Spoke too soon yesterday. I received a call at 3.30am from dad who was complaining about a very painful stomach and aching knee. I cave him some warm water with a coupe of co-codamol pils. He settled down and fell asleep after an hour or so. 

The rest of the day he felt ok. There are no signs of rash or any other adverse side affects from the Tarceva. He seems to be eating more and his sweats have died down. Not sure if that is the Tarceva though as a reduction of his sweats was noticed upon discharge from the hospital where they refused him access to a fan for prolonged period of time. The nurse there was worried about his body temperature dropping, which it did whenever he used the fan to dry the sweat.

I brought my father home from the hospital today and thank god he is feeling a lot better. The problem  with hospitalization is that for some reason the patient feels worse as time goes on. I just hope he starts to eat regularly at home. I’ll wait a day and slowly begin the nutritional program. As he’s now going to live here with me, I can monitor exactly what he has to eat and make sure that the supplements are administered appropriately.

Depending on my fathers health, I am hoping to start Tarceva on Saturday. Between now and then, we have a district nurse visiting every day to administer the 40mg Clexane injections, a member of the Acute response team also visiting to go through some physiotherapy with dad. On Saturday morning the district nurse will remove my fathers staples (knee).

I just hope my father starts to eat more at home.

After yesterdays positive day, dad looked absolutely shattered and weak today. Apparently the nurses had kept him up since 9am and did not allow him to sleep. He had to sit and walk. This was of course to stop any DVT occurring.

The head nurse told me that he needs a lot of encouragement to exercise. She also said that he just about ready to leave the hospital. All they need to do is arrange local support from the social workers.

My fathers surgery was successfully completed today at 3pm. He subsequently received 2 units of blood as his HG levels were 10.1 before the operation.

We managed to see him at 7pm and he was in good spirits. In fact he was in really good spirits. In his happy state he kept singing and saying that he was the king as they had given him his own private room. My wife and I just looked at each other wondering whether he’d finally gone mad. We then realised that the anesthetic may have something to do with it.

The doctors said that is was a success with no complication.

This is such a big relief but we are not out of the danger zone yet. We still have the risk of DVT so the next few weeks are very important.

P.S They gave him his own private room because he was at high risk and needed to be monitored closely.

So get this, on Monday evening my mum receives a phone call from some doctor with regards to dads knee surgery. The person tells my mum that dad can not go ahead with the operation as there is an infection detected in the blood test results taken the week before…..

I’m not going to rant on about how we were messed around for 24 hours, after which we were definitively told that the surgery was postponed only to be told that its going ahead again. Oh I just have…

I managed to check my father into the hospital ward at 5pm. Surgery is due tomorrow at 12pm.

Let’s pray it goes ok.

I managed to obtain all four of dad’s x-ray and ct scans today from the NHS hospital. All on CD for a grand total of £50. I’m a little disappointed at the amount being charged, I mean £5 would have been more appropriate. But hey, we are between a wall and a hard place at the moment so there’s no use arguing.

Next, we zoomed to the Bupa assigned NHS hospital for dad’s pre-assessment. The knee surgery is scheduled for the 10th October only if the anaesthetist gives the go ahead. Alas, as fait dictates, the anaesthetist was not available in person but hopefully we will get a call from him by Friday giving the go ahead.

I have been trying to explain to dad that the real go ahead for the knee operation will come out of the appointment with the oncologist tomorrow. If the oncologist can put up a genuine argument against going ahead with the surgery, we will have to take a u-turn and cancel. Like always my father turns on his selective hearing…

Pray that we are given some hope tomorrow.

Just as you get indecisive when you spend too long shopping in an outlet village, the world of second second opinions is no different.

Today I accompanied my father to a see a Bupa (Private Healthcare) Orthopedic surgeon for yet another opinion on my fathers pending knee operation. When I say pending, the actual date was supposed to be this Saturday the 29th with another private hospital based closer to my fathers house. Suffice to say, based on today’s information we are not going ahead with operation, well not with that particular surgeon and hospital anyway. All of this really depends on the outcome of the London Oncology Clinic appointment which we hope to get soon.

The world of Orthopedics and the measurement risk appears to be akin to holding ones figure in the air. Let me give you a quick rundown on what we have been told so far.

