patzel
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he’s been airlifted with the helicopter to the local hospital on the main island yesterday. Luckily I could come with him so he didn’t have to travel alone. GP was still not sure whether it was necessary but agreed when we insisted that he should be admitted.
Hospital said it was the right thing to do and put him on the drip immediately.@clare
it is around the area where the drain was, but it could not have been a “fresh” infection because that was more than 10 months ago.Hospital staff think it is cellulitis, did not rule out other possibilites yet but will only perform a biopsy if they are not happy with the response to the antibiotics. In other coutries they do a routine biopsy to find out which particular bacterium caused the infection just to make sure they got the right antibiotics but under the NHS this is not done as a routine.
So far there seems to be a positive response to it but considered he’s been on oral penicillin for 1.5 days and now on iv penicillin for another 1.5 days I would have expected a bit more of a response.So at the moment they are trying to sort out his pain management and hope with the infection going back that the opioid dose can be lowered (because he seem to get a hang of it).
Finally also Aberdeen must have come up with a treatment plan or at least they are discussing it according to the information of the local hospital staff. They are thinking of either bisphosphonates or radiotherapy.
So I need to find out now what will be the best option and what sort of radiotherapy might be possible. And I hope whatever it will be that it has not too many side effects, I don’t think he could cope with too many more problems at the moment.
I agree with you all, also does the nurse who came round today.
Unfortunately GP doesn`t think he should be admitted as long as he`s looked after at home. He is convinced the antibiotics should be sufficient to keep the infection at bay and has lowered the dose of the opiods. Well, the latter I agree with to hopefully minimize the hallucinations. But I am not so sure about the infection…
It`s not easy to just go to the hospital if you live on a remote island. The only way would be to airlift him with a helicopter. And this can only be organised by the GP.
In the meantime (during this night) I can only keep an eye on him and if there is any worsening to call the GP again in order to get the helicopter (gale force winds tonight so this might be some task)…Dan
keep pushing them…
if you don’t push the NHS everything is just happening very slowly. And yes, it does seem that one has to make sure that there is communication happening between the consultants!
Just fighting a similar battle to get a referral to a specialist down in England (we live in Scotland where the NHS does not give you a “right” for a scond opinion but decide individually).
Just for comparism: my BF diagnosed with CC October 2012, resection December 2012, first follow-up scan end of June 2013 (should have been earlier I think). Complaints about pain and swelling on a rib ignored by consultants, was told it might be a trapped nerve, prescription of painkillers en masse, three months later (finally) a bone scan and an x-ray confirmed bone met, still no suggestions about treatment but more painkillers prescribed, now PET scan, consultant on holiday for another 2 weeks…
we want the referral NOW and don’t want to wait until the consultant comes back… in my opinion far more sensible to get the results looked up by the specialist and the consultant at the same time to come up with treatment suggestions at the same time… don’t want any more delays.
Officially the NHS has a database where patients results (scans etc.) are held and most GPs can just log into the system. So can there be any justification of one involved medical professional not wanting another having access to the same data in order to speed up the process?
Stay strong and keep pushing them!it works with me (but I have sent you the pdf as an attachment to an email, perhaps that works better?)
Hi Percy,
not necessarily a misunderstanding. I know what you mean and I know that the Chinese approach is different to the one herbalists/phytotherapists chose.
It’s far more complex.
They do have something in common which is the holistic understanding (hope this is the right word, might sometimes have problems since I am German and English is not my first language).Anyway because the Chinese herbal medicine is far too complex and one might need some experienced person to guide you I have chosen the other approach many decades ago and decided to study phytotherapy with a focus on traditional herbs (was surprised that many plants considered to be weeds are so useful).
Licence or law is no guarantee that you get the proper stuff but it is somewhat reassuring that there are some regulations and tests (of course there will always be black sheep) what I meant was this http://www.edqm.eu/en/european-pharmacopoeia-background-50.html
thank you, Percy, interesting links!
Problem is – as you mentioned in one of your postings – very often that one needs to make sure that the quality of the drugs is good and that they are not contaminated.
Many herbs (not only Chinese ones are powerful) can be grown in the garden or the vegetable plot (having my problems to grow them to maintain our supply on an island in the North of Scotland though).
Unfortunately CC is such an aggressive cancer that time dictates to buy the supplies.
I usually try to get the things I can’t grow via Germany where the pharmacists are controlled by laws and have to make sure the herbs supplied do meet certain standards. For some a doctor’s prescription is needed.
