Tuesday, 28 February 2012

Tuesday - Part Two

New Cancer Centre
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We arrived back at the hospital just after two - but there was an even bigger queue for the Oncology car park, so we parked a little further away. It was a pretty mild day and it was nice to get some fresh air and have a bit of a walk.

This time we went upstairs to where Ward 202 is located. On the stairs on the way up there were some great local paintings - a little like Lowry's but with pot banks. They were huge and colourful.

There was a central waiting room upstairs with a reception desk. They seemed confused when I said I had an appointment - so I had to produce my letter to prove it! It turns out that they had made an appointment for me on Friday but then couldn't get hold of me. We checked phone numbers and they were correct so I'm not sure what happened. Anyway, Wendy my special nurse was there and sorted it out.

We were called in to see Dr Gahir, who shook our hands and asked me how I was. She thought I looked well! She said she'd discussed my case with another colleague and they had decided that they had to make sure this cancer is gone. So they are going to give me chemotherapy alongside the radiotherapy. It will help the radiotherapy to work better. It seems that you only get once chance to have radiotherapy so they have to make sure that they cover everything. This is why they are going to do it on both sides on my neck in quite a big area. This means that it will definitely make my throat too sore for swallowing - so they are going to arrange for me to have the tube into my stomach.

The chemo will be given in two doses. One on my first day of radiotherapy and the next halfway through. So on 19th March I will go downstairs for my radiotherapy, then will come upstairs to the Chemotherapy Suite to spend the rest of the day in a chair with a drip. It takes most of the day because they have to spend the first and last two hours putting fluids through you. One to prepare you for the drugs and the last to flush you out after the drugs have gone in.

She said it will make me sick, but they'll give me some anti-sickness medicine. It may make my hair thinner but it won't all fall out. I have to be very careful not to get any kind of infection during this time, as it could be dangerous as chemo destroys white blood cells and other good stuff along with the evil cancer cells. So, they will issue me with a thermometer and I will have to take my temperature every day. If it is ever raised, indicating an infection, I will have to go into hospital.

I signed the consent form and they said I could now have the Understanding Chemotherapy handbook for my collection. :-)

Before I left I solved the mystery of  Dr Gahir.

 I have seen Dr Gahir the lady doctor, whereas Nigel - who commented on my blog and told me his story - saw Dr Gahir who he insisted is a man! I asked her and she said that there ARE two of them, both have the same initial too D - and he is her husband :-) She said she worked there for six months before he did - but since he arrived there has been a lot of confusion. On his first day all her clinic appointments disappeared from her computer.

She gave me two forms, one for a blood test that I need to get done at the Pathology Lab just before I start the therapies and another for me to collect a recepticle from the lab so that I can collect my urine for 24 hours. This is because chemo can damage the kidneys so they have to check out how healthy they are before you start. So I need to take this back into the lab (suitable filled) on the day I get my bloods done.

Also I have to go back on Saturday, for a pre-assessment, at 12.30.

Also before all this kicks off I have to get my "peg" put in. This is the feeding tube. When we got out of the doctor's office I asked Wendy what this entailed. I had just presumed that they'd just poke a hole in from the outside.


What it involves is going into hospital for an overnight stay, they get you to swallow a tube with a camera on the end, once you've managed that, they sedate you so that they can get it into position. Then they make an incision and feed it out from within. This is then taped to your stomach so that no-one can see it. They then keep an eye on you overnight to make sure it "settles down". That doesn't sound too pleasant.

After that I will see a Nutritionist every week so that she can decide whether I am managing to eat enough to maintain my weight. If not then I have to pour stuff down the tube. Not sure what kind of stuff - I guess they'll tell me when the time comes!

So I came out in a bit of a daze with a huge list of appointments and forms for all these various things. It will take me a while to get my head around all this. We did have a laugh when we got to the path lab and collected the receptacle - it was just a plastic carton with a screw top lid, the kind you get white spirit in from B&Q. They suggested that I buy a funnel.  I'm going to have to get a bigger mug for my tea if they want it filling to the top. :-)

It's going to be an interesting few weeks....

Commercial Break

For anyone who didn't see the Sentinel article - here it is!

Click here for bigger version

Tuesday - Part One

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I didn't know what to expect this morning as I have no idea how you make a mask for radiotherapy. I had visions of it involving papier mache and being very messy. But no - it was a strangely relaxing experience!

Which was good after the stress of trying to find somewhere to park. We had to queue up as usual until the man in the fluorescent coat allowed us in. In fact I had to nip out before that, while Nathan was still in the queue, as I was worried I'd miss my appointment.

The Cancer Centre is now in the new building and is really nice. I booked in at Reception, where I met one of my library customers! He told me he'd read the article and he was there because he has lymphoma. He was there for his chemotherapy appointment.

I went into Waiting Room B in the Radiotherapy Suite and sat on the swish designer purple seats. The walls are painted green - which is meant to be a restful colour. I wonder if they think of these things when designing hospitals. It was all very quiet and there was only one other person waiting.
I was called into a room by Pat, a senior radiotherapy technician, and she explained what they would be doing. She asked me to remove my top and lie on a bed. This was then raised and she prodded and poked me until I was in exactly the right position. She said I'd get used to being moved around like this over the next six weeks.

