A visit to the Orthopaedic Clinic at Bath yesterday turned into the best part of the day.
The oncologist Dr. Beresford had said he’d refer my case to an orthopaedic surgeon to review the risk relating to my right leg. He does not hang about. The next day I got a call asking us to attend Mr. Harvinder Sandhu’s orthopaedic clinic, which we duly did.
Mr. Sandhu is very experienced in hip work and complex surgery. After filling himself in on my history and reviewing my now extensive image library he said “My colleague Mr. Bishay is operating this weekend and I want to get you on to his list to operate on your hip.” He explained that the hole is towards the top of my femur (not the hip as I’d thought) close to the hip socket, which makes it a bit tricky. I then explained that I had just finished my first week of Sutent which was my first actual therapy against the cancer that is causing all this trouble. We discussed that Dr. Beresford had talked of waiting until the first four week cycle is completed so we have a good dose of Sutent under the belt, hopefully working against the cancer.
He took that on board and went off to talk to Dr. Beresford. On the one hand he is keen to operate as a fracture would be both painful and debilitating because my immune system is lowered due to the Sutent. On the other hand my bones are pretty strong, my weight OK and the leg is not in immediate danger.
Mr. Sandhu then returned with Mr. Bishay and they agreed that if I took care it would be best to delay the operation – which they have now scheduled for 8th October. Two weeks before that they will give me radiotherapy on the leg which will apparently assist the recovery process – though I’ll need the two weeks for the leg to recover from the ‘scorching’. I’ll then be off the Sutent for about a month.
We talked about how to mitigate the risk of breaking the bone in the meantime, which comes down to avoiding shock loads and twists. I’d already bought a wheelchair to avoid the pain of walking about so that was good, and a physiotherapist now issued me with a set of crutches and advice on their use. I was advised to stop driving because of the risk from shock load when braking. So for the next 5 weeks I have got to try to get about the house with only ‘eggshell’ pressure on the right leg. We have gone one night like that now and it is pretty tedious as you may imagine, but we have a good wide staircase and I am lucky enough to have a wonderful wife who can push me about (in a good way!) and help me when I can’t manage.
Although I was pretty knocked back by the idea of a further operation so soon, particularly when Mr. Bishay talked of an epidural, I was reconciled when he explained that a lumbar epidural is easier to do, so I have less risk of the bad experience I had last time; and also that he expects me to be up and walking a little the day after the operation – so recovery times are quite quick. Exactly what kind of op he’ll carry out will be decided later; I suppose the hole may grow or shrink in the coming weeks depending on the efficacy of the Sutent.
The drain kings decide I’m a little bleeder of a subject
Leg sorted, we decided to chance our arm with the Respiratory Ward. We have been having mixed results with home draining of the right lung. On the one hand fluid volumes have been steadily diminishing (1200, 600, 250, 50) and becoming clearer. On the other my dressing keeps filling with blood.
At first both we and the lung team thought that this was a consequence of pleural fluid taking the path of least resistance. I was enjoined to drain more frequently but because of a problem with bottle supply had not done that. In any case volumes were down, so what gives?
On Thursday night the dressing was again showing blood, having been clear for the previous 24hrs, and after draining very little. It looked OK in the morning but was clearly building up by the time we got to the Respiratory Ward. They directed us round the corner to Outpatients and the nurse there kindly said that Dr. Walters would be back at 2pm and she would ask him then if he could take a look.
It was now lunchtime so we went to the restaurant. As I sat at the table I realised that the wound was now weeping down my stomach so asked my wife to get me some napkins. Stuffing them under my shirt I saw another diner eyeing me curiously. I think she thought I was nicking them but then she looked decidedly pale when she spotted the red stuff. I rapidly buttoned up.
After a quick bite we repaired back to Outpatients and begged some bigger dressings to mop up. A nurse kindly took us to a consulting room and helped. A little later Dr. Masani, who had installed the drain, came along and took a look.
He confessed to being extremely puzzled. Basically the exit hole where the plastic drain pipe comes out of the skin is on a slow bleed. The volume is small but persistent – it does not clot. It is now apparent that this is simply a wound that won’t heal, not part of the effusion business. He and Dr. Walters have put in over 100 of these permanent Pleurx drains and it is the first time this has happened.
Dr. Masani got Dr. Walters in for a look, and he was equally surprised. They gave both my lungs an ultrasound check and neither shows any significant fluid, which is good. I’ve had plenty of blood tests over the months and my clotting has always been OK, so what could be the cause?
It seems I am the first patient of theirs to be taking both Clopidogrel and Sutent. The Clopidogrel was prescribed after my TIA and helps to stop platelets forming, so it’s an obvious culprit. But I was taking it when Dr. Masani put in the drain, and he was happy that the incision had stopped bleeding then. So what’s changed? Maybe it is the Sutent, which I started a couple of days later. I don’t believe it is known to reduce clotting but perhaps there is some kind of interaction between the two. Again there was a consultation with the oncologist Dr. Beresford (fortunately available) and it was agreed I should come off the Clopidogrel straight away. They also did a further blood test and Dr. Masani warned me that if there was a problem with my platelets I may have to stop the Sutent. As I understand it if this little wound can’t clot then presumably it’s just too big a risk as in the event of a larger wound (such as a possible fracture) then things could get quite difficult.
Today is my first day without a dose of Clopidogrel and I don’t know how long it will take to flush out of the system. They gave us a bunch of extra dressings and this morning the drain wound was full again and had to be changed. We go back on Tuesday to the clinic. At least this time we will be expected so I won’t need to feel so bad at hijacking the Drain Kings’ clinic for about an hour like we did yesterday!
I feel extraordinarily lucky to have great input from no less than five top consultants yesterday who were all keen to help and help quickly despite being very busy. Another vote of confidence for the team at RUH Bath.
Today we attended Respiratory Outpatients to discuss progress with the weeping lung drain wound. After our visit on Friday I stopped the Clopidogrel blood thinning agent as discussed. The next morning the wound was still bloody, but it has been dry thereafter. Apparently the Clopidogrel takes about a week to clear out – it stops platelets clotting and they stay that way until they are replaced as your blood is refreshed. (Something like that!).
Dr. Masani was ill so we saw James Walters. Ultrasound showed some remaining fluid in the lung though nothing would drain. He believes the fluid is brachiated but connected rather than in isolated pockets, so should flow out. He back flushed the drain with 30ml of saline solution in case it was clogged. This went in easily enough but would not come out.
A possibility is to inject a blood thinning agent into the lung to break up the clots, but in view of the earlier problem he is reluctant to do that, especially as I am not particularly breathless. We will visit again in about a week to review, and in the meantime he will talk to the TIA doctor about whether I should stay off the Clopidogrel long term.
The Sutent side effects seem to be gradually catching up. I had severe diahorrea on Saturday night though this was stopped in its tracks by Loperimode which seems to work by Immodium. I.e. it does not really solve the problem but corks you up for a bit.
On Monday I was feeling very listless with no appetite. I took a Doperimode which I had been prescribed for nausea/vomiting and this perked me up no end, so it is good to have that to hand.
Using the crutches and wheelchair to get around the house etc. is a pain as you may imagine and means there is much I cannot do for myself, but my wife is wonderfully patient. Going up the stairs I get particularly out of breath. It’s not shortness of breath as in fluid in the lungs, just out of breath. I was slightly puzzled by this but Dr. Walters says my general lung capacity is probably reduced by the thickening of the pleura so that could account for it. My old problem of an easily inflamed right shoulder has inevitably returned with the need to place a lot of weight on it to keep the right leg from taking load, but I am gradually getting more nimble with the crutches and chair.