After leaving hospital some 3 weeks ago, I expected to be out and about within a few days, albeit with my walking stick.
In the past 10 years I have been an “in patient” some 24 times in our 3 Cambridgeshire hospitals with:-
- Auto-Immune Haemolytic Anaemia (loss of immune system)
- Gall Bladder and Spleen removal
- 2 Stents
- 2 Heart Attacks
- Pneumonia – 3 times
- Sepsis 3 times
- Cancerous Tumour removed from my Colon – 2 hospital stays
- Two recent stays due to residual Colon problems.
The above does not include numerous Day Patient visits for Chemo and Radiotherapy.
So I count myself fortunate to have survived (living a normal and active life) and enjoyed the past 10 years fully supported by my lovely wife, soul mate and rock.
After discharge from hospital, although bed bound and virtually being unable to walk, I expected to be up and about within a week.
I was discharged without a “Care Package” being put in place for my return home. I did not know I needed a “care package”; I was just relieved to be going home.
The first thing that happened on returning home, was that I collapsed just inside the front door and it took 3 of my neighbours to get me into my recliner chair in the lounge a distance of some 5 yards. As I did not have the strength to stand, I remained in my chair for 3 days. Although it is a comfortable chair it was not intended to be sat in 24 hours a day. Three days later my youngest son and youngest grandson with a “borrowed wheelchair” managed with great difficulty to get me into my bedroom and bed.
The following day we rang my GP as I was feeling unwell, She arrived with the surgery paramedic. When she read my hospital discharge letter, she could not contain her anger. She immediately changed my medication and put in place a care package which commenced later in the day.
My Doctor spent almost an our with us to advise and explain that it was unlikely due to my many underlying health problems, that I will not fully recover and was placing me immediately on a “Palliative Care Pathway”. I was diagnosed with Lung Cancer last December (albeit I have no obvious external symptoms) and she also advised no treatment was being considered, as my body would not withstand such treatment.
The Doctor has been my GP for some 20+ years and is a wonderful Doctor, when I asked what was my likely timescale; she said we should “hope for the best but plan for the worst”.
After the Doctor left my wife and I discussed (unemotionally as I think we were both in shock) what had been said our main concern being as how we would tell the family.
Since then there have been many shared tears but we are now settling into my being a bedbound invalid. Albeit I feel and look as fit as a fiddle.
The only problem I have had was eating as I had completely lost my sense of taste, so felt unable to eat, even my favourite meals. If I managed one or two spoonfuls of each meal my wife was delighted. I am pleased to say I have now 3 weeks later regained my taste and my appetite is improving
My Palliative Care Package includes:-
- Carers coming morning and evening to help wash me, turn me and
ensuring the special bed sheet I lay on (which is on top of a “blow up”
mattress) is straight and comfortable and generally ensures I am as
comfortable as possible for the rest of the day. The carers are wonderful,
the majority being foreign nationals.
- Regular District / Community Nurse visits, including 24 hour
emergency call out visits.
- Physiotherapist visits and last but not least visits from my Cancer
Family, friends and neighbours have been beyond excellent in supporting my wife and visiting me, we really are blessed.
I think I have now adjusted to being in bed 24 hours a day; I normally wake up between 7 and 8. Have a cup of tea or hot milk to help me wash down the 14 (yes, 14) tablets I have to take. I then have glass of Hot milk with a small bowl of cereal. Watch TV between 8 and 9, followed by the Carers visit.
I occupy myself as fully as I can, reading the Daily Telegraph and Daily Mail and trying with my wife to complete their crosswords. Using my laptop to keep in touch with family and friends via the usual “Apps”. My TV is a great comfort with today’s many channel options to choose from without getting bored. Long may it last?
My Carers last visit is early evening to settle me down (not lying me down) and ensuring I am as comfortable as possible for the night. Keeping me comfortable 24 hours a day is the greatest challenge for both my wife and the carers. I am at day 19 (15th March) at being housebound and my carers for my morning visit has increased to two carers to make it easier to turn and bed bath me.
Since coming home I have had two disturbed nights. We had to call out the District Nurse at 3am because of a “urinary” problem which was causing excruciating pain. After receiving pain relief and a glass of warm milk the pain disappeared after 2 hours.
My second disturbed night was caused my being woken up at 4am “shaking and shivering and being cold”. My wife dealt with this on her own by giving my body a “towel rub” and a glass of hot milk. This whole episode lasted an hour, so sadly my lovely wife had another disturbed night.
My main concern is the “stress and strain” this places on my dear wife. She does her best to remain cheerful and upbeat in front of me, but her eyes tell me a different story.
The greatest comfort I get is when my wife lays alongside me and we just hold hands for 30 minutes or so, much better than any medicine.
« Back to index | View thread »