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Wednesday, 5 March 2014

Trying to keep up!

I'm aware that changes to our situation are occurring in rapid succession, and that a number of our friends rely on my blog for information on Suzie's progress, so I will try to summarise the last few days and bring you all up to date.
I can't believe my last blog entry was only four days ago as there seems to be so much to share since I wrote that! After I'd left that night Suzie was particularly poorly and anxious, and by the time I arrived the next morning she was exhausted and extremely fretful. She was pretty much 'out of it' most of the day, except when she had to endure the very unpleasant procedure of having a nasal-gastric tube inserted in order to drain her digestive system. The nurse carefully inserted the tube into Suzie's nose and, with a little bit of prompting from me, Suzie managed to swallow at all the right times, and it was successfully put in place and doing its job.
At this point Suzie was still on a drip and IV antibiotics, in addition to oxygen, so having yet another tube connected to her was very difficult for her to deal with. She looked and felt so very ill, and when she did manage to regain some degree of awareness, she was very disturbed by what was happening to her, and kept asking me if she was going to die. It broke my heart as I tried to try to answer that question as reassuringly as I could, but with sufficient honesty to allow her to express the fears that she needed to share. Only 24 hours after the conversation I'd had with the nurses the previous evening, that night it was agreed by all, not least Suzie and myself, that I should stay with her overnight. 
The following morning it was noted by all of the staff involved how much better Suzie had settled with me being right next to her, and it soon became clear that we'd made the right decision. I have to say, it was equally beneficial for me. So this has become my home ever since, and I am being made to feel very well cared for and supported by all of the staff. They are all being extremely kind, without exception, and I'm being offered everything I need, and more besides, including use of shower facilities, access to the hot chocolate machine, and more food than I could ever eat!!
We have had a long chat with the Oncologist who has made the decision to discontinue any further chemotherapy. It is just too much for Suzie's frail body to cope with, added to which her blood test results indicate that it wasn't even having any effect on the cancer anyway. The Palliative Care team are now involved and they are ensuring the best possible management of Suzie's symptoms.
Yesterday the IV antibiotics were discontinued, and today there seems to be some good indications that the infection has been eradicated. Suzie has also now had her gastric drain removed and she is able to have nutrient drinks, soup, and a few mouthfuls of jelly and ice cream. As long as I can keep her fluid levels up by encouraging her to drink she will no longer need the drip, which means all tubes have now been removed except for the oxygen and a very fine subcutaneous tube leading from her upper arm to a syringe driver which provides a continuous delivery of her medication. During the course of the last couple of days we have seen some positive signs, so we now wait to see if there is any improvement in her symptoms now that the infection and the chemotherapy have been removed from the equation. There is still an unresolved issue with Suzie's breathing due to a build up of secretions in her lungs, but this is being monitored and everything is being done to make her as comfortable as possible.
Although much improved from a week ago, Suzie remains very poorly and she isn't going to be strong enough to return home for a little while yet. The Palliative Care team have suggested a stay at Rowcroft Hospice would be beneficial in order to get Suzie's symptoms under control and to prepare a 'Hospice at home' package of care to enable her to be cared for at home when the time is right. Whilst we both deeply desire to be together in our own home, we are also aware that we have reached the stage in Suzie's illness where I need to share the responsibility of her well being with other people who are qualified in ways that I'm not. We have been assured that I will be able to be with her at Rowcroft Hospice in the same way that I am now, and that we will all be able to work together with the team in order to give Suzie the level of care that she needs and, indeed, deserves.
So, that brings us up to date. We feel very much as though we are entering uncharted water, and that the coming days and weeks will take us into new and unfamiliar places. This is more than a little scary, but there is a deep sense of peace in our hearts as we embark on this next stage of our journey. God has already planned our path and He is faithful to lead us and sustain us. We hold fast to His love and we rest in his peace.