17.11.15

Saw Dr Jack. He said to me, 'shall we do it standing up?' Well, i was all of a dither. I asked what are we doing? Of course it was to check my gland in the groin to see if its big enough to biopsy. So i stood whilst he rummaged. He made a few comments that made me snigger! 'This probably isn't the best position!' etc.
So I'm now waiting for an appointment to have my lymphectomy. The whole gland has to be removed to make sure we don't have to go back for another 'grab'. Theres probably a fair bit of scar tissue involved in the lump. Don't wanna be biopsying that.
Hes as convinced as i am that its HL but as he rightly said, 'never assume'!
So following the biopsy, and it being positive, i will have a Hickman line installed! Then ESHAP chemo and hope that gets rid of the blighters. Injections to encourage my bone marrow to chuck out loads of stem cells that will be collected, counted, processed and frozen ready for me to welcome them home to mama.
I will be an inpatient mon to fri whilst they fill me with more toxins, for at least 2 times, possibly more. One of the drugs is given continuously for 4 days! Im gonna love that! Then when i can't take any more, a CT scan to check if I'm in remission (please please please) and then bung my precious little stem cells back in me, which apparently is no picnic.
He told me its not easy. But its easier than dying!
As usual when i see Dr Jack, i take a photo of myself so i can see the difference as the months pass. I had hoped at some stage to put them all in a row and see my physical recovery. Thats not going to plan. I wonder what my next photo will look like? Heres todays pic tho.

13/11/15

Friday the 13th!!!! Will i get some news today?
I hope to have a phone call from Karen, Dr Jacks secretary regarding an appointment to see him, either that or to find out my wedding ring finger size! We all know secretarys do the gift shopping for their bosses!
And I'm also hoping the results from the PET will show that if its back, i will not need a biopsy, not looking forward to that.  Im not a voodoo doll - please don't stick needles in me!
Yay, not heard a flipping dicky bird!
I am celebrating my 'no news is good news' with a glass (or 4) of Prosecco.
A few days on and Dr Jack has called me. He didnt know id been scanned, thats why I've been left waiting. He apologised. I can forgive him anything!!
More glands have come up in the groin area meaning i may be able to have the biopsy done there and not guided by a CT scanner deep in my body! Im happy about that. Never before would i have believed id be happy about having a biopsy, but at least then i can get on with whatever treatment i need and hopefully get on with my life!
And this morning his secretary rang me and made an appointment to see him at 4pm.
So an afternoon of bath, hair styled, dousing myself with perfume and wearing clothes that make me look a size 10!!!
Only for him to say, 'jump on the scales!!!'
The things we do for the men in our life!

2.11.15

Getting nearer to my PET scan! Nearer to finding out whats going on! And it all leads to anxiety.
Had a few bad dreams/night terrors. Although not sure if the one last night was a night terror as Simon Cowell was in it, discussing the X Factor with me!
Today i have had a few jitters. Ive felt angry and wanted to swear and shout, which i did, but in the comfort and privacy of my own home!
Hurry up wednesday (PET day) and hurry up results so i can move on to the next step of diagnosis....or hopefully, its all gone and it was all a bad night terror!
Its here!
I woke at 6.30am, too late to eat or drink (other than water!). The NBM (nil by mouth) order started at 5.30. Why is it, when you know you can't eat, you want to? You're desperate to.
I arrived at the unit with plenty of time in the hope they would 'do' me earlier, and they did. The usual technician was there, the one who can cannulate you with his eyes shut! Its always nice to know you have a competent technician when its your own veins at risk.
Cannulated and deposited in a different place to normal (how did i ever get into the situation of it being normal to be in these types of places?). It was like a broom cupboard! With a chair that filled half of it, and a small heater on the wall, blasting out a gust of hot air, noisily!

So heres my radioactive glucose being administered. And then i get the chance to sit and do nothing for an hour whilst the glucose gets to the active spots. But you know all this..... you've read my blog from before!

But for those who have forgotten. The injection makes me radioactive for a few hours, so i have to steer clear of pregnant women and babies. I have to flush the loo twice. Theres nothing in the literature that says i can't eat as soon as possible tho!!!

