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!

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.

15.07.15

Hello. Its been a while!
I thought id rear my head today as its a year since my last chemo. My first anniversary.
So what's new?
Remarkably not much.
The diet hasn't shown its face since my holiday in Brittany! Ive still lost a stone, but its up and down. Ive started doing it many times and then i get invited out to different eateries and it all goes out the window.
At least I'm being invited out now tho, although its the same people.
Since my hols I've been to choir, about 9 times. 2 were performances where i sang solos! And although the second performance i was recovering from a chest infection, they weren't too bad!
Im no Beyonce tho!

Thats me singing in the front!

Ive been Prefect a couple of times with Kelly whilst Tee was away. I enjoyed that. I need a purpose in life I've decided. I need to be useful and needed! Other than cleaning up the kitchen after Sam of course.
Ive seen the lovely Lyn, sometimes accompanied by Rose and Nat, or Nose and Rat as i affectionately call them. We've been for lunch, for dinner, for a party, for walks. They are a constant stream of amusement. In fact today, for my anniversary, Lyn took me out for lunch and plied me with Prosecco!

Had a lovely time. 

Ive seen Jane a few times. We go back a long way. We're like 2 peas in a pod although i do recall once going in to an office for a meeting and it was commented that Jane had brought her mum along! Bloody cheek!

We went for a cream tea the other day. I didn't realise where the venue was - it was one of these groupon things. We ended up driving to Fareham, nearly an hour, for the most revolting cream tea I've ever had. The sandwiches were made up with different types of bread, which intrigued Jane quite a bit. She doesn't get out much! The little cakes were stuck to the plate. The jam was more like Gelignite! And the cream tasted a bit sterile. Similar to Drapolene!

We did have a treat on the way home tho. Stopped at a red light and a motor bike drove past and turned and looked at me. More of a stare. When the lights changed to green, he revved up, and zoomed off, doing a wheelie on the way, but an epic fail. I think it was to impress us. It didn't!

'Hi ho Silver, away', and 'Kemosabe' were our catchphrases for the journey home. 

I was invited to a Jewish engagement party which i attended with Lise. Had a lovely time. It was an experience. The bride and groom to be - Ofra and Andrew - were so sweet. The food was lovely, especially the cheese cake, to die for. And i was intrigued by the Grace after Meals. The humour was rife. My table neighbour got himself and his wife a drink (coke in a wine glass - it was all soft drinks). He commented maybe he should have got everyone a drink. Somebody replied, 'It would be a cheap round!' Oh that tickled me!

Lise, me, Ofra and Andrew.

Visited Joe in London. Had a lovely time with him and Jon. We ate and then went for something to eat and then had dinner, and i think we may have had something to eat after all that!!!!

And watched a bit of Ru Pauls Drag Race. Loved it, what a hoot. 

And an evening with Sharon and Simon, which was very entertaining. But then its always entertaining when Prosecco and dips and nibbles are in the mix. A very enjoyable evening.

And of course the odd trip to Chris and Chloe which is always entertaining. 

The negative side is the trips to the GP. Ive been a few too many times. Itchy underarms and hot flushes (both a sign of Lymphoma!), bad back, followed by X-rays of spine and hips, underarms again, a cold which became a chest infection (last time i had a chest infection i had a heart attack!),  and anxiety! 

None of it has been sorted as yet. I still have itchy underarms and hot flushes, chest infection is on the way out, antibiotics now finished. But i have been referred to the rheumatologists. An urgent referral. I got the appointment today, 10th September! I hope I'm still alive by then, id hate to miss it! I may be MRI'd. I was hoping id left scans behind! And of course, I'm still going to bed and waking up half an hour later in a right state cos i haven't done something! Of course its all in my head. And fatigue on top of all this. 

Anyway, its my 3 month check up the end of august. Can you wait that long till i come back with more scintillating tales of my day to day life?