Hi Mower, so sorry this has happened to your dad.

You can contact the macmillan nurse assigned to your dad to ask questions. She may not have the answers immediately but will find out what she can, and may also help with other things you are in need of. 

I think your dad and you and your family can get counciling to help you during this difficult time if you ask too. Sometimes we need to lean on others a bit when times are hard.

Thinking of you and your dad and wishing him well

Aemi x

Thank you for your reply its so hard seeing him in pain & thinking how long I have with him, but got a load of questions to ask his consultant when we get an appointment but don't know when that will be as he has cat scan today & not heard any think about him going for his biopsy yet, it's just a waiting game & it feel like they are taking forever.

Thank you Steven

This will be the 3rd time in 18 mths he will be fighting 4 his life as the 1st time was 17.10.13, he was put on 60omg of Carbamazepine, 300mg Gabapentin & 1.5mg of pizotifen all in 1 go because he had a stabbing pain in his face I was telling the nurses Fay & night some think is wrong with him, it went on for 5 days he couldn't talk or move, I asked if he had a stroke but he hadn't so I said it most be the meds he's on has he only started them on the 10th & kept falling over so ended up in hospital on the 14th with broken hip, kept off meds till 17th after his opp was talking & everything till then. But they couldn't stop them as I needed 2 get gp 2 call them 1st thing Monday 2 stop them so I did,  by the next day he was talking 2 me but the side effects of taking them all was to most 4 his body,ended up with 3 bloodtranfusion on the 25th but still confused plus not eating or drinking most then he started 2 improve abit, then on the 1.11.13 he ended up having the runs both ends I mean both ends (poo) he has this happen about 2 times a yr. But with everything that's gone on he ended up in organ failure & we need 2 call family in & say our goodbyes, then the Doctor said he could put a line in his neck (1 in 10) chance it could work or it could bring his death on faster, it worked he was in HDU 4 a week but was told he my not be the same as he was b4, I didn't care he made it but still had a long way 2 go was they visiting him 2 times a day plus going 2 work as I was told the 1st  week they can pick up just b4 they die. 11.11.13 sitting in a chair 4 the 1st time plus I was told he had 2 have  iron infusions as iron tables not working on him plus he couldn't walk, went with him 4 an MRI scan on the 7.01.14 was told there was something on the scan but not clear what it is (on his Nick) was told he would not walk again & don't even ty it, we could take him home the end of Jan but went back 4 another MRI on the 07.02.14 had 2 ring round 4 results & TOLD all ok & would see him in 6mths time & now this. Sorry about the rant take care x

Thank you Aemi

My Dad still don't know or maybe he dose & not saying I don't know, u take care x

Hi, Mower, did your dad have his biopsy yesterday?  If so I hope he is okay after the operation and that the results are better than you had hoped.  Thinking of you both and my best wishes.

Hi Pauline, yes he had it yesterday had the stacks all day & tongue painful 2 day but asked GP 2 come out as not been lol 4 over 10 days & laxatives not working on him plus as no energy, as need 2 keep an eye on it otherwise he could end up being sick where he brings it up both ends as this happens 2 him 1 or 2 times a year & it makes him weak & on a drip, will get appointment in 2 weeks, nace of u asking how r u feeling 2 day? Take care x

Bowel problems are awful (as I know!) and if you can't eat then you end up constipated, laxatives eventually help the problem but by then it becomes diahrrea, its a no win situation.  I hope with a little time and medication dad's pain will be better.  Pkease let us know when he gets his results.  Take care of yourself.

