The Furry Monkey

02 FEBRUARY 2009
AT HOME, SNOWING OUTSIDE!

Well who would’ve believed it?  It’s been snowing all night and has been snowing all day and it’s settling very well.  It’s nice to sit and watch but I dread it when I have to go out in it.  I don’t do well with walking in snow, let alone if it gets icy.  It’s bad enough when there is no snow let alone when there’s this amount around.
However, it does look lovely and I like watching snow fall.  Poor Bertie and Domi don’t want to go out in it, they would be lost as it would go past their legs bless them.  Too high for them to walk in it.  Instead they’re sitting close to the radiators and toasting nicely! 

When it’s snowing it’s so eerie.  I looked out of the window in the early hours and it was ‘hazy’ and snowing and it seemed as though I was the only person in the whole wide world.  A lovely feeling I can tell you – sometimes I’d love to be the only person around and do what I like with no problems with anything else like health, money, worries, people, you know....the world in general...!

Thanks to all of you for your lovely emails of support.  It’s helped to brighten up the days and make the world a better place for having all of you in it.  Cindy your email was SO special – you made me cry in the nicest way and it’s an email I will keep and reread whenever I’m feeling gloomy!  Life has a way of kicking you in the teeth sometimes, but then there are people like you and others who have emailed me who make a HUGE difference to others.  Thanks!

John has had a few hospital appointments lately.   You know he’s had problems with his legs for months now.  He is being treated in the Ulcer Clinic every week but it doesn’t seem to be getting any better.  I think I told you all that I intervened (and John hated me for it and let me know by giving me the ‘silent treatment’ for a while).  I only did it for him though, to help get him referred so that his legs will finally have a chance of healing if there is someone in the ‘loop’ who knows (or might know) what it is and how to solve it.  It’s worrying for all of us and you never know with this old thing called the ‘human body’ do you?  It shocks and surprises you all the time so I’ve found.

He’s got to wait for more tests, ultrasounds, biopsy, bloods, hopefully they will find out how to solve this thing once and for all.

 

9 FEBRUARY 2009
LOCAL GP SURGERY – ME!

Yes, another BP test for me.  It’s been high for a while now and then it dips and I feel faint and wobbly.  Not nice believe you me.  Still not under control – but at least we had a giggle with the Nurse.  She’s got a similar sense of humour to me and it’s good when you can talk to people and have a real belly larf!!!

 

10 FEBRUARY 2009
LYN’S FUNERAL – THE DAY I’VE BEEN DREADING

It’s been a wait for the funeral service, but the Chaplain from the hospice was going to do the service and she was so busy this was her first free day.  That’s quite sad really isn’t it.

As I said I’d managed to arrange transport to Lyn’s house and my friend dropped me off so I was nice and early.  I was going to get a lift to the Crematorium with a friend of the family who drove Lyn to her hospital before.  I’d not met the lady before but she was very friendly and was a volunteer – there are some really special people out there who do these things for nothing, giving up their time and helping others. 
We got the Crematorium, I’ve been to that one before for my Aunt’s funeral but it was a long time ago and I couldn’t remember it much to be honest.  You know my memory is ‘crap’ (medical term LOL!).

We sat in the waiting room and I saw a few familiar faces.  These occasions are never good and as Lyn always said she didn’t have many friends there was a lot of family and people there from different groups.  She would’ve been proud I thought!  Even if you don’t have a lot of friends, it’s those who are important, even if there is only one or two.  It doesn’t matter one bit.

We then had to go into the ‘Chapel’ area itself.  There was some lovely music playing and as I have problems with my legs I sat at the back so if I got cramp I could go out.  Little was I to know how much a good idea this was but not for that reason.
Again I’m sitting here with blurry eyes, it still upsets me a lot and I think of her a lot.  When I’m out and see something that a friend or family would like I buy it and put it away ready for their birthday or a special treat, then I realised she isn’t here and I saw the perfect thing for her.

Back to the funeral.  The service went ahead, there was some nice hymns chosen and a reading was done by her cousin.  He chose some good memories of her...ones I could imagine happening!  I didn’t know her as a child but could picture that perfectly.

Then they played the song for everyone to leave by.  It wasn’t the one her Mum had mentioned they were having before and .... well I just lost it.   They played another song she loved and the words took on a whole different meaning and I just couldn’t hold the tears back anymore (well the red eyes) and I had to go out. 

