Jillyanna's blog

I feel like a ship sinking and everyone jumping off!

2009-08-23T22:21:00Z

Is it that my hair has from being long to quite short, is it I have this cancer 'Aura' around me, are people scared of me? my husband has gone away for the 3rd weekend in a row, maybe to get away from me?? my friends seem to just dwindle, it's a bit sad really. Not sure if there is anyone feeling as lonely as me, wish this life i have been given was more fullfilling I suppose this is what is known as fate is and my last weeks months years are going to be spent like this???help as i that horrible!! I want to swear and say f*** you but don't. I am beginning to feel persicuted and feel suicidal and no one really knows. I hope this don't sound to awful. Jill

Is this to risky???

2009-08-21T16:40:26Z

Hello Just wondered if anyone has risked going on holiday without travel insurance?? It is so expensive to try and get insured, and as I'm only going for a week and have been well, thought i would risk it, does anyone have any advice for me and haven't been away from England since my dx in Feb this year, so a little nervous. Thanks folks.

ct scan

2009-08-02T20:45:43Z

Hi Everyone It was nice to have some sunshine today and do things around the garden and tend to my koi pond, got a couple of 'sterlets' today, so hope they do ok as bloody expensive!! (could really have used the money better!) but just thought I'd let you know that my ct scan of neck pelvis abdomen lungs had no further tumours or growths and I'm still not on chemo again yet as it made me so ill, but my anxiety was lifted a bit this weekend and celebrated with an indian!! yum I still love my food and putting on weight!!!! Anyway I was going to ask my hair only recently fell out even tho I finished my chemo a couple of months ago, has anyone got any suggestions on how i can get my hair to grow??? least of my problems I know but my hair was thick and long, so I miss it!!

Holidays

2009-07-22T20:25:40Z

Hello I have been given £600.00 from the RCN benvolent fund to spend on a holiday for me and someone else to spend 3 days away, Does anyone have any nice ideas what and where i could go?? It has been suggested 'Albany lodge' in bournmouth run by or owned by Macmillan nurses with thames valley hospice, has anyone been there for a break?? Thanks Jilly x

I had a big one!!

2009-07-14T21:36:09Z

Just to let you know if anyone is curious, but plucked up the courage to ask about my kidney cancer, I had a frank talk with the oncologist, I'm for paliative care only. My tumour was 8.3 cm and had already spread through the vein and to the lymphs. Been taken off the chemo, as the side effects where killing me before the cancer, but hope to go back onto more after the result of my scan which is coming up soon. But on the good side, so far i'm feeling ok, and would not think that i was a grade 4 cancer, considering I'm running around after a 2 year old walk the dogs 3 x daily love my food! and generally have a good life style and think positively, I just hope this gives people hope, and to never give up. Live life to the full and embrace every moment!!!

Arrhhh! my hair is coming out!!

2009-07-13T20:54:21Z

Hi Not sure if this is normal, but stopped my chemo 2 months ago when it nearly killed me, and put my body in 'crisis' but after all that and a bit of a remission my hair started to fall out, by the handfull and it now feels very thin, worried now i'm going to loose it all, hope this is a temporary thing as i have or had quite long hair!! Anyone else experience this some time after chemo?

Grade 4 kidney cancer

2009-06-30T19:23:37Z

Hi people, Hope your all doing ok in this hot weather, absolutely love it but don't want to be a killjoy but think it is making me feel breathless! or is it that my kidney cancer is creeping up on me again?? Had mri a month ago and it was all clear apart from the lymph nodes in the neck but thats nothing new, Does anyone else have problems breathing in this weather??

Pain in the a***

2009-06-09T22:57:01Z

Hi just thought as i hadn't posted anything recently, tell you that after my recent episode of 'hypertensive crises' i have a new and annoying pain in my but (literaly) feels like i'm sitting on a square cube, saw my onc today, hes not happy about this and also got this numb feeling and tingling around my but cheek, also got the urge to do a wee but not a lot happens, how annoying is that!! Anyway got another mri tomoro, looking at my pelvis! I will let you know the results if you are interested!!

what else can go wrong with my body!

