Ddcoo tongue cancer update No 6.

[Ddcoo]

What can I say but a huge thank you to you all who have carried on reading my story, you really do get me very emotional when I read your comments and support and I am so grateful. It was a couple of busy and very tiring days on Thursday and Friday and I thank Annie for giving you all the updates. As you know I was more than relieved to know that there was no sign of cancer in my lungs from the CT scan and I must admit that I shed a few tears of relief/ I don't know what I would have done if the result had been different; so here I am again with renewed vigour to fight the battle in fron of me in 10 days time.

As Annie told you I went to Leeds and saw a lovely lady about the fitting of the mask. When I went in the mould room, my mask was sitting on the bed, it was rather alien at first to see my face moulded in plastic mesh.
We discussed how uncomfortable it had been last week, then we discussedways of relaxing while the mask was clipped over my face and secured on the radiology machine and then we had a trial run. We took it slowly and when the final 2 clips were in place I felt much easier. I can still feel the mask against my adams apple when I swallow but it is bearable. Another lady came into the room and agreed that it was a perfect fit and explained that it needed to be that way so that the radiation went where it should. I just wish that I could have spoken to these two ladies last week when the problem arose.

I then went to see a nurse because the site on my wrist where they took the flesh for my tongue had gone very scabby and tight around the skin graft and it was weeping a bit so she took a swab to see if there is any infection, but I think it is just the healing process. The scar from my wrist to elbow is much the same, some of it is scabbing and pulling the skin tight, so it will heal better in a couple of weeks. My neck too is very tight where the staples were, so all the scars seem to be going through a different phase. This is all so new to me as I have never had a stitch in my life till I started the biopsy in November, it would be a good idea to print a leaflet to explain the healing process and what to expect.

So now I have a week or so of just resting before I start the radiotherapy and chemo on 30th Jan, this day is just a trip to Leeds to get blood tests etc and final marking lines of the mask and then the next day I start the treatment proper. I will hopefully be OK for the first couple of weeks until the build up of radiotherapy does its worst and I should be able to keep posting until then, but will get Annie to post for me if things get tough.
I would just like to mention here my dear partner, who has been my support, my chauffeur, my friend, my crying partner, my cook and even washed me, without him I would not have coped and I love him dearly.
We often take our relationships for granted but believe me when the chips are down and you have someone like him, you really appreciate them.
You know I really appreciate all of you too, you have bought me so much strength to carry on and I do thank you for not making me feel that you don't want me to carry on posting. Bless you.

[AuntieMoosie]

Oh Di I'm so glad that they have sorted the mask issue out now because I know that was causing you a lot of distress hun.

It's great that your partner is looking after you so well, that's love for you :D

I know you still have a lot more to face hun, and we'll all be with you every step of the way :)

Keep going Di, you're an amazing example of bravery and courage and I'm so proud of you :D

:hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs: :hugs:

[cattia]

That's all really positive, and so great to hear that you have such amazing support from your partner too as I am sure that makes all the difference. Keep looking after yourself and take it as easy as you can, sending you lots of strength x

[swgrl09]

sending a million hugs .. :hugs: :hugs: :hugs: so glad the ct scans were clear, such a relief to hear

[reddevil]

Sending hugs

[pinkdove]

:hugs: what a brave lovely lady you are, good luck in your recovery xxxx

[Tessar]

Ddcoo, it was such a relief reading the update Annie put up to say the CT was clear. It's funny, well, not funny really as this is of course a serious matter but on Thursday I kept finding myself thinking about you & wondering how you were getting on. Its your compelling story, your amazing resolve & spirited nature that makes me feel drawn to read your posts.

It doesn't surprise me in the slightest that you've felt so emotional reading all the comments & support. First time I stuck a note on one of your posts I felt a bit like a gate-crasher because I'd not exchanged any posts with you before, Di but now I feel really glad I did because it is a privilege to be involved in a meaningful & warm exchange with so many kind-hearted people.

