28.08.15

Here it is. Ive gone from 3 months to 4 months this time. Check up with Dr Jack, that is.
I can't say I'm particularly anxious but i do enjoy his own brand of reassurance.
The things that could go against me :-
1. Im itchy - more than likely the hot, humid weather.
2. Im sweating at times - also can be explained by the weather or return of the menopause.
3. Im fatigued - thats normal after chemo, as well as a symptom of HL.
4. I have back ache/stiffness, like i had before i was diagnosed. My X-rays and bloods are normal so can't blame arthritis. This is the one thing that worries me.
I will find out later today!!!

So heres my appointment photo, i take one every appointment to see the difference. One day ill put them all in a row and see how I've gone from fat bald and ugly to just ugly! Hopefully anyway.

So, the symptoms. Itching, sweating, fatigue!!!

I forgot to tell him. Oh yes thats the other symptom - memory loss!

He said the back ache/stiffness probably isn't lymphoma but he can't guarantee it of course. However my ESR was 24 which is remarkably low for me. Strange considering i have a painful back, I've had a sore toe and I've had a virus upper respiratory tract infection. Inflammation everywhere and wheres my ESR - 24!!

I know i like to do things in my own indomitable style but this is ridiculous.

Dr Jack was his usual charming, caring, interesting, funny, lovable self. He has a very lucky wife!

We talked of relapsing and treatment, holidays and camping, food and wine, music and singing, and a whole host of other stuff, but not about my symptoms!! My fault, not his. So over-awed with my low ESR, that i lost my mind in the process!

So apparently a celebration is in order.

Out for Tapas with the Billy no mates group. Thats my name for the group I've joined. Lots of people wanting to make some friends. Im hoping they wont be offended by my name for the group - after all, I'm a Billy no mates too!

Well it was a wonderful evening. The food was expensive for the portion size, but it was very nice. Prosecco was involved of course as you can see. 

Met a very nice lady called Silvia who's on the same wavelength as me. We will be meeting up outside of the group, I'm sure. 

So lots of laughter was had, and then outside to watch the fireworks before home. Next meet up on bank holiday monday. Lunch at the Slug and Lettuce - remind me not to have the salad!
Today i am doing a bit of reading for a panel that I've joined as a proof reader before i nip to Castle Point for a coffee with a friend and then having some fence panels erected.
Another busy busy day!
Who'd have thought!!

27.08.15

A week of appointments. Dentist, bloods, GP and Dr Jack! All in the same week. I must have done something really bad in a former life.
Oh and a dose of tonsillitis and the GP wouldn't give me antibiotics cos 'we don't do that anymore unless its severe'. I thought having low immunity and the fact that i hang on to illnesses longer than most, would be good enough reason to prescribe them for me. But no.......
Needless to say 4 days on and i still have an unbelievably sore throat, and my cough has returned.
It seems if i do something good, i suffer for the next few days.
I met up with the Hodgkins Lymphoma Support Group last weekend.
When  i arranged it, there was about 30 people who wanted to meet up. On the day there was 3 of us!
We had a lovely time tho. I met Kate and Shell and we had a jolly good natter. Well worth the trip to Oxford.  It was a beautiful day.
Kate and I went for lunch. Two peas in a pod. We both have the same irritations, and i don't mean dermatitis!

And we look so similar too!

So because it was a day out, i washed behind my ears and even wore heels! The next day my big toe was so sore! I started to think i had gout! A bit of arthritis i think brought on by the heels. I also had 2 blisters. And they were my comfortable shoes!

Ive joined a group of people too. Bournemouth Social Circle. I like to call it the Billy No Mates club. Its for us poor unfortunates who don't have any friends any more due to various reasons! I must say, they're a nice bunch. And lots of meet ups. I had to cancel a couple this week due to my wretched tonsils, but friday is another day. 

Tapas at La Tasca!

Im hoping its in Seville or Benidorm, but i have a sneaky feeling its in Bournemouth! I have ironed my flamenco dress ready, and have my passport and Euros just in case!

Talking of passports, i saw my buddy Marion today (i do still have some friends). We had coffee and cake in M&S, and did a little retail therapy. Im still not up to too much activity but i did my best. Well she has a villa in Spain and she's hoping to go out there in september for a month or so and she's asked if i wanna fly over there for a break! So if i can find someone to have the dogs (hoping Chris or Chloe will read this!!!) i will be jetting off for a few days of sun, sea and sangria. Of course i will have a few meet ups with my new buddies that i will have to cancel, but hey ho, when you're as popular as me you have to do these things!

