I have been fast tracked through everything so far with FIVE medical appointments in a NINE day span. After those nine days, nothing has happened since, for the next nine consecutive days.
As I have been transferred from one hospital to another, the cancer nurser at the outgoing hospital doesn't return calls despite leaving numerous messages of desperation, and the hospital I am being referred to doesn't give out information to the patient.
I am trapped between two hospitals who won't/can't provide information, and I am unable to plan, confirm or cancel any social/business arrangements more than 24 hours away. How long am I likely to have to wait for an operation date?
This must have been an horrendously long wait for you, although it seems you did at least know it would be about two months. How did you get through this? You must be so much stronger than me emotionally.
However, I have JUST received a letter and a phone call asking me to attend an outpatient appointment TOMORROW. It seems its all or nothing. Jump when we say with very little notice, or be completely ignored for nine days despite pleading for returned calls. They wouldn't tell me what the appointment was for...
Thank you for your response, this is such an active and supportive group.
Thank you for sharing your very private and distressing situation, and my good wishes and hugs go out to you and your family.
I will take heed from your message of keeping on pushing and pushing and pushing, until the disjointed service joins up, it seems from your experience it would be in my own interests to do so.
As just posted I have just received a letter and a follow up phone call today to attend an outpatient appointment TOMORROW, but they won't confirm the reason for this meeting, it certainly doesn't say pre-op assessment. Full on for several days, then nothing for another nine days, and now they expect immediate attendance again. As you say, treating the whole person would be better than just treating the physical condition.
I wasn't aware PALS existed, so thank you for this info. At your suggestion, I sent an explanatory email, and the automated reply indicates they hope to reply within five days!!!
Hi Macmi - good luck for your appointment tomorrow. Take a pen and paper, and write down your questions in advance, and also the answers and information you get during the appointment. This could be a chance to make your point about the poor communication between various parties.
Thinking of you and your appointment tomorrow.
My good wishes are with you.
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Don't feel rushed, get the time and attention you deserve.
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Love to each and everyone of you out there... Xx
Already at the start of the day I can barely type this through tears and shakes of nervousness and fear.
Bless you for your good wishes and reply. It seems I am a very weak link in a very strong support group.
Sending you best wishes for today Macmi1.
Remember we have all been where you are now, so its OK to be nervous.
Sending you gentle hugs this morning.
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It often seems that hospital appointments are a bit like buses - none for ages then they come in threes. Please try not to worry about the fact they won’t tell you what the appointment is for. Clerical staff often genuinely don’t know the reasons for the appointments and if they do they’re not allowed to say unless the consultant has specifically told them to share information.
I remember those awful feelings of nervousness. Gentle hugs. If it helps, visualise our group virtually holding your hand as you go for your appointment. You are not a weak link at all - we are strong for each other. We’ve all been where you are now and we understand how you feel. Thinking of you. Please let us know how you get on. Whatever the outcome we are here for you x
:Literally, just got home after a gruelling day, leaving home at 8.30 am. My tear stained face says it all. I have been poked and prodded everywhere, and I still have to go back next week for part two of the pre op.
Also just hit the brandy bottle on getting home. Strange that two measures have no effect at all...
Now I have an operation date at least I have something to work to, and work around.
Thank you for your support, the photo is just lovely, and very cute. Bears also have a special meaning for us, too, but that's another story....
A big tear stained hug coming back to you. (I'm sure there was no alcohol in that brandy.)
This is such an amazing forum, everyone else is so much stronger than me.
I'm in floods of tears at the moment, have just just got back after a gruelling 8.30 am start, and a very very long day emotionally.. Its just all boiliing over now into being desperately unhappy, and the relief of being away from a hospital environment.
It seems there is no alcohol in the two measures of brandy I've had on an empty stomach...
the Royal Marsden staff have done their best to cope with my general upset, but I am so relieved to be back home, and at least I have an operation date to that live in between have have some limited sense of normality. I still have to "suffer" a long pre assessment day next week though.
Tying errors are down to the fact that I can hardly see through the tears, due to the relief of being home again. I am definitely the weakest person in this group, but the support of others is ENORMOUSLY helpful, its just so sad that any of us have to go through this.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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