General cancer discussions

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Coping with symptoms in no mans land waiting for a diagnosis

kg1983
Posted by

Hello,

My dad has been unwell for a few months now. He started with abdominal pains and dysphagia, so the GP sent him for an endoscopy which found a small hiatus hernia. His symptoms progressed so he was put on the list for oesophageal function tests but was told his symptoms were 'completely disproportionate' to the size of the hernia, but no other possibilities were considered. He started with back pain and fatigue which progressed to complete exhaustion most of the time. He can't eat much & often feels nauseous - he's lost around 2 stone. This was going on for a few weeks and then we notice a lump on his collarbone. The GP sent him on the 2 week referral to ENT, who sent him for ultrasound biopsy and CT of head to pelvis. This was all done just over a week ago & we have an appointment on Tuesday to hopefully find out what's going on.

Well that was until today when we get a call saying ENT have referred him to haematology next Friday. We don't know why, nobody has told us a thing. All in the mean time his symptoms are progressing, he has new lymph nodes popping up every other day, his back is agony all the time. He went to the UTC a couple of weeks back because of his back pain and was told that there was little they could do as all the tests had been ordered, so to persevere with paracetamol/cocodamol. He saw his GP today and all she offered was nutritional sachets. What the heck are we meant to do in the mean time while we find out what's causing all this? He's even said his urine smells really strong today despite him drinking plenty. It's just constant one thing after another, nothing seems to ease off just get worse but nobody seems to listen because we're still waiting for results. I feel so bad for him 

Bell H
Posted by

Hello - I am just so sorry to hear your Dad has been unwell for a few months now.   I too had an endoscopy whereby they found I had a hiatus hernia.  That was a year ago or so now.  About 2 months ago I notice a lump on my neck,  After the usual tests I was told I had a 'blocked saliva gland' and 'did not have cancer'.  A few days later I was told 'yes - I did have a blocked saliva gland but also cancerous cells showing in two lymph nodes'.  I went from being elated that I had been told I did not have cancer to deflated in one fell swoop.  Like you and your Dad I have found the WAITING the worst thing of all. Everything takes time due to test results.  What I have found though is that during the waiting time for us - there is a team in the background discussing the best course of action for us.  I find out on Tuesday what kind of cancer it is that I have and the best way to treat it if possible.  I haven't slept properly for days worrying and wondering 'what if ... '.  Anyway, I just wanted you to know that I understand only too well how you and your Dad are feeling right now and hope that will help bring a little comfort, however small.  Please keep me posted with regards to your Dad. x

kg1983
Posted by

Thanks for your reply - and I'm sorry to hear you're in a similar boat. It's worrying enough for us outsiders, I can't begin to imagine how you cope.

With regards my dad, the waiting is bad enough, but really it's how symptomatic he is that really worries me and nobody else seems to think the same. We've had no indication of his blood results from a few weeks ago, yet every day he becomes more lethargic, feels horrendous and can barely stay awake. His back pain doesn't seem to be touched by the paracetamol/codeine (he's even taken ibuprofen and to heck with the consequences on his hernia!). I know that ENT have referred him on to haematology but we don't actually see ENT til Tuesday and Haematology on Friday, and from the conversation I had yesterday I'm not even sure the CT has even been reported on yet so how can we be referred on? What if it's the wrong place to be referred to?! I'll be honest a haematology referral seemed less scary than one to oncology, but now the more I think about it the less I know what's going on anymore or what to even think! I think it's harder to get my head around as well because my mum was diagnosed immediately - she went in for a CT for persistent headaches, no other symptoms, she felt fine barring the headaches. Immediately we were called in and tests done and out we went with a lung cancer with secondary brain mets diagnosis. No messing about, started steroids straight away, chemo lined up within a couple of weeks. We only lost her 3 years ago so it's probably playing its part in my worry. I know I should probably be relieved that someone somewhere has looked and sees no urgent clinical need to hurry things along, but there's always that part of you that thinks - well what if they've not even looked? Do they even know how he feels or is this par for the course? So many questions. 

Anyway, looks like we've both got hospital trips on Tuesday - I really hope you get the answers you need & your team can get you on track. 

Bell H
Posted by

Hello again - Firstly, I am so sorry that you have lost your dear Mum.  It's perfectly understandable that you should be worrying the way that you are with regards to your Dad.  I am so sorry you are going through all the 'questions & no answers' seemingly scenario that seems to be so common for people in our situation - whether it be the patient themselves or the patient's family.  Have you voiced your worries to any of the Doctor's secretary's so as they can pass this on to the Doctors your Dad has been seeing?  This action helped me 'move on'.  Have you made an appt to see your Dad's GP so as you can tell him/her all what you say here?  The Macmillan helpline here have been marvellous with me - have you spoken on the phone to one of their Nurses?  I'm sorry if all I say - you have already done - it's just that I can see how upset you are & I know that by talking to as many people as I could - I was able to get some answers to my questions. Please let me know how you get on.

kg1983
Posted by

His GP (not that he ever gets to see the same one twice) has been very 'Well let's see what these investigations show' in other words not very helpful in terms of managing any pre-diagnosis symptoms. I know it's difficult if they don't know what's causing the pain but still.

Dad called me this morning in a bit of a tizzy saying he'd be phoned to attend a PET scan appointment next Monday and was stressing that this must mean it's bad....I told him to look at it this way, that they're getting all the relevant tests lined up so they get done quicker. It's not right that nobody has said yet what they're thinking it is, but he's getting appointments left right and centre in between appointments so being left to join the dots. Roll on tomorrow hopefully we'll have a bit more of a clue then

Bell H
Posted by

Hi There - it certainly looks like they have your Dad well and truly on the pathway?  It sounds so similar to my own journey.  I am quite happy with it - all these appointment appearing so fast all of a sudden.  We are in good hands with the NHS I can assure you.  However - Like you, we too are 'joining the dots' - until we get a final outcome I guess it is all we can do.x

kg1983
Posted by

Hi, just checking in after the appointment today - hope you are ok and have had some answers? Dad's been told he has a form of non-hodgkins lymphoma, not sure which type yet but we'll know more Friday/after his PET scan. He's been given some good pain relief as well so that makes me feel a bit better x

Bell H
Posted by

Hello - I am so pleased that at last your Dad has been given a diagnosis and some good pain relief.  This will take some stress off you I can well imagine.  You will be reading up on non-hodgkins lymphoma now? 

I am not long back from my own diagnosis.  It has been such a long day.  I have throat cancer but the good news it is treatable!  I too have to have  PET scan, the date not set yet.

Thank you so much for thinking about me - I was so pleased to see your message and to see your Dad has a diagnosis and some good pain relief. x