Hi all,

I don’t want to sound negative ungrateful or just selfish, but I constantly worry that "my" cancer is going to recur. I was diagnosed approx 1 year ago, and I find my self regularly drifting into WHAT IF. I try not to I consider myself to be quite resourceful given my circumstances and I actually try to be optimistic make plans for the future i.e. starting uni saving for a mortgage raising money for MCF I have never participated in anything like let alone raise money or speak to a bunch of strangers in a lecture theatre about MC, but I walk to uni and im thinking what will happen if the cancer comes back reading a book playing with my daughter Im ashamed to be dwelling on the unknown in many ways as I know im "cured"

but does anyone else get this anxiety the numbness of constant thought to be honest its so frustrating and irritating bluntly why am I regularly thinking about mortality rates I am just scared will my fear ever be alleviated is it a normal part of my everyday life now.

Mel x

Oh my goodness yes!
But - as the cliche goes- time is a great healer. You seem quite young and with a child as well. It really hurts thinking about the future (or possible lack of it).

I used to think about my poor wife and 3 daughters, 11 ,14 and 15 at the time. How would they cope without me!
I tried to develop a normal routine - kept taking anti-depressants which did (and still does) a good job.
I am working part time now and have been for a while. I enjoy what I do and that helps.

I have been clear for nearly 2 years now. I am emerging from my tunnel and leaving the bad memories behind. You will eventually do the same.

good luck - Tony K

Hi Melanie and Tony

Yes I agree that the fear of cancer returning never really goes away, it's something we have to learn to live with. A couple of months ago I was convinced something was starting up again, but I never want to worry any of my friends and family with this thought so I keep it all to myself.

I spent a couple of hours one day just thinking about what sort of funeral I wanted, and I composed a letter to my daughter and husband, I even wrote my own eulogy which I wanted my brother to read out on the day!. Somehow doing all this seemed to help, and it also made me realise that my life hadn't been a waste of time and that there are lots of things I'm proud of and grateful for.

The feeling of something returning petered out and the more positive feelings kicked in. We all handle these feelings and emotions differently. I am a bit of an ostrich (bury head in sand) but I find it works for me. Also my atitude to general health has changed, I was never one to be going to the doctors apart from the last year, I've probably only been to the doctors maybe once in 3 years, I'm more aware of my body now and I won't ever let anything that is worrying me go on because I don't want to 'bother' a doctor.

Tony is right when he says"time is a great healer" as more time goes by and your check ups are all fine you will gain confidence of your long term survival. It's very easy for us to give the same platitude "try not to worry", much harder to carry out.

All the very best for your continued progress.

Rosie

Melanie,

I do know exactly how you feel. Having had a scare recently, I felt extrememly strange when they pronounced the scan clear. I too feel quite possesive about "my cancer", which is really peculiar. I think that it has been such a major part of my life over the last year, that I'm really reluctant to let go, and return to my normal lifestyle. The cancer has defined what I am over the last year, and now I'm looking at returning to work, I'm going to have to reassess myself, and who I am.

I try to look on the positive side as far as the 'five year' statistics go. By their very nature these statistics relate to people who were diagnosed more than five years ago, and as the treatment of cancer is always changing then our chances should be better than those given in the statistics. Also because mouth cancer is fairly rare, these statistics don't seem to be gathered in the same way as more common types of cancer. I have spent a long time checking out the office of National statistics site, and all I've really managed to confirm is that I'm one in 100,000 (not one in a million as I think I really should be).

I think we all get ups and downs, and I think this is to be expected. Shortly after I was diagnosed I decided that I wanted to see my son graduate from university, so that gave me a five year plan. Having read some of your past postings it sounds to me as if you are doing everything you can to move forwards with your life, but are you perhaps taking on a little too much. You still may not be back to your full strength, so if help is offered from family or friends, then please do accept it.

On a more positive note, nearly one year on from my treatment I'm physically much stronger that I was just a few months ago. Have you noticed any changes recently?

This message has been edited. Last edited by: Jenni,

Hi Jenni,

My friends all sing from your hymn sheet and are subtle when they suggest I do a lot.
To be honest I have always been the same nothing has changed just my circumstances I suppose you would say think cancer would make me slow down but its as if I have to set my self more goals and achieve them because everything seems so uncertain now.

