I keep collapsing

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  • Oh, Douglas, I'm so sorry to hear about your cousin. I'm guessing that it makes the roller-coaster that bit steeper for you, too.
  • I guess moving between stages of diagnosis, treatment, more treatment, no treatment, review, remission, and back and forth creates quite a lot of uncertainty.  Knowing the outcomes include the path your cousin has gone means that you can't be blase about each decision process and it's out of your hands. I'd find that difficult and think I'd roll between positive and less positive.

    I hope the optimism and happier stage returns quickly to you 

  • I am sorry you are feeling a bit low and your cousin's poor prognosis will only add to any feelings of sadness.  On the up note,  you did have a good report on 2nd June and are in the best possible hands.  I think its only natural to get low especially when it comes to matters like these.  You are an inspiration to us all.    I hope we get some sunshine to brighten your day.  xx
  • Douglas,

    I have been wondering what it feels like to near the end of Chemo and posed the question before because I suspected it is not "elation" but a slight feeling of despondency. At least during chemo you can feel as if you are doing something positive but then it finishes and you feel a bit on your own? 

    I am sorry to hear about your cousin and her prognosis. I think being diagnosed with cancer is as much a mental battle as a physical battle.

    image

  • Hi Lorra,

    I think you're right. Once the chemo/treatment is over, one is chucked back out into the big, wide world with only a routine scan to look forward to. I am definitely looking forward to the end of chemo, but, as you say, one is no longer doing anything positive. I have no doubt that the despondency feeling will disappear in time. There are cancer support groups and I think that they may be of benefit.

    I hope that your treatment is going OK and I wish you all the very best.

    I'm also jolly glad that I made the early decision NOT to be copied in on my oncologist's routine letters to my GP. Originally I thought that, because I had an early diagnosis and a very small tumour, I was stage 1 or 2. In fact I have a single, small hot spot on my pelvis (I knew this, but didn't realise the significance). I recently discovered that this makes me a stage 4. If I'd realised that I was a stage 4 in December/January,  I'd have had a few more wobbles, even though in layman's terms I'm a minor stage 4. In doctor speak there's no such things as a minor stage 4; you're either stage 4 or you're not a stage 4. For the technically minded I have T1N3M1 NSC lung cancer.

    I am also fervent in my belief that google is a bad thing for this sort of illness.

    Thank you everyone else for your kind words and thoughts.

    imageimageimageimageimageimageimage

  • Douglas - staging is I guess useful to help define things for clinicians but from patients perspectiveit is too black and white (especially if you do any internet searches on it!) Don't   !!     is my top piece of advice - the internet lays every worst possibility out. It's purpose is to give ALL information  - it can't give perspective.

    My sister was diagnosed with advanced cancer - the 'stage' she was at was terrifying, particularly as she was too ill to cope with radiotherapy or chemo which were considered vital. I confronted the worst as I felt it was inevitable due to black and white evidence of staging.

    She's cured  and 6 yrs on ........      image 

  • Haven't  forgotten you Douglas, hoping everything is going well. XXX
  • I glad Jiggi posted because I have been thinking about you but didn't want to behave like a stalker image
  • Hi folks,

    Yeah, thanks for your concern and no worries about being branded a stalker.

    All is well, tho' as predicted I failed my pre-chemo test today by a huge amount. My neurothingies were 0.4, which is very, very low.It's real hospitaltime for even a slight cold. Luckily I haven't got a cold.

    I get re-tested today week.

    More later as in desperate panic to do all the things that I have left undone (my main vice is laziness).

    Keep well folks.



  • Oh well, at least you're predictable, Doug! image
  • Hi folks,

    I was a bit brief yesterday as I was rushing around. Today is a bit less hectic.

    Actually there's nothing much to report. I'll have another go at chemo 1 of cycle 8 next Tuesday.

    In theory that's my last cycle. However, as my chemotherapy regime seems to suit me, I'm going to ask about cycle 9 in order to knock this cancer on the head once and for all.

    Although there is a plan B, it is likely that plan B involves more aggressive chemotherapy. By definition more aggressive chemotherapy can involve permanent side effects.

    It won't be my call as the oncologist will do is own thing. However, if you don't ask, you don't get.

    All the best folks.