13.08.15

What i find ironic.....
I was told by my haematologist that it would be very unlikely for me to relapse. He feels i could be 'cured', and 'for life'!  So you'd think id be happy with that! But you have no guarantees. And i can worry till my dying day, and only then will i be able to appreciate that i was cured!
Do you see what i mean? It could come back tomorrow, but it might not! And no percentages, like its 50/50 whether it returns,  make me feel happier, or worse. I can't appreciate being 'cured for life' till i die!
Its a funny old world.
Well its coming up to my 5th 3 monthly check up, from the neck up! I don't know why i always feel the need to say, 'check up from the neck up' cos actually its from the neck down! Of course the same old fears arise. I have a lump in my groin, but I'm sure its scar tissue. Itching, sweats, and of course they can all be explained away, but equally 2+2 can be put together and add up to 5!
What a way to live my life, and I'm not the only one.
So don't assume, 'He/she is in remission. He/she is cured. He/she is back to normal.'
Yes we are 'normal' but its not 'back to normal'. This is our new normal.
A new normal, filled with anxiety, some well hidden, some not hidden at all. I would liken it to post traumatic stress disorder. Well i suppose it is PTSD for some people.
So many relationships are lost due to cancer. Friendships, spouses and partners, and sometimes family members. Usually people who don't understand and can't empathise. Or can't be bothered to empathise. Its too much like hard work to try and understand how someone is feeling. They don't want to waste a few minutes of their healthy life listening to what someone else has been through.
Theres nothing better, in a world of very little understanding, to talk to someone, and they 'get you'.
Its a lonely life where you feel its best you keep quiet, although you'd like to 'educate' someone or unburden yourself, just striving for someone to understand. But if you do, they think, 'here she goes again, GET OVER IT!'
Thank goodness for the UK Hodgkins Lymphoma Support Group.

01.08.15

Helloooooo
I thought earlier i must blog about something, but i can't remember what!
So I will tell you about my return to Facebook!
I went off FB 4 and half months ago. I was getting a bit wound up by all the activity on there. It seemed to me everyone had an active social life except for me. My usual social life had disappeared since i started chemo, obviously, and i imagined it would return after my treatment finished, but sadly i was wrong. Ive been informed its cos people don't know what to say to me??? But to be fair, they don't need to say anything, i can talk for England!
So to stop getting wound up, i decided to come off of FB. However, my saviour, the Hodgkins Lymphoma UK site, is only accessible via FB so i had to still log on so decided to use my dogs profile, Loki. Not everyone understood why i wasn't 'their friend' anymore, but most were ok and didn't give me a hard time.
So many of my 'friends' from the lymphoma page added me, and many from choir, and gradually my friend list got longer and longer, and last week when out at a charity disco (that was an experience) Rachel took some photos and wanted to tag me in them. As my social life seemed to have returned, i decided to take the step to return as Jill.
Firstly, i changed my profile picture. The comments and 'likes' i had was immense. Made me feel so good. All my friends welcoming me back and telling me i was looking good. I sort of forgot they didn't know what i looked like - theres been a change in the last 4-5 months. Id like to say more of a change, like 3 stones worth of change, but no! So i was welcomed back into the fold.
But then, i noticed some 'friends' had unfriended me. One had not only unfriended me, but my sons too! Its funny how people think its all about them!  Its so sad really cos i need good friends now after what I've been through.
So...the charity disco!!!
We arrived in style - i drove! Myself, Rachel, Linzi, Mark and Simon.  The boys plied me with J2O's, even when i said id had enough. Some of the people there were 'unusual'. The DJ did a robotic dance half way through. I stared open mouthed at the ridiculousness of it! If thats even a word, ridiculousness??
Despite everything, we had a good time. Lots of silliness, as you can see by the photos.

At home time, (it didn't come quick enough) a curry was mentioned. So we drove to Joy in Ferndown and piled in, tummies rumbling. Oh my goodness, it was yummy. It was midnight and we were eating curry and naan and all sorts of side dishes, not to mention the poppadoms. Im getting hungry just thinking of it.
The conversation was interesting and a bit heated at times. I loved it!!
After all food was demolished, we headed back to the car. Some doughnut (Mark) had left the door open. Not unlocked. OPEN. Luckily it was late at night so there wasn't any takers!
I dumped them all back at their gaff and off home to lay in bed, stuffed and uncomfortable. I woke with a huge hangover, which is odd considering i didn't even drink alcohol!
I think you could say it was a good night.