I visited the canteen and ordered some food, but it was soooooo bad, i left it and departed quickly with the thoughts of toast and marmalade when i got home.

Im now home, and I've enjoyed the toast. The dogs are pleased to see me, although they are looking a little confused. 

25.10.15

Just felt i had to blog to tell you how I'm feeling.
Its amazing. Ive moved on from my bad news! Hey, how did i do that? I was full of tears and fears a few days back. Of course I'm worried about having the scan and biopsy, but I've talked myself into, what will be, will be, and ill worry about it when i get there! I must be superwoman, this isn't normal. And also, if I've got lymphoma again, and i have to have treatment, such is life. Go me!!!
It beats that 'rugby ball in the guts' feeling, and the tightness around the neck and shoulders.
And this weekend has been such a good one. Sad its over really.
Saturday was spent having breakfast with a group of friends, followed by afternoon tea with Chris. And then a few hours of X Factor.
Sunday, i performed in a concert at the BIC. I sang a duet with Steve, Something Inside so Strong.

Then another breakfast with the choir girls, and what a view whilst we ate. Such a gorgeous day.

Then back to my house with Kim before travelling to Lyndhurst for a Russell Watson rehearsal. And that was amazing. There were many times we sounded so good. The sopranos are something else. Gave me goosebumps. Roll on tuesday for our concert with Russell. We would like to be the best choir that he sings with, but i bet they all want to be that. Ill let you know!

So a day of fun and laughter. Lisping to Something inside so strong with Becky and Jo. Singing opera in the car on the way to the rehearsal with Kim and Caroline, at the top of our voices. The common denominator for me feeling happy....singing. Oh yes, and eating too!

Well thats all for now. I have to go. I have more contestants to choose for X Factor. Ive picked the same ones as Simon Cowell and Grimmy. Cheryl's mucked up tho! I gotta help Rita now. 

Catch you later. 

22.10.15

Hello I'm back from my holiday. It was lovely. So warm, with blue skies. A bit chilly in the pool but i splashed about most days whilst squealing with the cold. I was treated like a princess. Lots to eat and drink. Lots of excursions. Kevin and Marion are lovely people, so caring and thoughtful and generous and i could go on forever.
But I'm back now. Back to reality.
And so i wait........
I wait and i wait......
Waiting to hear something about the MDT meeting that was on friday.
Home on sunday, nothing monday, nothing tuesday.
Wednesday i rang Dr Jacks secretary. She's not had the referral she was waiting for!
I telephone the GP and they sent the referral on the 7th......... to the wrong hospital!
To cut a long story short, referral was received today.
Im not worried. Dr Jack said it was nothing, just enlarged glands. And my raised ESR is nothing particular, even tho its the highest its ever been recorded for me.
So just before i left home for work, Dr Jack rang. He asked about my holiday, we discussed Sangria and Prosecco, midges and my bitten to pieces ankles!
Then down to business.
The glands are small, too small to biopsy, but there are quite a few and they are newly enlarged! Worry.
They are in the similar area to my previous lymphoma.
Worry.
They are along my spine, and surrounding major blood vessels which makes it difficult to biopsy.
Worry.
So we're gonna wait 4 weeks or so for them to get bigger, then we're gonna CT scan me and whilst I'm in the scanner, the radiographer is gonna attempt a biopsy cos he/she can see where the needle is going as its gotta go through muscle etc (and probably a bit of fat too! although this news has made me lose my appetite and the diet is going well!)
Worry.
Although there is a chance by the time I'm scanned it could have cleared up and done one!
Wonder what the likelihood of that is? Wonder what the chance is that this 'blip' is nothing but a freaky moment?
Right now I'm fearing the worst. And I'm fearing a stem cell transplant after high intensity chemo to kill my immunity!
To say I'm scared is an understatement. Im watching Live at the Apollo and every so often i laugh at a funny bit....then i remember and feel sick again.
Luckily i have the Lymphoma Support group there to give me support and a few virtual hugs. And my boys and Chloe have been very sweet, even Chris, considering i told him the cells from the first born are usually the best match for a stem cell transplant! And then i have a few friends that are trying to keep me positive. And of course, Dr Jack.
So, onwards and upwards. I hope to god its all a storm in a teacup, but what will be, will be. Que sera sera. C'est la vie. Just one thing........please leave me with hair this time!!