When asked about the risks associated with a total knee replacement surgery on someone of my fathers age, health and special cancer condition, each provided some interesting odds.

Chance of major infection?

NHS = Very high

Private Hospital = High but manageable through medication

Bupa = Normal patients would be 1% in my fathers case 2%

Chance of DVT Deep Vein Thrombosis?

NHS: 1 in 5 chance of pulmonary embolism and death on the operating table

Private Hospital: Management through blood thinning medication. 0.2% chance of death

Bupa: 5% but will be managed through medication and special DVT prevention methods/machines

What about my fathers Anaemia?

NHS: It would be the Anesthetists decision as to whether he/she would take the risk to go ahead with the procedure

Private Hospital: Raise hemoglobin levels through a blood transfusion of approximately 7 units of blood

Bupa: Blood transfusion required to raise hemoglobin levels to at least 10. Pointed out that 7 units was excessive and would result in further complications.
How long will it take my father to recover?

NHS: Up to 6 months

Private Hospital: 6 weeks for complete recovery

Bupa: 2 weeks to walk, up to 3 months to be 100%

To be frank, after this consultation I was rather disappointed to find that a lot of the information provided by the previous private orthopedic surgeon was contradicted by the Bupa surgeon. The Bupa surgeon made it clear that he would not operate on my father at the Bupa hospital, instead he would opt to operate ‘privately’ at the NHS hospital where he would have all the necessary experts at hand should complications arise. The private orthopedic surgeon had told as that it was ok to operate at the private hospital. The Bupa surgeon also said that the risks would be higher still if my father had gone through a round of chemotherapy prior to surgery. He suggested that my father could possibly begin chemotherapy approximately two weeks after surgery if required.

My father agrees that judging by the conflicting information it is wise to opt out and cancel the operation scheduled for this Saturday. Instead we will tentatively book with Bupa and ask the London Oncology Clinic whether it is wise to go ahead with this.

I have finally received both referral letters from my fathers GP.

One is to arrange a second, second opinion from another Orthopaedic surgeon, this time from Bupa.

The other referral is more importantly for the London Oncology Clinic. Hopefully they will see us soon.

After reading some of the advise from Dr. West and also some responses from the cancerforum.net site I am convinced that we shouldn’t go ahead with the knee op.

I’ll talk to my father this weekend.

I have posted a little request for more information on www.cancerforums.net. I have been very grateful for the replies received.

Please check out the post http://cancerforums.net/about7167.html

After an anxious wait of 10 days, the PET scan results were finally revealed to us yesterday.

Now you would think, the results would have been revealed to us from someone we knew, such as the lung specialists or the respiratory nurse, or even an Oncologist (if we had one). Nope, not this time, as usually the lack of compassion, empathy and experience showed it’s ugly face again.

The plan for the day was to visit my fathers GP to go over the blood test results that were taken two days before. Then we were to attend an appointment with a private Orthopedic surgeon to discuss the possibility of replacing my fathers knee privately. The last call on our schedule was to visit the hospital and speak to the lung specialty with regards to the PET scan results.

In reality, expecting to see my fathers GP of 15 years, we instead were seen by a new part-time GP. Expecting to go over the blood results, we were told that the PET scan results had been received via fax that morning from the hospital.

After trying to convince the GP not to give the results out as we had an appointment with the lung specialist in the afternoon, the GP pronounced it was my fathers decision and if my father asked for them he was obliged to reveal them.

The results were not good, the cancer had spread and there is no possibility of radical radiotherapy or surgery.

We spent 20 minutes consoling my father, I tried to re-iterate that these results didn’t really matter as the risks verses benefits of the offered Radiotherapy procedure meant we were not going down that route anyway. This was just another knock out punch, something I promised myself would not happen, I wanted to protect my my fathers already very fragile mental state. The GP then said that the only thing they can do is address each symptom as it occurs and make my fathers last days as comfortable as possible.

I then asked about the blood results, the doctor saw that the hemoglobin levels had dropped to 7.9. He advised that a blood transfusion was needed as it has dropped below 8. He made the necessary phone calls and I was asked to call back on Monday.

Our next port of call was the Orthopedic surgeon.