Blog 230 finished with extracts from my diary entries for Tuesday, 4th of July 2023. This Blog continues my diary entries from the point where Blog 230 finished.
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Tuesday 4 July 2023 Blog 230’s diary entry finishes this way. [We are both faced by an impossible situation and we both have to make impossible decisions. There is no “correct” decision; we can only do the best we can in the circumstances. My sole wish is to do what I can to ensure her welfare. She says she sees the exhaustion in my face and wants to try and minimise it. I say that her staying up instead of coming back to bed is definitely not the best answer to my exhaustion or hers.] **** The diary entry for the 4th of July 2023 continues. **** Margaret is due to ring Dr Bishnoi later today. We list the things that she needs to tell him. Diarrhoea is still present even though Prednisolone restarted on Friday 30 June. Inability to eat, very cold hands, extreme lack of balance and worsening in the balance issues; increasing pain levels. It is 11.37 am as I type these words. Marg goes for a nap at 2.40 and I go for my walk. Marg has given me her phone so that I can answer if Dr Bishnoi rings while she is asleep. I get back from the walk at 3.50 and Dr Bishnoi rings five minutes later. I tell him what has been happening and ask if there are any medication changes he has to recommend. There are none. I ask if there is anything I can do that might help Margaret a little more. There is nothing. Dr Bishnoi says that perhaps it is time to think about asking Palliative Care to become involved, but stresses he cannot act on this unless Margaret specifically agrees. I am to discuss with Margaret and he will ring back between 10.00 and 11.00 on Thursday 6 July. Margaret wakes at 5.10 and I tell her about the call from Dr Bishnoi. She immediately accepts that it is time for Palliative Care. She accepts without fear, what is to come. She walks straight towards her final gate without any twinge of fear. She tells her sister Maurine and brother Jim. I feel vastly relieved. Margaret takes all of this in with great calmness. She has been expecting it, but says it is unusual for this to happen when the cancer itself is still in remission. She knows her body is getting weaker all the time. We discuss administrative things that we ought to do while she is still alive. I cancel my yoga class scheduled for tomorrow. We watch tv and she keeps falling asleep. She is ready for bed and it is 10.20 pm. It is 11.10 pm before we get to bed. Marg has devised a plan to try and help us get a little more sleep. She takes ½ an Oxycodone with 2 Panadols and I bring the Oxycodone into the bedroom to place it next to Margaret’s bedside lamp. When she wakes up, she plans to take a full Oxycodone without getting out of bed. Hopefully, this will send her straight back to sleep. Wednesday 5 July 2023 Margaret wakes at 1.55 am on Wednesday 5 July. She stays in bed and takes the Oxycodone. I remove the sleeve bandaging from around her legs; they are hurting a lot. We both curl up hoping sleep will take us – but it doesn’t happen. Margaret is in so much pain from the bandages and her legs that while under the sheets, she wrestles the bandages off. I realise what is happening and get up to help her get rid of the bandages. I replace them with simple wrap around bandages and we both curl up once again trying to sleep. By 3.10 am it is clear that Margaret cannot sleep so I turn on the light and help her get out of bed. Our sleep for the night has finished. She is extremely frail as I help her use the walker to go down the passageway to the living room. Fortunately, the papers have already arrived. I give Margaret one of the papers and make breakfast. I start eating breakfast at about 4.00 am. Margaret keeps slumping down asleep with her head on the table. Eventually, we both nap for an hour at about 5.30 – she at the table and me on the sofa. The nurse (Christine) arrives at 9.35 and she is lovely and concerned that Margaret’s legs may have again developed an infection. Christine rings our GP clinic but the GP is not there yet. I send photos of Margaret’s legs to the clinic and the clinic staff promise to bring them to the attention of the GP as soon as possible. Nurse Christine leaves at 10.30 and I have a shower. My chores this morning are to deliver documents to the accountants and get yet more prescriptions filled. It is 12.15 pm before I return home. Margaret has heard nothing from the GP. It is 1.45 as I write these words. I am so exhausted that it is as though I am in a trance or a dream. The tiredness in my body has ceased to mean anything to me. While I am needed, I have the ability to keep going. The hissing is still present, but it has lowered in volume Marg goes to bed for a nap at 2.10. We have still heard nothing from the GP. I ring the GP clinic at 3.20 and book a phone consultation with Margaret at 4.35 pm today. I will wake her if necessary. I wake Margaret up at 4.10 for the phone consultation. GP Saunderson rings at 4.40 and prescribes some sleeping pills plus anti nausea; he is lovely. Because Margaret does not have a smartphone, I have to go to the surgery in peak hour traffic to pick up the prescriptions. I get there and pick up the scripts and get them filled in the pharmacy. I am home by 5.40 pm. I cook dinner but Marg eats very little; her appetite is deserting her. I help Margaret to the toilet for her bowels. defecating causes extreme pain in her back. As we try to watch tv that evening, she keeps slumping into sleep in the chair; she cannot sit in the sofa because her back is such a mess. |
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