Hi mower

Glad that your Dad was able to go ahead with the biopsy and at least it is out of the way now.  Hoping that the GP can help with pain and bowel problems. As Pauline has said its like being in a no win situation. Not sure if your Dad is eating much but when my hubby found it difficult we were able to get nutritional shakes on prescription (several different varieties so could find something he enjoys).  They are also sold through most large supermarkets. Hope the appointment in a couple of weeks gives you some up to date information/understanding. Look after yourself too.  Jules

Hi Jules

Thanks for your reply, i have got some drinks off gp for him & he has been to the lol  :-)  just got to wait for appointment, it hard as can't wait to find out but then again I don't want  to find out as I know what they are going to if you know what I mean, his teeth are playing him up a bit as well as his tongue because it's in his tongue & jaw but my Dad don't know this as don't know if I should tell him or leave it till the appointment & let the consultant tell him? Has my Dad didn't here him say cancer so don't know what to do for the best.you take care x

Hi Mower,
Re telling your dad, I would suggest letting the medical experts do this.
In our situation hubby was diagnoses with sciatica, we had scans done and took them to chiropractor as those guys can do things for sciatica.  He checked out the scans and told us they didn't look good, he also read report and urged us to get back to docs.  He mentioned bone cancer but for some reason hubby failed to take the info in.
On returning home there was a message from gp requesting an appt asap.  Still hubby couldn't understand why doc wanted to see him.
I chose to let the doc do the explaining as it gave hubby a few more hours of living in ignorance before we were thrown into the hell this disease is.  In  a way I was privy to all results before hubby as he chose not to want to know until it came out of the specialists mouths, whereas I opened the results and read them as soon as I picked them up.  This in a way made me able to face what was happening and be strong in front of hubby as forewarned is forearmed and knowledge is power.
Guess what I am trying to say is the medical guys are trained as to how to deliver news be it good or bad, we are not.
As the lovely Jules has said look after yourself too.  Hope you can go off and have a coffee by yourself or sit in a park for 30 mins.  You need time out too honey.
Sending you a virtual hug
Kathy x
 

Hi Kathy

Thanks so most for replying, I was thinking the same as you, the long he don't know the better for him as he knows they are doing tests for cancer but he hadn't got his head round to thinking it is bless him, so going to leave it up to consultant to do it, take care x

I don't believe it my Dad just had a letter for a care co-coordinator for cancer care (squamous cell carcinoma) thank god he didn't read it & gave it me, what a way for him to of found out, I told him it's in case he needs a doctor when they are closed as I didn't want to tell him he has cancer &  even I wasn't 100% sure he had it.

I don't believe it my Dad just had a letter for a care co-coordinator for cancer care (squamous cell carcinoma) thank god he didn't read it & gave it me, what a way for him to of found out, I told him it's in case he needs a doctor when they are closed as I didn't want to tell him he has cancer &  even I wasn't 100% sure he had it.

Hi Mower,
Is the letter offering help if required?  Are the results of biopsy though so quickly?
Cannot believe this is the way folk over there are notified via post.  It's still not your job to tell him.  The gp should be doing it.  Minding my language as would love to type something inappropriate. Grrr
Kathy xx
 

Hi Kathy 

yes it is offering help & care so don't have to go in to hospital when the time comes, one way of finding out he doing have long left as not seen consultant yet or had it confirm, I think he knows it is as seen flu jab on the letter & above that is says cancer care, but not saying anything as don't want to upset me so I'm going to see if he comes out with it in a bit,  take care x

  Ps I'm hopping I didn't accidentally press report post by mistake sorry if I have x

Hi Mower

sorry for not replying sooner but  do agree with what Kathy has said and am sure it will be easier for your Dad to understand matters when he has the appointment with consultant. Definitely annoying that the letter should arrive before he even knows what is happening.(though good to know you will have necessary support when time comes). So glad you were able to intercept post. Its quite possible that your Dad is aware of what he 'thinks' he has but would find it hard to talk to you about just now as needs time to process it himself. (My husband  chose to find out for himself (went to appointment on his own and then told me). Terribly emotional time for all concerned but the forum is here when you need to talk things through and I hope all will seem a little clearer once the appointment takes place.

