30.11.15

A fun filled weekend.

I class friday as weekend too. I finish work on friday morning at 8am and the moment i leave for home, its the weekend! And let me tell you, 3 days seem to go as quickly as 2 days when you're having fun!

Friday was self indulgent day. I walked the dogs when i got home then i more or less did what i do best.

Nothing!

Not strictly true. I made some chocolate truffles. Gifts for Christmas, apparently. 

Well I'm gonna blame the recipe for the fact that they weren't as truffles should be. They tasted ok but were too hard. I think too much chocolate was used. So they're sat on the worktop, gradually diminishing each time i walk in the kitchen. 

They are definitely not up to my usual truffle standards and therefore not good enough for gifts. And now I'm all truffled out and can't be bothered to make any more (or eat any more!)

Friday evening was a relaxed affair. Curry and Prosecco, TV and laptop. 

Saturday was filled with dog walking, brain training on the laptop (playing mindless games, that is), and chatting with friends, before getting spruced up ready for the pièce de résistance of the weekend - the Rock Choir concert at St Lukes Church.
A wonderful evening singing, including a duet with Steve to 'Something Inside So Strong'. 'Merry Christmas Everyone', making it very festive and a glass of mulled wine and a mincie.

Our rendition of Don't stop me now, such fun to sing. And You're the Voice, always a favourite of mine ever since we did a flash mob in Southampton high street on a saturday lunch time. Loads more songs and i must say my feet were aching - new boots!!! 
A swing band were also part of the entertainment, and they played some cool tunes to bop away to which looked fab cos we (the Rockies) were sat in the choir stalls.

The lovely Jenny Deacon, aka the red kitten from the Lounge Kittens, aka our choir leader, sang a set of 3 songs one of which was her cover of Lately by Stevie Wonder, the most beautiful song. She was amazing. 
Its our last Rock Choir concert with her as she's leaving to become a full time kitten and the band are 'going places'! So it was all very emosh.
Sunday morning, after walking the dogs, i spent some time at a beading group. Thats not a sexual term by the way! I was making jewellery. 
Followed by some chilling before the evenings festivities. Im out for dinner with a group of friends. Id better go and wash behind the ears!

30.11.15

Ive been thinking (always dangerous), whilst talking to Princess Oogag over coffee and a pastry, we discussed a bag for life. As you all know, you can't go anywhere without one these days. Its one of the most important things in our lives. If the bag is in fact,  'for life', could i have that instead of a stem cell transplant, which is also 'for life'? It was suggested by Princess Oogag, that maybe i could have a pretty sainsburys bag. But then i came up with the theory that if i wore it over my head after the transplant i would be unable to pick up any bugs of which would take me straight to a bed on ITU, so therefore a bag for life is a good thing and well worth 5p. However, there is a negative side to my theory...... i wouldn't be able to breath, also taking me straight to a bed on ITU.
Back to the drawing board!
And on the subject of Bags for Life. Because my head is like a sieve, I have a whole cupboard full of them. Only ever used once! Special offer 3p!
Quite surprisingly, I've had 3 people suggest i don't have the stem cell transplant. Their recommendations as follows:-

1. Become vegan. It doesn't feed the cancer and so the cancer doesn't grow!
2. Powders! Which powders, nobody knows. But it saved a friend who had a limb removed and the cancer disappeared. Its the power of the powders and not the amputation that did it!
3. Chemo is bad for you so don't have it. It will cause you to suffer a secondary cancer in 10-15 years.      So if i don't have the chemo, i won't live 10-15 years, so i won't get a secondary. Well done Sherlock!
4. And of course, the Bag for Life, which i think is definitely a no go, unlike option 1, 2 and 3!!
Four very good ideas, but i may stick with the SCT until i have more evidence of a cure.
So another week goes by and nothings happened. In one way thats good, I'm not looking forward to my next appointment, but it doesn't take away the fact that i have to have a biopsy at some stage. Just delaying the inevitable.
And in the meantime my imagination is running riot. I am having night terrors regularly. I think every night since last monday i have had some sleep disruption of the insanity kind! The worse one following a large glass of Prosecco pre bedtime where i jumped out of bed looking for drugs and i remember, and i don't know why, i had to drink the water on my bedside table! And the weirdest one last night where i had forgotten to take my epilepsy meds, which is weird cos i don't have epilepsy!
No epilepsy, just crazyitis!

25.11.15

For you ladies, do you remember having your first baby? You thought there was no way you would ever get baby bathed and dressed and fed, and yourself showered and dressed so that you could go out ever again. When you had the second bubba, you had it sussed, didn't you? You got yourself done, baby number one was as shiny as a new pin, and number two, maybe a little sick stain on the bib, but washed dressed and fed and you still had time to read a book to number one before you had to be at toddler group.
Im hoping cancer is the same!
The first one i was a novice. Didn't know if i could manage.  I felt the need to linger in bed longer than possible if i could, as i did with baby number one. If he slept, so did i.
By number two, I'm sure its not a walk in the park (its a far more difficult baby than number one!), but i feel more strength.
I think ill stop at two tho!!!
On a serious note, the last 2 years have been crazy. Finding out i had cancer was a rollercoaster. Its nothing, its something, its nothing.......ITS CANCER. The chemo was rough. The heart attack scary.
Friends who disappeared. And friends who dived in to support me, out of the blue. My life changed from a partying working girl to an old lady, almost. I still had the same personality but anxiety was added to the mix. Living with it afterwards has been challenging. The fear of it returning. And i think i did well with that. The support group......always there and always spot on with support. And the 'friends' who expect you to go back to normal cos you're in remission!
And just when i start to feel a bit more 'normal', its back again. Found unexpectedly whilst MRI for a bad back! Who'd have thought.
I feel like I'm Inspector Clouseau in the Pink Panther, living my life constantly on the alert for Cato (Hodgkins Lymphoma), the man servant, trained to attack when i least expect it!  And at the moment Cato is winning 2-1, but i have a 'behm' (bomb!) for my little yellow friend!

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.