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Thank you, firstly, for anyone who is looking at this. I am 69 years old and many of you have known me over the last few years on the Lung Cancer group and The Room. I was diagnosed in January 2013 and was fortunate to have an EGFR mutation. Have been on Gefitinib since then and all seemed to be holding it at bay Four months  ago told cancer growing! Took a blood test to see if I was TDM1 positive- that's the usual further mutation, but negative for that! Since that had I/V antibiotics for Klebsiella and Psuedomonas (damn lodgers and not paying rent)! . The story continues as found that cancer was growing "again" and they thought Gefitinib was no longer working- felt infection may have given false reading on PET scan so had another one on Tuesday - plus a brain scan last week cos my leg did a few funny collapslng things recently- I do have a brain by the way- always in doubt. The big problem now seems to be that they don't feel it's possible  to get a new tissue sample to check for other mutations. Have sent oncologist a long e-mail offering my body up to open surgery for a wedge/partial lobectomy and they are having an MDT about me ( and no doubt a hundred or more) to see what can be done. SO I wait with "baited breath" to find my options next Monday.

Meanwhile, This is the human living with it bit!!! Spent 2 hours taking to Macmillan and Cancer Research - Macmillan lady superb - Cancer Research- more like an automated message service - absolutely crap! Desperately looking for ways I can suggest  to oncologist  to get a tissue sample BUT no help there.

TODAY Pissed right off after wasting two hours on phone with no help at all Okay - admit it- poured myself a couple of large vodkas!! I know, I know that is not the answer but it takes the edge off things!

All best intentions of walking my two dachshunds BUT off for a snuggle down in nice clean bed (did at least do that and all the ironing) - I have a boy of nearly 18 - say no more huh??! 

FEELING - very much as if I have hit a brick wall and stressing about appointment on Monday with oncologist, when I have to keep my cool and just stay determined/ focussed etc.

THINK - I have been very lucky so far in the fact that I was given 3-4 months in January 2014 - haven't I done well???!!  

Thank you all for listening/looking - this is my first try at blogging so really don't know the ins and outs- forgive me if I've screwed up!!

Love and Hugs  to you all and all the very best for your particular journey  Diz xxx

Anonymous
  • FormerMember
    FormerMember

    I have just said on the Lung Cancer site that I was off to bed for a lay-down - exhausting these b****y appointments!! BUT here I am again- sorry! Have to say I have had a really shitty month waiting on this appointment today- didn't realise just how much it affects you when you seem to be in that tunnel with no lights coming - not even a train. SO this morning decided to start my steroids again and NOW I'M BUZZING - derrrh sleep - think not! My darling son - 6'32 and 18 stone came with me at "high noon" - bless him - he's always there for me (used to be a little shit but times change so much)!. We got there at 11.40 - early for appt and, firstly, the blood clinic was closed to had to go round to another one in Outpatients - bit like bingo! I got number 44 and they were on 14 when we got there aagh! Thought perhaps I should go round and tell oncology the situation- leaving my son in my place in case there was a rush came on? Then told, Oncologist had to rush off to other hospital to do clinic there, and could I go in NOW. Asked nurse to go round and find my son and let him know. He eventually arrived 10 minutes into chat. Seems they read my e-mail which many of you advised me to send to try and get through to them that I wanted to avoid chemo if I could. In view of the fact the "Boss" specialist said she thought it would kill me off month before last and then recanted grrh! Anyway - some light! Checking initial sample from 2014 for PDL1, also doing another CT Biopsy (you all know how I love them) on a new growth at top of right lung. From there if no success either way then possible wedge section- cos seems my primary is very deep within my right lung- it may mean removing my lower lobe BUT then they can get right to the primary. They really don't wanna do that cos of my proneness to infections but it may be the only way. Then he threw at me that I may have two different types of cancer and that one bit is responding to Gefitinib but the primary ain't (doubled in size since 3 months ago on PET scan). Funnily enough - nothing said about the brain scan ??? Ermmm hope that's good?? He said I was very confusing - think he meant confused but didn't put him right. SO- seems putting things in writing does glean some more response - rather than just going along with a list of questions. Appears to give them time to consider the options- of which there were none last month. ADVICE to others - do your research and e-mail them when you feel they're not listening to you!!

    Anyway on a lighter note- big row with 17 year old grandson last night!! We have a brick built shed in the back garden and at midnight/2.30 and later him and his mates were ensconced in there chatting loudly- woke me up and probably half the neighbourhood- stupid little sods don't realise there is only a wooden door and sound carries at that time of night!!! Atilla the Hun comes to mind!!! Ooooh I went for it- don't you have any thought of others? everyone can hear you giggling and talking over each other? this is not a "doss house" for all your mates after certain hours? have you no respect for me or anybody else? You can imagine the scenario I'm sure. Friends thought they were sleeping here - but sent them on their way at 3am!! Wicked wicked woman!! I was totally f****d off to say the least. He has been quiet as a lamb today -won't last- but gotta be done sometimes huh??

    Enough of that - but did put me in a totally knackered frame of mind for today's appointment! Then the cat puked on the carpet, brought in what looked like a rat and - do I have to say more!!

