A Mesowarriors Diary Living with Mesothelioma Im very worried about the NHS and Mesothelioma Treatment


I am a Mesowarrior.

Ray has been republishing my book as we have been selling from time to time and the money going to Mesothelioma Uk every bit helps.

We had to go to Westmalling Research Station as the TSSG Lung Tumour Specific Site meeting was taking place in these lovely surroundings.

I only have to attend twice a year but I do enjoy being involved with the Medical staff of the East Kent NHS.

These meetings are all very transparent and can be read http://www.kentmedwaycancerguide.nhs.uk/resource-library/lung-tssg/

One by one everyone arrived and lunch had been donated which was all very nice and it was great to meet up with familier faces as I have been involved for 6 years now.

We went through matters rising and then a discussion began

Well I listened and I realised that things are getting so very hard for the NHS. Over the years I have seen such a decline in the high spirits of the Doctors and nurses. They don’t talk so much of Trials and procedures but of Targets and Budget and a day to day struggle.

A talk on the collection of data was shown that the figures are not being kept by the system correctly .

The Doctors are doing their job but one system isn’t talking to another. .All this was doing so well a couple of years ago but the systems keep changing. I really don’t know how the Doctors can keep working when things keep changing.

Its all crazy The NHS seems to have grown so big it is impossible to keep track.

Government involvement seems to be that they are wanting to head to Privatisation that they are loosing sight of what the NHS is all about.

It was a business meeting rather than a day to day catch up on Lung treatment.

Then when they spoke about treatment Mesothelioma came up and I can’t believe my ears. They seem to have given up on us.

Operations on Mesothelioma is frowned at. with one doctor talking about the fact we patients get a payout and so they say if not operated on here Ok we will pay for the operation in the US.

This is not true as patients go to London and have the operation there. We have many mesowarriors that have had operations either

Surgery for pleural mesothelioma

Surgery for pleural mesothelioma can be done either to help prevent or relieve symptoms or to try to remove all of the cancer. Unfortunately, these tumors often have spread too far to be removed completely. Sometimes, the surgeon might not be able to tell the full extent of the cancer – and therefore which type of surgery might be best – until the operation has started.

Extrapleural pneumonectomy (EPP): This is an extensive operation, but it may offer the best chance to remove all of the cancer for many patients. It’s most often used when the surgeon thinks a cure is possible – typically in patients with resectable epithelioid mesothelioma that has not spread to the lymph nodes.

In this operation, the surgeon removes the lung on the side of the cancer along with the pleura lining the chest wall on that side, the diaphragm on that side, the pericardium (the sac around the heart), and nearby lymph nodes. The diaphragm and the pericardium are then reconstructed with man-made materials.

This is a difficult operation that is done only by experienced surgeons in large medical centers. You must be in good overall health with good lung function and no other serious illnesses to withstand this surgery. Several tests must be done beforehand to be sure you’re healthy enough for this surgery. Major complications can occur in as many as 1 in 3 people who have this operation.

Pleurectomy/decortication (P/D): This is a less extensive operation in which all of the pleura lining the chest wall (on the side with the cancer) is removed, along with the pleura coating the lung on that same side. The pleura coating the mediastinum and the diaphragm is also removed. The lung and diaphragm are not removed.

In a slightly more extensive version of this operation (known as a radical or extended P/D), the diaphragm and/or pericardium are removed as well.

This surgery can be used to try to cure some early cancers, but it can also be used as a palliative procedure to relieve symptoms if the entire tumor can’t be removed. It can help control the buildup of fluid, improve breathing, and lessen pain caused by the cancer.

Debulking (partial pleurectomy): The goal of this surgery is to remove as much of the mesothelioma as possible. In general, less tissue is removed in this operation than in a P/D procedure.

Possible side effects of surgery

The operations used to treat mesothelioma can have serious risks and side effects, although these depend on the extent of the surgery and the person’s health beforehand. Serious complications of EPP can include bleeding, blood clots, wound infections, changes in heart rhythm, pneumonia, fluid buildup in the chest, and loss of lung function. Most of these are less common with less extensive operations.

Because the surgeon must often spread the ribs during surgery, the incision will hurt for some time afterward. Your activity will be limited for at least a month or two.