    PS My smiley things have disappeared from my screen. Please rest assured that their absence relates to my computer's health rather than my state of mind!
  • Glad to hear it, Doug. Hope that all goes well next week - and afterwards.
  • Dear Doug,

    Thanks for clarifying on the smiley things... the lack of them made me worry until i saw your PS!!! Lots of love xxxxx
  • I hope you and your smilies are back soon
  • go Doug go

    me also not stalker but have been keeping an eye on the thread. best wishes for tuesday !

  • Smilies all round! Great to hear from you Doug, and best wishes from me! xx
  • I've been a bit quiet recently for several reasons.

    Firstly my cousin with lung cancer died last week. It was all quite sudden and mercifully both quick and unexpected. By unexpected I mean that no one expected her to die quite so soon. It's all very sad.

    Secondly I completed session 1 of cycle 8 last Tuesday. These sessions are getting harder and harder. It's nothing physical (apart from 1/10 nausea); it's all mental. Very strange.

    Anyway this time they gave me an anti-anxiety drug called Lorazepam. Lorazepam is heaven. You gently float on a peaceful sea of calmness and serenity interlaced with lots of sleep. That's the good news and I had three days of bliss.

    Weaning oneself of Lorazepam is a different story. All the drug-induced anxieties that Lorazepam dealt with came back with a vengeance. I've been worrying about my business, my relatives, my friends, my friends' jobs, my friends' health, the environment, pollution, sixth great extinction, Stansted and Heathrow expansion, climate change, house prices (both too high and too low), exchange rates (both too high and too low), interest rates (both too high and too low), the economy, Zimbabwe, Iraq, China and numerous other things that are totally outside my control. In fact I've been doing the exact opposite of the Serenity Prayer. These are all issues that I'm normally aware of, but, being a relatively balanced human being, keep in their proper perspective until given drugs.

    It's jolly hard work being anxious!

    So my experiment with Lorazepam will not be repeated. I'm just returning to normality now. It's given me a new perspective as to what drug addicts go through.

    Hopefully I'll be back to normal very shortly, tho' I've still got to wean myself of the Zopiclone. I've now done that 7 times and it's relatively easy.imageimageimageimageimageimage

  • Hi Douglas,

    I'm really sorry to read of your struggles. Your cousins death must have impacted on you for all sorts of reasons both in terms of your loss and because she had the same cruel disease, so thinking of yourself. I can't imagine the mind games that would cause.

    I think that I would feel very out of control. Most of us pootle along confident in our health and wealth and environment.  I guess that confidence has been removed regarding your health and your mind is naturally examining what other areas of life are not as secure/safe as you thought.  Plus your ability to be anxious has been raised by the process and the cancer?  

    I think you're doing brilliantly against all those issues and I'm reluctant to suggest anything because I suspect you know what works for you and have tried it all.

      Do you *have * to wean yourself off the Zopiclone?   What is the reason for not staying on it ?  Or wean off at a later date -give yourself a break to recover and stabilise?

  • Not much to add except to offer you my condolences for the sad loss of your cousin

    hang on in there

    xxxxxxxxxx

  • Sorry to hear about your cousin, these things are never easy, even when we try to 'brace' ourselves.

    I'm doing Race for Life in Carlisle today, I was stuck to think who to put on my 'I Race for Life for...' back sign. Douglas, you have been an inspiration all the way through this battle of yours, and I hope you don't mind but I will have your name on my back today.

    Here's to the future, and to beating cancer for everyone!
  • Hi there Mrs Pig and everyone else,

    Thanks for your kind thoughts.

    I'm 95% back to normal, which is a huge relief.

    My cousin will never grow old; she'll always be in people's memory as a young person.

    Regarding Zopliclone; normally I never take sleeping pills. When I was weaning myself of alcohol with AA all those years ago (1993), one of the many things I learnt was not to be frightened of insomnia. A lot of alcoholics suffer from insomnia so it's a common topic in the recovering alcoholic community.

    Notwithstanding the AA viewpoint of zero sleeping pills, I reckon that chemotherapy is a "special case" for taking sleeping pills. However I only needed them for about 4 nights in each cycle and it seemed silly to take them every night. It's much milder to wean oneself off them with 8 very mild withdrawal phases rather than one giant withdrawal phase after 8 months of chemo. I also belief that Zopliclone stops working after a few months of continuous use. That's my theory on Zopiclone and the reasons behind my course of action.