I think you're more than entitled to have shed a few tears of relief at least now that is one thing on your list that is out of the way... Something ticked off. That's what I like about you Di, all this "renewed vigour" and talk of "fight" .... That's why everyone reads your posts because you ARE full of fight.

So did the mask really look like you then, not to say you look like an alien of course! That's the kind of daft question I ask that usually gets me laughed at ... But I thought I'd ask anyway, after all if anyone laughs then they'll be laughing with me and not at me so that's ok. It's brilliant that the mask felt easier. If I'm honest I can't really pretend to imagine what it's like, maybe that's because I'd be scared to. So this is why I know you are a brave lady. Oh and that's another thing ticked off on your list isn't it, knowing that it will be tolerable...

Your poor wrist & arm, not to mention your neck that must be so uncomfortable. Remind me never to whinge & whine about a paper cut again. We're u able to suggest to them about giving people a leaflet (or is that another daft question)?

At least u can take it easy for a bit, You more than deserve it that's for sure. And here's a little something for your lovely partner .... He sounds wonderful.. :flowers::huh::flowers::blush::flowers::):flowers: :D:flowers::)

Lastly, there's no way I'd want you to stop posting now.... I positively WANT to know how u are doing, it's become important to me just like news from everyone else on here as you're all my friends now.

[mandshere2000]

Hi dbcoo
:hugs:coming your way, you really are a wonderful lady, so brave so lovely
So glad the CT scan came back ok, and will be thinking of you on the 30th when your
treatment starts
:hugs:also to your wonderful partner.....so glad you have him to support you
Manda xx

[SamanthaAU]

You are such a brave, inspirational woman!! I am so glad the mask is feeling a little better.

And what an amazing man your partner is, I am so glad you have each other xxx

[Eek]

So glad the CT scan was clear and that you got your mask sorted. I'll be thinking of you on the 30th when your treatment starts sending big :bighug1:

[Ddcoo]

I have had a set back today and one I was hoping wouldm't happen. I get vertigo (dizziness) if my head lays in a straight line with my body or if I look up and to the right, so I am not sure how I did this, maybe it was when my mask was being refitted at hospital, or maybe at home but this morning at 3.15am when I got up to make a call of nature my legs were very wobbly and then when I got up at 8.30am they were even worse, I knew instinctively that it was my virtigo back, so I got in touch with NHS Direct and within the hour a doctor had phoned me and left a prescription for me, so my partner went and picked them up, so now I am hoping to get this under control before I start the radiotherapy.

I hate feeling dizzy as we all do who suffer with health anxiety, it just seems to take away what confidence we have. When mine gets bad I can't even stand up without holding on to walls etc.

Anyway, it will get sorted and if it doesn't then there is Plan B and that would be to hire one of the rooms at Jimmys hospital for 7 weeks while I have my treatment, then I wouldn't have to do the hour long journey each morning, but I will wait and see how I get on with the tablets as they worked within a few days last year.

I feel this post is going to be boring because I am writing as if I was talking to an old friend with a very friendly ear. These set backs happen, but just think; by about May, I will be able to say, I have stopped the treatment and I am on the mend.

Tessar, I didn't suggest a fact sheet on healing wounds, but I think I will mention it to the Macmillan nurse at hospital, I wish they had given me one. My mask doesn't look like me as there are no wrinkles (ha ha). When I have finished the treatment they ask you if you want to keep your mask and at first I thought I wouldn't want it, but now I think I will keep it and see if I can put a picture of it somewhere on the site, but as I am not at all technical I will have to find out if it would be possible.

