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Waiting

9 Jul 2019 12:47

Hi

First post and just wanting to hear if anybody lately has any info that I could use, so many questions dont know where to begin. 

Around a year ago and I don't go to the doctor really because have been lucky so far on my 57 years.

My nose kept running really badly with thick mucus and nose bleeds which were quite heavy, saw do tor 5 times and each time put this down to high blood pressure, not even attempting to look or even refer.

3 weeks ago thought I was having a stroke of some sorts and went to my local hospital, was admitted for 4 days, on final day and I had all the tests from MRI, CT, Chest etc I was told that they wanted to do another CT scan and that a Consultant from another hospital wanted to speak to me and have a look.

Had scan and met with the Consultant who looked up my nose and after chatting said really need to do an endoscopy on your left nasel which would be done in day surgery and to look at the histology report 

3 days later I have the op, this was on 12th June, another MRI scan a week later, was then told that an appointment for 12th of July to follow up.

Well took a call last Friday saying appointment cancelled for the 12th but could i do Monday. 8th, of course i said because just wanted to get some answers.

Was met by Surgeon who also had a clinical nurse with him, panic started and listened while he explained that i had very rare cancer in my nasel, wish i would have listened a bit more know but too many thoughts.

He explained that i would be going for a PET scan this Thursday or Friday to see if it had spread, he would be then discussing with his team which way to go and would arrange to see me next week.

Anyway feel better writing something down but still annoyed with my own doctor because Surgeon said I have had this for quite a while

Thanks

Waiting

11 Jul 2019 02:08 in response to Stat

Hi there , so sorry to hear your story , i do wish you well and hope you beat this , i cant sleep as i explained on another post on here that my dad on here was diagnosed on monday with cancer of the food pipe OC . He too saw his GP who totally missed his symptoms , im so angry with her failings . Your case is similar i think , your GP nota thorough enough , it is so bad i think , what can we do ? Im thinking the NHS is not what it once was , too many poor people holding jobs in very important areas who are affecting all our healths , as great as many nurses and surgeons are , i feel the whole service is sadly not getting better 

Waiting

12 Jul 2019 05:52 in response to mikkey71

Hi Mikkey

 

Thanks for reply and hope things with your dad going aswell as they can at this time.

I think I was just angry before because once you are in the system I have found that things going better now but it is a nightmare when things go wrong or people dont seem to listen at your local GPS.

Anyway was ment to have pet scan today but moved till next Tuesday then meeting Surgeon on the Thursday to discuss what he thinks should happen.

Had more bad news when he spoke to me seems like there is 2 types of C  on my nasel one of them they understand but the other one been sent to another pathologist because he was not happy with original diagnosis because to vague????, set me back a bit and to be honest still dont know how I can have 2 different types.

Anyway mikkey keep me updated about your dad and take care

Waiting

12 Jul 2019 07:33 in response to Stat

Hi there,

 

My name is Fran and I’m 31. Hey I am so sorry to hear your story and I will hold you in my prayers that you get hopeful results on Tuesday. 

 

I understand and how you are feeling I think. I had a colonoscopy last week and got results yesterday telling me there are cancerous cells . Another colonoscopy and CT scan booked for next week to find out more, what kind of cancer and how to treat it I think. I have never been so scared and yesterday I thought I wouldn’t even be able to get through an evening of waiting, let alone another possible 1-2 weeks. 

 

What are you doing to take care of yourself over the next few days? Have you got people around you to support you/ talk to you? I am going to focus on rest & eating healthy foods & taking supplements which will make my body stronger to fight off this piece of **** inside me. My friend who’s sister is a nutritionist is sending me some info on things to eat/ take. I can forward this to you too if you like.

 

Stay strong.

Waiting

12 Jul 2019 08:07 in response to FranR

Hi Fran

Thanks for your reply.

Must admit shocked is a word and after reading your post I fully understand where you are coming from.

I know things wont get easier for any of us but am kind of looking forward to finding out time scale etc and what treatments will happen and when.

I think that a plan has to be better than waiting around, I will still have around a 7/10 days after next week for treatment to start.

You mentioned healthy foods and supplements hope these taste good.

Take care

Waiting

12 Jul 2019 08:45 in response to Stat

It’s really the most horrible feeling. But some part of your mind takes over and starts to give hope and see a way of managing this. I agree with you, thinking about timescales, treatment, how to tackle it & not just giving in to despair. It is very frightening waiting to find out more/ what they’ll say they can do & in some way part of me feels ‘not knowing’ is worse. But you’ll get to Tuesday and get some more answers regarding treatment and so will I... & then we have the next step in our fight and no matter what happens, we are here and we will fight back. 

I have actually just made a bowl of yummy porridge with blueberries, chia seeds and nuts! 

Take care. 

 

Waiting

12 Jul 2019 09:11 in response to Stat

Hi Stat 

Just saw your reply , im really sorry for your diagnosis , what horrible news to recieve .  And im with you regarding failings to diagnosis , it is very poor , the GP who treated my dad for ear infection , tonsill infection avoids my dad now at the surgery . It tells me she is badly at fault . Try to not worry too much yourself ive heard your diagnosis is very treatable and you must stay positive . My dad is 69 i am so close to him , i am drained and in bits watching him with this vile disease as he cant eat solid food . Im not sleeping and the waiting times i feel is terrible for such serious issues . I will let you know what his MRI scan says , and i wish you the best of luck fighting this disease that needs eradicating as its a scurge on us.

Waiting

12 Jul 2019 10:20 in response to mikkey71

Hi Mikkey

Please please let me no the results of the scan, I thinking of you, also try and get some rest etc because you have to stay strong for everyone 

 

Take care Mikkey

Waiting

12 Jul 2019 12:49 in response to Stat

Hi

 

Well letter just arrived from Consultant to myself and 1 to my GP.

Seems I gave nasopharyngeal carinoma and adenoid.

Anyway will find out next Thursday when have meeting with everyone 

Thanks

Waiting

13 Jul 2019 21:58 in response to Stat

Hi Stat 

Just saw your nice reply , thank you so much , i will do , Dad getting weaker by the day , MRI cant come soon enough . 

Hope you every bit of luck too my friend on Tuesday and Thursday , stay strong , let me know how you get on .

Wish i could sleep but nothing compared to my dads problems.  

Cheers Stat mate and take care

Waiting

20 Jul 2019 14:57 in response to mikkey71

Hi

Well had pet scan then Thursday meeting with Consultant and team.

Have got to 2 types of tumour but kind of good news that had not spread as much.

Had Dentist x ray and found out have to have couple out before treatment starts, blood, Dieticians, oncologist and then signed concent form.

Because where the problem is he said it is inoperable but curable with radiotherapy, course will be 30 goes Monday to Friday with weekends off lol.

Go next week for few more bits and pieces like fitting for mask and shoulder and speech therapist etc.

Treatment should start around 10 days from now, mentioned that may have to have bit of chemo but at moment just radiotherapy. 

Well feel better now and seems strange but just wanting to get on with it

Take care

Waiting

2 Aug 2019 05:34 in response to Stat

Hi

Well had mould and mask all fitted with ct scan, dentist worse had to have couple removed, waiting to go and have peg fitted and start the RT on August 14th, 35 treatments which seems normal from what I hear.

Take care

Waiting

14 Aug 2019 08:48 in response to Stat

Well just leaving for 1st Rad, glad in a way that waiting over.