She then put a sheet of blue, thermoplastic mesh into hot water. "When it is ready we'll put it over your face, just think of it as a kind of facial treatment!" So three of them lifted it out of the warm water and placed it over my face, neck and shoulders, then pushed it into place round my eyes and nose. I could breathe okay as it was full of holes. It was lovely! It was warm and I had to lie there for four and a half minutes while it cooled and hardened. I loved it - it was like when you put on a mud face pack and then wait for it to go dry out and go hard. Very pleasant :-)

Then when the time was up, they all removed it carefully and hung it up to harden. There was my face looking at me.

Pat told me that I need to come back on Thursday (1st March) to have a further fitting so that they can tweak it to fit exactly, then I will have a CT scan with it in place and it will be marked where the radiotherapy needs to be aimed at. Then the treatment will probably start on 19th March.

She asked if they had decided about chemotherapy and I told her that I was back this afternoon to see Dr Gahir, so would probably find out then. She wanted to know if I'd been told about the feeding tube into my stomach, and I said yes. "Will it definitely happen?" I asked tentatively. She nodded. "We have to keep your weight up" she explained "or otherwise your shape may change and the radiotherapy will be in the wrong place." It seems my throat will be so sore that I won't be able to swallow much.

"Anyway" she said cheerfully "the side effects don't all happen on day one - they creep up on you gradually." With those comforting words we left.

We managed to get a parking permit though - it last for eight days and cost £4. Which is much better than paying £2 per day. Even though we are only visiting three times this week - it is still cheaper! We checked out where Ward 202 is - it is on the first floor, them came home for a nice cup of tea and a sit down.

Back later....

Monday, 27 February 2012

Twice in one day!

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Hello again

Well - I have a few more visitors to the blog since it featured in The Sentinel, our local daily paper, at the weekend. I had been a bit worried about which photo they would use and what they would write. I liked the photos though - and although I don't remember saying "If only life was like a game show" the rest of it was accurate! I was happy that they got the blog address correct and I have already been contacted by someone who has the same diagnosis - another CUPcake :-) It's great to compare symptoms and to know that he has been cancer-free for 18 months since his op. We even have the same consultant.

If you are not local and didn't see the feature then I have asked The Sentinel to send me a pdf file of it so I can add it to the blog. It's a shame that the weekend magazine isn't on their website.

I had a reasonable weekend - even ventured out to Cheadle to see my parents. It was a nice day and the pain did seem to be getting less. I can't believe how much it tired me out though - I slept for the rest of the day!

I had another letter from the hospital today. I am getting to recognise them now before I even open them. It is an appointment for the clinic in Ward 202 of the Cancer Centre tomorrow at 2.30pm. I already have one for 9am in the morning - which is for the mask fitting. This one, I guess, could be when I see Ms Gahir so that she can tell me what the team have decided about my treatment plan. Will it include chemotherapy or not? I am hoping not.
Watch this space....

Friday, 24 February 2012


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Black Folder of Doom!
It's been a couple of days since I've updated this, mainly because I've been in a bit of a daze mooching round the house. I think it's the painkillers - they make you dozy.  Still they are taking the worst of the pain away so it is totally worth it. I have started rubbing Bio Oil into the scar - it is meant to be good for minimising the appearance of them.

I have a new appointment letter to put in my Black Folder of Doom. I have to go to the Radiotherapy Department on Tuesday morning at 9am to get measured up and fitted for my mask. This is specially made for me to wear while they direct the radio waves at me during my treatment. Oooh - I hope it's Classic FM that's so soothing :-)

Thanks for these Auntie Anne :-)
I haven't heard from Dr Gahir, so I guess she will see me when I go on Tuesday. So, no news yet about whether I need the chemotherapy or not.

I have to have 30 radiotherapy sessions over six weeks - so Monday to Friday then I get the weekends off!
Before that starts I have to have another CT scan wearing the mask so they can mark on it where they need to fire the lasers. It's better than tattooing it on my skin I guess.

In other news my mum tells me that there is a photo of me and Roy Walker in The Sentinel tonight - advertising the Weekend Magazine tomorrow. So that means I must be in! Must remember to get a copy :-) Hope the photos came out okay - or I'll be wearing my mask permanently!
In the meantime I need to rent out The Mask from Blockbusters to see what's involved. I vaguely remember when you put it on you turn green and say "Sssmokin'" quite a lot. Time to P A R T Y!! xx

Tuesday, 21 February 2012

Song to Painkillers :-)

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#Wonderful, wonderful tramadol capsules#

( Sung to the tune of Copenhagen. :-)

What a great painkiller! It has dulled the pain and made it possible to relax and concentrate on things. It's a great feeling! I can still feel the tautness and pulling but it's not so painful.

