We've not written anything for a while. Life has been hectic and not altogether pleasant.
David was admitted to the Macmillan Unit on Monday 4th August. It wasn't a planned event, more that David's symptoms became more and more unmanageable. Prior to his admittance David had been almost self sufficient in that he could make himself something to eat, he could walk around a little and he could wash/dress relatively easily. He was finding it more difficult to concentrate for any length of time and his ability to think deeply on any level was hindered. Finding out that David had to be admitted was distressing for me, but it was something I accepted as all I wanted was for him to get the help he needed and to get his symptoms under control.
David's bed was in a 3 bed bay, although the place wasn't modern, it was clean and tidy and the Nurses were kind and professional. Whilst you often hear in the newspapers of dreadful stories of nursing in the NHS whilst David was in hospital we only saw goodness, patience, kindness and capability.
David was most distressed at being admitted to the unit. He was frightened and concerned that he wouldn't ever come home. He really felt that now he was being admitted he would be there until his ultimate demise. It took a great deal of time and patience explaining to him that he would come home, that he would see his family again and that it wasn't his time yet. All David wanted was for me to be with him all day. It was soul wrenching having to leave for any length of time. Indeed I would normally get to the hospital around noon, then leave for only an hour or two to get something to eat myself around dinner time and then return again to stay with him until 10pm at night.
Sadly on David's second night in hospital the gentleman in the bed opposite him passed away and you can perhaps imagine how upsetting this was to David. It was like a grim view into the future - it was deeply disturbing and profoundly sad.
What was perhaps even more sad was that no sooner had the bed been vacated then within hours it was full again, with yet another poor soul suffering, in pain, unable to walk, catheterised etc, etc.
A major aim of David's admittance was to get his nausea and vomiting under control. As David had been feeling (and indeed being) sick he had lost more weight due to the fact that he was no longer eating. The more weight he loses the more strength he loses.
Cancer does many nasty things to the body, one of which is destroying the body's ability to process food. It takes away the body's ability to absorb nutrients from food. It takes away the enjoyment of food. I have found this aspect particularly hard to deal with. David has always enjoyed his food enormously and to see him struggling to eat is very painful indeed. Whilst the hospital try and provide food that is both nutritious and varied, unfortunately David didn't like much of what he was given and as such didn't each much. He managed to eat some soups and a small desert of ice cream most days but very rarely did he actually manage to eat a main meal.
As David was neither eating or drinking he became very dehydrated which made him feel very confused. He had also become very anaemic again and he ended up having to have another 3 blood transfusions. These gave him an immediate boost but the effects seemed quite short lived. His blood pressure was very variable. When standing up, his blood pressure plummeted which made him feel very dizzy then it would normalise on sitting or lying back down. Sometimes the blood pressure was high due to the pain he was experiencing, other times it was completely normal. All these things were factors which were being addressed by the doctors and nurses.
Throughout his time in the unit his medications were being tweaked - upping one drug here, reducing one drug there all in an effort to get David's pain under control, to reduce his nausea and vomitting, to reduce the nerve pain, to help him sleep and to help get his anxiety under control. This in itself caused David a lot of upset as he was constantly a little confused as to what was happening. Finally we managed to get the doctors to write down exactly what he was taking and when - as he could see it written down, he could understand a little more what was happening. This enabled him to feel a little more in control.
Finally just over a week and a half later David was able to be discharged from the hospital late on Thursday 14th August. He was happy to be coming home but very anxious about being at home and away from immediate help from the doctors. When he came home he still had a syringe driver in his arm pumping away small doses of a drug for nausea 24 hours a day. Initially the doctors and nurses thought that this might be taken out after a week, but at the time of writing, he still has it in his arm and the District Nurses are still coming in on a daily basis to change the drugs over and check the site of the needle.
We're both delighted that David is home, but it hasn't been without it's trials and tribulations. Before he was able to be released home the nurses had to be happy that he had sufficient adaptations at home to ensure he was comfortable - these included special pressure cushions for him to sit on, a raised loo seat, a special electric air mattress to prevent bed sores and a special bath seat. The air mattress is quite noisy but it has made it so much easier for David to get a comfortable nights sleep which is quite a blessing. Unfortunately he already has a few pressure sores, but we manage with these, keeping them clean and putting special cream on them.
David does now get very breathless and this is extremely frightening for him. The breathlessness comes both whilst he is sitting still and also when he's walking around. As he can barely walk now, he has a wheelchair for when he goes out. Since coming home though, he hasn't really been well enough to go any where, being confined to the house. Quite whether we will ever get out far again will depend I guess on a daily basis as to how he is feeling and how comfortable he is.
For the time being, I just have to be patient and do as much as I can to help David feel well and to help him get around.