My Family don’t offer help they tend to sit back and watch (she’s fine!!!) they don’t offer much support in words they don’t know what to say I think! And they certainly don’t show their affection as long as one uncle aunt or cousin whoever has seen or heard from myself thus my daughter twice a month everything is fine!!!!!

I really don’t want to have a moan online about my family but I have hardly been overwhelmed with support especially through my most difficult times in hospital and radiotherapy so I tend to be quite self sufficient and resourceful and I just get on with it if I really need anything I tend to turn to two particular friends one is particularly supportive. I gloss over the service with family members and not much more it,s just easier for many different reasons and besides most of them are not capable of understanding much more.

As for my health again I just get on with it my sleeping patterns are not particular desirable but I no longer have to sleep in the day I use a tea spoon to eat and can barley open my mouth wide enough to bite a sandwich its the consequences I have to live with distorted speech ect and the way I feel about the "CANCER" RATHER THAN HOW I PHYSICALLY FEEL having said that my face and leg still give pain when 1 year after surgery, But when i think i could hardly walk or drive for weeks after the surgery and could not physically stand because of pain and exhausting affects of radiotheraphy i have come a long way.

To be honest it is exactly one year next Friday and I can’t believe how quickly its gone im in a completely different place physically emotionally everything about my life has changed I even moved house.

Mel x

Mel,

You really do seem to have had a tough time, your treatment was much more intense than mine. I can't imagine how you have managed to cope. It's quite overwhelming especially when you are so young and have a dependant child.

I'm sure you'll have checked with your macmillan nurse to see if there are any support groups in your area, but then you may find these difficult to attend, as you'd either have to take your daughter, or find childcare.

It's great you have some good friends, and really awful that your family is no use at all. Sometimes it is all to easy to build a facade that no-one can see behind. Also if they only see you for an hour, it's easy to look like everything is under control, but the day to day effort can be almost insurmountable. It's a matter of pride, but you could try dropping that front, and letting them know what's really going on. If they are concerned about your daughter, then maybe they could look after her or take her out for a couple of hours to give you some time to yourself. Honestly you won't be damaging your daughter in any way by doing this. As a mother myself I can understand that your world does tend to center about your child, but most of us are lucky enough to have partners or family that help to bear the load sometimes. I know that it's really difficult to ask for help, and as a result you don't always get the support you need when you need it. I definitely suffer from this myself, as I'm fiercly independant (my sisters words). When things got to rock bottom, my sister spoke to my son to find out how bad things were, and I have to say they were pretty rough, as I was unable to leave the house, and my husband got labrynthitis and was unable to move out of bed. I had expected that when I reached the worst point in my treatment my husband would be there to look after me, but it was not to be. Also I think that those closest to us, are also those most frightened by what is happening to us, and sometimes they just don't want to believe how much we are suffering.

If you are still feeling pain, as well as feeling down, then it could be worth talking to your GP. If you haven't got one where you are living now, then there may be a GP you can see at the university. Having looked round a few universities with my son, then this seems to be a fairly common facility. I know I was doing fine, or so I thought, for ages. But one week I went to the doctors, and cried in the surgery. Honestly they do understand, he told me it was probably a sort of delayed shock, and that most people with cancer have ups and downs, as well as the terrible fatigue I was suffering from.

I know it will be really difficult but do try to let your tutor at uni know how you are coping, and that you are currently experiencing emotional difficulties. If you find that you can't talk about it face to face, then write it down first. I can remember when I was in my early twenties, and my mother was seriously ill. I was unable to talk about it at work, and ended up in fairly serious trouble because I was not performing very well. Luckily my husband took charge, and phoned them up to tell them what was going on. I saw a company doctor, who eventually got to the bottom of the situation, but had to break down a lot of my barriers first. I'm a lot more open about things now, but I think that just maturity (or you can call it old age if you like). Anyway you tutor will be able to suggest ways to make your studies easier, and talk to your lecturers, so that they can adjust their expectations. I asked my doctor to write a letter for my sons college to be included with his end of examinations last spring, as his studies were disrupted by the aftereffects of my treatment, and my husband also suffered from labrynthitis, so my son was looking after both of us for a while.