Something else that made me feel better was a delivery of the most beautiful bouquet of flowers. I've added a couple of photos. Thank-you so much to all the staff at Newcastle Library. They came on just the right day!
Wow - there really was a lot of information to take in yesterday. I'm not sure that I remembered it all but I'm back at the hospital later in the week so I can go through it again. I have decided that the best way to deal with it is to tackle one day at a time. No point worrying about what the side effects might be - I won't get them all!   I'll see what each day brings and deal with that.
Everyone is being so lovely. Our friend Pete arrived last night from Congleton with several cases FULL of films and TV shows on DVDs. There was so much choice! I selected a few that I thought would keep me amused when I've got no energy to do anything else. Do any of you remember Poldark? I remember watching that when I was at school. Cornish historical drama from the BBC. Will be interesing to see that again. We used to use the word Poldark as a euphemism for pregnant at school - but I have no idea why. I will be able to find out. Also chose, among others, a film about Marie Antoinette - as I've recently read a biography about her by Antonia Fraser with my lovely Book Group. Thanks for those Pete!

Now I am off to have a little dance around while the pain is still at bay! If you are pain-free today don't take it for granted - make the most of it! Jump around, do a waltz or whip your hair back and forth - whatever floats your boat.... :-)

Monday, 20 February 2012

Next Stage of the Plan

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Went up to Central Outpatients in plenty of time for my 10.30am appointment as we thought there'd be a bit of an issue with parking. We had to queue to get on the car park. There was a chap with a walkie talkie at the top letting people in one at a time - as someone else left. I did manage to check in at the screen and get my little ticket to take to ENT by 10.20am though, so not too bad.

I'd only got halfway through my "easy" Su Doku when my name was called. I haven't been on a Monday before, but it is the day when you get to see the whole team!
I went in  and there was Mr Hughes in his sharp suit, Wendy my special nurse and Ms Gahir, the consultant oncologist, as well as another doctor who I'd never seen before. Oh and Mr Julian of the Awesome Hat popped in too.

Anyway Mr Hughes spoke to me first and asked how I was. I told him about the neck cramps and pain and he just said it was normal. There's less muscle there now and "you have to remember that large flaps of skin and muscle were pulled back as far as your skeleton."
 I couldn't actually remember that - as I'd been fast asleep at the time. Anyway, it seems that the solution is stronger painkillers, so the new doctor I'd never seen before wrote me a note to give to my GP that says they recommend that I have some Tramadol. I can supplement this with Ibuprofen if I like.

I asked Mr Hughes  if the biopsies taken during the operation had given any further clues as to where the primary cancer had been. He said no - there were definitely poorly differentiated adenocarcinoma cells, which is pretty rare in the neck area. I'm part of just 2% of cancers. Bit of a rare breed :-)

Mr Hughes looked at the scar and said that it had healed really well and I could start moisturising it now. Seems I need to keep it moving and stretched so that I still have movement in my neck. He told me that he had removed 44 nodes from my neck and 23 had cancer in them. So that was quite extensive - although limited just to the right side of my neck. So he was handing me over to the Oncologist for the next stage of my treatment which would be radiotherapy and chemotherapy. I asked if he had taken any salivary glands, as I hadn't had any problems with dry mouth, and he said he'd only taken one small one.

"Here's the lady who's going to give you a dry mouth!" he said cheerfully as he sent me off with Ms Gahir. I was a little concerned at this point as no-one had even mentioned chemotherapy before. Ms Gahir was lovely and looked carefully through all my notes and asked me to take her through what had happened so far. I told her (maybe I should have just directed her to this blog :-)

She said that most cancers of the head and neck are squamous cell cancers, so I am unusual in having adenocarcinoma in this area. I asked her to tell me more and she explained it really well. My type comes from a gland where the squamous ones tend to be linings - like the mouth or nose or lung. She said that they were not sure yet about the chemotherapy. There are many studies into the use of it with the squamous cell ones in the head and neck - but because you don't usually get the adenocarcinoma here there are very few studies into the effectiveness of it with this type of cancer.

If they do go with it they will use Cisplatin, which doesn't make you lose your hair - but is one of the ones that makes you feel pretty sick.

So, to make sure, she wanted to speak to the pathologist who put together the report on the biopsies and also to her colleague. She wants to get the treatment just right for me. "Because you are so young and fit" she said (Yes - she really did say that !! :-) they want to get rid of this and make sure that it doesn't return.

She then had to go through the procedures and side effects so that I could sign a consent form for the radiotherapy. I have aquired a new booklet for my folder "Understanding Radiotherapy" she kept the "Understanding Chemotherapy" one on her desk for now. She said that she would call me back on Thursday or Friday when they have decided about the chemo.

Then I will have to have a special mask made for me to wear while I am in the LinAc (Linear Accelerator) having my radiotherapy treatment. I'll also need another CT Scan (Yay! I liked that one ;-) before they start so that they can target the exact areas. They are hoping to just limit it to the one side of my neck as it is going to make my throat very sore inside and out. It will give me a dry mouth too and swallowing may become so painful that I may have to be fed through a tube into my stomach for a while.

She did say the operation I just had was the easy part - this is going to knock me about a bit. Seems by the end of the six weeks I am going to be feeling pretty sore and exhausted.

