lymphoedema

I am so sorry to hear of all the worry and uncertainty you are experiencing. Obviously you need the appointment with the MDT to find out what is really going on and the best treatment.

But in answer to your question about lingering post operative pain and swelling, I still have both in the neck area a few months after a neck dissection (part of my mouth cancer treatment) which is probably a mix of lymphoedema, post-op swelling and nerve damage. I think neck operations can have long term effects.

The ongoing infection for your husband is obviously also an issue which needs an explanation and treatment.

I had an untrasound scan to my persistent swelling and no further mass or tumour was found.

The place you will get real answers is at your husband’s next appointment with doctors who have all the facts. Like everyone on here, I know how anxious (and sometimes downright scared) we are waiting for results/diagnosis. All I can say is that your husbands MDT will be offering the very best advice, treatment and support whatever is causing his current problems.

Wishing you both all the best.

Hi Anorak Sorry to hear of your woes and hope your husband gets this sorted asap. The waiting is a horrible feeling and totally out of our hands. All the Best Regards Minmax

Anorak said:

My husband has today constantly had pus and now what looks like little blood clots coming out of his neck and is very distressed and scared as to what is going on.  He has seen 2 doctors, 2 consultants and three nurses and no one will do anything.  We were told that his cancer had gone and that the area around the tumour was clear so it had all been removed.  Has anyone experienced anything similar and is it the lymphoedema that is causing all these problems.

Hi Gill

The worry goes on snd on. I’m so sorry 

Can you manage A&E today before it gets worse? 

Maybe emergency medics can at least give your husband some relief 

I hope someone helps you soon 

Hi Dani

I did try and suggest A&E but he said what will they do no one else has done anything about it as it is like they don't want to touch it and he has been left to fend for himself yet again by the NHS.

He was very distressed last night at the amount of pus and is devastated that it is probably cancer again and doesn't know how much more he can take and now having a blood clot it has really knocked him over.  I suppose there comes a time when you have had enough.  When you are constantly being told and receive letters to say that your cancer has all gone (twice from the consultant personally) you believe you have done it.  If not for the persistence of my husband to say he was in so much pain and the swelling was distressing him I don't even think his new consultant at his follow up check ups he would have done anything either. In fact he made the flippant comment that everyone dealt with pain differently and insinuated that it was mind over matter and sending the right waves to the brain!!!!

I don't know what the future holds for us both if any but all we know is that we are very scared - well I am and the next few days will be the longest of our lives yet again only to be slammed down yet again.

I am trying to stay strong but the last 18 months have drained all of that.

Thanks for your message anyway, I will find the strength from somewhere I have to as we onlt have each other to get us through whatever we face now.

Gill. x

Thank you for your kind words.  Just got to see what happens on Tuesday but once again we are looking down the barrel of a gun waiting for the trigger to be pulled and blast us yet again into the depths of despair is the only way I can describe the feelings at the moment.

Two clear diagnosis in 18 months and then out of the blue what you class as something that started as a pimple like lump on your neck now is manifesting into something more serious. 

I myself am a survivor of malignant  melanoma but was never treated like this by the hospital, consultants and staff - how things can change in 15 years.

Thank you the waiting game goes on but in some sort of way perhaps once we know what we are dealing with it will be a relief somehow. Hope is running out at the moment.

Oh Gill this is awful. Thoughts and love and hugs with you. Xx

Anorak said:

Thank you the waiting game goes on but in some sort of way perhaps once we know what we are dealing with it will be a relief somehow. Hope is running out at the moment.

And when you survive Tuesday get PALS onto this. Nobody should be treated so dismissively and inhumanely the way you have 

Hello Gill,

So sorry your husband is going through this. I had lymphoedema after my op and it was hot and painful to touch for a long time and would sometimes bleed with a sticky, watery blood like substance and then scab up. I was at the hospital seeing the hygienist one time and she called for a surgeon to look at it.

He got me to lie down there and then and proceeded to squeeze it all out. It was agony!!! But did the trick. He explained the infection was all coming to surface and needed to come out.

I do hope it gets resolved for your hubby soon.

All the best

little-fi x

Yes despicable it has just been one cock up after another from the beginning of this dire situation.  I he was a dog he would have been treated better but then I suppose you are paying!

We have already instructed a solicitor as a possible medical negligence claim (or several in our case) and once we know we are on Tuesday and we think it is neglect then we will proceed.  I am not bothered about money on bit all I want is justice as these idiots should be held to account especially his consultant.  Funny how his a locum and keeps disappearing and pops up at the worst hospital trusts on the planet.

Gill. x