    My dating journey/expedition has ceased- sorry might have been fun to go into details of actually meeting someone- apologies for disappointing! However, I did meet a really nice guy in the local library- way to go girl LOL! Have seen him around the village wherever I go, pub, supermarket and now the library! I'd like to think he;s stalking me BUT think not tee hee! Will say Hi when I next see him - nothing ventured, nothing gained. Actually the thought of having any relationship bar holding hands could be disastrous - think of my diarrhea!! Now that has got to make you giggle?? Skalia introduced me to the freedom of Tena lady pants - safe, but a little bulky! Puts the big pants of Bridget Jones Diary into oblivion!

    My darling dachshunds apparently put me to shame this morning, when walking with my lovely lady from the Cinnamon Trust, and the younger one killed a duckling!!! How embarrassing- and there were spectators!!! She is in my very bad books at present - along with the Grandson! Apparently found it in the stream that leads off the main lake in the village and just swam off off the lake with it. DO so hope it survived but have a feeling she was its' Nemesis!

    I live in a really small village but we have a website where everyone posts their moans/request/comments - I just daren't look!!

    Just to expand on the Cinnamon Trust for info - if you have a dog/dogs and are finding it difficult to walk them - they are a Charity recommended by my lovely Macmillan nurse- and they have ladies and men, I suppose, who volunteer to walk your dogs for you for free. I have two lovely ladies, who have become close friends, who have walked them for a couple of years now. One does in the week- the other at weekends. Since my VATS I have such bad nerve damage my two standard dakkis are strong and pullers and these wonderful people have managed for me to keep them and for them to be excercised - I have now started to go out once or twice a week with their help, which really makes me feel so much better. Look them up.

    In addition to all this going on, I have decided to decorate my bedroom! I live in a Housing Association property ( not by choice but don't get me started on my ex- husbands!) Only two, promise, with a 25 year gap. My grandson and I were living in a one-bedroomed bungalow until I got a Residency Order for him, when he was 9. Initially we moved to a 2 bedroomed bungalow but his room was 9'X6. Eventually,we then did a swap to a "shit pit" of a house, took me three weeks just to allow us to sleep there. Maggots coming out of everywhere and mattresses/beds (soaked in blood/urine) left behind. I had to get protective clothing for people that helped me it was that bad. Did my Grandson's room first - decorating wise- and then plodded on with decorating each room. However, within 12 weeks I was diagnosed, and things ground to an almost halt. There was one bedroom painted in red/blue gloss! Managed to paint that myself about about 2 months ago and have moved in there- now the very last room to do is the one bedroom that was almost bearable. So now I feel a bit more positive and on the steroids! I'm going to attack that. BUT in the midst of this I have a garden front and back and I couldn't bear watching the grass grow to straw level - so my son put artificial grass down in the front- great stuff!  BUT the back garden is now my nightmare- you'd laugh cos allotment guys say good to use old carpet to stop growth - so I now have a fitted carpet back garden!!

    Hell- I waffle- BUT do I get the feeling the steroids are working TOO well??!! Love and hugs to all and sorry I've gone on and on and on. Love and Hugs Diz xxx 

  • FormerMember
    FormerMember

    "sorry I've gone on and on and on"

    that's exactly what we want from you Diz:

    go on and on and on

    xx

    Skaila and Honey, your goddog ?

  • FormerMember
    FormerMember

    “the freedom of Tena lady pants - safe, but a little bulky”

     

    confession – I gave you the nhs free ones – probably large size – got samples small and large –  I use the small which are not bulky under jeans

    But I use lady tenna under dresses and bikinis and they really are small:

  • FormerMember
    FormerMember

    Hi All l- Brief one today cos in a slight alcohol haze last night- medicinal of course to try to override the steroids and get some sleep- I have lost my glasses!!! Very difficult to search for them with no sight!! Found some for distance but useless for reading- so excuse spelling mistakes?! Skalia - I have used up all your panties you gave me so kindly - but found Wilkinsons do some very reasonably!! £5 for a dozen I think. They keep your "nethers"  very warm don't they?? Brilliant safety mechanism for outings when your tum is undecided as to how it's going to behave! 

    Anyway - very quiet day today whilst nursing mother and father of a hangover - really gotta knock it on the head - been inbibing far too much these last few weeks whilst worrying about yesterday. Not quite on AA level yet  BUT really not good! Orange juice and loads of "council pop" (water) today and feeling almost human - if I could just find my glasses aaagh!! Probably find the dogs have eaten them??!

    Love and hugs to all Diz xxx

  • FormerMember
    FormerMember

    Hi All l- Brief one today cos in a slight alcohol haze last night- medicinal of course to try to override the steroids and get some sleep- I have lost my glasses!!! Very difficult to search for them with no sight!! Found some for distance but useless for reading- so excuse spelling mistakes?! Skalia - I have used up all your panties you gave me so kindly - but found Wilkinsons do some very reasonably!! £5 for a dozen I think. They keep your "nethers"  very warm don't they?? Brilliant safety mechanism for outings when your tum is undecided as to how it's going to behave! 

    Anyway - very quiet day today whilst nursing mother and father of a hangover - really gotta knock it on the head - been inbibing far too much these last few weeks whilst worrying about yesterday. Not quite on AA level yet  BUT really not good! Orange juice and loads of "council pop" (water) today and feeling almost human - if I could just find my glasses aaagh!! Probably find the dogs have eaten them??!

    Love and hugs to all Diz xxx