The good news is that this should cure the cancer that is still lurking and prevent it coming back again. So it will just be a few months discomfort (did you know that radiotherapy goes on working for 6 weeks after you stop the treatment?) then I should be able to get back to normal!

Mr Hughes said that I will be seeing him then for the next 5 years, so he can keep an eye on me.

Altogether I was in there for over an hour and I'm not sure I've remembered everything that they told me. I now just wait for Ms Gahin to call me tomorrow, with an appointment to see her later this week in the Cancer Centre. Then it will be all systems go...

Sunday, 19 February 2012

I could crush a grape :-)

 Hello again!
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Some of my cards and flowers :-)
Tomorrow is a big day - off to see Mr Hughes, my consultant at Central Outpatients. Hopefully he will be able to give me the results of the biopsies they did on the lumps they removed during the op a couple of weeks ago. Then he should tell me whether I need any radiotherapy or not. I am a little apprehensive, maybe they have discovered where the primary was or can tell me what type of cancer started this all off. That would make it easier to treat, knowing what we are dealing with. I am not looking forward to having radiotherapy - but I think if he says I do need it then I won't mind. It is like a little extra insurance that they have got all those evil little cells! Like Mr Hughes says - "a belt and braces approach". So watch this space tomorrow!

More of my lovely cards and flowers
Meanwhile I am still feeling cramp (Oooh I could crush a grape! :-) The pain seems to have moved today though - so I am feeling happy. It feels like progress. There was quite a bit of skin on my - ahem- chest - and neck that I couldn't bear to touch or have anything touching - not even clothing or a scarf as it felt so unbearable and set off the cramp worse than ever. Now that area has got much smaller, there's just a little patch now on the right side, which is where the cramp has relocated to. So if one bit has stopped I'm sure when these other nerves have managed to get it together - this will stop too! Yay!

On Thursday another photographer from The Sentinel came round as they said they needed more photos for the feature. Sean arrived all bright and breezy and told me he wanted to take me down the marshes for some lovely outdoor shots. I was a little apprehensive, as cold makes the pain worse, but he said he'd whizz us down there in his car. So, as the sun was out I agreed. He asked if I had a brightly coloured coat - maybe a red one? I don't. He settled for my brown jacket with the furry collar and a brightly coloured scarf.

He found a bench for me to sit on and got me to pose with my legs up on the bench. He then stood in the middle of the busy road and fired off loads of shots. I was afraid for his life as cars were zooming up and down.Then he decided I should lean on a tree, with my leg up behind me. He keep saying - "Smile!" I explained that I couldn't really smile as so many nerves had been cut - and he just said "Yeah - but show me some teeth - I know you've got teeth!" I did my best - but goodness knows how these pictures will turn out. It is going to be in next weekend's magazine, if you need a good laugh :-)
I have been trying to get back to normal a little. I did some Parish Council work - just to keep my brain from turning to mush. It felt good! There is only so much Homes Under the Hammer you can watch in a lifetime! Plus, I have got stuck in Bubble Witch Saga on Facebook. So - if any of you play - I need help to break the magic spell and get into the Old Forest! It takes 3 friends to say they'll help - and I need one more. Help me out!! Hmmm,  maybe I am getting into this a little too much...

I did venture out to Morrisons yesterday too - just to get out of the house. The cold made the cramps worse, but doing something normal like browsing around the shelves distracted me for a while.Today I am going to make some cherry scones - as all the fairy cakes from last week have gone. So, if you fancy one feel free to pop round and visit!

Wednesday, 15 February 2012

Busy knitting nerves....

Happy times at Belgo's
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Well hello again :-)

Allow me to apologise for yesterday's miserable blog. What a moaner I was! I've attached a smiley picture to make up for it.

Nathan said to me "I've never heard you say 'It wrecks' before" and that's because I've never needed to say "it wrecks!"  before yesterday! It  was a bit pants, but when I went to the doctor's this morning she told me that all this pain and cramp is actually a good thing! It means that the nerves are knitting together and the muscles are actually protecting the nerves when they cramp up with every movement, She said she couldn't give me anything for it as it would interfere with the healing process. So, I just have to keep warm and take the painkillers she gave me last week.

Actually, reading the Cancer Handbook that they gave me at the hospital when I was diagnosed I realise that things could be a lot worse. I don't have to deal with a feeding tube, or loss of hair or prosthetics. I can happily potter around the house and chat to visitors and admire the flowers and cards that keep coming. I am so lucky.Thank-you to all of you who've sent cards and stuff. I especially love the lucky ballerina mouse that sits on my fireplace (thanks Coleen!) It's very cute :-) People are so nice!

I was very happy to see Tracy today who brought me up to speed with everything I've been missing at work. From the alcoholic, but charming, chap who thinks we don't notice when he swigs strong cider from the huge blue bottle he secretes in his Co-op carrier bag to the lovely book group regulars who have been asking how I'm doing. I was gutted to miss the training session for the new library system that we are going to have installed in April. It sounds like it has some impressive features. Hopefully I'll pick it up quickly enough when I get back.

