Recent diagnosis

LindsayB22LindsayB22 Posts: 18
edited January 1 in Diagnosis
Hi I was recently diagnosed on 19th December 2018 with Follicular Lymphoma at grade 1-2 and while I was told by my wonderful consultant at Freeman Hospital that this wasn't aggressive, I am still scared for the future, although trying to remain positive for my 2 daughters and grandson. I did contact Macmillan by phone, who proved to be so friendly, professional and supportive. I have an appointment with a Haematologist at Durham Hospital next week to discuss a treatment plan, but am so frightened of the after effects of treatment as well as my work schedule. 

Comments

  • RobertARobertA Posts: 392 ✭✭✭
    @LindsayB22  
    Hi Lindsay

    Sorry to hear about your diagnosis. 
    It is always scary to be told you have cancer and I am so pleased you contacted Macmillans. They are a wonderful organization who supported me through my diagnosis two years ago and are still doing so. 
    Once you know what the treatment plan is I am sure your work place will be supportive and understanding. 
    The worst part is the unknown. It sounds as if you are in good hands and once you know all about your treatments and any side effects you may have, it will get easier, 

    I come from Hartlepool and love Durham. I also support Durham cricket and stay in the Lambton Worm in Chester le Street when they are playing at home. 

    Good luck and keep in touch. This is a friendly and very supportive group. 

    Rob x

  • LindsayB22LindsayB22 Posts: 18
    Hi Rob,

    Thankyou for your message. It's good for me to have support, not only from the professionals, but from friends and families as well. My two daughters and some very close friends, including those at work have been amazing. My manager is very supportive, but it's me that's worried about how the after effects of treatment will stop me from doing some shifts. 

    I live near Chester le Street in a quiet little village.

    My Dad was a massive cricket fan and watched it whenever it was televised, but never went to any games.

    I hope you continue to recover Rob. I have had a good Christmas despite the diagnosis.

    Take care,

    Lindsay x
  • SunshinedaffSunshinedaff Posts: 610 ✭✭✭✭
     @LindsayB22
    Hi Lindsay,

    Just wanted to say hi, glad you found this group. I am sorry about your diagnosis, but am so glad you have got some great support from family, friends and Macmillan. 
    I can only echo what Rob says,(@RobertA ). Once you have seen the oncologist you will have a clearer idea of how things will progress with regard to treatment and what to expect. It is very scary to be told you have cancer, your mind probably won't catch up with it all for a long time. It's a whirlwind in the beginning. The good thing is it has been found and can be treated which is really positive. 
    I hope your appointment goes ok, if you can, take someone with you, it helps to have another pair of ears as well as the emotional support.
    Welcome to the group, feel free to come and chat anytime.

    Lou x
  • LindsayB22LindsayB22 Posts: 18
    Hello Sunshinedaff,  Thankyou for your response in terms of my fears. I am taking both my daughters with me when I see the Haematologist on 8th. After a cruel comment about me apparently attention seeking, I've been a bit reluctant to say too much about how I feel, but if I don't tell someone or get support, I'll crack up. Thankyou for your kind words. having support means so much to me. I think the biggest thing that scares me is that I have a little grandson (22 months) and although I'm determined to fight this, I worry I won't see him grow up.
  • gloden02gloden02 Posts: 50 ✭✭
    Hi Lindsay. It is the most scary time but as said before it’s the unknown. Your mind goes into overdrive. Once you see your oncologist and a treatment plan is in place you will feel more positive. I have T cell NHL,a rare one they say. I’ve had radiotheropy and Chemo which finished in Aug. Like you I have grandchildren and three baby grandsons born last year and so much want some more years seeing them grow up. Wishing you all the best for your appointment. Let us know about it. Keep in touch on here. Really helps . Lots hugs xx
  • SunshinedaffSunshinedaff Posts: 610 ✭✭✭✭
    Hi Lindsay,

    Bless you, those sorts of comments are so hurtful and unnecessary. I feel angry on your behalf. Put that right out of your mind, and absolutely you do need to talk about how you feel, it will help you to get through this. I would think carefully about who you want surrounding you in this. It sounds like you do already have some lovely people supporting you. You don't need to hear horrid comments like that or even stories about 'great aunt Betty who had the same and oh how terrible it all was' if you know what I mean! 
    We are here for you too, it is good you are determined, it will make a difference. Take it one day at a time ok, it is still very early days for you. Your Dr sounded positive, go with that, tell those other thoughts to get lost, they don't belong with you. 

    Sending a hug

    Lou x
  • LindsayB22LindsayB22 Posts: 18
    Thankyou golden02 and Sunshinedaff.(Lou) I really appreciate kind comments like this. Yes I have got some positive minded people encouraging me and keeping my spirits up. The day after my diagnosis, I went to a pub quiz with my daughter and had a good laugh, which surprised me. It's when I'm on my own that's the worst. The negative vibes come from another family member, but I'm trying to sort this out with professional help. As my Mam once said "don't let the minority spoil the majority and as there are only a few negatives, the positives are what I'm going with. Thankyou so much xx
  • RobertARobertA Posts: 392 ✭✭✭
    @LindsayB22
    Hi Lindsay
    Why oh why do people who have no concept of what you are going through say these things?
    I like that you had a good laugh with your daughter the day after your diagnosis.
    When The urologist told me I had cancer, I was not surprised as I had been through all the blood tests, CT scans, MRI scans and biopsies. I was though shocked at the extent of the cancer and its aggressive nature. When I asked if they could get rid of it he said ‘no’.
    Wishing to be manly and cool, I said ‘Well, I’ve had a good innings to which my wife replied ‘ I can’t believe you are still talking about cricket at a time like this’. We actually laughed at that. 
    Keep in touch
    Rob x 
  • LouiseJLouiseJ Posts: 218 mod
    @RobertA