I'm sure that the anniversary coming up is praying on your mind at the moment. But think how far you have come in that year.

Hi Jenni,

Thank you so much for your post,

pain is from my titanium implants of which "new teeth will be fixed (it cuts into my gum) pain when i laugh my leg is like i have constant pins and needles if my daughter sits on my lap in a awkward position. I have spoken to my consultant about the problems.

Please read private message Jenni

Mel x

Hi Melanieb

We all do it.

I can't count the number of times I have wondered if some symptom or other is a sign that it's back. If I get a pimple that doesn't go away in a week I worry that it's going to be a melanoma. Any soreness in the mouth is of course going to be a recurrence of the submandibular cancer of the salivary gland.


I think it's inevitable. We've been through such a drubbing that it's hard to believe it may be over, particularly when the treatment has left us with other symptoms, from loss of taste to dry mouth to inability to speak to disfigurement...

So far I take the view that I'm still here and breathing, still able to argue about it, and that it's now five and a half years, and that whatever I lost, I've also gained in terms of life expectancy and general well being.

Remission can fall over. The cancer can come back and we've read cases here where it has. But there are also those of us that are surviving for year upon year.

My present intention is to survive until at least 107, and then die during a particularly vigorous and unusual activity, whether in the boudoir or hanging from a parachute is not yet decided.

For me it's important to know that the whole bloody nonsense could start over again, except that it hasn't, and clinically it's no more likely to happen again than it was to happen the first time, and seeing it did happen the first time I've already used up that possibility.

And if it does happen again, I'll just have to put up with all the scans and the drugs and the awfulness of radiotherapy and the lying there strapped down wearing that horrible lifesaving mask while the CLINAC machine burns living tissue out of my neck, and live thru the endless injections and interventions and people making holes in my body and feeding me thru tubes, until it's gone.

I've done all that, and so have you in your way, and so have the others here. I think it's alright to look the bastard in the eye and say: oh no you don't. Not again, not here, not now, not me.

And if it does try again, it'll get the same hiding it got the first time, only now I know I can do it.


Philip
diagnosed February 21 2001
no further symptoms found since July 2001

By the way, I too have titanium implants and tomorrow will go down for the final checkup. The difference they make is incredible. Food is back in my life. Laughjing out loud is back. Smiling is back. Kissing is back (that's nice).

I wish you the very best of recovery, may the weird symptoms fade away, may you regain and recover your life. It'll never be the same, but you will feel better, and you'll still be here to feel it.

Philip

Thank you so much for you reply i laughed smiled and cried reading your message everything you said is right i wish you all the best in 07 and all the best until you decide on your exit in 107 all the best.

Mel x

Hi Melanie,

I concur with all of the above. I had the works, probably no different to you, 35 sessions radio coupled with chemo then major neck section which removed most of my left shoulder muscle/nerves etc etc. Mine all started 2 years ago this April 7th (not that it sticks in my mind or anything)

Your feelings are nothing more than a natural reaction and we (i believe) have all experienced them. I still have my paranoia times (but nobody ever died of paranoia)

A major fitness fanatic/squash player etc etc and a self employed electrician I believed I was bulletproof.

My angle on the whole thing was and is to,as well as accepting the conventional treatments and assistance, attack this little cretinous invader on my own terms as well and send it on to someone more deserving.

I took some great homeopathic advice and studied the web/books etc and formulated my own recipe for daily treatment. This involved regaining my fitness taking more supplements than the Sunday Times has and eating very well. As a result of this I am now back to a better fitness level than I was before Cancer, I play No 1 for asquash team that I used to play No 3 or 4 for (I'm 51 by the way). So thankyou Cancer for a new lease of life.

Our motto was and still is KFC ( Kill the F.... C.... I'll let you fill in the gaps)

If you feel like you are in control of some of the fight then the paranoia should decrease. Rather than worrying about it every day give a dail kicking.

I have a little recipe of daily KFC stuff, if you want it please contact me at Challenger317@hotmail,.com

Good Luck for the very long future

Phil Challenger

Isle of Man

Thanks Phil
Mel x