Weekly roundup

I finally received a letter on Thursday saying my scan is booked for tomorrow (Monday).  They legally have 14 days from referral to see suspected cancer patients and it’s exactly 14 days!  I did try to ring my GP to let her know about the new elbow lump I found, but after 4 attempts (three times being put on hold forever and the fourth being hung up on when I finally did get through) I gave up and dropped a written note in to her instead!  I’ll definitely mention the lump to the scanning person though.

I think my Mum is freaking out a bit about the situation.  When I told her about the second lump her first words were “if anything happens to you you’ll have to tell us what you want done with the dog!”  Er, thanks ma – I’m not dead yet y’know!

I tried Googling mast cell activation disorder and swollen lymph nodes and came up with nothing.  However, it is found in systemic mastocytosis so hopefully the swellings will turn out to be benign and if that’s the case I’m asking to see a consultant who knows about mast cell diseases.  I haven’t seen anyone since my diagnosis 5 years ago and just because a disease is rare doesn’t mean you should receive no medical care whatsoever.

On Tuesday I, yet again, chased up my Dad’s CT scan results only to be told, yet again, they’re not back yet – it will be 6 weeks on Tuesday.  My family are all totally pissed off with the situation now, so decided to pay to see a neurologist privately.  I chose one who also works for the NHS at the RVI so that he would have access to my Dad’s NHS notes and test results, and rang up for an appointment.  The Nuffield website says that if you self pay you get to see a Consultant within 24 hours.  Lying little fuckers.  The first appontment we could get is on 9th April!!  So I’ve booked it, but we might have heard back from the RVI by then.  I was so angry that I put in a complaint to the Advertising Standards Authority about the misleading nature of the Nuffield website.

The Gods took pity on me for once, and to counteract all the doom and gloom I found out at the start of the week that my image of a Child Bride had won a gold medal in an international salon in Belgium.  Not only that but it was also awarded a medal for best colour print of the entire exhibition and was placed on the cover of the catalogue 🙂  In the same Salon, my Evacuee photo was also highly commended and received a Photographic Society of America ribbon.  I’m chuffed to little meatballs 🙂

I didn’t do much for most of the rest of the week because up until Thursday I was poleaxed by exhaustion.  It’s just ‘normal’ exhaustion, as opposed to the fluey, weak, poisoned exhausted I get from a bad ME patch, so I suspect it’s just hormone/menopause related as it comes and goes and by the weekend I felt OK(ish) again.

To take my mind off everything I attempted another photo I’ve had in my mind for a while.  It’s called ‘On The Shelf’ 😀

I had a nice day on Saturday.  My neighbour turned 80 and her son had arranged an afternoon tea party at a lovely hotel up the lakes for her friends and family.  My parents, and Bertie (who my neighbours ruin), were also invited and it was a nice opportunity for all of us to get out of the house and do something different.

This morning a friend has invited me for breakfast at a nearby cafe, so I’m going to take Bertie out for his morning constitutional then meet him for tea n toast.  My friends have been really supportive since I found my lumps a fortnight ago, as have several of you my lovely readers, and I am grateful for all your messages and good wishes 🙂  I won’t find anything out tomorrow – it’s not like the scanner operator will tell me whether or not I have cancer – but as soon as my GP rings me with the results I’ll let you all know.

 

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15 thoughts on “Weekly roundup

  1. Elaine Stammers

    Thinking of you for tomorrow Jak, and hoping that the appointment goes as smoothly as possible. Also huge congratulations for those photography medals and the Highly Commended award – what a boost after some bad times recently and good to have international recognition for your brilliant photography.

    I did some googling myself re MCAD and swollen lymph nodes and seemed to come up with a few entries (I hasten to say that I am not at all an expert on MCAD but looked into whether I might have it a year or two back which is how I stumbled on your site as I have an ME/CFS diagnosis and have hypermobility too but not EDS). Anyway I found swollen lymph nodes mentioned in a number of places linked with MCAD e.g. on this site it’s on the long list of symptoms – http://ohtwist.com/what-is-mcad/when-to-suspect-mcad ;Swollen lymph nodes of unknown origin, not true lymphomas’ it says…..

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  2. Sarah

    I’ll be thinking of you tomorrow. With my tests they told me I had to wait 3 weeks for the because I hadn’t gone through the menopause, they didn’t suspect cancer. Instead, I got a phone call after a few days asking if I could go up that afternoon. I pretty much new that wasn’t a good sign.
    What I’m trying to say is if there is anything sinister they will get you back in pretty quickly with the results. They also give you a specialised cancer nurse who goes through things with you, a timeline for treatment, the options and a phone number to call them if you need to ask more questions. I was also given a booklet with the information in as your mind does go blank.
    I don’t know whether this will help or not, (I like a heads up), but having has a breast scan, the lumps I found were cysts and showed up on the screen as black round objects which I could see at the time of the scan. They told me there and then they were cysts
    Take care x
    Sarah

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  3. Sue

    Child bride – what a superb image, extraordinarily evocative, congratulations.
    Just thought about your fathers treatment, is it worth involving PALS?
    Wishing you well.

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    1. Jak Post author

      Thanks Sue. I’ve asked my Dad what he wants me to do next and he says he just wants to wait for his next appt, whenever that may be x

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  4. Crew Dog

    Wishing you all the best for your appointment tomorrow. It’s also a big day for me, as I am trialling a new medication. Hope it goes well for both of us.

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  5. Moises

    Hi Jak,
    forgive me for not replying to your posts more often, but please know that I do read them all and your are in my thoughts as we are all waiting for your results.
    Cheers cheers

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  6. melody

    I didn’t get a chance to comment earlier–and already heard your great negative news, but want to say I think your Off The Shelf photograph is really powerful and I like it very much. And congratulations on your other awards.
    I hope your father can get his other medical appointment in sooner than April 9th, too, for a clean sweep of recent events!

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  7. Karen, The Walking Allergy

    Hi Jak, I’m glad to hear you have your scan relatively quickly. Fingers crossed itis something benign or simple. I do tease sometimes that if I had cancer, my life would be so much easier- Imdenied so many services because I have the wrong illness. But I desperately hope that you don’t!
    Congrats on the photo- it’s both captivatingly beautiful and thought provoking. Well done!
    Karen

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