Also saw my good buddy Janet who has suggested that when all this is sorted and I've had all my treatment then we should go off for a girly weekend. Should it be a spa or a posh hotel and shopping? Or why not a spa hotel AND shopping? It will be fun planning it over the next few weeks.Any suggestions gratefully received......

Valentine's Day

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Hello. I hope that you've all had a nice Valentine's Day.

Mine wasn't the best as I am still in pain with this horrible cramp and muscle spasms. I went to see the nurse at my GP's surgery at 1pm and she said that the wound has healed really well and there is no infection at all. She wasn't sure about the cause of the pain though. She said that she's never seen anyone who's had the Radical Neck Dissection before so I really ought to see a doctor to get it checked out. So, I have an appointment  booked for the morning at 8.50am.

It has been really painful again so around 4.30 this afternoon I thought I'd try emailing my specialist nurse, Wendy at the hospital. She said I could ask her anything, so I tried to explain this problem as best I could. She rang right back and said that Mr Hughes is on leave this week, but she would ask one of the other consultants tomorrow and get back to me. She thought that it sounded like nerve pain, but if the doctor thinks I need to be seen this week she'll sort it out. I thought that was really good :-). She suggested getting one of those wheat bags that you can heat up - and I told her I already got one yesterday and have tried it - but it hasn't helped.

So hopefully by tomorrow I might have a solution. I thought I was doing so well too - shame I have a bit of a setback. Still had a nice romantic meal this evening at home. Also had a visit from friends from London this afternoon. (Hi Heidi, Hi Si!) I made some cupcakes this morning so I have plenty left if anyone else wants to visit :-)

In other news, I had a call from The Sentinel photography department. They asked if they could come round and take more photos on Thursday. They said they want to make it a bigger feature so need more pictures.

Sunday, 12 February 2012

Fading away?

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Fading a bit?


Here's today's scar picture. I think some of it is fading a bit - what do you reckon? The only thing is, over the last couple of days it has started to pull in a very painful way. People  had said that it might itch so much that it would drive me crazy but this isn't like that.

 It is very difficult to describe, it almost feels like cramp - or as if the edges are trying to pull away from each other really strongly. It gets worse when I go into a cooler temperature and the skin contracts. I tried the painkillers but they don't do anything for it. Nathan has suggested a muscle relaxant like alcohol for example. He's full of good ideas! I have just poured myself a vodka. I'll let you know how that goes :-) *Hic*

Me and Roy Walker from way back!
Meanwhile here's something to make you laugh. this is the photo that I dug out for The Sentinel  the other day, It is the publicity photo from when I did Catchphrase. It was my first ever TV quiz show and I was taken down to Maidstone in Kent an put up in a 5* hotel for several days. All meals were provided and we were chauffeured everywhere. No wonder I got a taste for it! Roy Walker was lovely - although almost as nervous as we were. The thing I most remember is him wandering round the set in his tweedy dressing gown.

Saturday, 11 February 2012

Catch-Up TV

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Hello again, nothing much happening at the moment except I'm feeling very pleased with myself today. I managed to have a bath and wash my hair - all by myself! Up 'til now I've needed help keeping dressings and wound dry, which involved some pretty interesting, chilly (naked) contortions. But now the wound is all healed and dry so I just went for it and soaked in the bath - full length. I admit that the dressing covering the huge drain hole got wet - but I had a spare one upstairs. Though when I took the old one off the hole had completely healed and somehow had shrunk to being quite small :-) So I've left it off. I will have to take a photo of it later and pop it on here for comparison. I'm sure it's starting to look a bit better. The bruising is turning from black to a nice shade of yellow with purple overtones.

I'll still let the nurse check it on Tuesday though.

So being stuck indoors in this icy weather means that I caught up on the entire series of Junior Doctors in a couple of days. I am glad I didn't watch it before I went for my op.Though  I have revised my opinion of my medical student as the ones on TV couldn't get blood out of a patient for love nor money! My guy did pretty well. I wish I'd said something to him to make him feel better. I felt so sorry for the ones on TV when they'd tried 6 times and had to give up because the patient was getting irate.

If you enjoyed Junior Doctors too here's the link to the kind of op that I had - on YouTube:
It's not actually me - some old bloke I think - but isn't it good how when they make the first incisions there's no blood at all? Amazing.. They look like the scalpels are heated to instantly cauterised...

I was really pleased to find a support group online at: http://www.cupfoundjo.org/ They say:

"When a patient is diagnosed with cancer that has spread within the body (metastatic cancer), the primary site of the disease is not always obvious. Finding the origin of the cancer is important to define appropriate treatment.
When the origin of the cancer is not identified with confidence, through initial tests, this is described as Cancer of Unknown Primary site, or CUP.
Each year in the UK approximately 14,000 people are diagnosed with CUP"

That is quite a lot of us - they say we would fill 35 Jumbo jets (cool! where are we going??) -  yet each case seems so different. I haven't found anyone who has the exact same diagnosis as mine. Although a very nice lady called Teresa wrote to me to tell me about her Radical Neck Dissection and how well she felt 9 months on. It made me feel a LOT better, I can tell you.