The lady who had given me a lift came out and stood with me and said “It’s probably just hit you now” and I think she was right.  I know she had died and I wasn’t going to see her again but this was final...this is it....the end.  Our plans we had made were never going to happen and my friend of over 20 years had gone.  No more laughs and no more chats, no funny emails, nothing.

We went to her car instead of going with everyone else – I couldn’t stand there like this.  Crying...I could hardly talk – I find it hard when I’m crying to talk.  I just need loads of tissues to blow my nose really.  Doesn’t sound good but it affects me that way.

We talked about Lyn and Maureen (the lady who helped me) said that we’d shared a lot over the years, more so than other people with both of us having cancer.  We had some different experiences of course, but there is a similarity and there is a ‘bond’ with someone who has been through cancer the same as you.

It’s going to be strange without you Lyn, but I hope wherever you are, it’s better for you.  See you at Rainbow Bridge when my time comes.  At least you are reunited with Bobby now, I bet he loves seeing you again!!! 

 

13 FEBRUARY 2009
WHAT ON EARTH IS THIS PAIN????

Well I’ve had some aches around my mouth and I’m used to permanent ulcers and feeling like someone has got a razor blade and shredded the inside of my mouth.  This is a new one though...this is not a series of ulcers.

The whole side of my mouth hurts and aches.  I can’t eat that side and it’s throbbing like crazy.  The weekend follows and it gets worse.  I’m using painkillers like smarties and it’s not helping at all.  The hot water bottle at night which I rest the side of my face on helps but not much.  I take a mix of tablets and manage to get some sleep but not a lot.

 

18 FEBRUARY 2009
HOPING IT WOULD GO AWAY BUT IT WON’T...SO DENTIST HERE I COME...!

I’d made an appointment a week or so ago for June for a check up – the only appointment they have but I can’t stand this now.  I’ve been in pain for a while and it’s not going away. 

So the Dentist was phoned and I made an emergency appointment.  It’s going to cost mega money as it’s an emergency but I can’t stand this pain anymore.  I’ve not had pain like it before in my head/mouth/neck/ear/face/eyes/forehead.  You name it and there was pain there.

I got to the Dentist (luckily my aunt came with me in case there was anything needed to be done which put my mind at rest just in case) and had to fill in a “Health Questionnaire”.  This was fun!

I had to put all my health problems and the list of my drugs I take on the reverse as there wasn’t enough space in the boxes.  How embarrassing huh!  Not a lot I could do though as it’s what happens now.  I used to be healthy once, but not now L 
When I got in there, he was still reading it and asked me lots of questions before examining me.  He was a good guy and we got on straight away and had a giggle (which I did with pain!).  After examining my mouth quite thoroughly and asking more questions he said I wasn’t going to like him...oh no what was he going to do to me????  It’s bad enough with Doctors scaring the life out of you, not a Dentist as well.
He said he wasn’t quite sure as it was borderline.  He was going to ask me to live on painkillers for another week and see what happens. 

So what is it?  Well it could be root canal (arghhhhhhhhh noooooooo I’ve had one of those before – that was what sent me to the Dentist after a longggg break – due to being scared so much by a Dentist I never went back for ages!) or it could be sinusitis.  He suggested Menthol Inhalations and couldn’t give me tablets as what they normally give would kick my kidneys into touch!  Not a good idea.

So it was back to the Chemist to get some Menthol, find a warm jumper to put on my face with the hot water bottle and ‘brave it out’.  Not looking forward to this.  I was convinced after another few hours that was getting worse and worse that it was root canal.

 

19 FEBRUARY 2009
LOCAL GP SURGERY – AGAIN!

I should put in a recurrent ‘paste’ here.  Another BP test.  Still high but Doc has given me something else to try and hopefully it will start to show that it is working soon.  Fingers crossed.

 

19 FEBRUARY 2009
THIS IS BAD....CAN SOMEONE PLEASE PULL MY HEAD OFF!!!!!!

By the Friday it was awful.  So much pain and I was getting through way too many painkillers.  After being ready to pull all my teeth out with pliers but I was in so much pain I couldn’t move to go downstairs and get the pliers.  It was that or pull my head off too. 

