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trying not to freak out

At the beginning of the year I was diagnosed with a cyst in my jaw and have been waiting for surgery since. Just over 2 weeks ago a lesion began to grow on the outside of my jaw overlying the cyst. After a couple of calls to the GP to try to get to see one, I was phoned by a nurse and for the umpteenth time I had to try to explain what was happening. I don't have a mobile phone and at the time our internet was useless( dropping off over 50 times a day) so I couldn't send her a photo, she said she would see me. Apparently our GP's will not see patients so the nurse it was. She took one look at the thing and said it looks like skin cancer and is referring me to the surgeon. I think she thought I should have gone to pieces as she dragged her chair close to mine and said "So how are you feeling?". I thought for a moment and then said " Oh hunky dory thanks it is just another thing to deal with isn't it " lease remember social distancing!

I am most worried as our GP's seem to have gone AWOL or MIA they may speak to a patient on a phone but try to see one and you have had it. I am feeling pretty rubbish as my crohns is getting me up at 3 am most days and I spend the next couple of hours running to the toilet, then my joints are swollen and painful and now this. I had to go back to the surgery today so a different nurse could take bloods and some photos of the "thing" and now I wait to hear from the surgeon. I just hope it is a quick excision and that is the end of it as I would not feel safe if I was to have any ongoing treatment and have to rely on my GP for any medical support.

Comments

  • Oh my goodness,you've a lot to cope with at the moment, and yes made even more so because of the Covid situation and trying to get medical help. Stay strong,it sounds as though you are,though the stress won't be helping your joints/Crohns. Hope you get an appointment with the surgeon soon,surely it will be fast tracked 🤞
  • LilymaryLilymary Posts: 266 ✭✭✭

    Hi Stellabean, I’m so sorry to hear about your diagnosis on top of everything else. As Kazandnoo says, it may have triggered an inflammatory response in the rest of your conditions.

    I’m sorry you haven’t been able to see your GP. Covid or no, that doesn’t seem right to me for such a serious condition.

    Please do get in touch with some of the cancer support charities, such as MacMillan or Cancercare. They may be able to step in to help you through this difficult time. You don’t have to do this alone, even with all that’s going on with the NHS etc.

    And while it may seem a low priority in the scheme of things, and while not underestimating what you are going through and belittling the barrage of emotion you’re probably facing, when it feels right try to find some way of properly relaxing, such as meditation, mindfulness, gentle exercise, warm baths and scented oils, hug a tree, hug a cat, ring a helpline and download how you feel, whatever works for you. It will help you manage your arthritis and crohns, and the more you can keep these under control the better you’ll be able to cope with what you're having to deal with right now.

    sending a hug xx

  • EllenEllen Posts: 185 mod

    Good Morning @stellabean

    I am very sorry to hear your worrying news.

    I very much hope you get to see someone for a proper diagnosis with extreme urgency. If they suspect cancer they should have referred you under the two week rule.

    Sending you gentle hugs on behalf of the Moderating Team.

    Ellen.

  • Thank you so much KazandNoo and Lilymary I will I can't understand why they have to make everything so difficult, I do pilates already and hug my cat (well he hugs me mostly) and each day I give my 30 horse a specially good hug when he takes his meds and eats his breakfast ( you do have to feed him by hand but I find this strangely relaxing.) It is being fast tracked it just depends if he sends me on to dermatology or deals with it himself. I'll let you know what happens. My husband is so supportive but I don't always want to worry him and try to shrug off most things only letting go if I am very bad. I know it's not a good way to be but I have always had to hide any "weakness" since childhood and it is a habit I can't break now at 61yrs.

  • frogmortonfrogmorton Posts: 25,234 ✭✭✭

    Hi @stellabean

    Gosh what a shocking appointment with the nurse! I sincerely hope she is wrong, but whatever is wrong it needs sorting out ASAP!

    Sending you some love and strength from me and remember so called 'weaknesses' do not need to be hidden in here. It's a safe place.

    ((()))

    Love

    Toni xxx
  • Mike1Mike1 Posts: 616 ✭✭✭

    I hope that it is not as bad as you have been told, I have been told twice by GPs that I have cancer right out of the blue, on both occasions they got it wrong and on one occasion the Consultant that I was referred to lodged a complaint about the GP. Fingers crossed it works out OK.