    I now realise what a tough time "real" drug addicts must have. Hard-liners may say that it's their own fault and, whilst that may be technically true, no teenager set out with the ambition to be drug addict, anymore than I set out to be an alcoholic.

    Sorry folks, I'm rambling on a bit with random thoughts. I'm celebrating being vaguely normal. Yippeee!imageimageimageimage

    Many thanks for your thoughts, folks.

  • Dear Heather,

    Thank you very much. You're very sweet. You've made me cry.imageimageimage

    xx

  • Here you go Douglas, hope it makes you smile!

    http://i230.photobucket.com/albums/ee102/AppleBint/DSC00319-1.jpg

    Keep on fighting, we're all right behind you!
  • Hi Heather,

    Many thanks for the thoughts and photo. Much appreciated. I hope that you had a good race.imageimageimageimageimage

    Yesterday I completed the second session of chemotherapy cycle 8. In theory this was my last chemo. I see my oncologist on 24th July. I imagine that he will order a full body PET scan and I will probably get the results in early August.If the scan is positive for cancer, then I guess I'll have further treatment.However, I have to assume that scan will be negative for cancer,  which means that it's time to start training. Yes, it'll be fairly horrid, but better than being in a burial plot.

    To be honest I'm not sure about discussing a cycle 9. At the moment I'm fairly exhausted. I've had very mild physical side-effects from the chemo, but the mental side is getting worse and worse. I'll see how I feel in a few days time once I've build my strength up.

    All the best eveyone and many thanks for all the support.

    Douglasimageimageimageimageimage

  • I'm having a very whingy day. I'm angry about the hassle I'm having trying to start a new mortgage (stupid conveyancer) angry with the woman who was rude to me tonight out cycling and fed up with everyone needing a piece of me (even though age 5 you are allowed to ask your mother for something every 5 secs, teens and husband get less tolerance)............ very humbling to come and read your post image

    Thank you for giving me some perspective - hope your strength returns soon - don't push the training and don't stress about doing more than you're ready for

    Edit spelling 

  • ((Doug)), I'm so sorry to hear about the loss of your cousin, and about your battle with the anxiety.

    I'm not surprised that you're exhausted, the physical and mental effects of the illness and treatment must be pretty draining. I think it's time to be a bit self indulgent and regroup your resources.

    Take care, xx

  • Doug, I have been reading your whole journey (from 2007 up to now) and what can I say. I cried twice, you have been inspirational. By writing to this forum you have given hope and insight to all.

    My very very close friend (60 years old) had similar experiences, 2 years ago. First she had breast cancer - operated, radio therapy and hormone treatment and she returned to training. Then last year she suffered ovarian cancer, again surgery, chemo whilst still being treated for breast. We are now a year on, she has returned to training, she is racing and is happy. The big "C" will always be on her mind. The exhaustion was her main problem, it does pass, but it will take time. Listen to your body, if it needs rest - pls rest.

    Self indulgence is a good pick me up .....

    Please take care, and build on those positive thoughts/images of training (even a 5 minute walk is a start to your return to training)

    V x


  • Hi folks,

    I saw my oncologist today. Cycle 9 is not an option. My current treatment is at an end. I have a scan on 15th August. I will see my oncologist in early September and he will give me the results of the scan. If it shows what he wants it to show, I will officially go into remission (I think that's the correct term). The 15th August scan will act as a base scan for all subsequent scans.

    It's not over until the fat lady sings, but it's looking a lot more positive than it did on 13th December when I was first diagnosed.

    Funnily enough I actually feel slightly flat.....................like it's all a bit of an anti-climax. I guess that's because I'm no longer under the wing of my caring nurses and I'm now back into the big wide world.

    I must remember that my white blood cell count will still be low for a further few days. It would be incredibly stupid to have to go back to hospital due to a bug caught in the last few days of cycle 8.

    Thanks again everyone. More later.imageimageimageimageimage

  • Fingers crossed for you Douglas xx
  • I can hear the fat lady warming up her tonsils.
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