SIX MONTH CHECK!

  • 23 replies
  • 46 subscribers
  • 10354 views

Hi Folks, Well I've just had my six month checkup at oncology and my oncologist was very pleased but also very apologetic! She was apologising for all the side effects I am living with even although the cancer seems to be under control! I told her the main word there was "living" and without the drug, I wouldn't be!

It is three years now since I stopped the Target Therapy and because of the severe side effects, my oncologist, my husband and I discussed not going straight onto Immunotherapy but waiting until things settled a bit. No one realised I could be off treatment this long without the Malignant Melanoma (stage4) raising its ugly head again but that's exactly what has happened! It's not been plain sailing what with the drug accelerating my osteoarthritis so much, I needed spinal surgery in March. I have an appointment with the Spinal Surgeon next Wednesday. I still have pain issues, especially when trying to sleep. Although I visit oncology every 6 months, I now also visit Opthalmology, Dermatology and the Liver Clinic every 6 months also. Up until now, I've had six monthly scans since I stopped the drug in Sept 16. Before that Everything was 3 monthly, except oncology which was monthly, so as you can imagine the number of appointments have decreased which is wonderful! I didn't get scans this time because the blood results for kidney function weren't very good, so she doesn't want to use the contrast fluid. They will be done in Mar 20!

In a way, it's a weird position to be in "living with incurable cancer" because this is not the life I was expecting to live. I'm not very mobile, which is the worst thing (apart from the pain) and still get tired easily BUT I've just seen our second grandchild start school and our youngest starts next year, so that will be all three at school! When I was diagnosed in May13 and given 5-7 months to live, we had 1 granddaughter and never in my wildest dreams, did I expect to see her with a school uniform on, let alone see another 2 grandchildren come into the world. Yes, I still have some very bad days and but as soon as one of the children say "Hi Gran" with a lovely smile, all the bad days are forgotten!

For those who have just been diagnosed, remember no one knows what the future holds. Miracles do happen. New drugs are being developed all the time. Terminal is now an old fashioned word. Instead think of incurable which can be treatable and there are lots of others here passed their "sell by date" so never give up hope!

My husband and I are off to Salou in Spain next Fri (27th) for two weeks to celebrate our 48th Wedding Anniversary, then in December we go to the Christmas Markets in Manchester and in February we go to Benidorm for Three weeks to get away from the bad weather.  So life goes on!! Good luck to everyone having treatment, hang on in there!

  • FormerMember
    FormerMember in reply to KTatHome

    I understand completely about just getting the tap done, I've been in the same position, wondering if its worth going for a complete new Kitchen or just getting the leaking tap  fixed, as I am on a water meter,lol .

    well, you can't take it with you so I opted for a new kitchen, which I am very pleased with, rather than looking at a 30 yr old Kitchen.lol

    Best be happy with the time we have.

    hope everything goes well for you!!!

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Annette 

    first of all, hurray for the cancer stability! What great news. And well done on cutting down those hospital visits. But boo to the pain and mobility issues. I find you such an inspiration in the way you focus on living your best life despite the problems. I’ve learned a lot from you about how to do this myself. 

    There are so many things in this thread that resonate for me. Never mind kitchens, I remember wondering whether it was really worth buying a new pair of walking boots a few years back. I got them anyway and they’ve had plenty of service. I had the bathroom redone as a necessity, replacing the bath with a walk-in shower for such time as I could no longer step over the bath to shower. I’m so glad I did as it’s been lovely having a posh bathroom although the scenario I envisaged has yet to materialise. 

    And yesterday I dropped my big girl at university. There was a time that seemed an impossibly distant event. An emotional day. I am so proud she’s got not just the grades but also the confidence to go, especially after everything life has thrown at her in the last couple of years. 

    Thanks all for a great chat 

    xxx

  • Hi Daloni, Thanks for your reply and the nice things you said! Isn't it amazing the different things that go through people's mind after the bombshell of a stage 4 incurable diagnosis! I've never heard of people wanting to go to far away places like a desert island etc but what I've heard often is people wanting to decorate, buy new kitchens, suites etc. What I did the day after my diagnosis was phone to get a quote to get our suite covered because I hated the pattern ( why we bought it? It's a long story so I won't go into it!) and within two months, it was all done. I thought if I only had 5-7 months to live, I wasn't going to live it with that suite! I also remember going into clothes shops etc and wouldn't buy anything because at the back of my mind was, it would just be something else for my husband to clear out and give to the charity shop! The first thing on my "to do list" was to teach my husband how to work the cooker, washer/dryer, microwave, how to program the TV etc because I wanted him to be able to look after himself when I was gone! I'm sure a lot of modern wives won't understand this as men today, lend a hand but that was just the way it was then. He worked 11 hour shifts 5 or six days a week, so on his days off we just did family things!

    Oh by the way, he's still learning and was doing well enough until the microwave broke down and the new one we bought was a different wattage! The Smart TV, I doubt he'll ever master and we laugh about it all the time!  I just wonder if anyone out there DID anything unusual after diagnosis!

    The mind works in funny ways......

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Lass, Well I found the pictures, it was a while ago so I'd forgotten about them. No wonder they are special to you, they are gorgeous children and so cute!

    I'm sorry but Oct is a busy month for me. We won't be home until 11th and the week after that is the school holiday up here so have arranged to do things with our grandchildren. Then the week beginning Monday 22nd, my daughter and I are going to see Will Young in concert in Glasgow! She bought the tickets months ago and gave me them for my birthday in August. I honestly think I'll be due for a rest after that but if you do manage to arrange anything, in Edinburgh or Glasgow (or anywhere in between) let me know and I will do my best to be there!

    Enjoy the hen night and all the Wedding things coming up!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    Hi Annette 

    yes I remember thinking “I must teach my husband x, y and z housework tasks” although as things turned out I never got round to it. His comment after he left and had to run his own domestic life was “there is such a lot to do”. Well, yes. There is. 

    I didn’t do anything unusual after I was told I was incurable. Immediately after diagnosis and for quite a while my life cane to a sort of standstill. I was very afraid, very angry and very sad. I had to learn how to live again. So I think that was the most valuable thing I did. 

    I wonder if the desire to decorate is all part of the business of putting your life in order? Thinking about your suite, surely it’s time for new covers now? 

    Xx

  • Hi Daloni, Immediately after diagnosis, all I kept thinking about was funerals! Oh I did get new covers for my suite and have had other new ones since then!!! I don't let the grass grow under my feet now, if I want something,mI get it! Life's too short!! Eh

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • FormerMember
    FormerMember in reply to anndanv

    I am with you 100% Annette. 

    Xxx

  • Hi Annette

    100% agree with that one, Annette. Hope you enjoy your holiday, starts tomorrow, 27th. I remember that because it's my 40th Wedding Anniversary. TBH, I didn't think I was going to see it after diagnosis, March 2015. After tomorrow, I'll start looking forward to our 50th Slight smile

    Take care and have a great time.

    Tvman xx

    Love life and family.
  • FormerMember
    FormerMember in reply to tvman

    Have a wonderful holiday . I can’t wait to hear all about it 

    xxx

  • Hi Tvman, Well many congratulations to you both! Yes I know exactly what you mean! Our 48th Wedding Anniversary is on the 2nd October! We've been going away every year at this time for a very long time now and one of the few we have missed was in 2013 when I was diagnosed and we thought we wouldn't be able to go on holiday over our anniversary again....yet here we are! Miracles do happen! We will reach our 50th ahead of you but isn't it great being able to look forward with positivity! Onward  and upward my friend! Have a terrific day!  Take Care 

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!