View Full Version : Ddcoo tongue cancer update No 5
Goodmorning all my lovely supporters, I have just read all your threads on my last update and am extremely humbled, thank you all so much once again. Yesterday I went to Leeds Oncology Centre, what a magnificent new place that is, so relaxing, big, bright, clean. I wasn't there long when my name was called and I was taken into a room that makes the face masks that pin you down while having radiotherapy. Sheets of plastic are warmed then pressed over your face and shoulders and then have to set.It wasn't the most pleasant experience but not as bad as what I had to come.
A little later I was called again and this time I went into a room and had a canula fitted. This time I had to have a CT scan done with my new face mask press studded onto the scanner table and I was OK up until they fixed the last couple of press studs but they were too tight to bear round my throat and I couldn't even swallow so I told them I couldn't do it, they tried a couple of times but then the guy that made the mask came into the room and manoevoured my head and neck slightly and he said that if I couldn't tolerate the mask then I would have to abandon the treatment. By this time I was really het up and I had to try and relax enough for them to do the scan. The trouble is, I have to wear this mask for 12 minutes each day from Mon to Fri when I have my treatment and I am going to have to find something to calm me during this treatment.
Finally an interview with the radiologist who confirmed that the treatment I will have will ensure there is no cancer at the end of the treatment, so I really don't have any choice, but I will be honest with you I am really scared that I can't tolerate that mask. We were at Leeds for 5 hours in all and I was exhausted at the end of it with the stress. On top of this I am still only 3 weeks from having major surgery. Every time I feel I am making a bit of headway, my body has to cope with something else. The three teeth I had extracted were painful all day yesterday too.
This really is a "poor me" post today isn't it, but my sense of humour seems to have abandoned me. I promise I will dig deep to go through this and hopefully help some of you to gain strength with your own health problems. As I have said before, if I can help anyone, I will.
So today and for the next few days my partner and I are not going anywhere, I can just rest up and I thank you from the bottom of my heart to each one of you for your kind words, thoughts and prayers, please keep them coming as I need your strength. Bless you all.
Honestly, you really arent "poor me" and if you were who would blame you eh? After everything you describe here it is no surprise to me that your sense of humour has abandoned you. Its still there, lurking around but a more serious side of you has taken over here, thats the side which is driving you on through all of this and allowing you to dig deep already.
Believe me you are ALREADY helping people. To read that you, such a brave and courageous person (who has faced everything so far and knows what there is to come) feels extremely humbled at reading peoples comments - well, what can I say? That the feeling is mutual & deeply felt.
I'm very glad the interview with the radiologist confirmed your treatment will ensure there is no cancer at the end of it. That is important and something very positive to hold onto. This is one of the things that's going to keep you strong. I guess the making headway you talk of and then your body having to cope with something else is the rocky road you find yourself on at the moment. There's gonna be a better place you find yourself in soon and for sure there's people here who want to be there to support you along the way there.
Feeling you have no choice here is both a positive thing in that it makes the decision for you but like for everyone it must be hard hard having to relinquish control, especially when they're putting something over you that just makes you want to shout "get the hell off me"!! When you think that some people will endure treatments just to so called "look better", it amazes me. This is very different though because you're facing many darn scary things. No wonder you were exhausted. I dont know much about these matters. Are they able to give you a sedative or anything? For myself generally when I'm facing something I really dont want to do, much of my reassurance comes from telling myself "it'll be over soon". Then when I look back, I'll realise that yes it wasnt very nice but I did get through.