07.10.15

Ive been trying to sort out some travel insurance! Not an easy task.
Because I've had an MRI on my spine and I'm awaiting the results, they won't give me any insurance.
So an appointment made with the GP to find out that I've got a knackered old back!
What a shock tho!
It turns out there are multiple small lymph glands in the same area that my lymphoma started. A moment of stunned silence followed by the feeling of a knife in my chest.
Luckily it didn't take me long to 'snap out of it' and think up a few excuses.
1.  Scar tissue
2.  Infection
3. Wrong reading of a scan

Pick one, ill be happy with any of them!
I sent Dr Jack a text hoping he would turn up in shining armour on a white horse.
Instead he texted back to come the the Harbour Hospital at 5.15 on friday afternoon.
So i did.
'I don't think its anything to be worried about.'
He said he'd take some blood to check my ESR and he will try and compare the MRI and my last PET scan.
He used a latex glove as a tourniquet and he drew blood himself. He informed me he's taken his own blood before, cos he's a real man! He did a flipping good job, no bruises.
So off i trotted after a fun filled appointment, happy with his comments.
You know what I'm gonna say, don't you?
He sent me an email today saying my ESR has gone up to 62, its normally 25-50.  He's still got to compare scan results at the MDT meeting on friday morning and then he'll decide if i need a PET scan to check things out.
I could do without this stress. I wouldn't mind if when i was stressed i stopped eating and lost weight, but no, not me.
So here i am, flying to Spain tomorrow morning, with the weight of the world on my shoulders. I feel quite worried cos i know it means a stem cell transplant if I've relapsed.
Fingers crossed.

10.09.21

It only seems like yesterday i was starting chemo, but it was 21 months ago. Even tho at the time, it dragged, its also whizzed by.
Ive become aware how negative my life has become. Not completely negative. Im a positive person. But when i compare my conversations from before diagnosis and now, theres a lot about health issues.  Cancer has become a large part of my life, its never far from my mind. And lets face it, i have plenty of alone time to stew over it.
In some ways I'm very proud of what I've been through and how i coped and managed it all. It wasn't a walk in the park! But in other ways i hate that my life has negative patches that weren't there before. And its nothing i can 'move on' from as a friend suggested the other day. "Maybe you can move on if you leave the support group!' To say i was stunned is an understatement. I had explained what the support group was for me. People who had been through the same or similar who were able to empathise and understand fully. They are my first port of call for support when i have any issue with regard my health. They are amazing people. My family are my second port of call. Friends my third port of call.
So to leave the group and 'move on' just doesn't figure.
I know people don't want to hear negativity and they want things to go back to normal, but it doesn't work like that. Id love to go back to normal, but this is normal for me.
It has changed me. Im a different person.
Living with the knowledge that you're now at risk of a further cancer because of the chemo. That the cancer you had could return - thats why you have 3 monthly check ups. Its not just for a catch up with your oncologist.
Of course thats not exclusive to me, as I've been told by a friend. Others also worry about getting cancer, but once you've been through it, its with you forever. Its like a life sentence with no parole. But its how you deal with it. I think i deal with it pretty well. Im not depressed, nor do i spend any time crying over what i went through. I try to get on with my life and not let it stop me doing things that I'm able to do. I laugh and joke about it most of the time. But its always there.
So today is rheumatologist day. I am hoping nothing is going to be inserted, anywhere! A feel of the spine or the joints is ok, but come near me with anything metal and sharp, or covered in KY jelly isn't gonna work. Not today please! A nice gentle massage or a pedicure.
Well she was very nice and understanding. Nothing was inserted and I've been referred to the scan department for an MRI of my spine. So that'll be fun!