Sent this to Macmillan Helpline today: Not sure why, but I really need someone to talk to about it.
Hello,
Not really sure why I am typing this ... as I am still in a bit of a daze really.
I am a 42 year old mother of four.
I was diagnosed when 16 with Hodgkins Disease. I was treated with surgery and radiotherapy from lower jaw - waist. I was discharged from the oncologist in 2006.
In 2005 I was diagnosed with DCIS of my left breast and a double mastectomy was performed, also then being discharged from the Breast Cancer Clinic in 2006.
2007 was hospital free year for me.
BUT on Tuesday, I was diagnosed with Mucoepidermoid Carcinoma of the Saliva Gland.
I am due for a WLE on 10th March. Obviously the results of this will depend on what happens next.
I am totally shocked, I wasnt expecting to be told that the lump that was removed was cancerous, as on first impressions it was a polyp. I went into see the consultant on my own, and really and truly was not in a state of mind to ask questions.
I dont seem to have been able to find info on the internet about it, and could really do with having someone to talk to, about my concerns.
I'm not sure, you would have anyone either locally, or who could talk to me via the telephone.
My contact details are ********
Friday 29 February 2008
Bad Breath
DH and I haven't had time to sit and talk, the only time we seem to get is the 20 minutes in bed before we get up.
As usual he holds me so tight, but I have been pushing him away.
How can he kiss me - with this in my mouth - I cant stand it. My breath is disgusting, and I have been scrubbing my teeth and tongue so many times each day - but it doesn't help.
As usual he holds me so tight, but I have been pushing him away.
How can he kiss me - with this in my mouth - I cant stand it. My breath is disgusting, and I have been scrubbing my teeth and tongue so many times each day - but it doesn't help.
Wednesday 27 February 2008
Phoning Round
I have now phoned and spoke to those I felt needed to hear it from me.
I feel really sorry for my dad, he has all day just to mull it over, with no one to talk to ... I have tried to make light of it to him. I tried to explain about the problems with the radiation if needed, he doesn't quite understand.
Apart from the the couple of hours sat down here before dawn today, I haven't spent a moment on my own. I guess that's when its gonna hit home properly. I am still in dis-belief really, and even though my admission letter arrived today, and I have read all the leaflets about hospital services etc, its still not really happening to me.
DH opened the wine tonight and I have already downed two large glasses.
I feel really sorry for my dad, he has all day just to mull it over, with no one to talk to ... I have tried to make light of it to him. I tried to explain about the problems with the radiation if needed, he doesn't quite understand.
Apart from the the couple of hours sat down here before dawn today, I haven't spent a moment on my own. I guess that's when its gonna hit home properly. I am still in dis-belief really, and even though my admission letter arrived today, and I have read all the leaflets about hospital services etc, its still not really happening to me.
DH opened the wine tonight and I have already downed two large glasses.
Bloods taken
My Gp managed to get all the blood they needed in one go - thankfully.
Which meant I didn't have to go over to Taunton to the hospital again today.
I asked him about radiation. Normally (according to the little info there is on the internet) this type of cancer is treated with Surgery plus radiation. I was 'saturated' with radiation in 1981 from lower jaw - waist back and front. I have always been told that I could not have any more radiation in that area again.
So I asked GP, if he thought my cheek would still be allowed to be zapped. He was totally honest with me and said that he had never known anyone with this before. But he would assume that my cheek would be allowed to be treated. It will depend obviously on spread and if it goes down into my jaw area. Also will depend how much after the final operation how much face I still have left - to put it bluntly.
Not sure about hospital stay, will all depend on how quickly I am able to get fluids down. I will be on a drip in the meantime.
I was told to anticipate 3-4 days I know its very small in comparison to having my mastectomies, but I am more scared!
Which meant I didn't have to go over to Taunton to the hospital again today.
I asked him about radiation. Normally (according to the little info there is on the internet) this type of cancer is treated with Surgery plus radiation. I was 'saturated' with radiation in 1981 from lower jaw - waist back and front. I have always been told that I could not have any more radiation in that area again.
So I asked GP, if he thought my cheek would still be allowed to be zapped. He was totally honest with me and said that he had never known anyone with this before. But he would assume that my cheek would be allowed to be treated. It will depend obviously on spread and if it goes down into my jaw area. Also will depend how much after the final operation how much face I still have left - to put it bluntly.
Not sure about hospital stay, will all depend on how quickly I am able to get fluids down. I will be on a drip in the meantime.
I was told to anticipate 3-4 days I know its very small in comparison to having my mastectomies, but I am more scared!
Shocked
Been laid awake since about 2.40am, just had to get up and make a coffee.
I have that sick feeling in my stomach. I've already had the 'perhaps I will see if I can loose some weight in the 12 days before my admission' thought- might help with the anaesthetic etc.