Focusing your mind somewhere will be important. Using deep breathing techniques. Pinpointing your mind on something and keeping it there. Often in the dentists chair I find I fixate on something on the ceiling. I just stare at it intensely & it becomes my focus. I may have moments of wanting to jump out of the chair, tell the dentist to stop coz I dont feel well or it hurts or even tho I dont generally panic I'm now thinking I cant swallow or I want to but cant becuase he's poking me about. But each time I do manage to get past all of this & survive. The longest treatment I endured was an hour. It was an ordeal but I did get through. So maybe the 12 mins. will sound alot but there might be a way of breaking it into segments. Have a line of thoughts at the ready, things to focus on. Well, that's how i've coped myself but maybe other people here have got good ideas too. I know, you could try to remember as many of the id's people have here, particularly the unusual or funny ones. Bit like on the generation game when the cuddly toys etc were going along on the conveyor belt (showing my age now). If you can only remember one or two, you'll just have repeat them over & over in your mind.
You've shown such strength already, when it comes to it most likely you will face the fear. I wouldnt want to be stuck down like that but I imagine if I did, I would have to find my way of coping. Brave lady, I hope that my waffling are helpful in some way. Seriously you deserve to rest up. You can refill that nice warm heart of yours now with everyones warmth that is sure to come your way.
Look forward to hearing your updates Di. What a journey you have been on! Keep the faith.
You keep on in there, sounds like your doing very well.
Good luck for rest of the treatment.
So Proud of you, :yesyes: I know that must of been so hard for you, but once again you have found the courage, strength, and bravery, to get through. (you are the best!) I am so happy for you that you finally get a break for a couple of days to rest up, and let things just heal. Just keep that chin up, keep plugging away, and I know there is light at the end of this tunnel, and many better days for you ahead. Just remember you have a huge support team pulling for you, and none of us are going to let anything happen to you. You keep reaching in those pockets for a little more fight, and before you know it, this will all be over. Thank you so much for taking the time to let us know how you are. I think about you so much my friend. Love, Luck, and Lollipops. Hope you feel better soon. :hugs::hugs::hugs:
Very brave lady indeed, Keep going ddcoo.
Sending you lots of love and hugs:hugs::hugs::hugs:
Please DO NOT WORRY about helping others!!! You have been so positive and such a strength, it is time that you lean on others because you truly deserve support and that is why we come and read your posts. I wish I could do more than just post supportive replies and that we are praying for you! I am so amazed at how you have handled this and I truly hope you take time to feel what you need to feel and allow others to help you. You are such a caring person to want to help others while you are going through so much, but it honestly is time for us to care for you!
miggymoggy
12-01-13, 16:30
HIya. Just wanted to say you are being soooo brave. You will look back on this and laugh -believe it or not - once it's all over and done with and you can get on with your life.
Can you ask for a diazepam (valium) to take half hour before you put the mask on. They really calm you down to the stage where you don't care - I'm terrified of flying but if I take one then it's a breeze! Need at least 5 or 10mg though I would imagine - and you wouldn't be able to drive afterwards.
AuntieMoosie
12-01-13, 17:01
Aww Di I'm so sorry that it was distressing for you hun.
I wouldn't really like the mask either. Maybe once you've done it once, it will become kind of easier to do, I do hope so hun.
Di you're going through a real tough time right now and I think you're doing so brilliantly, it's enough to drag anyone down hun so don't you be feeling bad about that at all :)
You are an inspiration to so many of us on NMP and we're all so proud of you :)
I'm sending you loads of gentle hugs, thinking of you always Di :)
:hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:
Di,
You amaze me more and more every time you write. You truly are an inspiration to us all. God Bless You :hugs::hugs:
Just want to send more and more big hugs to my lovely friend :bighug1::bighug1::bighug1::bighug1:
Anxious_gal
12-01-13, 20:47
does the mask have to be so tight around your throat?
Does it hurt, can you breathe well enough with it?
I had to google the mask for a visual, I assume the one you have covers your face and chest and basically holds you down?
I really wonder if it needs to be that tight.
I am extremely claustrophobic and I can't tolerate anything on my neck.
I think it is natural, your body and mind will resist to being held down and having so much pressure or tightness around your throat.
Maybe something like Bagerbalm, it has essential oils in it and you can rub it any where on your skin, but I don't know if you are allowed that in treatment.