But this way I can avoid the risk of getting herbs of doubtful origin.may be a bit controversial: herbalists have long found out that very often the whole plant/herb gets a better result than the use of only the extracted active ingredient(s). So far there has not yet been an explanation for this mechanism.
I can only mention my own experiences in treatment of animals (and myself). Of course there is a difference in the treatment of animals and humans but since a lot of tests are still done with different species of mammals very often the results can be transferred to a certain point.
With a combination of three different plants (1 chinese root, 1 south american root, seeds from 1 common european plant) angionesis inhibiting effect could be reached in a pony with a soft tissue tumor. The tumor (which was growing fast before treatment) has been dormant now for more than 5 years. I did not mention the names of the plants/herbs because scientists have found out that one of them does work completely different in other types of cancer such as osteblastic lesions which are triggered in growth whereas the anti-angionetic effects seem to be limited to soft tissue tumors.My own (very small) tumor (which is not a CC) has been kept at bay with the same combination for 17 years without any other treatment and has since shown no signs of change. This might be coincidence or sheer luck of course.
So what I am trying to say is that each individual is different. In many cases the use of herbal medicine in combination with chemotherapy might be the best approach, but I do believe that in some cases the results of herbal medicine (if not only extracted active ingredients are used) can be very good.
Problem is that so many doctors just don’t know much about herbal medicine, they are not even able to advise you that certain spices should be avoided when taking painkillers which thin the blood.update:
won’t be before another week is over until the MDT meets again, until then no further information.
But my thoughts are going round in circles which brings me to perhaps strange ideas:
is it possible (theoretically) that the bone met (possibly also the nodules in the lung where we still don’t know whether they are malignant, could be benign and not be associated with the CC) we have to deal with was surgery-induced?
Just from a logical point of view: the CC was caught early (more or less by coincidence and before showing any symptoms) and therefore resection was possible. Bone met didn’t show up on earlier follow-up scans.
Can it be that the surgery contributed to single cancer cells being detached from the original site and swept away to form distant metastases?If this was theoretically possible would then adjuvant chemotherapy after surgery perhaps have been the correct approach to prevent (or at least minimize the risk of) forming of metastases?
As far as I have read through many posts here it seems to be the usual approach in the US to offer (systemic) chemotherapy after surgery/resection (I wonder why). This is not the case in UK. Survival rates in UK are poorer when starting to compare statistics.
Does anybody have any suggestions?
when I took my boyfriend to the doctor on Friday due to severe problems with pain management we were told by the GP that the PET scan had been cancelled. GP only got this information because he tried to find out for us when this scan was going to happen, so much about information supplied by the cancer team in the hospital. Even with the GP communication seems only to happen when the GP puts pressure on.
Obviously the findings from the scintigraphy and the additional thorax x-ray have confirmed the met on the rib. (Whether the PET has been cancelled due to this or due to the costs which the NHS might not be happy with I don’t know, but there is one small good thing to it: he doesn’t have to go through another investigative procedure and additional waiting time.)
The report letter doesn’t say anything about soft tissue involvement so far, but the local swelling which has multiplied in size within the last two months indicates just that.
Additionally the incisional hernia starts to cause problems. This was going to be fixed by surgery on short term but I think this might have to be postponed for the time being to get other treatments started.
Now we are waiting for the MDT to get back to the GP with information about what therapies they suggest. I just hope we finally get more background information to decide which treatment does make sense. I’d rather prefer cyber knife technique (if it is possible in his case) than systemic chemotherapy which seems to cause panic in him when only mentioned.He was absolutely devastated due to the news because until we went to see the GP he was still hoping it might be something more trivial like an infection.
The only good news for the moment is that the new painkillers the GP put him on seem to work without all the side effects the other ones caused. So although he is not pain-free the vicious circle of having unbearable constant pain seems to be broken through.
clarem wrote:your boyfriends husbandyou’ve managed to make me smile there which doesn’t happen often these days… don’t think he has a husband (you meant the consultant I suppose)
We are waiting for this PET scan appointment and this will be when I would like to take the chance for a chat with the consultant. Don’t think they have a plan in this case.
He has seen the GP yesterday to get his health records (my thought was they could communicate with the consultant to get them) but he obviously has to submit a formal request in writing. Besides the NHS charges for having access to your own health records which I think is unbelievable. GP wasn’t of much help there, obviously there is almost no cummunication between her and the consultant.I can’t see why being in a rural setting can be of any disadvantage when it comes to communication. Not nowadays where everything could be sent via telefax, email, images can be saved on CDs etc.