Back soon with the latest photo....

Thursday, 9 February 2012

I'm Ready for my Close-Up :-)

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Was up early yesterday for my visit to my GP. She was lovely and asked about the op and told me how surprised she was that they couldn't find the Primary despite all the tests and scans they did at the hospital. She gave me a sick note for 13 weeks. She said that was to cover my period of radiotherapy as "You don't want to work while you are having radiotherapy - there are side-effects!"
Of course, if I don't have to have radiotherapy then I can go back sooner! I will find out when I see Mr Hughes on the 20th of this month.

I miss my wonderful colleague (Hi Tracy!!) and my customers. I can't believe how many cards I've had from customers and groups that use the library (Hello Poets! Hi, Lace Ladies!).
She also gave me some stronger painkillers. I think it was a mistake trying to wean myself off them as I was holding myself stiffer and now it hurts even more. So I'll be good and keep taking them for now. At least I can move around a lot easier :-)

When I got back from the surgery I had to try to make myself look presentable as the photographer from The Sentinel was coming at 10am. He was a big, bald cheery bloke called Steve. He accepted a cup of coffee as it was so chilly outside, then he set to work getting me to sit on the sofa (not too taxing!) He also took a copy of an really old photo that I had dug up, of me and Roy Walker, from when I was on Catchphrase As part of the feature they are going to write about good times - my obsession with being on TV game shows! We also managed to get a screenshot from last year's Pointless. he said I could email that to him.

Then at 10.30am the journalist arrived. A very nice lady called Laura, who was due to give birth in 8 weeks. She asked me about the game show fetish first, then asked about the CUP and what I'd been through so far. She asked why I wasn't feeling angry, which I hadn't really thought about before. Lots of people get cancer and are living with it every day. Not sure why it hasn't worried me too much, maybe because they haven't really got to the bottom of it yet - so it doesn't seem real. Or maybe because Mt Hughes told me he was looking at a cure. I have every confidence in him. She said I was very positive.

I was more impressed when she said that she loved reading the blog. As a journalist she usually doesn't look forward to reading stuff that gets sent in, but she thought mine was okay. :-)

So today I'm catching up on some Junior Doctors on TV. My sister-in-law Jan told me that there were a few blood sample takings that sounded like what happened to me! You've got to feel sorry for them :-)

Tuesday, 7 February 2012

Visit to the Nurse

Honey Beer - best medicine!
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Brrr - it's cold outside! Having been cocooned indoors in pyjamas and fluffy dressing gowns and duvets, it came as a shock to step outside today. But I had an appointment with the practise nurse at my doctor's surgery to I had to brave it. I was given a letter to give her from the hospital and they even gave me a couple of the special dressings. They want her to check my wound to see if it looks healthy and is starting to heal and also to change the dressing over the HUGE hole the drain made when it came out.
Heehee - it's probably not that big - it just felt it :-0
Anyway when I walked in she said "What's happened to you?" I told her what I'd had done and she said "A what?" Maybe a Radical Neck Dissection  isn't that common. So I explained what had happened so far. 

She looked very sympathetic and then had a peek at the scar. She said it still looks red around it, but seeing as it is only a week since I had it done, she declared this normal. Then she ripped the big plaster over the drain hole and said "Oh, that is healing BEAUTIFULLY!" I'm glad she was impressed. I asked if we could leave the dressing off but she said that it hadn't quite closed up so I needed a new one on. She did this quickly and smoothly and gave me an appointment for a week's time. So on Valentine's Day I'll be sat in that chair again having my dressing changed.
How romantic :-)

I seem to have cut down a little on the painkillers over the last couple of days. eating still hurts and is very slow though. This is a great way to lose weight. You can only eat a bit before you're exhausted! You look at a chocolate bar and think "Oh no - I can't be bothered. It's too much hard work!" Hmm maybe I will once again fit into those Size 8 jeans that I still have in the back my wardrobe from that time I did the Atkins Diet :-) I'll let you know!

Anyway tomorrow I'm up early to go and see my doctor - he wasn't in this afternoon and I need a sick note. (Or are they called "Fitness notes" now?")

In other exciting news - our local newspaper The Sentinel are interested in doing a feature on me and my CUP. I sent them a link to the blog and they rang me. They are sending a photographer and a reporter round tomorrow morning. It will be in the Good Times/Bad Times section in the Weekend magazine. I'll let you know when!

It will be good to let more people know that this condition exists. I'd never heard of it until I was diagnosed with it. Better go and wash my hair :-)

Saturday, 4 February 2012

Not for the Squeamish...

4 Days after the Operation
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Are you impressed? This is my scar today. I might put one on each week to document how it heals. Although once the radiotherapy starts it may get worse for a while. The white dressing is where they took the drain out. Will I ever get my swan-like neck back? :-)

It is still a bit achey so I can't sleep for more than a couple of hours as it gets stiff and painful after that. I'm not very good at sleeping sitting up, sadly.
I have an appointment to go and see the Practice Nurse on Tuesday so that she can check that it all looks good and change the dressing. Then I have an date with Mr Hughes on 20th February, when he will let me in on the next stage of The Plan. He should have all the results back from the labs by then and we may have more idea what we are dealing with.