  • Thanks Frogmorton, ellen and mike I should get an appointment in 2 weeks. I have had skin cancer before but that was very slow developing this is so quick and it seems to be adhered to my jaw. I have to admit to telling the nurse I wasn't happy with the trouble I had encountered trying to get to see a GP and funnily when I rang today to get my daughter an appointment( a phone one) I had no bother she is going to speak to her preferred GP tomorrow. Unlike last week when I was told by receptionist I wasn't bad enough to warrant a GP call but they are very keen to tell us the receptionists are specially trained!!!.

    My husband has an appointment for his yearly review next week and they rang today to say they expected him to give them his height, weight and blood pressure so they can enter it into his notes, I thought that was their job.We have spent half the day trying to think how we can do that there is no local weigh bridge, I am not tall enough to measure him if he stands up and not allowed to use steps and we couldn't think how to do his blood pressure any ideas?

  • At my local GP surgery all the receptionists are lovely,bar one and I can feel myself getting agitated if she answers the phone as she is so condescending and awkward. 😬
    On a different note, I bought a blood pressure monitor online recently it's very good and was only about £25. Not sure if I'm allowed to name the brand or well known website I got it from on the forum?
  • LilymaryLilymary Posts: 266 ✭✭✭

    I think I got my blood pressure thingy from that very well known high street pharmacy that might easily be mistaken for a shoe shop 😉

  • Well I phoned the surgery to find out what was happening to be told the consultant has been on holiday last week and they would chase up my appointment...……… still nothing their 2 weeks are up on Friday. I AM TRYING TO BE PATIENT BUT FAILING.

  • LilymaryLilymary Posts: 266 ✭✭✭

    I know it’s hard but the NHS are still trying to get back on their feet. But some gentle nudging won’t do any harm, just to keep your name on their radar.

  • frogmortonfrogmorton Posts: 25,234 ✭✭✭

    Still waiting @stellabean ?

    As Lilymary says gentle nudging....

    Love

    Toni xxx
  • I phoned the surgery again yesterday late afternoon but the referral unit had gone home. While I was feeding the horses this morning someone from the surgery phoned and was quiet snotty to my daughter "we are chasing up the appointment and she needn't ring back" was the message. I spent the morning taking my frustration out on weeds on my allotment. After lunch there was a call form the consultants secretary I have an appointment on Monday apparently he is still off and I will not even see him on Monday. But I hope I get somewhere as this thing on my jaw is growing at a noticeable rate.

  • LilymaryLilymary Posts: 266 ✭✭✭

    Yaay! It's a start... well done.

  • Oh, good luck, Stellabean. We are all rooting for you.
  • Mike1Mike1 Posts: 616 ✭✭✭

    Fingers crossed!

  • frogmortonfrogmorton Posts: 25,234 ✭✭✭

    Well done @stellabean

    Your persistence has paid off. I have two friends in my village who have been diagnosed with cancer during this pandemic. To be fair it has been very hard for both getting tests,diagnosis and definitely 'seeing' someone🙄

    How dare that woman be snotty! how would she feel if she was in fear!

    Now it's your turn, but l still have everything crossed that it is something else and will be sorted out for you. Toes and everything crossed🤞

    Will be with you on Monday in my thoughts

    Love

    Toni xxx
  • Thanks frogmorton I,ll let you know how things go.

  • GOOD News well some it is not skin cancer but something to do with the cyst/lesion in my jaw bone. It was surreal being the only person sitting in a clinic there was no one else there at all ,very twilight zone just short of the spooky music. Still took a couple of hours to be seen I wish I had taken my book with me though concentration would have been hard I have been up since 3am with my gut. They are going to dig out the area in the jaw bone and cut out this lump on the outside of the jaw and send them away to the lab the doctors words not mine!. The numb feeling in my mouth is due to this lump and with the nerve pain in my cheek bone will probably not go away and I may also get weakness in the side of my face but the upside I will get rid of the lump. Thanks for the support folks it was the first time I have been a nervous wreck in a waiting room. I have no idea of a date and will have to isolate for 2 weeks before surgery.

  • Mike1Mike1 Posts: 616 ✭✭✭

    Glad that you have dodged the Big C.

  • LilymaryLilymary Posts: 266 ✭✭✭

    That is good news, I've been in one of those waiting rooms, and even with a negative result I was a wreck when I came out. I hope your head has stopped spinning, and that they can get you seen quickly.

  • EllenEllen Posts: 185 mod

    @stellabean

    Very pleased to hear it's not cancer and hope you get sorted out now very soon 🙂

    Best wishes

    Ellen.

  • Thanks Mike1,Lilymary and Ellen I have felt wiped out the last 2 days didn't realise just how badly until I fell asleep weeding the garden this afternoon. I decided the weeds could grow a little longer and came in to sleep in my chair bliss.

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