Surgery for peritoneal mesothelioma

Surgical treatment of peritoneal mesothelioma can be done either to help relieve symptoms or to remove the tumor from the wall of the abdomen and digestive organs. As is the case with pleural mesothelioma, these tumors often have spread too far to be removed completely.

Debulking: The goal of this surgery is to remove as much of the mesothelioma as possible. Sometimes this means removing pieces of the intestine as well.

After the cancer is debulked (but before the operation is finished), chemotherapy may be given into the abdomen. This is called intraoperative chemotherapy. If the chemotherapy drugs are heated, it is called heated intraoperative (or intraperitoneal) chemotherapy or HIPEC. In either treatment, the drugs are left in for a short time, and the incision is closed after they are removed.

Omentectomy: The omentum is an apron-like layer of fatty tissue that drapes over the organs inside the abdomen. Cancers in the peritoneum often spread to this tissue, so it may be removed as part of surgery for peritoneal mesothelioma.

Surgery for pericardial mesothelioma

Surgery can remove a mesothelioma from the pericardium (the sac around the heart).

Surgery for mesothelioma of the tunica vaginalis

Surgery for mesothelioma of the tunica vaginalis, which covers the testicles, rarely cures this cancer. Most of the time surgery is done when the tumor is mistaken for a hernia. The surgeon attempts to treat a suspected hernia and only realizes the diagnosis after the surgery has begun. This kind of mesothelioma typically can’t be removed entirely.

For more on surgery as a treatment for cancer, see our document A Guide to Cancer Surgery.

http://www.cancer.org/cancer/malignantmesothelioma/detailedguide/malignant-mesothelioma-treating-surgery

We should at least be the ones to decide. It seems that the operations I have listed here are not carried out by our local hospitals nor are they discussed with the patient, maybe if young and fit Hey!! I was old and very fit and I have proved since that I had the strength for an operation.

There are options they should not be dismissed.

I talked about My experience with Keytruda and a Doctor said there are terrible side effects very bad.

I have no side effects I have not heard of one Patients that has had very bad side effects but who was I to argue as I don’t know what is going on in other hospitals with other drugs as I didn’t realise there were other drugs being trialled.

My Oncologists showed pictures of a man’s tumour in the neck. A huge tumour that had shrunk. the results are wonderful so why is there so much bad evidence.

I really felt we had gone backwards and if I was looking for answers at this point in time there would be none.

I go to conferences and listen to all that is done in research but feel that my own NHS is a cottage industry compared to what is going on out there. I don’t know the answer I really don’t Im only a patient but something has to be relooked at, In 6 years chaos is reigning.How do they turn this around?? The problem is to huge.

I even forgot to bring up the case of CNS Nurses  In East Kent as we have a CNS who is so stretched between 2 hospitals that she cant sit in with every patient and talk with them when 1st diagnosed. Patients dont hear what is being told to them properly as the shock of it all is so awful and your mind goes blank, then when we get out of the consulting room we have a thou send questions going through our minds.

.I was traumatized I think. How can an ordinary patient help these wonderful people, gosh if I feel so depressed about it what must they feel like working among it daily.

I want to get hold of Mr Cameron and sit him down and tell him to stop all this nonsense and stop wasting money and get to grips with what is happening.

Nye Bevan must be turning in his grave.

The NHS is a wonderful system that is envied around the world so we must hang onto it. It is sick and it to needs research and a cure.

Please find that cure and save it dont let the TTIP win

https://secure.38degrees.org.uk/page/s/eu-ttip-petition#petition

Please push for treatment from Clinical Trials with your Oncologist http://www.mesothelioma.uk.com/information-and-support/research/clinical-trials/

Don’t give up take your treatment into your own hands take control Mesowarriors be prepared to travel to the larger hospitals that have the trials in and please contact me if you need help mavisnye@yahoo.co.uk

Raymond‘s Blog 

I have been very busy over the past 3 days. Because of some technical issues I have had the enormous task of re publishing maves book. Because the original manuscript is missing and I only had some of it its been a mamoth task. I then had to edit it and after several attempts format it to the right format for publication.

https://mesoandme.wordpress.com/2015/10/22/thursday-139

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