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?
I am sorry to hear about your diagnosis Macmi1, and a very warm welcome to the community. What an awful situation, your trying to process and being sent from pillar to post by both hospitals. I would consider contacting the hospitals PALS and tell them your frustration that I am sure your having. Commincations from hospitals to patients is so important I think they forget sometimes that your already got a lot of stress with your diagnosis.
I waited around four weeks between diagnosis and my operation but I was aloud to go on a two week holiday between diagnosis and operation it was an already planned holiday which actually was good to relax a bit and process it all. It seems to vary how long between diagnosis and operation and also treatment in general. The lovely ladies here are very supportive and I am sure they will all say hello. With different treatment and staging there us a wealth of knowledge.
Sending you a big hug
Thank you for your very quick support, it's valued, believe me.
I was diagnosed in June and had my operation in August, they were able to tell me roughly when they thought my operation would be but didn't confirm until a few days before. Have you had your pre op appointment? You are likely to get one before your operation.
Can your gp help chase things along for you?
Lots of love
Thank you sooo much for your quick response.
Unfortunately, I was led to believe it was urgent urgent urgent, but reading comments etc it now seems my idea of urgent is not theirs. Told to "carry on as normal" is utterly ridiculous, partly given the shock of the unexpected diagnosis, and partly due to the inability to confirm or cancel any plans.
Your support to another sufferer is greatly appreciated, thank you.
It must be so frustrating and confusing to get such mixed messages, we hear urgent and think they will be doing something in a few days and to the medics urgent seems to be within a few weeks. I went on a pre booked holiday for a week before my op like Gbear, my hospital worked around it, I also worked at work for a week and the rest of the time I had pre booked annual leave, so it wasn't too bad passing my time, but I was like a zombie / on auto pilot through those weeks, I was there in body and not in mind. There's no business as usual, it's more like let's get through this day and onto the next one.
i didn't want to know much about things at first, it took me a few weeks, but please feel free to ask us anything at your own pace.
I found preparing for my operation quite a good distraction, buying things for my bag and getting the house ready for getting back home. We have loads of operation tips when you are ready for them too.
lots of love
I am so sorry to hear your news and your stressful situation.
My partner had a similar experience. He was diagnosed with bowel cancer September 17,within 2 weeks he had been given various appointments and operated on,it was amazing how quickly the hospital worked. We really couldn't praise everybody in the medical team enough.
Unfortunately October 2018 after being called for a CT scan he was told the cancer had returned, and was then asked to attend a PET scan...
The results of the PET scan weren't good news,to be told it had spread to numerous places and inoperable is devastating enough, but then to have to chase your own appointments etc is extremely stressful and I feel unacceptable...
If we hadn't made phone calls after phone calls I am sure the chemotherapy would not have commenced when it did.
I do feel sometimes people don't stop to take on board how the patient and their loved ones are really feeling and what an immense stressful and upsetting time it is for all concerned. I think because they are dealing with this everyday they can lose their way a little in relating to what people are really going through. I don't think intensionally, just because it's 'their job'.
I do know it is a different experience for everybody, and I wish you all the very best,and hope you can get sorted very soon.
Lots of Love. xx
I was diagnosed Dec 10th 2018.....operated on Jan 23rd 2019. I had a hospital transfer too and Xmas in the middle. I would keep calling, you must be screwing yourself into the ground.I personally would keep calling both hospitals
Stay strong .you are in good hands x
I had a similar experience in that once I went to the doctor it was all systems go. He actually questioned about sending me doubly fast!!
After the hospital had done all the tests and scans I was given a date for the operation. I was suddenly rung up on a Thursday to go for a pre op on Friday, with a view to having the operation on the Tuesday!!!! I was in a flat spin I can tell you. I had no decent nightie, no pads, no bag packed and I was very worried about this speed. On Friday, while at the pre op I got a phone call to say they had an emergency, and my Tuesday operation was cancelled. I had to wait another 2 weeks, which made little difference to my outcome.
It turned out in the end that I had low stage cancer, which was sorted out with just the operation! But, I suppose they don't really know that until they get in there and see what's going on.
I agree that you should ring both hospitals. During both our cancers we have learnt to keep your eye on what is happening, ask questions, and if necessary NAG !!! xxxxxxx
Love the word NAG!! NannyAnny. You put the finger on it there. Its unfortunatative that at times hospitals don't communitate well between each other. I have found this happening a lot when I feel I have to keep telling them everything when I have asked on serval appointments to share my notes because it can become very frustrating on top of the worry.
We always had a laugh with my husbands consultant. He was Italian and very good, but every time we saw him he couldn't be bothered to wade through my husband's file, which was about 3 inches thick!! He used to ask us to fill him in!!!!
Likewise, I think my husband is the first laryngectomee (person with no larynx) the GP has ever met. He says he is learning with us!!!! But he always listens and gives us whatever we need.
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.
Anything you are unsure of just ASK, if you don't understand anything ASK...
Remember YOU are important, just as important as the previous person and the following person.
Don't feel rushed, get the time and attention you deserve.
Life can throw unexpected, unpleasant things at us,but people are strong.
We are all stronger than we think.
Massive hugs. 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.
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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