Hi Helen

I can totally understand why you are feeling scared receiving a phone call like that.  I hope this will make you feel a little better, my dad had the same call from his onc. If you read my earlier personal posts you can read it.  I was like you and frantic that dad had been called in early to give us some dreadful news.  It turned out they decided to bring his appointment forward as there had been a cancelation and wanted to give him some good news that both tumours had been removed successfully.   I do wish they would think about patients and family when making these calls on a Friday though I fully appreciate they meant well..  Do you have a Macmillan or similar contact for weekends.  might help you to talk to them.

If I put my Logical head on ....I'll try ... You have no new lumps only a slight increase in one of the mass,  she is going to keep you on the same course of treatment.  I would read that as..she is satisfied with the medication prescribed but will touch base with you in three weeks.  It could be they have had a cancelation and have moved you up, so you don't have to wait like my dad. Maybe she has thought of another treatment plan she thinks may be more beneficial with less side effects.  I'm thinking of your poor hands and feet.   Do you see where I'm going...it doesn't  have to mean anything bad....  

Its given us a miserable weather forecast for over the weekend, so I won't suggest a nice country walk ! but if you feel up to it try to keep yourself busy over the next couple of days, it may help.  I'll keep logging on if you need to talk.   I'm grounded for the weekend my lovely boys are sick, Sam has tonsillitis and Jacob has a cough and cold.  Here's hoping Paul doesn't catch Man Flu.

Try to get a good nights sleep my friend

will talk again tomorrow if you need to xxxxx

Hi Helen

I have been aware that I am a 'worryer' for many years. I could worry for England ! Yet I never seem to recall all the times that I worried so unnecessarily about so many things. A freind once said to me when I was getting something off my chest "Can you recall what you were worrying about this time last year". I could not. Worry is one of the most neglected of conditions. There are ways of dealing with it. Kate91167 is right keep good busy. Talk to loved ones, keep active with good things, bake a cake for someone, write that letter to that old friend you always meant to get in touch with, watch or listen to some comedy.......If possible satisfy yourself that you have done everything you can, at least for the present, concerning what worries you.

I am carer for my wife who is almost entirely incapacitated - Parkinsons in the main but other conditions too. She can walk a little with her frame but mostly I need to move her in her wheelchair. A big pills regime - but amazingly and thankfully she is as good in the head as ever, just as well because for one thing I need all the guidance I can get in the kitchen! 

Now to the point. You are ahead of me Helen, my 'journey' only started today with my GP visit. I now have appointments for Xrays, ultrasound scan, blood and urine tests. Not sure where these will lead but we must always have hope.

I have researched my lumps and symptoms and found this site. Already I feel better for having found so many others with real understanding. The NHS can be a frustrating machine at times, particularly when the routine admin procedures seem to be so uncaring - even inconsiderate. But the truth is that we are in possibly the safest hands in the world when the chips are down. And we don't have to flash a credit card for our treatment ! Focus on the positives.

Best of luck 

Stay strong

Ted

Hi Helen

please don't cry ... I know it's got to be so hard to keep being positive all the time, I imagine it's completely draining.  We're all telling you to keep busy when you probably feel like getting under your duvet and blocking the world out for a week or two.   I try not to dwell on this, Sammy was 13 years old and went through an awful assault he ended up having a complete breakdown.. It took many years and lots of support to get him where he is today.. I coped with all that was expected/asked of me, Sammy was my priority and I was determined to help him..and I did cope and get him well again.  It was only after he was ok I  fell to pieces. I know it can't ever compare to your fight ..but there were times when I felt I just couldn t cope with another thing, my nerves were shot, I was tearful and just wanted everything to stop.  They were the times I needed my family and friends to pull me out of the despair I was feeling.  I allowed them to pull me out, firstly in truth only because I had no energy to fight anymore..but little by little I became stronger and took control of my feelings.  I couldn't change what was/had happened but I could try and take some control over how I would feel about things emotionally.  Little by little I began to feel better and stronger.  Cancer has invaded your body but it doesn't have your mind or your will power, they are yours.  You are stronger than you know, look at all you have coped with.  Get your boots on friend and kick off those doubts.  Actually change your boots for wellies it's pouring down here and I bet the same for you.  I'm on nurse duty for the boys today, got a feeling their going to milk it, thank god they haven't got a bell, they'd be ringing for juice a biscuit Hahah.  Just checked in on them they are both playing games on their consoles so I would say they are feeling better.

love Kate xx

Hi Kate

Went to see a work friend (work I haven't been back since last feb) with a big group off today so that helped keeping busy, although my mind was wondering.... I did show up. 

Just waiting for Wednesday to arrive but I do think they could have rang me on Monday morning the  ivy wouldn't be worrying all weekend, I do think she's going to put me on different treatment I just hope I get a longer time on it, I really don't know what's going to happen but I have a gut feeling, my wish is to be on something and get a reasonable time on it instead of treatments only lasting a short time.

I could be wrong but why I don't know I'm just presuming 

Hope your day has not been too bad being nurse

Love to you and yours

It's always nice to hear from you my special unknown friend

Helen x

Hi helen

im glad you were out,  it's good that your were amongst friends.  Your right if you were in private health care you wouldn't have to go through this, playing the waiting game.  But remember what ever your doc has been doing it's working for you, there are no new lumps..that is fantastic...he/she has told you they are not concerned about the slight increase.   If they are going to tweak your treatment it's because they feel it will be beneficial for you.  You can also explain to your doc how you feel about all the different treatment changes.   Get through tomorrow and then first thing Monday phone and ask to talk to your specialist nurse, explain how your feeling.

With regards to to my playing Nurse today both boys have made a remarkable recovery, (bet they both have s relapse on Monday morning when it's time for school and college haha) Sam's medication is obviously working for him and Jacob is playing at grandma's house.  So I have had a very very lazy Saturday.  I put an old movie on TV got my favourite comfy throw and must have fallen fast asleep 10 mins into the film.  Paul said I slept for nearly three hours, I don't know why,I never sleep in the day !! How lazy am I.  I just hope I'm not going to be awake all night !!  Paul keeps teasing me saying I'm getting old .., how cheeky is he ..

You know the best thing about having a special unknown friend ?? You can talk about anything you want, good, bad and ugly with no judgement.  I enjoy our unique friendship too.

love Kate xxxx

Hi

what a coincidence, all I really fancied for tea was an Indian haha .. I didn't get one...

enjoy your evening my friend I'm going to have a glass of wine and relax too.

Nb. sounds like you met Nurse Cratchit, why why why bother to be a specialist nurse if you can't be arsed to support your patients when they need you the most !! Disgraceful x  fortunately the ones I have met have all been very caring individuals

check in with you Tuesday xx 

love Kate xx

Hi Helen

just wanted to check in with you and wish you good luck for tomorrow, I know your worried and I wish I could think of something to help you feel a little better.  My brain is a bit frazzled today, had one of those days .. Sam is still poorly and had to have more blood tests, he's B12 deficient and is just so tired all the time on top of tonsillitis.  Doctor called today and will see him again on Thursday, I'm hoping his antibiotics will have kicked in by then and he starts to feel better.  Jacob was up and ready for school on Monday.  He has assisted transport to take him to his special school and just as they arrived to collect him, he went very pale and said mum I feel sick and vomited spectacularly.  Needless to say his escorts left our home very quickly minus Jacob.  So my dear friend I'm back at playing nurse.  

ill keep checking in if you need to talk tonight or tomorrow....You may not feel it at times but your a fighter  

love Kate xx