This waiting is getting me down.

Dear Lynn
Sweetheart - I couldn't agree more. The waiting really is the worst bit. Once you know what you're up against you can take a deep breath and face up to it, and you really will find the strength to deal with it. It really is the not knowing that's so dreadful - the total lack of control and being unable to see into the future and make plans. But it's now more than 8 weeks since your hysterectomy, and just 1 week left to wait - you really are nearly there. And you have the added advantage of having had time to get over your operation, should you need any further treatment. BTW - I also waited over 2 months between removal of my tumour and seeing the oncologist, so I don't think that's unusual - and as you say, it's the holiday season. It's easy to say put it out of your mind, but almost impossible to do. Nevertheless, do try not to obsess about it - I'm a great believer in not worrying about things you can't do anything about! Try to keep yourself busy, and this week will be over before you know it. And once you've seen the oncologist and know what you're facing, you really will be able to cope.
Please keep in touch and let us know how you get on - you're certainly not on your own.
Lots of love, Kate xxx

Hi Lyn

The waiting game it's awful not to put you off but I'm afraid you will have to get used to it if you can there is a lot of waiting. But honestly you will find that it gets better once you know what you are up against we felt that once we started the chemo we where in control and fighting back. Whereas before the cancer was.

You feel like your world has collapsed don't you but hang on in there,
I thought our life had come to an end, but we have just organised a holiday in Spain for October and we are really looking forward to it,Things will get better.

Use this site it's really helped me I never for one moment thought that I would become as involved as I have and don't worry about having a moan thats what it's all about.

Good luck

Love Tina xx

Waiting ,all we ever seem to do is wait!!! wait for blood tests, wait for biopsy results, wait for appointments, wait to se the consultant! I think the waiting is the toturous(is that how you spell it)bit.Honestly once you now what you are up against you almost fall into the accaptance stage.i.e you think rite now i know what i've got and the treatment i am goin to get i can get on with it.Thats how i feel at the moment anyway i dont know if anyone else felt like that,would be interesting to hear tho.
I honestly dont think they keep you waiting for no reason,things just take time.Unfortunatly when you are waiting it seems like an eternity.
To me the last 5 weeks feel like a blur and looking back i can hardly remember much of it.Maybe it is some kind of coping mechanism.

It was torture, it was all I could think of, it had me tied up in knots. When the appt finally came and we were told Harry had cancer, well, in many ways it was a relief, the waiting was over, now lets get on with it. I hope things turn out not to be so bad for you Lyn, we are all here behind you, keeping busy is very good advice! Much love xx

Lynn I am quite new to all this too, It seems to me that as soon as you assimilate one piece of information they send you for another test to give you something else to worry about, just nicely spaced out to ensure that you get no sleep for a month.

Of course in a "glass half empty" kind of way, I also find it terrifying when they deal with things really quickly - as anytime the NHS gives you an appointment the same week you convince yourself you must be REALLY sick.

I spent the night before last, prior to yet another test, awake all night and terrified about what else might be found, but have decided to choose my attitude about doing this, and have decided that if the tests are bad news I will allow myself a week of moaning and weeping each time, but not unless and until I know I have something to worry about.

Also I found that there are most people on this forum have been through these tests too,and even when the results are bad news they are surviving and maintaining their sense of humour too.

Hang in there Lynn, my thoughts are with you.

Jinete

If it is any help, I ask myself "How do I feel?" If I don't feel too bad, I just try and think of something else. I was always with my nose in a book, so can lose myself in that.

You have an opportunity to set up some coping mechanisms now. How are you going to exercise while this is going on? You might also need to know a couple of months in advance what your appointments will be, but you can almost certainly get away for a weekend because they don't have appointments on Saturdays and Sundays.

I always find that a flow of a lot of water takes my mind off things, so get a weekend by the sea or near a river that throws itself off a mountain very noisily. The rush of a weir by a powder mill did it for me at the Forestry Commission cabins at Herodsfoot in Cornwall (near Liskeard).

I often sat on a bench to worry for 5 minutes about the next thing. Worry demons/gremlins hate your undivided attention, so they will leave you alone for up to 24 hours.