What about meditation? or visualization meditation?
I use the visualization a lot.
I often will imagine a peaceful place, put effort I guess into building it up so it feels real. Imagine the smells, sounds, feelings, sights and all that.
It could be a way for you to escape the the physical sensations of the mask, long enough to tolerate the 12 minutes.
Or what about wearing the mask at home, if you can practice getting used to it?
Have they offered you a sedative? It may help if taken half an hour before treatment to keep you calm enough to get through it.
Would it help if you had them call out how many minutes you had left?
I'm so sorry you are in such a position! We all know you know you need to have the treatment, but we know too how hard it can be to stay calm and to put up with an uncomfortable experience.
What operation will you be having?
I wonder if CBT could help a bit with the stress, or even the CBT4panic course you could do at home.
You are allowed to feel down :)
It's only natural you have days where you feel stressed and tired.
All you can do is be very good to yourself.
I found a 40 page PDF booklet on CBT, it might be helpful :) http://www.getselfhelp.co.uk/docs/SelfHelpCourse.pdf
sending loads of hugs and good wishes your way your such a brave person get better soon xx
Always thinking of you my hero!!!!! :hugs::hugs::hugs:
Twinsmummy
14-01-13, 12:46
The mask does sound awful, I'm not sure I understand why it needs to be so tight on your throat, I can understand them needing to immobilise your head. I think you or your husband need to speak to them ahead of time to see if there is anything they can suggest to help, altering the mask or as others have suggested, a sedative? I had to have a head/neck MRI that they told me they would have to immobilise my head for. It wasn't nice but I just closed my eyes and breathed through it, didn't open my eyes once until they pulled me out. Would they let you wear some headphones and listen to some music to disract you?
I am truly sorry you are having to go through this and I send you heartfelt best wishes.
Cx
Aww Di that sounds hard. Well done!
how about trying to plan something nice and think about that whn you are having your treatment! i like to look forward to holidays and distract myself this way.
Sometimes I even press book it (but obviously dont' pay) when I am surfing holiday stuff. Such a sad case!
xx
I phoned the MacMillan nurse today and explained about the discomfort of the mask and she has contacted my radiologist and asked him to look at the problem and I will get a chance to discuss this with him when I visit hospital on Thursday, but she says I should not have to have discomfort. The problem is my throat is so hard and sore from surgery that there is no flexibility there and apparently when the masks cool down they shrink slightly and it was enough to make me feel as if I was being strangled, so I will see what happens on Thursday.
that's really good news. I'm glad they are going to take a look, must be reassuring to know it's in hand. :hugs::):winks::wacko::flowers: :hugs::):winks::wacko::flowers: :hugs::):winks::wacko::flowers: :hugs::):winks::wacko::flowers: :hugs::):winks::wacko::flowers: :hugs::):winks::wacko::flowers:
I hope they find a way to make this more comfortable for you, you have been through so much. Bless you. Always thinking of you. :hugs::hugs:
Hopefully the mask can be made more bearable, thinking of you and sending big :bighug1:
AuntieMoosie
15-01-13, 03:41
I'm so glad you contacted the MacMillan nurse and that she is going to speak with the radiologist about it Di. I really don't think you should have to be in any more discomfort, I'm sure they'll be able to work with you to make this treatment more bearable for you. I don't like having anything in contact with my neck either, let alone trying to heal and recover from such a huge operation, no wonder it was so painful for you.
I hope it's more successful for you on Thursday, I'll be thinking of you hun :)
:hugs: :hugs: :hugs: :hugs:
Your story is so humbling.
sending you much love and big hugs :bighug1:xx
Ddcoo,
Sendng you hugs :hugs::hugs::hugs::hugs:xx
A little update on the tight mask problem. Yesterday afternoon I had a phone call from a Macmillan nurse in Leeds hospital and she has arranged for meto go on Friday afternoon to get the mask checked and to see where the problem is and rectify it. She said that I should not be in discomfort when using the mask, it is bad enough having to wear them let alone having discomfort too. So I will report back on that on Friday.