If anyone wants to look at a mask, I did a bit of search on the internet and on the subject line I put RADIOTHERAPY FACE MASKS and all sorts of sites came up, the mask I have is a plastic mesh that covers my face and shoulders. Anyway thats the news for now and again thank you to all of you. Di x

[Annie0904]

Your posts are never boring and you are talking to new friends with very friendly ears but we feel like we have known you even longer :D. You will be fit and well in time for better weather (if we ever get any that is!). I googled the masks...looks like something from an action movie or maybe you could take up fencing after and use it for that? :D I hope the next few weeks go over really quickly and you will be on the road to recovery. I hope the vertigo disappears too. Lots more hugs :hugs::hugs: xx

[Ddcoo]

Thanks Annie, I am signing you up for my new fencing course, starting date 18th March, the day after the end of my chemo/radiotherapy, you will win because I will be exhausted lol. The masks are scary aren't they but I think by getting in the right frame of mind to be clipped down onto the bed for 20 mins a time will be the way to make it acceptable. ~When I was waiting at Leeds hospital to have my mask made, I was surprised to see how many were being taken along the corridor, so all those masks were for people like me with either head, neck or brain cancer, or like mine tongue cancer. It is marvellous what can be done.

[Annie0904]

We are so fortunate in some ways that medicine has advanced so much. My husbands dad died age 50 from a heart attack. My husband has had 2 heart attacks now and if it wasn't for the advancement in medicine I wouldn't have him here with me now. I know not everything can be cured still but there is a lot more than there used to be (in our younger days lol!!). You may still win me in that fencing match, my coordination is not all that good :D xxx

[panickyme]

Awwww Dd look at you go!!!!! (yep, definitely my hero) I am sorry I missed this, I have not been on recently. (even if I am not on, I am still thinking of you) Look at the progress you are making. Still staying strong. We can all learn a lesson from you. I am so happy for you that they made the mask so much more comfortable for you. I can't even imagine. I am so sorry you had that set back. I am petrified to feel dizzy, and look at you still standing tall, and fighting, after all that you have been through, and are still going through. YOU ARE AMAZING!!!!!!!! I can not even put into words, how proud I am of you. Please know I am always thinking of you, and keeping you in my prayers. Bless you my little buddy. :hugs::hugs::hugs:Thank you for taking the time to keep us updated, I look so forward to your post. Please get rest, and best of luck with everything that is coming up. :hugs::hugs: Debbi

[bronte]

your a very brave lady sending hugs x

[Annie0904]

I spoke to Di today and she sounded much more cheerful, she had been out to the supermarket, so brave, She is a very courageous lady more hugs for Di :hugs::hugs::hugs:

[Twinsmummy]

I shed a little tear reading your posts this time Di, I am so glad the mask is more bearable and that your CT scan was clear and three cheers for your partner.

I only had vertigo for a time when pregnant and it was deeply unpleasant, so I'm glad that has subsided too.

All the very best for the beginning of your treatment.

Cx

[swgrl09]

:hugs::hugs::hugs:

[Magic]

:hugs::hugs::hugs:

[ricardo]

:hugs::hugs::hugs:

[Anxious_gal]

Glad you are doing ok and the nurses are being helpful.
Sorry about the dizziness, I assume it must be pretty bad : (
I get dizziness a lot, but occasionally I'll get a short episode where the room seems to spin and my vision goes funny and it makes t so you basically can't function.
I hope the medication helps, dizziness is a horrible thing, it's hard to even explain how horrible it is unless you have felt it yourself : )
It's good you have have the option of staying near the hospital if you need to, but I know it'd be much better if you were able to stay home and then simply drive to your appointments.

Have they told you what to expect with the radiation and chemo?
I guess you'll be feeling pretty rough for a while, but that will pass and soon you will be better : )

All you can do is take it one day at a time, it sucks how anxiety gives you an extra million little things to worry about but you seem to have a good medical team looking after you :)

It sucks when you get sick and can't avoid it, I know with anxiety sometimes you just don't want to deal with things or feel that you can't but then when you are sick you are forced to confront all your fears, but in the end it will make you stronger, I mean if you can kick cancers ass then you can pretty much do anything : )

[panickyme]

Sending you lots of love, and hugs!!!!!! :hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs:

[AuntieMoosie]

Sending you lots of gentle, healing hugs hun XXX

:hugs::hugs::hugs::hugs::hugs::hugs::hugs::hugs:

[Justinf]

total legend as always:):D:hugs: