Hospital Appointment

HI Vicky

Hope you managed to get some sleep and you get the news you hope for. Waiting is so difficult.

Good Luck  !

Eddiex

Last 15 months, 3 Full Body scans, NO results or follow-up consultations. Starting March 2021.

(1) 9 months later, November 2021, finally told of possible ‘brain involvement’ needing further investigation, completely out of the blue to me - I wouldn’t have known if I hadn’t pressed.

(2) New Scan December 2021 - again, NO results provided - deduced/guessed original ‘issue’ no longer relevant on the basis that only one, was conducted, and no Supplementary scan, my only ‘evidence’.

(3) March 2022, 3 months later, again under pressure from my having had no results, I managed to evoke a phone call from the hospital to confirm that the original ‘issue’ was not a real issue but that there was now another ‘issue’ - possible bone involvement - so new scan to be conducted.

(4) June 2022 Scan - again NO results provided. Still waiting, despite several attempts to extract scan results from medics.

To my mind, this borders pretty close on ‘extreme cruelty’ - it certainly feels like it. Of course, though, I am aware that the NHS has extra pressures on it. However, while people are talking about (unacceptably) long new diagnosis and elective surgery lists, nobody seems to be talking about on-going support for cancer patient needs.

Any thoughts as to how I should proceed ?

Hi Eddieo!

Since you posted last. James has been back to the hospital and got the result that his cancer has come back in his bowel membranes. The surgeon said it was his stomach lining but when we saw the oncologist on Thursday last week he told us it was his bowel membranes and whether that is one and the same I don't know. Anyway the information seems a conflicting between the surgeon and the oncologist although I believe they have a good working relationship between them. She told us (the surgeon) that the cancer had come back and was in his stomach lining and her colorectoral nurse specialist who was present told us the CT scan had also picked it up in his pelvis. When we saw the oncologist on Thursday he said that it wasn't in his pelvis but what was picked up there was possibly scar tissue or very very slight remains of an infection which was down there. When James went in for his op in January he had to stay in a bit longer because he took an infection down there I remember, and they had to put a drain in to drain out whatever was there. He has scarring on his kidneys too but the oncologist said his kidney function is good. He saw a completely different James from what he saw back in February last time he saw him just after the operation and said that he is looking `extemely well`. He's lost a stone in weight between May and just now but the surgeon said that thats ok and he's not underweight. James is a `big chap` so could do with losing a few pounds but we thought that was a bit quick but the oncologist said no and that's ok so he's the expert. So, the plan is now that he will start chemotherapy again in the next few weeks hopefully. A combination of  CAPOX (Capecitabine and Oxiplatin) he'll get the Oxiplatin through a drip and the Capecitabine in tablet form. From what we could pick up from the oncologist the cancer is not extensive as we thought at first but it is there and he said it was very hard to detect at first on his CT scan but they eventually found as he said some `cancer spots` on the bowel membranes. He said unfortunately this treatment may not rid him of all the cancer but it will possibly slow it and shrink it right down and hopefully he can live with it and it can be managed. He was a little reluctant to start the treatment straight away because he said with James looking so well. He says that sometimes if a patient is tolerating their cancer illness well actually putting them on treatment immediately can backfire and they can become really ill with the side effects of treatment. So we have to meet with him again in three weeks time and I think inbetween that time he will be arranging for him to see a neurosurgeon with regards to his kidneys. But we will definitely going for the chemo and hopefully the benefits will outweigh the side effects. Anything that is going to benefit him is worth a shot.

I was diagnosed 16 months ago.  My cancer was missed in tests given by my GP and I had to pay for further tests.  I was immediately confirmed - probably stage 3 cancer of the anus.  Thereafter I was transferred into the NHS but because they did not recognise private tests and I started the diagnosis process all over again.  It was five months before I saw an oncologist.  At that point there was mention of possible cancer in one of my kidneys.  Then it was similar in my liver.  But this was on scans and it was unusual for my type of cancer to spread to the kidneys.  Meanwhile I started chemo and radiotherapy - six weeks in Glasgow.  Then I got an oncology nurse sitting me down and explaining that a kidney oncology group would look at my scan again and I would get a letter.  The liver was not mentioned again but I got a letter saying my liver was not a problem but it would be looked at again sometime in the future. I completed my program of treatment in August 2021 for the cancer in my anus.  I had delayed scans four months latter and just recently had further scans. So I am nine months after my treatment and there is no reoccurrance.  I think I have a no-nonsense oncologist who seems to waste no time being delicate.  I trust him.  Yet I have noticed that different people in the system have said different things to me.  No one has given me any prognosis or said anything about what the stats say for people with my condition but needless to say I have gone on line and got details.  I am tired but OK and have a dog who forces me out on walks no matter how tired I am.  He has been my greatest support.  Yet there have been dark moments and those moments inevitably come from mixed messages and being left in the air with follow on program for checkups and so on.  I do not think the anxiety created by different messages can be underestimated.  I have talked to people in a similar condition to myself and that can be encouraging.  The problem is that no two cancers are the same.  And similarly no two approaches to working with patients seem to be the same.  I tell myself that this is the deal and I will have what is on offer on any terms.  Once I tell myself this and check up on my post-treatment follow on program to make sure I am not missing something, it seems Ok.  None of the cancer experience is easy.    

Thanks for sharing that Keith.

That is so inspiring to know that you have had no further cancer recurrance. I really hope the same happens with my husband once he's had his chemotherapy. It is just so hard to take to find it has come back so soon if it were a year or 2 down the line maybe but maybe this is a `godsend` and they've detected it early and may just be able to kill off what is lurking there. I refuse to say `cure` at this time because I now feel we got too complacent last time that that was it all done and dusted and didn't give a second thought of it coming back. Hopefully it'll work for us again. Take Care

Vicky.

Patty - It is difficult.  When things are not clear for the medics it becomes even more frightening for us the patients.  I have had all that and still get it.  So keep asking questions and keep being honest when you do not understand or when you have fears.  Let it out to your oncologist and get to know as much as you can from them.  Then after all that do something with your partner that you love and just enjoy things.  Put the worries aside for a while and see how things go.  It is tough and I will never be cured as you say.  We live with our condition and that has been difficult for me.  I am just in early days as you are with your partner.  There are no crystal balls or Walt Disney scripts.  We just get on with things as best we can ...  All the very best to you.  K 

Thanks for that Keith! Yes if only we could wave a magic wand n it would all go away. We're away for a few days so it'll take our minds off it for a while just to be 'us'.