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Advice for poor DH (long, sorry...)

(9 Posts)
NicwNacw Fri 23-Sep-11 23:32:46

Ok, a brief history...

DH was diagnosed with mouth cancer in April this year. He doesn't smoke or drink. The tumour was on his tongue and he had a partial glossectomy in May which resulted in him having a tracheostomy for about 4 days before it was removed and allowed to heal. He made an amazing recovery post op until about 6 weeks when he developed some breathing difficulties and a cough. He was re-admitted and to cut a long story short a growth was found near the site of the trachy scar.

He was then scheduled for a bronchoscopy and laryngoscopy to examine/biopsy the growth, which has been referred to variously as a tumour, a polyp and a growth by different consultants. He still has a persistant cough and has had several chest infections/colds which have postponed the biopsy.

His original team was maxillo facial, he was passed to ENT for the broncoscopy, they then passed him to the chest team and today we found out that the chest team have passed him on to Liverpool (we are in Wales).

I was hoping that someone could shed some light on all this!! Not sure why there seems to be a reluctance to deal with it or why we now have to go to Liverpool. Obviously his previous cancer history makes this concerning although we have been assured that tracheal tumours are very rare. If anyone has any insight it would be massively appreciated!

Tortington Fri 23-Sep-11 23:35:12

i hope someone can come to give you some advice, i don't have any but the lack of continuity of care is worrying

NicwNacw Sat 24-Sep-11 08:46:43

bump.

DecapitatedLegoman Sat 24-Sep-11 08:56:07

Sorry I can't be of any help. Can I suggest you contact his GP or try Macmillan for a bit of support and advice from those in the know?

NicwNacw Sat 24-Sep-11 09:06:19

We've got a Macmillan nurse and also a counsellor. The thing is that as we've been passed from team to team we seem to have had less and less info.

Only last week we were rejoicing because we'd seem two consultants on Friday who said the chances of it being anything nasty are very slim and not to be overly worried. Then yesterday had a phone call from consultant's secretary to say he is being referred to Liverpool because they have a specialist unit - and they are rushing it through because of DH's history and what it could be!! Just feel like we're on a rollercoaster at the moment....

DecapitatedLegoman Sat 24-Sep-11 18:09:05

Bumping for you smileBumping for you smile

lisad123 Sat 24-Sep-11 18:12:43

Poor dh. Can u go on the macmillian website? There are forums on there and I'm sure someone there will have a better idea than us.
I would be tempted to call macmillian nurse and ask her why and explain your unhappy about lack of info.
Hth

RichTeaAreCrap Sat 24-Sep-11 18:57:37

Sorry I can't help, but wanted to post. Your poor dh.

If you do get referred to Liverpool I assume it will be Clatterbridge hospital? It is a fabulous hospital imo and I am sure that your dh will be looked after very well there.

It is good that they are rushing it through for you but I can understand that you are panicking about this, it must be very stressful and worrying.

NicwNacw Sat 24-Sep-11 23:31:36

I think it must be Clatterbridge - googled tonight and it looks very good with specialist thoracic team so would make sense. Thanks for all your messages - we have had fantastic care so far so just feeling a bit unsettled about being passed over to another team and hosp when we have had so much trust in everyone so far.

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