Had a lovely pyjama day today, enjoying looking out of the window at the snow, knowing I don't have to go out there. More bits of my hospital experience keep coming back to me. On the first day after the op I had a visit from a nice nurse with a very nervous, large chap in tow. She explained that he was a medical student and would I mind if he had a go at taking some blood from me?  Well, I guess you have to do your bit for education so I said yes. She talked him through it step by step, though it was a little disconcerting when he pointed at my arm and said "Is that the vein?" I was kind of hoping he'd checked out the diagrams at some point before this.

He jabbed the needle in and to my surprise he had hit the spot and blood was coming out. He couldn't get the little bottle attached though and it lost it's vacuum so he had to get another. It did hurt a bit while he was fiddling on the tray to get one as he wasn't keeping an eye on the needle and it was pulling. But he did get two little vials full and his tutor was pretty pleased with him by the time he'd finished. I'd give him 8/10. He could have smiled a bit :-)

I did my exercises properly today. The physiotherapist gave me a sheet with them on just before I left the ward. She closed the curtains around us while she took me through them. Mostly head and neck stretches, with some right arm lifts too. I can do most of them although trying to put my left ear down to my left shoulder really hurts the most. They suggest taking painkillers before you attempt the exercises. I guess you have to try to stretch the scars so they don't heal up too tightly and restrict your movement. I'm pretty happy with how much my head and arm can move.

Not entirely sure about my tongue and bottom lip though. It makes talking difficult, as it seems to get in the way when I try to say things like "visitors" and makes eating tricky too. I had Ready Brek for Breakfast - which was easy. Then Laura made me banana pancakes for lunch, which being fairly soft took longer to chew - but were delicious. For dinner tonight Nathan made his legendary chicken, bacon, mushroom and leek pie, which I love. I tried a small piece with some mashed potato - and got through most of it. So as you can see - I'm not exactly starving! It just takes a while to eat - and I'm exhausted by the end of it.
Hmm - I think it's time for a lie-down now. Or maybe a game of online poker ;-) xx

Friday, 3 February 2012


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I dozed on and off until 5.30pm - my neck felt a little achey but I was quite comfortable. I was then taken to Ward 107 where I had my blood pressure, temperature and heart rate taken and written in my red folder They put the remote pain control in my hand and left me to float around the room. :-)

Pretty soon it was visiting time and when Nathan and Laura came in I said "Look I can move my arm!" I had discovered that I could quite easily move my right arm above my head and wave it around. I was very happy about that. I did it quite a lot - just to make sure. I guessed that Mr Hughes had managed to save my muscle and leave it intact. Actually he came to see me while N and L were there. He said that it had gone well, he'd found "a lot of lumps" right round to the base of my skull, but he was confident that he'd got it all. He said they'd decide about the radiotherapy in a couple of weeks. It might not be necessary.

I can't remember too much about that evening but a kind nurse found me a chocolate custard pot out of the fridge and it tasted like the most delicious thing I'd ever eaten. It was smooth and cool and slipped down a treat. I can feel my tongue but it doesn't work like it used to. I can't make it go into the right side of my mouth so eating is going to be a little tricky. I'm sure it will improve though. I can eat custard already - so it can only get better :-)

I didn't use the morphine so they took it off the next day. They also took off the fluids drip although I was still attached to the catheter and the drain coming out of my shoulder. This is a surprsingly wide tube going into a bottle which I have to keep by me all the time. I did manage to sit in my chair for most of the day - though hadn't walked about much yet. I had various liquid food including more custrard, yoghurts and lots of tea. I am feeling better all the time and the pain is just like a bit of toothache, earache and neckache topped off by a headache.Paracetemol is keeping that at bay though so I'm quite happy. I haven't been allowed to the bathroom yet though, had a bedbath this morning - so I haven't seen my scars and swelling yet. The nurses say it is all good when they inspect it every few hours.

Nathan has lent me his Kindle so I have lots to read, I manage to send a few texts too - although there isn't much signal now that I'm in a different ward in the basement. Had a couple of naps to pass the time.

Today I got mobile again! They took out the catheter at 5.30am - which is when mornings start in hospital!  The drain bottle fits in my dressing gown pocket so I can just go off for a walk whenever I want to. I put on my slippers and went down the corridors to the main door, It was lovely to have some cool fresh air.

They give me three large cardboard bedpans - it seems have have to produce three good-sized samples before they are convinced my waterworks haven't been damaged by the catheter. They've even marked them Berni 1, Berni 2 and Berni 3. I very proudly present them with one each time I manage to fill it.;-)

I have also noticed that I don't have a dry mouth at all. So maybe the salivary glands were saved too? I must remember to ask Mr Hughes when I see him next time.

