Well, now it's my turn to blog. I just have to get rid of these feelings somewhere!!
Markus went for a check up today, as they told us he should a couple of months ago. The first contact should have warned us - in fact, it did. The good woman at reception was expecting us, but wanted the transfer slip saying what examinations Markus should have. Well, we hadn't been given one. She didn't believe me and said so. Blood tests and gastroscopic ultrasound, I told her.
Blood test and ultrasound, she corrected me. M was not registered for a gastroscopy.
So, we waited, as you do, and the nurse took some blood. And we waited again.
Then the oncologist we saw last trotted by, to be waylaid by the receptionist. 'We have 3 different versions of the tests Mr H (Markus) should have' she said.
'We've got one on paper, one in the computer and now his wife tells me something else'.
Big Onc paused in his flight to say that a gastroscopic ultrasound would be good and this was arranged for next Monday at 7.45. Good, that at least.
The Onc mentioned a CT, but I only understood that it wasn't possible today.
X rays we had with us already, fresh this week. So now an ultrasound. And Mr Big Onc whisked away in a flurry of white coat
So we waited again.
Then Miss Little Onc ushered Markus into the ultrasound room and said 'Why are you here?' For our breakfasts, of course. If she doesn't know....
'I haven't read your file' she tells Markus merrily. Then she ultrasounds his stomach area. 'Didn't find anything' she says, gaily.
Nobody, but nobody, looks at his chest. He has cancer of the oesophagus, and an enlarged lymph node which has paralysed his vocal chord. He still has no voice.
Markus asks about having his PEG feeding tube removed. 'Oh, we like to leave them in' says Little Miss Onc. 'When your oesophagus is completely blocked we can't put it in again!'So she has registerd there's a tumour there. Not a tremendously sensitive way to deal with the situation.
'That's it' says Little Miss Onc and ushers us out.
'Here's your transfer for next Monday for the gastroscopy' says Receptionist
'Don't forget to come'
We start to walk out.
What about the scan? Is that all? I go back and say I don't feel very happy, I'm not sure that all the tests have been done.
'It's all perfectly clear'says the receptionist. 'Blood tests, ultrasound and lung x rays. Those are our tests here'.
I search out Little Miss Onc then, who says we can have a ct within a week if they think it's necessary.
We leave, thoughtfully and with a great feeling of insecurity again. Standard tests, maybe. But if your cancer is somewhere else?
Next Monday we'll see.
I have to say that this is not the UK, not the NHS.
FormerMember
Thanks to all of you who found the time and took the trouble to read and reply to my outpourings.
I've recovered pretty much, and have thought out, with your help, a kind of strategy for the rest - now I know what tests have to be done 3 months after the initial treatment. Thank goodness for Internet. And I'll write down everything they say, including what, when, where and who, and then check back with them so they can confirm it.
The whole business is partly my own fault, really, I should have realised from our last appointment that things don't run so smoothly and taken more care.
What I'm still not happy about is that the whole business upset Markus very much. He doesn't say much about it, but he couldn't sleep or eat, and is so depressed now. You can actually see it physically affected him.
If they treat you like that again Pat. Yes, it is very upsetting to see someone you love being mistreated and getting so upset that it affects their physical welfare. Thank heavens for the Internet! When I was first diagnosed I had to make do with some rather out-of-date books in our local library - but even there I made some startling discoveries that were never communicated to me at the hospital (eg, there is NO chemo that can cure the cancer I have, which would definitely have made me think twice about continuing with it!). I hope that, once they see that you know what should be happening and when, they behave with more courtesy and respect. Please 'blog' us developments, and please also give my Viele Liebe Gruesse to Markus. xxx Penny
I am so sorry Markus was made so unhappy. It is much harder to watch someone you love treated like that than if it happens to you.
Is there a message board like this in German? My friend in Freibourg is suffering for her husband too. It would help Markus to be able to talk to several someones with similar experience who would understand. As well as you I mean. With the best will in the world, we tend to take our families for granted. We trust them so much we show them our worst side.
Even lurking for a bit might help him. But your grabbing hold of what needs doing will help a lot. I know it helped me a lot to have my husband sitting there with the oncologist. The surgeon was somehow different. He was going to cut out a piece from the smallest apertures he could manage. Straightforward to understand.
Thanks to everyone who posted on here, you truly helped me to get over the feelings of frustration and confusion which reigned. Markus prefers to think as little about his illness as possible - he tries to do everything necessary, but he doesn't really want to talk about it.
Well, after the experience last time, I was extra careful. I double checked the appointment in person during the week, praising the receptionists as I did so. They became an iota more friendly.
Today Markus had the gastroscopy - still no sign of a tumour in his oesophagus or stomach. 'Not bad', said Mr Big Onc. 'But there's a thrush infection'.
Then we waited for the oncology appointment to discuss treatment, etc - and didn't even have to wait long. Surprise, surprise, a totally different oncologist - one I've never seen before, and Markus only once briefly in passing. However, she had done her homework.She told us there was good local improvement, and she answered a lot of my questions before I even asked them ( I'd typed out a list), telling us that they can't see lymph nodes on an x-ray unless they're the size of a tennis ball. So to check up on the lymph node situation they want to do a CT, and to check on the spine, an MRI. But why didn't they arrange these things before? Last week, for example?
In spite of being woozy after the injection, and in spite of his paralyzed vocal chords, Markus here raised his voice and said 'But we want to go on holiday to England! To which she replied - 'That's your choice - I can't tell how much anything is going to grow in three weeks!
But I don't want to spoil your well-earned holiday. We'll do it when you come back'. So now the scans are set for 9 September, and the discussion of further treatment is the 19 September.
On the whole, it went well - I had the feeling that we got all the information necessary, for once. She also said that the tumour was unfortunately stage 4, and that they'd had to break off the chemotherapy because of Markus's pneumonia. It was a case of balancing the advantages and disadvantages, as to continue could also have killed him. Though the local effect of the radiotherapy was good, they could say nothing about the lymph nodes, particularly the one that is pressing on his vocal chord, or the hot spot in his spine (they'd said possibly degeneration before) before the CT and MRI. This would be the restaging examination. The other results from the blood test and ultrasound were normal.
So this time we left with dates and times for our appointments; we know what will happen and where we have to go. We also didn't have the feeling she was keeping anything from us or couldn't be bothered to talk to us. Rushed she was - she wanted us out - and she was also neither friendly nor sympathetic, but she gave us what we needed - a feeling of some security, a feeling of actually existing, of not being lost in the mills of bureaucracy and routine.
But for Markus there were three shocks - MRI (he suffers from
claustrophobia); he has to keep his PEG tube; and he has to self inject anti-thrombosis medication till the END of 2008. 9 months of injections in all. Markus the pincushion.
Time for a rest. Time to see the shores of my home country. Time to wander through the Dales and get mistaken for gypsies. To be in a place where I know what I will see behind every hedge, in every field, under any stone. Smell the sheep and hear the curlews and lapwings. Time to go home.
Glad to hear you had a better experience at the clinic & have now got definite dates & appointments. As you said elsewhere we seem very similar - I too want to know what's going on whilst my husband doesn't want to talk but just get on with what's necessary.
I hope you enjoy your holiday & you both return feeling refreshed & renewed in strength to continue the battle.