Then I think fuck it, why starve myself now when I wont be able to eat for a properly for a good week after surgery. So I am currently ramming custard creams down my throat, whilst trying to stop choking through the tears that have suddenly come on, whilst I sit here solo.
I never did feel like a proper breast cancer patient. Being lucky enough to avoid chemo. Didn't mean I wanted to be a fully fledged cancer patient though.
Yesterday was a blur. I had plenty of phone calls from family and friends, but it seemed like I was talking about someone else.
I have that sick feeling in my stomach. I've already had the 'perhaps I will see if I can loose some weight in the 12 days before my admission' thought- might help with the anaesthetic etc.
Then I think fuck it, why starve myself now when I wont be able to eat for a properly for a good week after surgery. So I am currently ramming custard creams down my throat, whilst trying to stop choking through the tears that have suddenly come on, whilst I sit here solo.
I never did feel like a proper breast cancer patient. Being lucky enough to avoid chemo. Didn't mean I wanted to be a fully fledged cancer patient though.
Yesterday was a blur. I had plenty of phone calls from family and friends, but it seemed like I was talking about someone else.
Tuesday 26 February 2008
I dont believe it
DH's work colleague came with me to the hospital. I'm so glad that she came with me now.
Went in about 45 mins late, and saw another doctor, who introduced himself, as Mr Graham Merrick who would be taking over my care. So straight away, I knew it wasn't finished with.
I've looked him up on the internet, and he seems very qualified, along with plastic surgery too.
I have Mucoepidermoid Carcinoma of the salivary gland
Mr Merrick explained that the tumour which was removed measured about 1cm in diameter, but felt that a larger area needed to be removed and examined.
I asked him if he felt it was connected with my Breast Cancer, to which he said no. But he couldn't rule out any connection with my Hodgkins Disease.
He went through the plans to remove a 50p size area of tissue, and to use other parts of my inner mouth to fill the hole.
Once that is examined, he will then make a decision what happens next. I have been allocated a MaxilloFacial Cancer Nurse - Jo somebody - she will be ring me over the next few days.
I then had to go to Pre-op Assessment and have a ECG, weight etc. Their attempt at taking bloods (8 bottles, 23 mls needed) were unsuccessful. I was told to go to my GP this afternoon to get him to do that.
Home to DH, who looks terrible, completely white washed!
Then down to my GP for bloods, he said it was too late in the day, and will do it tomorrow morning. Asked about my constant headache, which he feels is tension.
Feeling very numb, not had a cry as yet, just completely gob smacked to be honest!
Went in about 45 mins late, and saw another doctor, who introduced himself, as Mr Graham Merrick who would be taking over my care. So straight away, I knew it wasn't finished with.
I've looked him up on the internet, and he seems very qualified, along with plastic surgery too.
I have Mucoepidermoid Carcinoma of the salivary gland
Mr Merrick explained that the tumour which was removed measured about 1cm in diameter, but felt that a larger area needed to be removed and examined.
I asked him if he felt it was connected with my Breast Cancer, to which he said no. But he couldn't rule out any connection with my Hodgkins Disease.
He went through the plans to remove a 50p size area of tissue, and to use other parts of my inner mouth to fill the hole.
Once that is examined, he will then make a decision what happens next. I have been allocated a MaxilloFacial Cancer Nurse - Jo somebody - she will be ring me over the next few days.
I then had to go to Pre-op Assessment and have a ECG, weight etc. Their attempt at taking bloods (8 bottles, 23 mls needed) were unsuccessful. I was told to go to my GP this afternoon to get him to do that.
Home to DH, who looks terrible, completely white washed!
Then down to my GP for bloods, he said it was too late in the day, and will do it tomorrow morning. Asked about my constant headache, which he feels is tension.
Feeling very numb, not had a cry as yet, just completely gob smacked to be honest!
Friday 8 February 2008
Not feeling too bad today
Well the bruising and swelling seems to have gone. The stitches are holding on tight. I so wish they would just break off.
Just gotta wait for my letter now, saying everything is ok
Just gotta wait for my letter now, saying everything is ok
Friday 1 February 2008
Ouch
My mouth is very swollen and sore.
The stitch threads seem very long, and keep sticking to the back of my throat.
I am not going to work today, as I feel crap. My head hurts and I can hardly open my jaw.
I have attempted to rinse my mouth out with warm salted water, but it is so sore.
Talking is difficult, and I feel quite low today
The stitch threads seem very long, and keep sticking to the back of my throat.
I am not going to work today, as I feel crap. My head hurts and I can hardly open my jaw.
I have attempted to rinse my mouth out with warm salted water, but it is so sore.
Talking is difficult, and I feel quite low today
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