Random: To Vicky, Juliana, Nicky & an Update

[LilyG]

Hi All,

Please forgive me for not replying to what have been some really heart-churning posts. I just couldn't put into words what I wanted to say at the time and to add that we have been going from hospital to hospital over recent weeks has only made it worse - thankfully my trusty iPhone means that I can keep updated whilst we're on the move.

I was so sorry to hear about Vicky's husband and it brought back memories of my uncle who was diagnosed and passed away so quickly: he too was opened up and spent too long in pain and in hospital even though at the outset they said there was nothing that could be done. Initially we felt really angry that he hadn't been allowed to rest but in hindsight we were still hoping that a miracle would happen and that they would be able to do something. Vicky: your grief was so raw and honest and I hope that you are slowly building yourself and your courage back up.

To those that are still battling or supporting partners and family, I can only admire your resolve and good humour in spite of what you are going through: I wish you all the strength that you can muster. It feels so bad to be given news that is adverse even if you are expecting it...deep down, there was always a bit of me that 'hoped' I was being pessimistic and that actually everything was OK.

Last week for us was manic: Trevor in for CT-guided biopsy on Monday, my daughter in to see a Paediatrician due to chronic stomach pains at a different hospital on Tuesday, Trevor in another hospital to see a Kidney Specialist on Thursday and me in (yet another) hospital on Friday for an operation to remove a ureteric stent.

I'll go from easy to difficult: I'm OK and thankful to have the stent removed having been on my 4th set of antibiotics in 5 weeks - I can now pee in peace! My daughter is 'full of poo' according to the Paed after an x-ray, possibly due to the stress of the past year but they want to do an ultrasound to see if she has inherited my kidney. (Like many of you), she has been given Movicol and despises it - it's just not going down well.Trevor's remaining kidney is permanently damaged and so his legs are constantly swollen and he is tired; his platelets also aren't recovering so potentially his bone marrow may be too. Prior to the biospy (and because of its implications) I asked a few questions about the procedure: in summary it looks as though the tissue removed from the open biopsy last August and since reviewed by two different histopathologists was 'normal' pancreatic tissue; two radiologists then looked at the scans and have said that it looks like mets from his Renal Cell Carcinoma; the resulting chemo from the misdiagnosis has inflamed his kidney which has now settled down to stage 3 Chronic Kidney Disease and he requires Blood Pressure tablets.

Eventually yesterday, we were given a time to meet with somebody from the xx to discuss the latest biopsy so we should definitely know what the diagnosis is...or not. If they have misdiagnosed, I still fail to understand how it could have happened: how can you give somebody 6-9 months to live when there wasn't sufficient evidence of diagnosis.

After all this, it still may be PanCan as our review is with his Upper GI Oncologist and we were told that it would probably be somebody else as she doesn't deal with Renal Oncology or it just may be a handover - who knows.

I will continue to plot your progress and hope that we all receive some good news along the lines of Abraxane...or better.

L x

[Nardobd]

Hi Lily

Well you certainly lead an "interesting" life these days...my goodness you must be exhausted!

I am so very sorry to hear that Trevor's kidney was permanently damaged by the chemo. As if the mets from the renal cancer weren't bad enough! I hope you pin those doctors down when you meet - you need honest answers and peace of mind.

Do let us know how you get on - even if it's not pc - you're part of the "family" and we will all want to know.

Kind regards

Nicki

[Juliana]

Hi Lily,

Thanks for posting and asking after us....sheeesh.....busy is an understatement in your life eh? It must have been stressfull both husband and child in separate hospitals, plus you having your stent out too.....it always comes in 3's so they say.

I just hope you get some 'peace' from your meeting and results....I just can't begin to imagine how you all feel, how you are able to trust anyone from the medical field I have no idea, your faith in the system is definately stronger than mine is. But as for Trevor's permanent kidney damage....I would be spitting bullets. It's unforgivable to have put him through all of this if it was a rushed diagnosis on little evidence. Time wasted and irreparable damage done, not just physically but mental/emotionally I would have to see something done about it. It's just finding the strength for another type of battle, which I doubt you or Trevor have atm. I'm sure the profession gets away with murder (near literal!) because their victims are just too ill or exhausted to invest time in a lawsuit! (sheeesh....what was in my hotchocolate....I'm fuming!).

As for me, had my MRI along with a surprise panic attack (but lets not go into that.....) on Friday - so hopefully some results this week.

Speak to you guys soon x

Juliana

[vicky1389]

hi only just seen this thread as found it hard coming on here thanks for asking after us so sad to see the loss of some great people who offered me support even though they was going through such a dreadful time my thoughts are with there friends and familys i still have my raw days kids are doing gr8 they did a thing called slide away its a bereavement thing for children it has helped them out alot they still get emotional sometimes but were all doing well im hoping to pass my driving test soon and this yr i even took the kids out on a family day out which i couldnt do before my oldest has now started secondary school he still has issues about talking about his dad but he is gettibg there its like one seems to get there then the other falls back but i know duane would be proud of us all im starting to feel strong enough to see pal as i still want answers i know i probably wont get them just cant bring myself to read duanes notes yet as not sure whether all the hatefulness i felt might come bk as i sometimes still feel it bubbling inside my gp has been brilliant and just listens my heart goes out to everyone with this disease and the carers and just wish oneday theres a cure sooner the better i say regards vicky x