Newbie Who May Or May Not Have Cancer

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Hi I'm new to the Macmillan Forum here though I have helped out at coffee mornings and cake sale events for Macmillan's. 

At 58 I have in recent months faced increasing fatigue and shortage of breath (Covid-19 has been ruled out and I have been tested for that). From casually walking ten miles without a break I find myself having to stop for a sit down multiple times on a 2,000 yard walk to the shops - worse when carrying shopping.  My bowel movements were sporadic, and in recent months stained red with blood.  Reluctantly I went to the doctors, who arranged blood and Faeces tests with the hospital. They find me dangerously anaemic, short of iron and folic acid. They told me I would be treated fully within two weeks but as the fortnight ended I'm told my Colonoscopy could be any time in the next three weeks. Though not ruling out other possibilities my GP says there is a very real danger I could have bowel cancer and right now just not knowing one way or the other feels worse than 'it is the Big C, you've got about 3 months'.  The waiting knowing the problems inside me will be intensifying is horrible. 

  • Still so much going on - I have a CT Scan tomorrow afternoon, which will at least be easy after the Colonoscopy treatment on Wednesday..  Finally told my Mum what was going on, which was emotional for me but she took it well - as she is her 80's with a lot of health issues of her own (heart, not cancer) I kept telling myself I'd only tell her when it started getting serious then realized having Colonoscopies means it is now serious.   Promised her daily updates from here on in. She is a retired nurse herself, (Gynaecology departments mostly)  she wants to check my consultant's credentials, though as yet I don't have a specific consultant, and she offers to cover me going private if need be though I am happy to support the NHS - any feedback on advantages / disadvantages of private care might be handy though. 

    getting grief from the DWP as notified them of my situation due to appointments messing with job search time (I'm on Universal Credit). They want a doctor's sick note though as yet I'm still getting ;highly suspect it's cancer' and my requests for data on whether i'm fit for work keep getting pushed aside for later. As I'm told I look pale and more than 20 minutes of even basic physical activity leaves me gasping like a fish in the Sahara I doubt if any employer would take me on - the irony being that Covid means few are hiring and face to face interviews are rare events in general, so going in with existing potentially critical health issues is just wasting everyone's time. Getting very little in writing from the medics, so it all seems nebulous, they still say looks like, might be cancer, no direct concrete condition identified - feel like I'm getting the DWP to just take my word for much of this - Arthur 

  • Glad you've told your Mum.  It's best for both of you.

    I see I mis-read the report of your colonoscopy and wrongly interpreted your "... what seems likely to be  cancerous ..." as meaning you had a definitive diagnosis.  I don't think that's necessarily definitive until they have the results of the biopsy, which no doubt was taken during the colonoscopy.  Good luck, it may not be as serious a problem as you fear.

    I cant comment on your hassle with DWP as I haven't had such dealings for many years.  I sympathise with you on that front; by all accounts it's very difficult to deal with them now - the last thing you want when you've got bad health to cope with!  Good luck.

    I have, as it happens, just embarked with some "Private" health care of my own.  So far I have just had the initial telephone consultation (they have access to my NHS records, after a bit of a delay caused by my NHS hospital.)  I have now been offered an endoscopy and PET scan (not cheap), which the private consultant thinks should have been done by the NHS at the end of my treatment.  I am deciding whether to go ahead with this, in view of the costs and travelling involved, and where this might lead with future treatments.   I just don't know how the Private care can interact (or, worst of all, interfere) with the NHS.  I just hope I will not be deemed by the NHS people to have "blotted my copybook" by "going private".  I am assuming that when it comes to the likely palliative care that will have to be done by the NHS.    

    I'll keep you posted.  Good luck.

    Fortie
  • Thanks Fortie,  I'm happy with the NHS handling I've had overall, especially given the huge extra strain on them due to the general Covid apocalypse going on - just curious to see if the private would do anything better or different - guessing not much 

  • did the eg reading hospital visit - Not much to report on this one – they sent me to completely the wrong place, the EEG department that shuts at weekends, not the one I should have gone to. Reception then couldn’t book me in because the system had me already booked in, and I had to wait about half an hour before they git me logged in and the team was still waiting for me
    They were nice people. I had to have some chemical poured into my bloodstream for the EG machine to read – that meant another injection, or rather two – the first failed to take and two make nurses slapped a wrist each for several minutes trying to get visible veins to come up. So many needle bruises on my arms the police will think I’m a heroin addict.
    The machine itself looks like a big oven, but it was totally painless - got instructions to hold my breath – pictures were taken – that was it – told it could be up to 2 weeks before a consultant called Dr Hart tells me what they found – back to the waiting game – Arthur
  • My sick note has been accepted by the DWP so exempt from seeking work until Halloween.  Quite a struggle getting this sorted out. 
     
    My only surviving cousin, who I haven't heard from for a few years heard about my troubles and got in touch which is lovely. 
     
    My 80 year old mum hopes to come over to my city, 40 miles from her home,  to visit me though it might be a few weeks before she can make the trip over.
  • I have a meeting with a consultant at the hospital next Wednesday afternoon - hopefully I'll finally find out the extent of my health problems and my options from there onwards 

  • my appointment with the consultant has been brought forward to Monday which means I should hopefully get the full picture of my plight and expectations / hopes of a future or absence of one from there 

  • I hope you did have your meeting today and that it was positive:  at least insofar as  you have more information.  You may now know whether you have some sort of "fight on your hands" with the enemy (cancer) or not, and your thoughts and feelings have some basis.  It will have been a  difficult meeting, they all are, and, as has been made clear to me today*, it's quite easy to misunderstand what is said.  Let yourself settle into what you have learnt (e.g. sleep on it - if you can) and then I advise contact your allocated nurse at the hospital with any queries you have.  You  were probably told of your treatment plan, so hopefully you know that things are underway and being dealt with.

    Good luck.

    *  The reason I say that is that I had my first 3-monthly telephone call with my Oncologist today, after the last telephone meeting with my her, which had explained how my treatment had gone.  - back in July.  It seems that the communication at that time had led to some slight misunderstandings on my part, causing me to have overreact negatively.   I am now feeling a bit different and regret that I hadn't asked to clarification before.

    Fortie
  • Thanks, actually positive news - though it is cancer in the bowel they feel confident they can irradiate it with surgery - I have to take some exercise bike tests soon to establish if my heart will cope with the surgery - feel like I've been put in for the Tour De France - they said there is a leaky mark on my Pancreas but they don't think it is a threat - they have sent the finding to another consultancy for a second opinion - ) might need a colostomy bag after the surgery and up to ten days in hospital but my survival chances look good 

  • Friends in my former home city have had a whip round for me and raised quite a neat sum of money to help me support myself through the health crisis. I'm deeply moved by their kindness and generosity.  There is no word yet on when I have to attend my pre-op meeting with the anaesthetists and ride an exercise bike to see if my heart will cope with the surgery. b It is very distressing. Every phone call that isn't the hospital frustrates me.   The new Covid restrictions might well delay my treatment longer. Got letters about hospital appointments already done, the letters arrived over a month after the appointment times. Luckily I got the appointments by phone in time.  Friends and family hope to visit me in hospital, but the NHS rules seem to be no visitors unless you are dying (presumably with days or mere hours to go).  I could be totally alone for my estimated ten day hospital stay. Part of me wants that (as mentioned on other threads here) but there are people keen to see me too and I don't want them shutting out, but the Covid measures are likely to achieve that anyway.