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waiting for MDT meeting. Very, very anxious

madaboutmutts
Posted by

I originally posted this in Family & Friends, but now realise it should be here.

I can't believe this has happened to us.   Last December we were involved in a RTA, when my husband sustained 3 brain haemorrhages and broke almost every bone his face.  He was in ITU/hospital for 6 weeks and had massive surgery to repair the damage and has been making a great recovery since with his tremendous fighting spirit,   We even managed a week away,  but during this week away he noticed a lump in his neck.  As we were due to see his MFU surgeon for follow up of his injuries we mentioned it to him the lump expecting him to dismiss it as nothing, but he said ultrasound and FNA were needed of what he felt was a lymph node,  which as we were seeing him privately we had done the next day. He did also do a nasendoscopy to check on the facial injuries and said he couldn't see any problem that might account for the swollen lymph node.   The result shows cancer cells in the FNA biopsy, but when I asked him if he thought they had originated there, he said he thought they had come from elsewhere.  We are now so anxious that this represents a secondary.  He arranged further scans, he was going to just ask for chest and neck, but husband has had a little back pain for a couple of weeks which goes off when he gets up, so he has included abdomen and chest.  It may or may not be related.My husband has had NO other symptoms, was feeling better than he had since the accident and looking forward to getting back to normal, so this is a bolt out of the blue  He is an extremely fit and normally well 77 year old who walks the dog miles every day, has lost no weight and has a good appetite.  He won't discuss how he is feeling at all - just says he's "fed up".    It is all so, so unfair as he recovered so well from his accident and as this was only a few months ago, it has all been a very traumatic 5 months already.    

He had the CTs this week and the consultant is seeing us in his MDT clinic on Tuesday and we are absolutely terrified about this.  I want to be the best support possible to him, but having nursed him back to health and the trauma of being in the car when he was injured, I am finding it very difficult.   My family are all great support, and are very local but I wish he would talk to me about it.    I have read that things are a little easier to deal with once you have a clear diagnosis and plan, but I am so afraid of what they are going to tell us.   The hospital is quite a distance away and our daughter is coming with us to take notes.     Really just feeling shell shocked and tearful, especially as we have lost a couple of people with cancer over the past 12 months.  

Really just looking for a bit of reassurance.  I have read some inspiring stories on this site and feel better for writing this all down. Out of interest has anybody had experience of this thing surfacing after a major trauma?   The Consultant says not related but our GP says there has been some research into this.   I wonder if his immune system was compromised after the accident which allowed something which was dormant to accelerate.     I suppose I am looking for an answer and there probably isn't one. 

Thank you for listening.

 

 
 
 

LoobyLou49
Posted by

Hi and welcome to Carers. I can see that Steve answered your post in Family and Friends and I hope that has helped settle your thoughts and feelings. The waiting game is always traumatic and you're right, when looking for a reason for cancer there isn't one; it hits families in large numbers where cancer genes are carried and it hits randomly in the general community. I understand your fear of what might be said at the next appointment, but you will get through it. We all have a deep inner well of strength that helps us to go on when we need to. It's quite common for men to keep their feelings and thoughts to themselves. My husband has an appointment tomorrow and he doesn't want me there and I respect that even though the reaction is naturally one of 'what if?'.  The shock you are going through is normal and one most of us feel; it will settle in time and yes, things do feel easier when there is a treatment plan in place.  It's good to hear that you have a lot of support, take all the help you can get; it's a long journey and having support on the way is worth its weight in gold.

Hugs,

LoobyLou   

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

madaboutmutts
Posted by

Thank you so much for your kind words. I see you have a lot of experience in this and any advice is really welcome. The appointment is tomorrow and as it gets closer my husband is becoming very quiet and I am trying to keep things normal. Not helping becsuse my younger daughter is very angry about it all and its not helping us. In the wee small hours my imagination goes into overdrive. We are supposed to be going on a cruise in 5 weeks and though I realise its not going to happen, my husband says we can go - he seems to be in denial.   We have a year old mad Labradoodle who is providing a distraction. The thought of a 90 mile round trip tomorrow and possibly lots more is very daunting.  I did it for 7 weeks when husband was a patient after the accident and it was so so tiring. However this hospital has sn excellent reputation for cancer care.

LoobyLou49
Posted by

Hi , a 90 mile round trip, oh my! Being ‘in denial’ may well be what is keeping your husband going. Labradoodles are lovely, mine is a Tibetan Terrier with a sense of humour. She hides and jumps out on us and I swear you can see her laughing. A lighter moment is always welcome. Good luck for tomorrow.

Love and hugs,

LoobyLou   

 If you find dust in my house, write your name in it. When the signatures overlap I'll get the polish. 

Needing friends
Posted by

Hi loobyloo49, so glad to know that I am not alone in having a partner who doesn't want me to be at his oncologist appointments. I too was hurt at first but now accept  it  is his decision  and what he feels comfortable with. The problem is getting any information. 

Needing friends
Posted by

I am glad to hear that I am not alone in having a partner who doesn't want me to be with him at oncologist appointments. I was hurt initially but now accept that it is his decision and what he feels comfortable with the problem is getting any information from him 

madaboutmutts
Posted by

Hi. Saw Consultant today. CTs showed no primary to account for squamous cells in neck lymph node. Husband having PET scan and biopsies. They seem to think its from throat/tonsils and too small to see. They said it seems to be very early. Plan after PET scan - biopsies of neck lump/tonsil and anything that might show on PET - tonsillectomy and radio/chemo every day for 6 weeks. They seem quite positive and its better than we had feared.   Husband being really brave but scared of treatment and 90 mile round trip every day. Still we will do whatever has to be done

Gimbosgirl
Posted by

Mine won’t let me even know the time or location of appointments