J: I can feel it in my bones

Quite a lot of flaffing about the last few days but with some progress. Highlights: lung drainage now taking place on DIY basis; chemotherapy not causing too many problems; bone scan reveals deterioration of hip.

The Lung

When I was discharged from hospital I was a little concerned that we were being sent home with only 2 x 500ml Pleurx bottles for drainage. Three bottles had been brought up to the ward, but a one litre one had been used by the respiratory nurse who drained me before my discharge.

I was assured that a district nurse (DN) would visit on Friday to drain, give final training to my wife so we could DIY, and bring more.

On Thursday when undressing for bed I noticed a lot of blood in my dressing. I could not figure out why since it had been fine that morning. I remembered I had sneezed twice which had been quite painful (I picked up a little cold in the ward I think) and wondered if this had burst the stitches. It seemed to be settled and not leaking so I went to bed lying on my back and planning to resolve if with the DN the next day.

I got up at 1am to top up on painkillers and all was fine. At 6am I felt it was sticky and found quite a lot of blood over the sheets. What to do? I was sure the DN wasn’t about to rush out but I didn’t want to go up to our local A&E. We don’t keep big dressings like this job needed. Fortunately we live next to a care home so I popped in there and asked the duty nurse to apply an additional dressing to keep the red stuff in which she kindly did.

I had no contact details for the DN, but figured the home would, and they kindly phoned and left a message asking them to get to me asap. When I got home I left a follow up message with my contact details. This was all before their switchboard opened at 08:30.

Come lunch time we had heard nothing and I was getting concerned enough to want to plan a back up. So I rang my local surgery to see if they had a nurse on duty that afternoon who could re-dress the wound, and whether they had a direct line to the DN; they didn’t, just the same as me. The surgery were unsure whether they could help but said they’d call back.

In the meantime the wound was dripping again and we put some towel on it and tied a bit of bedsheet round which got most of it. It didn’t seem to be just blood – more like the usual effusion mix. I guess if the fluid is building up in your lung it will take the path of least resistance. Usually the only choice is for it to push back the lung, but if another outlet is available when the lung fills as you breathe that is going to squeeze the effusion fluid out of the available hole.

After lunch the surgery rang to say they had repeatedly called the DN number and eventually got a live person who had said they would definitely be with us by 5pm. That was a great relief as I needed draining too. I was very glad the surgery had taken that initiative – they are a good bunch.

At about 4pm a DN Zoë Tomala called. She removed the dressing and we could see that the weep was from the exit wound of the drainage tube, not the tube itself, nor the point of intubation, which was odd. So the fluid must have also pushed alongside the drain tube to get to that point. But the stitches were fine and it looked like it was no longer bleeding.

We then took off 1.2L of fluid, leaving us with no bottles. If you are curious about how this drainage business works there is quite a good (not grisly but with annoying American schoolmarm voiceover) video here which runs for 12 minutes – skip the cheesy intro:

It turned out that Zoë had not been due to come at all, and it was only the proactive messages from the care home, me and the Surgery that got her to us. The Care Request from the hospital only specified to come on the following Tuesday to remove stiches and drain, then the following Friday to drain again. No way could we have waited that long.

I asked Zoë when she could get more bottles – they had none in stock. As we had a Bank Holiday should some not get ordered pronto before end of business? It was already too late. So she rang the Respiratory Ward and asked them if they could give us some – I’d offered to drive in to get them. She got short shrift from the duty nurse who said they should already have ordered them, but she persisted and asked the nurse to talk to Drs. Masani or Walters and explain who it was for. After a few minutes the nurse said that Dr. Masani had agreed to make three bottles available but he was very unhappy about it. We picked them up the next day, Saturday. None of this was poor Zoë’s fault and is just another example of typical NHSnafu where the front line staff are doing their best but there is bad communication. Also another example of where a proactive patient like me is well enough and smart enough to see these potential problems, not quite trust the system and stir the pot a bit. A more passive patient would have ended up with no DN visit, no bottles and having to back to A&E over a bank holiday weekend.

Another NHSnafu example is with my discharge letter which came on the Saturday. Quite prompt after my Wednesday discharge. But it was the wrong one. Just a copy of my discharge from February! Should I do nothing? No. My GP needs to know what has happened and will have had the same letter. Will my GP, staff actually read it and realise? I don’t know and certainly can’t rely on that. So I left a message for the surgery secretary who later called to confirm they had the right one (electronically) which was a relief.

On Monday night we got another surprise when the dressing showed full of blood again. The next morning we left a message for the District Nurse who called and said we should speak to the respiratory ward. We did that and as it was not leaking waited until a Macmillan Lung Nurse Ros Goldsmith called back at the end of the day. She said that she and Dr. Walters thought the leakage was due to an excess of fluid and we should drain daily. Of course we have been avoiding that due to the risk of running out of bottles but as more should be with us by Thursday we then went to drain: only 250mm? Wossup? And a lot of air bubbles too – we left it going for several minutes. No pain, just a puzzle.

Chemotherapy

I don’t seem to be suffering too much from the side effects of the Sutent for the cancer. A bit of metallic taste and tiredness (though that could be the persistent leg pain). And doses of the trots but nothing too difficult. When I spoke to Dr. Beresford today (qv) he agreed I should not take the additional drugs for that if I could cope without.

The leg

I had been fretting about the bone scan, in terms of who would own it, but needlessly as it turned out. Dr. Beresford called in the afternoon to say that it shows some deterioration of the hip and maybe femur if I understood correctly. I asked if that was a bad sign in terms of the general advance of the cancer and he said that was not particularly the case. However he is concerned about a possible fracture or break of the bone which would be bad news. Apparently the bone scanner is not very good at determining the strength of the bone and good old X ray is best at that, so we agreed that I’ll pop into Bath tomorrow for one.

This also explains why the pain killers have not been all that great – apparently you need something stronger for bones.

If the bone is not too bad it can be treated with radiotherapy quite well. But it if needs a metal pin then that would be a drag as I’d have to come off the chemo. We’ll see once Dr. Beresford has looked at the X ray. Meanwhile my wife is restraining me from ordering an electric chariot so I can join the hordes who wreak havoc on our pavements.

Finally you may notice I’ve added a new page, rather than post, to celebrate my invention of the Tumometer!

Thanks for reading. Your support means a lot to me.

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