The day before on Thursday I get the results of my CT scan I had done last week to see if there are any signs of abnormality in my lungs, I must admit after everything that has happened lately I am just hoping there are no problems there.
It is all a bit daunting, but I know a lot of time and NHS money has been spent on me to enable my survival, so I have to take all the treatment offered to me.
If any of you are worried about having hospital procedures done, just try and remember that they are being done for your benefit, peace of mind and survival, I know sometimesI get so wrapped up about my own fears of the unknown that I lose track of the real outcome, which is me surviving and enjoying life for a lot more years.
If you have fears of a certain illness, get them checked because IF your fears are correct, then an early diagnosis is imperative, just like my case.
If there is nothing wrong, you will still have peace of mind.
I didn't mean this to be a lecture, but going through this has made me realise that when things are serious we have the best support system here in the UK.
Here's to a healthy new year to you all.
:blush::D Thinking about yuoooooooooooooooo :blush::D
Will be thinking about you tomorrow when you get the results of your CT scan. lots of hugs for you :bighug1::bighug1::bighug1::bighug1: xx
Anxious_gal
18-01-13, 05:59
Good luck with today :)
Good luck with the CT scan :bighug1:
mandshere2000
18-01-13, 07:14
Wow what a lady, reading your posts really makes
me put my issues in prespective, sending lots of :hugs:
to you and hoping your CT scan goes ok
Manda xx
Ddcoo
I don't have to tell you how many people on here are following your battle on a daily basis.
You really are an exceptional and seemingly calm person and an inspiration to us all.
Anyone who has read about your posts from day one must be touched by everything you are going through and you know there is a light at the end of the tunnel.
God Bless You :hugs:
Just to let you all know that Ddcoo' s CT scan results were clear :) Really pleased about that :yesyes: She is at the hospital again today to have the mask adjusted to try to make it more comfortable for her. Not sure if she will manage to get on here herself today. She really appreciates all the love and support you are all showing her. Thank you everyone and lots more hugs for Di :hugs::hugs::hugs: x
:) That is the best news!!!! So happy for her. Thank you Annie for the update. Dd you are doing such a great job, we are all so proud of you. :hugs::hugs::hugs::hugs::hugs::hugs:
That's great news! We are all sending her lots of love x
Really great news Ddcoo inspires us all
bluesparkle
18-01-13, 13:07
just stopping by to send some more :hugs:
you are doing brilliantly ...
and good news about the ct scan , and also they are going to sort the mask.
you really are a brave lady and yes you are right this is all going to be worth it.
we are with you every step of the way.
rach
x
Great news about the scan results. Hope the mask can be adjusted so it's not as uncomfortable sending big :bighug1:
I have been having such a good day and this is the icing on the cake.... Thanks for letting us know Annie and to u Ddcoo yyiiiipppeeeeeee I feel ssooooo veryyy happyyyy for you!
Sending you hugs ddcoo:hugs::hugs::hugs:xx
That is so wonderful to hear. Thanks, Annie, for keeping us posted. Ddcoo, you definitely can and will beat this. :bighug1:
Di has been to the hospital today and the mask is sorted so it is a lot more comfortable for her. She sounded much brighter and has managed to eat cottage pie, that really made my day to hear her say that :D I am sure she will get to update you all sometime over the weekend. She really is a special, courageous lady..lots more hugs for Ddcoo :hugs::hugs::hugs::hugs::hugs:
AuntieMoosie
18-01-13, 22:21
Oh that's brilliant news on both counts :yesyes:
I'm so glad the CT scan was clear and that they've sorted the mask too, that must be such a relief :D
It's so good that she's managed to eat Cottage Pie today too, that's a good sign :D
Sending loads more gentle, healing hugs hun :hugs::hugs::hugs::hugs:
Anxious_gal
19-01-13, 00:16
wonderful news :yesyes:
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