    Morning Rob

    It's funny the things we realise we have said at the time of diagnosis.
    I remember looking at the Dr, saying, 'You must have made a mistake...you are looking at my notes and not someone elses?' . I made him check. Then when they had told me of all the plans, already laid out, I just looked at my husband then at Dr and nurse, and said 'Ok, well as long as its done by July 23, lets do it. But has to be done by then because on that morning I am driving to France'. Hahaha. The nurse said to me, 'That's good to have something to aim for', my reply to that was ' We're going, no question, it's booked and paid for!' And so it began...
    Humour in the face of adversity and major trials and challenges, helps immensely. 

    Have a great day

    Lou x
  • LindsayB22LindsayB22 Posts: 18
    Hi Rob,  You see it's little jokes like the 'innings' you mentioned to the doctor that keep my spirits up, so thankyou for that. It's the person who I'm married to that makes the cruel remarks, but I try to rise above it. Going shopping now, so have a great day and my best wishes to your wife as well xx
  • RobertARobertA Posts: 392 ✭✭✭
    @LindsayB22 ;

    Good morning Lindsay
    i recall that you had a meeting with your haematologist yesterday.  
    Hope it went well, that your treatment plan is in place and that you are feeling a bit more positive now. 

    Rob X 
  • LindsayB22LindsayB22 Posts: 18
    Hi Rob, That was so kind of you to remember my appointment for yesterday. It went well They're just putting me on active monitoring for now as what symptoms I have aren't bothering me, so until I need the treatment, they're just going to do bloods and consultations 

    Lynn x
  • RobertARobertA Posts: 392 ✭✭✭
    Hi Lynn

    That is great news to start the New Year with.  You will be looking forward to spending quality time with your daughters and grandson. 
    I am so pleased for you. 😀
    Rob x 
  • SunshinedaffSunshinedaff Posts: 610 ✭✭✭✭
    @LindsayB22 ;

    Hi Lynn, 

    That is good news to hear things seem to be under control, concentrate on the good things going on in your life, looking forwards continuing to be positive. Enjoy being with your family, being around children does help to keep us young! Happy New Year to you. We are all here for you whenever you need.

    Best wishes

    Lou x
  • LindsayB22LindsayB22 Posts: 18
    Thankyou Sunshinedaff and Rob. I'm usually a strong willed person and with the good support network around me, I'll be fine. I'm continuing my work in a play area as long as I can and my Manager is fine with that. Happy days but can't pretend I'm not scared for the future.

    Lindsay xx
  • RobertARobertA Posts: 392 ✭✭✭
    Well, you know where we are if you want to chat or need any support.

    Rob X 
  • LindsayB22LindsayB22 Posts: 18
    Hi Rob,  Yes, I certainly do, thankyou. Hope you've had a good day. I had to phone the AA this morning, as my fob for the car failed to activate so I couldn't get in. The AA only took half an hour to get to me and 10 minutes to do the job, so that wasn't too bad.

    Lynn x
  • RobertARobertA Posts: 392 ✭✭✭
    edited February 1
    @LindsayB22

    Hi Lynn
    I was watching 'Vera' on TV the other day. As you probably know, it is set in the North East and watching it reminded me of you.   It would be good to know that you are well and feeling a bit more comfortable about your future with the support of your daughters and work manager. 
    I hope your play area is indoors. It must be a bit chilly in Durham right now. ☃ 

    I thought I might mention that there is a great link in 'What's on your Mind Today'.  It is 'Us as People Not the Disease' started by @lesley. We talk about ourselves and post photos of our animals etc. It is fun and a good place to relax and smile.

    Rob X 
  • LindsayB22LindsayB22 Posts: 18
    Hi Rob, Yes the play area I work in, is indoors, although it's in Barnard Castle, near to where we used to live. I don't watch Vera, but I understand that the location would bring me to mind. Thankyou for telling me about What's on your mind today. I'll take a look. I just got home from shopping before the snow came down again.
    Take care,
    Lynn
  • PearlonePearlone Posts: 3
    Hi LindsayB22
    I've got NHL too. Many, many are diagnosed at stage 3/4 as it's difficult to diagnose till obvious symptoms and docs often don't take it seriously. It's still very treatable at those stages, many Blood cancers are.
    Well done all round, for you and the docs. 
    I'm also on a FB page for NHL in UK you might be interested in. Lots of experience and it's specific to UK NHS.
    There's a social page too. 
  • LindsayB22LindsayB22 Posts: 18
    Hi Pearlone, 
    Thankyou for your message. I actually feel ok, apart from a little fatigue and constant night time sweats. I was lucky in that my GP sent me for a CT scan the same day I had an appointment with her and it started from then. I know of lots of patients who have been sent away from their GP's with a packet of tablets for something unrelated but as you say, blood cancers are different from the sold ones, so I know it's treatable. I've not seen a FB page for NHL but I'll look for it. 
    Lindsay x
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