In March I completed a fairly rigorous chemotherapy regime - RCHOP. For the first time in over a year, I felt wonderful and able to tackle most things. However, in the subsequent months, I quickly noticed that simple tasks had started to make me feel increasingly tired. Then, without warning, came the pain.
The pain was isolated to the groin area. It then spread to my abdomen and lower chest – all areas of previous lymphoma. I was now being literally ‘knocked-out’ for much of the day. The sensation might be termed as that of being disorientated and a hellish sensation of feeling so very ill. I’m frequently white – it’s an experience that I can’t relate to any other illness or disease I’ve had before - other than cancer.
In this time I have emailed the Mac folk, visited the consultant and had many consultations with blank-faced doctors eager to send me out the door to ‘try’ a different potion. My cupboard is full of failed drugs regimes. I’ve been offered psychological support and pain management – both of which I’ve refused as I regard them as distractions to the main event. The consultant always refers me back to the GP for initial advice – which is never more than the head-scratching routine as indicated. The haematologist couldn’t feel any new areas of involvement when we last met. However, there were no such signs when I was finally diagnosed via a CT scan last year.
So here I am, eight months into the symptoms with no clear idea or notion of what might be going on. A PET scan in March 2008 initially gave me some guarded good news, with only a few areas of concern. My bloods were OK last time. I don’t really know what to do for the best. I don’t expect absolute guidance – it’s just the frustration of it all is getting the better of me.
FormerMember
Hi Andrew
Sorry to read that you have not been feeling well. I can completely understand the frustration that you must be feeling. If I were you I would keep going back to your GP/Specialist until the get the message that you are not well and do a more thorough test. Though not sure what other tests they could do (not much bloody help am I). At least here you can vent and let go some of the frustrations that you are feeling. I went through the same feelings before I was diagnosed, the absolute frustration of not being heard.
Sorry not being very positive am I.
take care
Jacqui
In case you need a laugh: Remember, it takes a university degree to fly a plane but only a secondary school qualification to fix one.
After every flight, Qantas pilots fill out a form, called a "gripe sheet," which tells mechanics about problems with the aircraft.
The mechanics correct the problems; document their repairs on the form, and then pilots review the gripe sheets before the next flight.
Never let it be said that ground crews lack a sense of humour.
Here are some actual maintenance complaints submitted by Qantas' pilots (marked with a P) and the solutions recorded (marked with an S) by maintenance engineers.
By the way, Qantas is the only major airline that has never, ever, had a serious accident.
P: Left inside main tire almost needs replacement.
S: Almost replaced left inside main tire.
P: Test flight OK, except auto-land very rough.
S: Auto-land not installed on this aircraft.
P: Something loose in cockpit.
S: Something tightened in cockpit.
P: Dead bugs on windshield.
S: Live bugs on back-order.
P: Autopilot in altitude-hold mode produces a 200 feet per minute descent.
S: Cannot reproduce problem on ground.
P: Evidence of leak on right main landing gear.
S: Evidence removed.
P: DME volume unbelievably loud.
S: DME volume set to more believable level.
P: Friction locks cause throttle levers to stick.
S: That's what friction locks are for.
P: IFF inoperative in OFF mode.
S: IFF always inoperative in OFF mode.
P: Suspected crack in windshield.
S: Suspect you're right.
P: Number 3 engine missing.
S: Engine found on right wing after brief search.
P: Aircraft handles funny........... (I love this one!)
S: Aircraft warned to straighten up, fly right, and be serious.
P: Target radar hums.
S: Reprogrammed target radar with lyrics.
P: Mouse in cockpit.
S: Cat installed.
And the best one for last..................
P: Noise coming from under instrument panel. Sounds like a midget pounding on something with a hammer.
This sounds so grinding for you - you must be so frustrated and despondant. My heart goes out to you. I really do not know what to suggest - except that if you are in pain then living with pain can be very debillitating both physically and mentally and if it were me I think I would succumb to the pain clinic appointment - I really would. I know what you seek is resolvement of the CAUSE - I do see that, but in the meantime you must be so miserable. Couldn't you see your way to trying (at least considering) making your life quality better by being pain free? I dont know what else to suggest. When is your next scan due? How much involvement do they let you live wihth before re-treating. I find this so unfair. As we speak my Dad is here doing some DIY jobs for me happy as Larry and no probs 2 years after R-chop for Non Hodgkins. It makes you wonder doesnt it. I really feel that you are in a no-win situation at present. Maybe if you went for another opinion - either different GP or consultant? Unfortunately I think it is only going to be YOU making a fuss that is going to change any of this - unless you have a Macmillan Nurse who can do some door banging for you? Thinking about you hun, Love and HUGS Jools xxxxxxx
Hi Andrew, Hang in there mate! Its awfully hard when you cant see anyway through! the frustration is intolerable, but somehow you will overcome it! We are all with you, I think you know that already, so try to be strong mate! We hope things settle down for you, and you have a great christmas and a painless new year.
I guess I can relate a little bit. I've had strange aches since my last surgery, which have been dismissed pretty much by the consultant. But I am coming to the view that they are (mostly) a consequence of treatment, even if rather indirect, as I've had pretty major surgery. I also haven't had an
all-over CT scan since April, which I find frustrating.
Anyway, here is what I am doing:
- Getting my clinical nurse specialist to arrange a second opinion with another oncologist.
- Taking the pain drugs suggested by my GP.
- Trying to get the pace of my life right so it is OK (I have to keep active, but not too active!)
- Planning to make sure I get a general CT scan ordered in my next appt in Jan!
It's frutrating that we have to be so pro-active to get things working, but that seems often the case!
I was so sorry to hear what an awful time you're going through - particularly after our conversation yesterday. I do agree with Jools that it could be a good idea to get the pain sorted - it's difficult to think straight when you're in constant and debilitating pain, and while it's possible to live with it for a very short time, in the long run it is incredibly depressing and undermines everything you do. Of course it's important to find out what's causing the problem, but you also need to be able to function on a daily basis, and to 'be there' for your wife and son as well.
You mentioned last night that you were tempted just to turn up at A&E and I really do agree that if you can't get any satisfaction from either your GP or your oncologist, this might be the best route. I know I'd been fobbed off by our extremely expensive company doctor, but my NHS doctor just sent me to A&E and within a couple of days they had done all the necessary tests and come up with my diagnosis.
In the meantime, you know everyone here is thinking of you - and please consider getting some pain relief, if only over Christmas!!!
