Are there any NHS health professionas who care?

2010-05-29T12:36:36Z

Hi Folks, Sorry to vent off but it would be interesting to get your points of view. My husband Keith has Stage 3 Lung Cancer which has spread to lymph nodes. At his first consultation he saw the Registrar. She asked Keith what he knew.(Previous to this appointment he was told by another consultant that a lobectomy was mentioned to him. When Keith mentioned the lobectomy the registrar just said "well that's not going to happen as it is inoperable". The chemo he will be receiving is just symptom control not curative. We were both devastated at this. Whatever happened to her attending the "Breaking bad news course"? i think she skipped that one. Keith had his1st session of chemo (21st April) and by the Friday was extremely sick couldn't keep anything down. Doctor came to the house to administer injection to stop sickness. The weekend after Keith developed very bad lower back pain as well as sickness. He phoned the ward and they just said "it's probably because you might have been sat awkward in the chair". We then rang Devon docs and they prescribed some antibiotics for a kidney infection. It to 5 nurses 2 goes each to get a line in to administer the chemo so he then had a PICC line put in last Monday. It was flushed on the Friday then he had he next chemo this Tuesday. By Thursday Keith very bad again, worse than before and when the district nurse came yesterday to flush the line it was found to be blocked. He now has to go to the Oncology ward this afternoon so they can try and unblock it. After the first cycle of chemo he was so bad the consultant said they would lower the toxicity level of the next cycle. Keith asked this week if they had done that and they said no it was the same as last time. AAAArrrrrgggghhhh. doesn't anyone ever listen! Keith said if they can't sort his line out this afternoon he will ask for it to be taken out and he won't bother at all with the chemo as it seems to be more hassle than it's worth. We feel very isolated and feel that no-one is actually listening to how he is feeling and what's happening. This is all so very frustrating and upsetting. Is there anybody else that has to fight like mad just to get the service they are entitled to?

Love and hugs to you all Jan & Keith x

My Journey into hell has become a nightmare

2010-04-20T13:58:37Z

Hi, I am Keith, I had a very bad cough and very little energy which was very unusual for me, I was tired all the time as well. I decided I had to go to see my GP about it all. Because i had been a smoker all of my life, he dicided I probably had a broncial infection so gave me antibiotics,and an inhaler, needless to say these did nothing to help. After taking the course of tablets I went back to the doctors and saw a different doctor who actually had the nerve to say there was nothing wrong with me and that I did not even have a cough. I said to him what my normal doctor gave me, and he actually said it was purely to keep me happy and give the benefit if the doubt. He then proceeded to prescribe me a nasal spray. Within 2 days my cough was literally constant, and my wife who happens to be a medical secretary in the Chest Clinic of our local hospital, spoke to her consultant, who suggested I went immediately back to see my GP, This I did along with my wife. He could see I was not well and eventually after much prodding and suggestion by my wife decided to send me for a chest x ray to query COPD.

The x ray was done the next day and 2 days later my world collapsed. A consultant in the Chest Clinic always reviews the X rays and mine was the only one he flagged for fast tract cancer referral that day. needless to say it was spotted by my wife almost immediately. To try and cut a long story short, I had a tumour in the right hilem of my right lung. The first step was a CT scan, which indeed confirmed it was a tumour. Because of the position of the Tumour I was not able to have a Broncoscopy so had to have a CT guided needle biopsy, which provided the answer to what type of tumour it was. It turned out to be a Non small cell carcinoma. which had already spread to some of my Lymph Nodes, and one in particular was causing a lot of concern to my consultant as it was outside of the lung beneath the branch point of the wind pipe. It had already been agreed that I would have a Lobectomy to remove the top half of my right lung, but would first need to have a pet scan to see if the Lymph node was cancerous of just inflamed due to an infection.

The pet scan was arranged for the following week and the results were given to me 3 days later. By this time I had not slept anymore that 4 hours a night since the original diagnosis and was rapidly running out of energy to fight this rubbish. Well, My wife and I along with my Cancer nurse met with my consultant with a little hope in our hearts that it was going to be good news. It wasn't, it was for me bad news. The Lobectomy was cancelled because the pet scan had showed the cancer had spread the the one initial Lymph node but also to more Lymph nodes in my chest region and they were showing warm to hot. The next decision was to decide how they were going to biopsy these to check if they were indeed cancer. I had two options, a Mediastynocopy or an Endoscopic Ultrasound with Fine Needle Aspiration for which I would have a round trip of about 100 miles. The decision was made for me to see the surgeon to discuss the option of having the Mediastynoscopy and because the procedure could be done the once because of scar tissue he was reluctant to do it at this time. It was decided that I would start a course of Chemotherapy in order to reduce the staging that I was at in order for me to go back to the original plan of having the Lobectomy.

So, today, I decided I would do this blog, and as I started it the phone rang, and it was the hospital asking me to go in next Tuesday 7th for a Ultrasound needle biopsy of my neck. MY Neck????? Having just put the phone down it rang again, and it was my cancer nurse, wanting to let me know that following the MDT meeting last night more concern was shown towards a couple more Lymph nodes in my neck and collar bone area. They needed to biopsy them as they appeared small and new.

At least now I have my date for seeing the Onclogy Consultant which is 20th april and my chemo starts the next day 21st. , well thats the plan anyway. 12 weeks later another pet scan hopefully showing the Lymph nodes have shrunk in size and I can have the Lobectomy.

Well had an ultra sound on my neck today as the cancer has spread to some Lymph nodes there as well, and they took a needle biopsy of another enlarged lymph node for testing before my chemo starts. Just in case they need to change their minds :( and approach it a different way. All in all not a good day.

I saw my oncology consultant today and was due to start my chemotherapy tomorrow. She dropped a real bomb shell on Jan and me. My Lung cancer has spread to outside my chest and into my Lymph nodes so has become Stage 3 cancer making it all inoperable.

I am going to start my Chemotherapy tomorrow although it seems pretty pointless, I guess it may ease the symptoms for a while. However if I find the side affects to bad I will stop it, and well see what happens.

All in all a very very bad sad day.

My Journey has started.

Are there any NHS health professionas who care?

My Journey into hell has become a nightmare