You don't have to concern yourself with the whole darn thing you know. Get the whole elephant in view, then just concentrate on the trunk or the ears or the tusks etc.

You may need to do some of the practical things like sorting out your leave absence, claiming on your health/loan insurance etc. When they told me I had cancer, I was only worried about whether to stop work or not. Once I had decided on that, it was easy peasy.

I hope this helps.

Ruth

Thankyou all for taking the time to read my post and reply.

The advice has been very helpful and I have had a good weekend. I've decided to wait until Friday before I worry any more.

Ive been to the pictures (mamma mia) very good feel good factor:) and spent some quality time with the family.

Thanks again, Ill keep you posted as to any further developments

luv
lynn
xxxx

Hiya,

well, I was at the hospital today, I'm feeling much more positive tonight.
Ive had blood tests done and I have to have a CT scan, but, the doctor seems quite confident that they got all the tumour out at the time of my op. So, fingers crossed things are looking ok.

Thankyou all for helping me get thro this week. I keep coming on here and reading your messages of support.

Love
lynn
xx

Hi Lynn

I'm really pleased to hear that things are looking better! It must be such a weight off your mind.

Like everyone else has said, the waiting is the worst part because you can't plan anything, you have no idea what you're facing and every situation imaginable goes through your head (especially at 3 in the morning!). At least once you know the results (whatever they are), you can try to get your head around it and fight it. I had ovarian cancer 6 years ago and (touch wood) have been OK so far, but I had a health scare earlier this year and had to wait 2 months for all my results after having a CT scan, an MRI scan and countless blood tests (starting to feel like a pin cushion!). Although I know my hospital did everything they could to speed things up, the weeks start to feel like decades.

Take care and I hope the CT scan goes well.

Rach
xxx

PS: I've only just joined today (don't know why it's taken me so long!) but I've read through quite a few people's stories and I think you're all amazing and unbelievably brave. A lot of you have been through things I couldn't even begin to imagine. It's scary how many people this horrible disease affects and I wish everybody the best of luck.

hi Rach,

Thanks for the kind words, Ive just read your profile and it is Christies hospital were im due to have my scan. They were lovely last week, especially in the blood room where I had to have a couple of blood tests. (Im not good with these). You didn't say how the results of your recent tests went. I hope they were ok.

I think this sight really helps, there is always someone with a kind word.

I find out results of my tests on 2nd Oct, (still waiting for CT Scan) so i will keep you informed.

luv
lynn
xx

Hi Lynn

Fingers crossed you get your CT scan appointment through soon. And I hope you're still feeling positive! It sounds like your situation is similar to mine. I was one of the lucky ones in that I only needed surgery to remove the tumour, but then got referred to Christie's for blood tests, X-rays, a CT scan and the Spanish Inquisition!

Christie's are fantastic - the nurses especially are just amazing and always seem to be smiling and chatty, which must be bloody hard considering they're in that environment all day. I suppose they must realise that most of us secretly become gibbering wrecks 2 seconds after walking through the hospital door! I'm not great with blood tests either but the nurses always manage to take my mind off what they're doing (I can never watch!).

The staff in the Pat Seed department are great as well. There's one nurse (can't remember her name) who's really kind and friendly and always jokes about mixing you a cocktail (I don't know if you've had a CT scan before, but you have to start drinking some sort of liquid about an hour before your scan, but thankfully they can bung a load of flavoured cordial in it so it tastes OK!).

When I went for my CT scan in May, I was chatting to the nurse who put my cannula in, who said that they can normally get the tests results back within, I think, 4 working days, so if you have your scan in the next week or two, I'd definitely recommend asking reception if you can change your appointment to get your results. I originally had a 6-week gap between having my CT scan and getting my results, which would have done my head in, but they managed to fit my scan in much sooner than my doctor thought.

Thankfully, all my test results came back negative. I've still got a 'nodule' (whatever one of those is!) but they don't think it's anything nasty. I'm back to annual appointments now anyway. One of the great things about Christie's is that they'll do everything possible to make sure you're OK. Even though my CT scan and blood tests showed diddly squat, they still did an MRI scan just to make sure, and I know I can always ring them if anything's bothering me. I'm dreading when my follow-up period ends!

Let me know how everything goes.

Take care
Rach
xxx