Hope the drinks are  helping your Dad and he is feeling  more comfortable but do not hesitate to go back to the GP if either your Dad or you need support before the appointment.  Sending a hug.Jules

Hi jules

Thanks for getting back to me, he said to me today it could be cancer & I said yes it could be & left it at that as going to see if I can get hold of the care coordinator on Tuesday & see if some one can come out & explain it to him as it will be to much for him to take in when we go back & see the consultant, plus I would like to know what  [m] squamous cell carcinoma NOS mean, I know what scc is. This is all from his blood tests as they wouldn't of go his results because the care plan is dated 28.04.15. Take care x

Hi Mower

Its great that you are able to help with arrangements and am sure your Dad is coping much better having  your support. Medical terms are a bind aren't they and I cannot help I am afraid. If the care coordinator is unavailable for some reason you can give the nurses a ring on this forum from Tuesday (as Monday bank holiday) 9-5 (free from landlines and some mobile networks) and am sure they will be able to explain a little more.(or there may be someone reading your post who will understand.

 The waiting around does not help as you just want to know what is happening and get your head round things (found it helped me to prepare myself as hunby never wanted to discuss it with me and I had to wait for the medical team to explain as we progressed through his illness (thankfully he gave permission for all his 'team' to talk with me )). Remember to look after yourself too.Jules x

Hi Jules

I can't see the post I just sent you so don't know if it sent? So here I go again lol,yes it's the not knowing that's hard as all I have said could be wrong but I don't think I am, just waiting for the appointment for the consultant to find out what the results are from his cat scan & biopsy,plus see if it has spread else where as I think it could be in his neck as will but hopping I'm wrong, my Dad gave me permission years ago & from now on I have told them to call me & not my Dad from now on. How are you doing?Take care x & thank you for getting back to me x

Hi Mower

Back home from work so just catching up on my mail again!  Your post only appears once so thanks for 'sending it again'. Hope the appointment comes through soon so that one way or another you both know what is going on (and hope it is better news than you are perhaps expecting too). Its good that you can deal with these things on your Dad;s behalf.  I have Power of Attorney for my Mum and to be honest it does make it a little easier although I always run things past her, she does not always remember me doing so!

I am 'managing' okay on a day to day basis (obvious hiccups along the way but only to be expected I think.). Watched a drama on tv last night and though it was about a different cancer to what my hubby had, I lost a friend to the sane kind of cancer around this time last year and it reminded me of her struggles and triumphs through her journey (I was so proud of her way of dealing with it and we spent some fun times (when she was well as well as when she was sick/on treatment) as she managed to fulfil so many of her bucket list wishes (she was first diagnosed in  her early thirties  and passed away just shortly before her 60th birthday!). She was totally inspirational and even supported me when we  learned of hubby's diagnosis.  There are some truly lovely people around.

Take care and chat again soon.  Jules x

Hi Jules

Sorry didn't get back sooner, my Dads appointment came today it's on the 14 May so not long to wait plus ask the care coordinator to come out & talk to my DAD before the appointment so it's not to much of a shock to him & me as this will be the first time it's been confirmed to us other then in the letter & ask what is a care coordinator & what do they do, hope your day was good as I just got back from my Dad's & off to bed in a bit as I'm up at 3am for work. You take care x

Hi Mower

Thats a very early start; do you work shifts? 

Am pleased you have at least got the appointment through for Dad as that must feel like you are moving forward a little, though can imagine you are both filled with some trepidation about what you may have to hear/discuss.  Remeber the forum is here for you anytime you need space to talk things through but am sure the care co-ordinator will be able to answer many of your questions. Are they attached to the GP surgery or the hospital (my hubby had links to both). Take care of yourself and hope Dad not finding things too difficult just now.  Regards  Julie x

Hi Jules

The care coordinator is a new thing the GP is doing as the hospital as told them I think, that's all I know still waiting for care coordinator to get back to me & my Dad still don't know he has cancer,he just told me all the back of his gum is playing him up & back teeth as can't eat on that side & the ulcer is under his tongue on the base, I got a feeling it's not going to be good news I do hope I m wrong, you take care & thanks for getting back to me x