I have ordered a better seat for my wheelchair. I think I may be in it for some time.
Today we went to see Michael Bishay, hip surgeon and Mark Beresford, oncologist. I asked them a bunch of questions and I’ll do this in the form of a Q&A.
Michael Bishay, SurgeonQ: When should I stop the aspirin pre op as it thins the blood?
A: Not a worry, you can carry on.
Q: Where is the hole in the femur?
A: It’s around the ‘bend’ at the top of the femur where it turns to the hip joint.
Q: What materials do you use for the replacement?
A: We have to cut out a new socket to match the ball and this is titanium. The pin into the top of the femur is cobalt steel and elsewhere there is some plastic and cement.
Q: What aspects of this operation are unusual?
A: The cancer damage is tricky. I can’t scrape it away as it will get into the system. I have to carefully cut round it and remove it. That’s why it will take twice as long as a straightforward operation.
Q: If you are sticking a pin into the femur what is the risk of it splitting?
A: It’s down to my skill to match it perfectly. I have had these fracture but it is very rare.
Q: Do you think I will take longer to recover than usual?
A: No you will be up the next day. I can see you are motivated. You are a winner; I saw it in your eyes when I met you. I don’t take losers.
Q: My blood CRP count [indicator of blood fighting infection] went up to 200 due to an infection and it is now 120. What level do you need it to be to operate?
A: Normal is zero. I will not operate above 30 as there is a big risk of infection. Also you have had blood cultures done but the results can take up to a week and are not back yet. If you have certain kinds of bacteria I cannot operate as these love inert materials like the titanium. This operation already has a number of risks but that would be unacceptable.
Q: I am due a blood transfusion. Won’t that help the CRP?
A: Yes, to a degree.
Q: How will blood be managed post operation to prevent TIA recurrence?
A: Heparin and aspirin.
Mr. Bishay gave us additional detail and was very clear about things. It was an excellent session and we completed the necessary consents. He is doubtful whether my CRP would drop to the necessary levels by Thursday as it has been falling relatively slowly.
Interestingly he commented that he had performed an operation just like mine on a renal cancer patient 12 years ago who was now back for another hip replacement (wear and tear). I said that Dr. Frim had advised that the longest surviving patient she had had was 5 years. He frowned and said that was too pessimistic but of course it all depends on the aggressiveness of the cancer and a host of other factors. Good news though!
Dr. Mark Beresford, oncologist
A long wait but as ever a good session, if not what we wanted to hear.
Q: What do you think are the chances of my CRP getting to 30?
A: Let’s look at the history. Hmm, it has only been below 30 once since February, a couple of weeks after the operation when it dropped to 10. The nephrectomy was performed at 34 but the kidney surgeons are probably more happy to work at that level due to the nature of their operation.
Q: Looks pretty unlikely then doesn’t it? Why is it so high?
A: Probably because your blood is fighting the cancer. It has been as high as 200 even when you didn’t have an infection.
Q: Dr. Jenkin in Medical Short Stay said I should have a blood transfusion. Who will organise that?
A: Yes it is on the fax I saw from her this morning. I will book it in but it often takes a week as they are busy. I will try to see if it can be done before the operation but of course if it can’t be that reduces the chances of getting the bloods right.
Q: So what happens if we cancel the operation?
A: We will need to find another date once the level is acceptable. I will talk to Mr. Bishay to see if he might go higher [he was very firm when we saw him]. We will need to give radiotherapy again three weeks prior to the operation. If the level does not fall we could look at further radiation and see what effect the Sutent is having. I will give you Sutent now to take home and if the operation is cancelled, as looks likely, I will telephone you and we will start you on it again.
Q: Mr. Phull, the kidney surgeon, said I would be scanned three months after the last. Has he booked it or will you?
A: Yes it looks like late October would be the right time. It’s not booked. I will do it now.
Q: When I go back on the Sutent will my symptoms be the same, worse or better?
A: The same. We can of course cut the dose but then it will be less effective.
Q: It is thought my kidney has been damaged by the Naproxen I was prescribed for the leg pain. Is this likely to be permanent?
A: Given your other problems there may well be continued reduced function but it is OK now.
Q: Since February I have had a slight tightness in my left lung when breathing deeply. Since the infection it has become slightly sharp. Do you think it is because of the infection or an indicator of tumour activity?
A: Well, the lump on your back has virtually gone so that shows the Sutent is working. It is most likely to be infection related but only the scan will show for sure.
Q: I have a sore spot on my throat which seems quite specific. I have assumed it is infection related but am anxious it might be a tumour. Any views?
A: I agree it is most likely temporary but the scan will cover that.
Q: You will appreciate that I am disappointed that my GP did not suspect something when I reported my leg pain. Will you scan my whole body this time?
A: No the radiation dose is too high.
Q: Surely it is better to look for trouble early?
A: You would think so but procedures for that can cause problems of their own. We find it best to react when symptoms are identified.
Q: What should I look for?
A: As you know, bumps and pain really. And of course the scans will pick things up. The Sutent should prevent anything new developing as quickly as your femur problem.
So the bottom line is we feel it unlikely my blood will be good enough for the operation. We will go in anyway on Thursday at 0700 and they will take bloods then to check. I don’t quite see how the CRP is ever going to get down to 30 anytime soon which would mean continued use of the wheelchair. We can only hope that if I start the Sutent again and it continues its work then after the next 4 week cycle it will have dropped to an acceptable range – and maybe Mr. Bishay might raise the permissible level.
We found a new way to get to the hospital
Various very kind neighbours have been very happy to give lifts to the hospital. Today’s visit needed us at there at 10:30 but we thought we might have the blood transfusion as well so might be there all day. Our son was away (back now) and it’s a lot to ask people to wait that long. Our son discovered there is a bus-taxi service which can take us to the hospital. It goes from a stop 5 minutes away. You book two days before then the next day they work out who they are taking and you ring to find the time of arrival. Good system with excellent staff. We had 9:20 to get us there an hour later which was fine. Sadly the bus was half an hour late due to an accident in Bath but we still got there just on the half hour. They are able to take my wheelchair and the driver was very helpful getting me off a high kerb and strapping me in. For the return we booked at reception and had just a half hour wait. This time I opted to take a seat once the chair was in which is easier for everyone. I have paid between £40 and £70 for one way taxi journeys but with our bus pass it is only £8 each return. I do like a bargain! So though we were unlucky this morning (raining too!) this is a great find.
I meant to mention in my last blog that I asked the excellent consultant in the Medical Short Stay ward, the sharply dressed Dr. Gillette, about some small dark streaks in my fingernails. These are just a few mm long and half a dozen had appeared in the previous week. She said that these could indicate a heart problem, but not in my case, and were most frequent in gardeners for some reason.
We will update when we know if the operation is going to happen. As ever thanks for reading (especially this long post) and your support.