Newbie

Hi,

Really sorry to hear your news, it is always a huge shock and you don't know here to turn. I was diagnosed with Breast cancer 6 weeks ago and remember those feelings so clearly. The one bit of good advice someone gave me on this website, was just to take it one day at a time, and this worked for me, it is amazing but you do come to terms with the diagnosis, it just takes time and please be gentle with yourself, people will understand when you are feeling low. This is prefectly natural. I wish you well with your op next week and really hope you feel better in yourself soon.

Take care

Jo
x

The initial shock does ease with time -

Don't worry about how you behave - if there is EVER a time for 'self-indulgent emotion' it has to be when you have a cancer DX!! Behave as you want, say what you want, feel what you want - others must shape around you or they can ship out. YOU are the priority right now, and whatever gets you through, is valid and OK. Don't try and 'carry' anyone else right now, unless they are children, in which case obviously, their feelings and concerns take priority even over yours.

Right now, apart from medical treatment, it's a time for 'coming to terms' psycholgoically. Once that happens, then you can think about turning outward again.

Sites like these are brilliant - real sanity savers, so do make the most of them. You can emote away here, and we all understand, because we all live here in Cancerworld, whether as patients or caregivers. Check out the Macmillan Share site, and if your own cancer/s have their own specialist sites (my husband's, Kidney cancer, for example, has its own specialist organisation, and that may be true for the other cancer types too).

For sheer informatoin, I can recommend US sites, especially if there is new treatment that may be more advanced there (not to say available - sore point with kidney cancer patients, if you've been following the disgraceful Nice saga in the press, denying us life-preserving drugs that are commonplace everywhere else). A good US site is 'Cancer Compass' which has separate sections, like here, for every cancer.

All the very best, and with your forthcomign treatment.

Julie2

PS - I'll repeat something I've been repeating in my own head all summer since my husband's DX. "There's only one thing worse than knowing you've got cancer - and that's NOT knowing you've got it!!!" Whatever stage the DX, better that they get on with the treatment, than have gone on in ignorance that you needed treatment at all.

Hi Jo,

I would just like to thank-you for replying it is good to know that eventually I will come to terms with this and all those panicky sick feelings will subside. I will try to take one hospital appointment/test at a time and not race aheead to a scary and uncertain future. It is really good to hear from someone in my position and I hope all goes well with you and your treatment.

Caroline. x

Hi Julie,

Thanks for your comments and support. My husband and son are absolutely distraught and I finding that difficult to deal with. I am just glad I have found this web site and are able to reach out to people having similar experiences I will keep you all posted as to my progress.

Caroline. x

Caroline, have your doctors told you what stage your cancer is at? I ask because, obviously, that makes a vast, vast amount of difference. If you know what stage it's been classified, then why not get a friend (not you or your family!) to look up the stats on it? A friend of mine did this for us when my husband was first DX, and we just did NOT want to look up the stats ourselves, so a friend (whose husband has had cancer himself, so she knew what we were going through) did it for us. Basically, I'd say if it's good news (depending on type, stage etc), then do, do use that to reassure your poor husband and son (not to mention yourself!). Although I wouldn't for a moment say that being a caregiver/relative is anything like as frightening as being the patient themselves, one key source of our fear is a sense of helplessness - we so desperatly want to be able to 'do something', but now it is in the hands of the doctors and surgeons.

We each of us react in different ways, so for some (like me) I tend to find 'comfort' (of a sort....!) in basically doing as much online research as I possibly can, to find out what is going on inside, what the treatments avaialble are, what is coming down the line etc etc (it did take us a long time to face our stats, but at least when we did were prepared for them). Remember, all the time, that treatments for cancer change continually - what was impossible earlier is now routine now, and that continues. My husband's cancer, kidney cancer, is shining proof of that - a bare few years ago, treatment hadn't changed for 30 years, and the stats were grim. Now, with four new drugs routinely availalbe (abroad!!!!), the whole game is up for grabs again, and kidney cancer patients are inspired with new hope.

Remember, too, that doctors are NOT gods - and this and lots of other sites are full of people given grim words by their doc, and still alive and kicking way beyond what the doc had thought.

In terms of practical advice, in the interim between now and your treatment, it might be a good idea, say, to do as much fitness training as your current state of health permits. This is for several reasons - it gets the adrenaline out of your system (giving all that fear and panic 'some place to go'); it releases endorphins, the brain's natural 'feel good' opiates, into your brain, so will help calm and compose you, and, of course, the fitter we are before we start treatment, the better. It doesn't have to be press ups and pumping iron, etc, it can be brisk walks (if you're up to it) or even gentle walks.

Cancer is, again, sorry for saying the obvious, punishing because it is dis-empowering - we have 'lost control' of our bodies, so exercise of any kind can help to put us back in more control. This is somethign we can actively do to help ourselves. Ditto with diet, which, again, can only strengthen our bodies with good nutrition.

Personally, and this really is a personal rsponse, I don't see anythign wrong with turnign to the bottle! Either wine (in moderation, obviously, and, again, depending on what your innards can currently cope with) but also possibly calming pills. After all, we live at a time and in a coutnry where we are blessed with the gift of tranquiliiers etc which IF USED WISELY, can provide a very justifiable 'bridge over stormy water'.

You are, in every sense of the word, 'in shock' and if a pill or a glass of wine gets you through this most difficult time immediately after DX, when your whole world has just turned upside down and inside out, and fear and anxiety gnaw away at you. Whatever helps you get across this time, go for it. It won't be for ever, but, right now, it if works, it's justified.

All the very, very best. I hesitate to say more because in the end, it all comes down to staging and treatment. Post DX, whatever else is going on in our heads, the learning curve is HUGE. Cancer is a VAST subject, and each cancer is a VAST subject, so don't worry about feeling totally lost and confused - that's completely natural. If you are up to it, sites like this, on the non-forum pages, usually have very good general information about each cancer and current and sometimes even forthcomimg treatment. Again, if you can't face that yet, and it's very understandable if you can't, get a friend to go through it for you.

How old is your son? I ask, because we told our teenage son (l4) in stages, as we ourselves came to terms with things. But it may be from what you said that he is already adult. If so, it's good that he and your husband have each other. They will be tryhing desperately not to upset or frighten yo umore, trying to hide their own (and probably failing), trying to be supportive, and worrying they aren't, anxious over what to say, and how to behave, and how not to say the wrong thing.

I would say, however, that until and unless you know the staging, you won't really have anything 'concrete' to go forward on. Obviously, however, it's not an easy thing to know you have late stage cancer of any type, and you may not be psychologically ready to take that on board, if that is the case. (We knew straight away, as it was the lung mets that presented as a cough and so triggered the DX! No hiding from that, right from day one! Dropped right in it!)

Hope things are beginning to beginning to ease on the panic front - little by little we really do get it under our belt, and come to terms with it.

All the very very best at this most frightening time for you.
Julie2

Why don't you get your husband and son to lurk, register and post here too. We are here just as much for relatives as for patients.

Families are in this together, and it is only by getting together and supporting each other that we get through it.

The old hands know that I advocate small breaks, down in the park, have a day by the sea, or in the woods, and let nature do its magic.

They also need to know that they must take each stage at a time and cope as it goes on.

Look forward to seeing them as well as you.

Ruth