Wednesday, 3 October 2012

Frustration today!

I didn't write a blog yesterday, largely because there wasn't much to report. I spent most of the day(except for a short spell at Franklins Gardens watching Northampton Saints training) snoozing and generally had another lazy day.

Today has been different though and I've been back to the hospital for my bone marrow biopsy. I've held off writing until now though as I returned from hospital incredibly frustrated and actually quite angry. Consequently I've had to calm down a bit before I write this.

The bone marrow biopsy went well and was not too painful in the end as it was just the extract of some of my bone marrow from my hip bone using a big needle under a local anaesthetic. Fortunately it didn't involve the very painful removal of a bone section as my first experience of a biopsy had to enable my diagnosis.

Before my biopsy though I saw one of the doctors who told me I needed to go for a blood test to see how things were looking. I duly went down to the phlebotomist and after my biopsy had been carried out (by about 10am) decided to hang on to see the doctor to await the outcome of my blood test.

I finally got to see her about half past twelve and she told me that the blood tests were very borderline as to whether or not I'd be able to recommence my treatment tomorrow. Apparently my Neutrophil count was 0.78 and has to be above 0.75, so was just above where it needed to be. Being so borderline they were unable to commit to starting my next phase of chemotherapy tomorrow.

So I have to go back for another blood test tomorrow and don't know until then whether I'll start tomorrow or not.

On top of that for whatever reason the hospital 'chooses' to start cycles of chemotherapy on a Thursday, which means that the five days of treatment have to be carried out over a weekend. Because the day unit is closed over a weekend this would mean that to receive the treatment intravenously I would have to be admitted to the hospital again.

There is a possible solution in that the drug that I have to take over the weekend can also be injected into my belly, which I know other patients have apparently done, and which I have indicated that I am willing to do. This was discussed with the consultant on Monday before I left but as yet no decision has apparently been made.

So tomorrow I have to leave early in the morning to get to Leicester for 9am for a blood test that will tell me whether or not I am starting treatment or not, which means Andrea has to take me as I don't know whether I'm coming back or not.

I feel so frustrated as it's not just popping round the corner to the hospital - it's a 70 mile round trip, and is disruptive to everyone around me.

I'm also frustrated as there is a way out of me having to go back in hospital for the next four weekends, which I value so much, because a decision can't be made as to whether I can inject the drugs myself or have to have them intravenously.

And finally I'm frustrated because having taken so much care whilst I've been at home to avoid picking up infections, the ward I am staying in has a number of people who have vomiting bugs, diarrhoea and chest infections and I have to share toilet facilities with them, which have often been left soiled. I feel more at risk of picking an infection up in the hospital than I do at home.

Throughout this treatment I have felt well whilst I've seen many around me who do genuinely have a need to be in hospital. I'd rather be at home and let the hospital use its beds for people that need them.

So tomorrow could be an interesting day when I get to see the consultant and I do intend to make my feelings plainly known. I know they have my treatment at the core of their thoughts but I hope they don't lose sight of my own feelings as it is my body and my life they are tinkering with.

Thanks for reading.

1 comment:

  1. I can feel the frustration in what you've written. As often is the way in the NHS to date, services are set up to suit the staff rather than the patient. It probably starts on a Thursday because that was the slot available when they set up this treatment programme. No one has taken the time (they will say they don't have any) or the trouble to evaluate their service programme and make it patient and family friendly. Once the information is to hand it's not difficult to do!

    As for shared facilities, well, my feelings are known on that subject. It is too easy to spread infections and when patients are more vulnerable, every effort must be made to minimise the risk. Single rooms with en suites!

    I hope the next round goes well and you are able to complete the treatment as you wish.



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