months wait was to try to establish what trajectory the disease is taking both symptomatically and on scans as well as to allow you to consider immunotherapy.
Given you are minimally symptomatic at present clearly the balance of risk of side effects vs benefit is probably not in your favour. If however over the coming weeks things change you should let me or Pam know and we can get you up sooner.
The problem with immunotherapy is knowing whom it will benefit and how quickly. Clearly we don’t want to wait til the horse has bolted but equally it can take several months to do anything
Doing nothing is difficult to predict suffice to say you are likely to become symptomatic with pain and worsening swallow at some point. This then leads to an increased risk of a deterioration in the safety of your swallow and a probable pneumonia at some stage which you may not be strong enough to recover from time scales impossible to predict but the next period may give us an indication of what your tumour is doing so we can counsel you appropriately.
He seems to know his stuff do you feel more informed now MrFraggle?
Not sure that I feel fully informed but know a bit more that I did.
It still seems odd to delay treatment as the cancer is still there just the symptoms have eased but who am I to question, I am but the patient after all.
1 Like
My sister in law has liver cancer she had a stent put in her liver about a year ago and was supposed to have a follow up operation…however because the tumour seems to be dormant at the moment and hasn’t changed in size at all they decided to leave it as it is…seems strange but it sounds similar to you…if its not progressing leave it alone.
What I find odd and it is not the first time that I have found MacMillan less than helpful, was that the nurse I spoke to could not think of a medical reason to delay treatment and to be honest you would think they woukd know.
Your point of leaving it alone, this happened to a friend for pretty much the same reason as you mentioned except the cancer came back big time very quickly that it was to late to treat.
But it is what it is and we will see what we will see in three months.
1 Like
I had missed this thread Mr F, I’m sorry to hear it has reared its ugly head. My love and best wishes, you have some difficult decisions.
Talking openly is a good thing, like my mother always told me, a trouble shared is a trouble halved. I always talk through my fears in this forum and the support here is tremendous, so you keep talking Mr F and I’m sure you’ll feel the love and support. I do wish I could come and give you a right big hug but know I gave you one virtually (((((((((((hugs))))))))) xxxx
1 Like