It is a problem for appointments with consultants though due to travelling.If I were to contact the consultant on my own account I doubt that I would get any answers. Since we are not married the consultant would not have to tell me anything. And my boyfriend seems to be more than undecided. There are days when I think he just doesn’t want to know exactly what is going on and some other days he wants to know or would rather have me know to give him the support he needs or only give him the information he can cope with. This does complicate the situation additionally.
@Pattimelt
sorry to hear that also you had these experiences with delays in treatment. But I think CC is not that rare anymore so that doctors have the excuse of not knowing what to do. I’ve read so many articles in medical journals recently and it seems that with this type of cancer case numbers are increasing.No, he was told that perhaps adjuvant chemotherapy might be needed but so far no more informations have been given.
All “information” is filtered by the GP who has finally admitted that she’s not an oncologist (what a surprise she should have realised that before) and can therefore only pass on limited informations.Should treatment not start asap instead of waiting all the time for further tests?
When my mum was diagnosed with breast cancer 21 years ago she underwent surgery within a week from diagnosis and had regular follow ups every 3 months. Now she’s only got to have check-ups every year. Yes, this was a different type of cancer but still I think in my boyfriend’s case the doctors are negligent.
What worries me most: what if they find out that it has spread too far and that there was too much time lost for treatment? Thoughts are going round in circles…since the scintigraphy has shown that according to the doctors there “might be” metastases to the bones he will have another scan, this time a PET scan. Don’t know the date yet, why does it always take so long to get the needed tests done?
In my opinion they should have done a PET scan or an MRI instead of the scintigraphy in the first place…
still haven’t got the full results of the scinti and also no results for a thorax X-ray.
How come it always take so long to get ANY results?
I am knackered, I think the worst is that waiting time where you have to fight all these worrying thoughts going rollercoaster. How can one decide on any plans about future treatment options if one just doesn’t get the informations?Hi Clare,
that’s the same questions we ask. Why did the consultant not speak to him? Why did nobody ever take the time to explain anything to him? Whenever he tried to get information they send a junior doctor round to tell him they couldn’t tell him anything because they were not involved.
No, they did not just hand over results. We insisted to have at least some more information. The medical terminology is not a problem for me although I am more familiar with veterinary medicine. But the terminology is the same.
My boyfriend’s consultant has not communicated with him since the surgery, so to get the records is our only chance to find out what’s happening.
His new scan results are now due on Tuesday next week and will be discussed in a multidisciplinary team meeting. In a letter to the GP it says that the patient is going to be informed about the MDT’s decision.
Those teams are supposed to give recommendations for treatment and/or further means of investigating. The decision of what’s eventually done has to be the patient’s.
Whether the concultant is specialised in CC? I wish I knew. Unfortunately he has never given any information whatsoever to his patient.
But we are going to find out. The next week will be a busy one.my boyfriends CT scan report was issued on the 30th of June, 5 days after the scan was done. Although we rang them up a couple of times in July to get informations or results we were told it could take some time, which was definitely a lie due to the report having been issued already.
After threatening them with an official complaint they finally sent the result via telefax to our GP on the 31st of July, a full month later. And this only because we insisted. GP then handed over a copy to us where he’s underlined what he thought might be the important things.More than another month later (today) he had the scintigraphy which might be looked at by a consultant beginning of next week (if we are lucky, could be next month according to our experiences).
This evening he was discharged from hospital, is still in the same agony as when he went in and still doesn’t know what exactly is causing this pain.
Talk to the GI consultant? He’s not even seen the chap.
Talk to our island GPs? Well I have seen what they underlined in the report and it was not the relevant issues. So it appears to me that they are obviously not able to interpret the result accordingly and recommend any further steps.@ Clare
it’s Aberdeen Royal Infirmary where he’s been treated.Yes it does need some time to get used to the NHS again…
have lived the past 16 years in Germany with private insurance so it could well be that this does make a difference.My own experiences with the NHS were brilliant, I only needed medical assistance once and that was just a (planned) cesarean section so nothing which could be compared with cancer. It was an island hospital but I was perfectly looked after and could not complain about a lack of communication. On the contrary doctors and nurses explained everything the evening before and took their time. And when my son developed jaunice it was taken care of. And we had a very competent GP on the island. So the NHS can provide excellent services.
But in my opinion it does make a difference whether a young healthy woman is about to have a child or whether an elderly man has a rare(ish) form of cancer and might be running out of time. So for him communication and information about treatment options are essential and it makes me sad that we have to fight for this.