I made another appointment for the Saturday and couldn’t wait for it to arrive so I could get this sorted.

 

21 FEBRUARY 2009
PHEW...AT LAST....BUT HEY WHAT IS GOING ON...?

Well it is here at least.  A sleepless night again and I was ready for whatever the Dentist had to fling at me.  So why was it feeling a bit better?  I don’t know but I don’t care.  To feel that pain easing a bit was wonderful. 

Now what do I do?  Go to the Dentist anyway or phone and cancel and pay another charge?  I decided to go and see.  You never know it’s eased off before and then come back.  It’s best to check just to make sure.

I arrived at the Dentist and said it felt a bit better now.  The receptionist was really helpful and gave me a prescription for some antibiotics and said if it comes back to take them but only if required.  I got them on my prepayment too which helped.  Not an expensive private prescription which I’ve paid for before and not used!

She also said I wouldn’t be charged a cancellation charge as they had double booked me anyway so that was a relief too.  Now I had my prescription in hand and was ready to see what happened.  I’d got a follow up appointment booked for Wednesday so we’ll know by then what it is going to do.

 

23 FEBRUARY 2009
A DECISION MADE....

This is the decision I spoke about previously.  I’m resigning as Chair of the Charity I helped start with a few others.  All the hassle was making me ill and Mum and John said I should’ve resigned a longgggg time ago but I didn’t.  I’ve not had any confirmation from anyone and it’s a bit like being in limbo but I sure do feel better for doing this!!!! 

 

26 FEBRUARY 2009
UCH HOSPITAL, ONCOLOGY CHECK UP!

My regular check on the NHL has come around again.  I saw the Registrar this time and not Dr Cassoni.  The clinic was running an hour late but at least Transport arrived and I got there this time.  You all know the transport problems I’ve had with UCH.
Anyway I was sitting there reading my book and watching everyone else go in and the clinic almost empty before filling back up again and I’m still there.  It happens a lot but I sit and wait.  Finally my turn comes and my name is called.

I walk to the Consultancy Room and sit down.  I’m then asked how things are going and I say not bad, lots of pain in the bones and something not related is causing pain too and she asks what.  I tell her about the pain in my neck/face/eye/head/mouth/nose/teeth etc.  She asks how long it has been there and then I get on the couch to be examined.

She checks my leg and puts her hands on it and squeezes.  Here I nearly hit the ceiling and she says “Oh is it that painful?” and I reply “Yes, it is”.  She didn’t realise and is surprised.  I have lots of lumps on there from the CRPS and they’ve not gone away but are still really really painful.  Even the cats can’t brush against the leg but they know that now! J  She said that she’d noticed I’d had some biopsies, that’s when the lumps appear.  Last time I had an x-ray to check first.  Less invasive for me which is good news for my poor old body now.  It’s had a really big battering lately!
She then examines my lymph nodes and checks them all over.  Finally asking me to get up and put my compression stockings back on (she is impressed they are black ones – makes a change from the old NHS Beige which you normally have!  As I have to have made to measure because of the strange shape of the leg now I can have a choice of the colour black – so as it looks so much better in the winter months I took them!  They do look smarter I must admit.  Well worth the wait!

Then she hits me with a bombshell I wasn’t expecting.  She said if the mouth problems don’t go in a month I am to go back for more tests as it could be indicative of Lymphoma.  Wow.  I hadn’t even thought of that.  I was thinking root canal again.   

She asked me to have a blood test there and then and to keep an eye on it and go back if needed.  As I said I hadn’t even thought of that and it was a shock to be honest.  She also said my bones were still healing which is good news...at least it’s still going the right way.

 

28 FEBRUARY 2009
ANOTHER DECISION MADE....

All this decision making is good!  I’ve also resigned as the Vice Chair of the local CancerVoices group too.  It wasn’t going anywhere and it had turned into a ‘coffee group’ more than anything and I like to do things more positive for cancer patients as you all know. 

Along with all the other things going on it’s better to concentrate on “US” for a while and this is what I am going to do.  Who knows how long we have on this planet and I’d rather concentrate on getting things sorted for us and making the most of time now, than work myself into more illness for people who don’t appreciate it.

Strange isn't it...you work alongside people and think you know them and it turns out you don't know diddly squat.