2009-05-26T21:49:21Z

I'm sat hit with my lap top wondering why my body seems to be giving up on me, I'm not old not young (mid 40's acturally!) I've looked after my bones kept fit don't come into any risk catagories low cholesterol, don't smoke no cancer in family tree, (heart disease-yes) but my gran is 108 and they all seem to live long lives, so why have i been chosen to break the chain! I wonder about how i will die!! Anyway my latest problem is this pain i've got in my coccyx?? went to my doctor as the pain has got worse over 5 days, it feels like its in my butt crack!! he thinks i must have bruised it but nothing to see and when i press there it doesn't hurt, but throbs and aches and has now woken me up in the night! he just said take anti-inflamatories but my trust has gone out of the dr, Has anyone experienced this?? I'm currious, I hope it's not another secondary!!!!! Sorry if this is depressing but had to get it off my chest!

Chemo side effects

2009-05-21T20:48:58Z

Hi all Just wondered if anyone on here has experienced the same as me, had a radical nephrectomy, followed by chemo of Avastin and interferon injections, unfortunately the avastin put my b/p up so i had a hypertensive crises, had to have lumber puncture, had terrible headaches sickness and generally very unwell, was given a blood transfusion and lots of drugs to bring pressure down, but the downside is i had to come off the chemo before it killed me! Had terrible time thinking about my morbidity, bit better today, has anyone had simalar problems!

can't help but feel alone

2009-05-18T23:24:59Z

Hi all, it's about 11:15 and the household is shutting down, but my head isn't, maybe those sleeping tablets have lost their power to put me in nice land of nod. The kids are in bed, my husband (who's got a cold) in bed the cats have turned in and the dogs have also abbandoned me and gone in there baskets! So here alone with my thoughts overtaking me! They are as follows-feeling sorry for myself-feeling alone and has my life been worth it! Don't have many friends on here, sometimes wonder if they are in there own little clicky groups, and no - one is actually interested in speaking to me, been on here long enough! post a few blogs go on the chat line, but not many people find me a person that wants to speak to me, execept my friend the yank (hope your well by the way). take care all you cancer sufferers like me, and expecially to their loved ones. Jilly

Hypertensive Crises

2009-05-18T00:27:04Z

Hi people, hope your all doing well as you can! Just thought I'd let you know of my horrible experience with chemo over the last few weeks, but don't want to scare anyone that is taking it, because it only happen to 1/100 people-and i was either the 1 or the 100!! Just want to make you all aware that while you are undergoing treatment it is wise to do your blood pressure otherwise you can suffer with something called a 'hypertensive crisis', makes you life threatningly ill, your blood pressure creeps up and up, then you suffer cracking headaches (nothing shifts it) while being nauseated and constantly vomit, even when you haven't got anything else to sick up!! The light hurts your eyes, your breathless and you swell up, and feel basically like crap and on your way out, I had to go to the NHS hospital, (my health insurance is paying for my private care and chemo) but i ended up at Royal Berks while my oncologist was at a kidney cancer conference! They did not really have a clue what was wrong with me at the nhs hosp due to lack of notes and scans so had to rely on what i was tellin them, but felt to ill to even speak! Had various test, they thought i had viral meningitus at the time so done a lumber puncture, too ill to even flinch, but it was painful! Had ct scan-clear, chest x.ray said clear but something like 'blunting' Anyway this went on for a week, by then I'd transferred to private hospital, was very anaemic in every way, given 2 units of blood to give me a new lease of life for a while to get me back in tip top condition ready for something else my oncologist said he had up his sleeve! That was my week that was!!! home now

I don't like mondays! 'tell me why i don't like mondays!' boomtown rats!

2009-04-27T11:54:17Z

Hi my fellow peeps Hope your all well, and you all had a good weekend, just going for my chemo, thats why i don't like mondays, coz I know i'm going to be ill over the next few days, get a migrane type headache and sickness. Anyway at least the good side of it is it's shrinking the tumours in my neck!! (Avastin and interferon) anyone got any good tips to stop me thinking 'ill'???

would like to speak to others-especially with kidney cancer!!

2009-04-25T22:34:08Z

Hi everybody, Just wanted to speak to other people that have or carers that have experience with kidney cancer, I am Avastin & interferon injections, Had a radical nephrectomy and unfortunately it is grade 4, with mets in my neck! Just think it would be helpful to speak to other people, I know I'm not alone in this!!

Hospice Pampering day! kidney cancer lymph nodes cancer secondary

2009-04-22T18:44:09Z

Hi people Just thought I'd tell you I had fun today! I started my weekly visit at Paul Bevan house (Hospice care), where you are pampered, can do art & crafts have reflexology massages have your hair cut, have a lovely lunch, yoga, afternoon tea & cake! The bonus is that you can meet other people in the same situation plus they have medical personal on hand to give advice and if your ill or any other problems. As i'm new to all this it is certainly reassuring and lifts your spirits if your feeling low!! Jill