I have lots of visitors today. My mum and dad come in the afternoon, as well as Nathan and Laura and then Janet popped in for a while too. Then in the evening I see brother Dominic and Sharon and Nathan comes too. He's been amazing organsing everything and letting people know what's going on and how I'm doing.He deserves a medal! It was lovely to get all the news and gossip (not to mention the cards and flowers - thanks everyone!). I told them the the head guy from ENT had been to see me that morning and said that if I can produce less than 30mls in my drain tomorrow then they'll take it out and I may be able to go home. They do check this bottle very carefully. They put a bit of tape on it each day to show how much has come out each day/night. It's like marking your port bottle when you suspect the servants are stealing it - only in reverse.

I don't sleep much in hospital - there is always something going on all through the night. There's one lady who wants the loo all night and a new arrival with a very swollen face. I'm guessing maybe impacted wisdom teeth? But I'm not sure. She says she feels sick, then asks for some food. I don't think she is long out of theatre. They only have soup at that time of night, so she goes for the vegetable. Hmm I'm sure you can see where this is going. It didn't end well...

Don't worry - she was fine the next day.

The early morning nurse measures my drain, declares that it IS 30mls and gives me the thumbs-up sign. I try not to look smug.

Anyway this time when the head guy comes round he says opens my file, squints at the figures and says "Is that 180mls?" I declare that it actually says 30mls.Then he laughs and says the drain can come out and I can go home! Yay!!I ask him about the stitches coming out and he says they are all internal and will dissolve. By now I have had time to look at myself in the mirror and can see bruises and a lot of swelling and another line where the first one was - but longer and this time taking a detour down to my collarbone. If I'm feeling brave tomorrow I'll take a photo and put it on here  for comparison, Maybe...

A nurse later comes to my bed with a tray full of instruments and dressings, pulls the curtains around and says "Have you ever had a drain taken out before?" I gulp and say No. it seems the only stitches that DO need taking out are the ones that are holding this fat tube in place. She tells me it is best if she counts to three, then I hold my breath and then she'll do it. She counts, I hold and she pulls for what seems like ages as the tube comes out. Luckily the shoulder is completely numb so I don't actually feel any pain. but it was a very strange sensastion. She looked concerned and asked me if I was okay - but I was fine .

After that it was just a matter of getting washed and dressed in real clothes - and shoes! Then I walked down to the door where Nathan was waiting to take me home. Bliss :-)

My should is hurting a bit now - though I'm sure typing is good exercise for it. I'll write more soon. xx

Operation Neck Dissection

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Hello again! Sorry I have updated for a while. I had a great weekend in snowy Lancashire - the land of my birth -then in no time it was Operation Neck Dissection! I like that - it rhymes :-)

Yes on Tuesday 31st January 2012 I was dropped off outside UHNS at 7.30am with my little bag and a little trepidation. I knew my way to the Ward 105 as I've been there a couple of times already. Although I'd forgotten my admission letter they knew me and took me straight to my bed. They weren't sure of the order of play so I sat in my chair and watched a bit of breakfast news while others arrived for operations too.

Pretty soon Julian (he of the awesome hat, the time before last) came in and had a chat. They always ask if you know what you are in for. I'm not sure if that is to make sure they have the right patient or if they think you might have actually forgotten?? Maybe next time I should say "I'm here for a boob job" Might get away with it ;-)
Having established that we both knew why we were there he then got out his permanent marker and drew an arrow on my neck - to make sure they did the right side. My friend Tracy said later "Even Mr Magoo couldn't miss that!" Made me laugh. You can see the scar from the last biopsy in this photo.
A few minutes later the anaesthetist and her crew came by for a chat too. She was wonderful Explained what would happen, asked me if I'd had any adverse reactions to general anaesthetics previously (I hadn't ) and told me they'd give me a morphine drip afterwards so that I could control my own pain. Sounded like they'd thought of everything! I had every confidence in them. UHNS is a teaching hosptial now and there are students everywhere learning all the time. I like it.

The next entourage to visit was by far the biggest. It was Mr Hughes the consultant and his surgeons. He again asked if I knew  what was happening. He went into a bit more detail, saying that he would be severing a lot of nerves as he "filleted" my neck. This would affect my ear and maybe my tongue as well as parts of my skin. I wouldn't be able to feel anything in these areas - some would come back but others may be permanent. It would be at least a year before it got better and I would know how I was going to be.

The things I was most worried about were:

1) Not being able to move my right arm above my shoulder (I'm a librarian - how would I shelve books?) and
2) Losing salivary glands and having a dry mouth - I can't think of anything worse :-(

Still - this is a life-saving operation so there's not a lot I can do about it now.

They all wentt off to get ready for their first operation and the nurse came in to tell me that I was second on the list. The lady going in before me would be a long operation though, as she had cancer in her nose and was having it removed. I didn't feel so sorry for myself after seeing her.

I had promised Nathan that I would text him before I went off to theatre - as they give you a pre-med an hour before so I thought I'd get time. However this time a porter came in and said "I've come for you!" and I had to get changed into my gown and into my bed in about two minutes! There was no time for the pre-op painkillers. "They'll just put them in your line." the nurse said as she delivered me to Operating Theatre 1. I glanced at the clock and it was 11.30am. There was a bit of shuffling me up the bed and an injection and then next time I opened my eyes a clock said it 4pm.