Not The Best News

Alfie was quite insistent that he was going to be taken out for an early-morning walk. I got up as usual and he was sitting on the sofa watching me like a hawk, following me around the house, staring  at me and it was quite clear what his game was. He wouldn't let me off the hook, so I had no real choice but to put on my jacket and shoes and then connect his lead to his harness and then go out the front door. I haven't been on a long walk since my heart attack, so I walked relatively slowly as I did have a vague feeling of an angina attack, but nothing more. I even took my mobile with me, just in case. Eaglestone Park is beginning to show real signs of autumn. I also had my G.T.N. spray in my jacket pocket.

I had to do some shopping early, so I went to Sainsbury's, going at around 8.40 and avoiding traffic as well as dawdling shoppers which you tend to get on a Saturday morning. A few items as I'm having to make myself a meal of some sort with Carol in hospital at the moment. A few odds-and-ends to stock up on, those things that having a bit of running out when you least expect it.

Once I'd returned home I put the food items away, some in the fridge, as I didn't fancy the idea of them sitting in the back of the car when I parked at the hospital. It was around 10 o'clock when I eventually drove into the hospital campus and drove around to the ground-level carpark near Cardiology. I think we're becoming extremely familiar with the layout of the hospital of the last year or so and I've discovered where exactly Ward 2 is in relation to, say, the Macmillan unit as well as Oncology and Cardiology (which is handily just opposite Oncology.) You can see the windows of the ward as you walk through the courtyard on your way through and Ward 22, where Carol was a couple of weeks ago, can be seen through the window of Ward 2.

Carol had a visit from Doctor Saka, the cancer consultant with whom she was supposed to have had an appointment yesterday morning (Friday.) Unfortunately I wasn't with her when he came to the ward. We've now learned that the tumour has increased in size unfortunately, as shown on the recent scans. The plan is for her to have 6 months of more chemotherapy, but a more intense treatment which will leave her with no hair as well as possibly making her feel quite sick. Not something we are looking forward to. We were expecting her to have radiotherapy at the Churchill Hospital in Oxford, but none of this can be started until the pain she is experiencing is under control. But we know we can get through this, however difficult it turns out to be. Me having my recent heart attack hasn't exactly helped matters. I am feeling fine, apart from the occasionally twinge. I have become very aware of my heart-rate when I'm lying down and I can feel quite nauseous at times, which is as a result of the medication, also, feeling a little bit light-headed, but all in all I'm not feeling too bad, perhaps getting tired easily, but if I rest it makes things easier. Just something I have to live with, and, anyway, I went through similar things after my first heart attack in 2006.

Ward 2 is a short-stay ward. During the afternoon Carol was asked if she would like to move to a side-room? Her answer was that she would love to get away from the noise of the ward. There are a couple of elderly ladies who make a lot of noise in the night, and one was moved to a side-room because of this. So we bundled up all her belongings and a porter trended her off up the corridor. It's  Ward 20, which is opposite the first ward she was on last year, Ward 20, and just above the Macmillan unit and extremely handy for me coming in to park near the Cardiology department so that should make things easier. 

Carol Discharged From Hospital . . . At Last!

Yet another hot and uncomfortable day. The weather is becoming somewhat monotonous, to say the least.

I've been attempting to sort out the tenancy agreement we have with our landlord to give to the Housing Benefit department at Milton Keynes Council. I have sent them an email, as I thought I'd attempt another tactic. Several years ago we had problems with the gas boiler in this house. We attempted to ring the landlord, but we couldn't get through. We then went through the council, because it would be obvious that they would have his details because of paying Council Tax and one thing and another. It worked and we eventually got the boiler replaced. So I thought of using this again and wrote the email and sent it. I even rang and got through quite quickly, considering how long it can take. I was then told, after explaining all about how they'd contacted the man over the boiler I was told, rather annoyingly, that they couldn't do that, 'because of data protection.' So, this  is because of the confounded new E.U. legislation called the General Data Protection Regulations 2018, which came into force in May. We're back were we started. I have left a message on our landlord's voicemail, but no response seems to be forthcoming. Where is the man? Does he not realise that this is important? It's not just us that need the paperwork to finish the Housing Benefit claim. He won't get his rent paid without it etc etc etc.

We spent a long day on the ward. We knew at some point Carol would eventually be discharged, but when, we couldn't say.

At 11.40 Carol had an appointment in the Macmillan Unit with Doctor Saka, the Lead Cancer consultant. Carol was taken down in a wheelchair by a porter. It's not far from Ward 22, but she clearly couldn't walk that far so it was best to be taken in a wheelchair. We have to wait a long time in the waiting area. They never seem to run to time in these units. Perhaps they don't give enough time for consultations, there's a lot to discuss. Eventually Carol's name is called and we go into the office of Dr Saka. It's the main man, not one of his minions. He asks Carol questions, about why she has been in hospital for four weeks. He came to Ward 1 when she was there, but didn't know she was on Ward 22. It seems as if there's a communication problem. Why wasn't he informed? This seems to be a problem with some N.H.S. departments, a lack of joined-up care you might say. He spends ages looking at the scanned imaged that came from the various scans Carol has had over the past few weeks and months, the M.R.I. and C.T. scans. We sit in silence. It's quite scary. We wait with baited breath. We're here to hopefully find out what the plan is for Carol's care. We are told that the liver and bowel cancer has been shrunk considerably by the chemotherapy, but they've found some cancer in her bones. It's a bit of a blow. How will all this be treated? He tells us that he will make a report and contact the cancer unit at the Churchill Hospital in Oxford and they will make some sort of decision. We feel we're no further forward. We haven't had the answers we need. The heat and the fact Carol's been ill and in hospital for near enough five weeks is really telling. We leave the consolation room and go back to the reception desk to make an appointment for four weeks hence and then the porter comes and Carol goes back to Ward 22.

Carol has quite a few visits from people different from N.H.S. departments at the hospital, the nurse about the stoma; someone from ophthalmology. The lady came with various lenses and glasses for Carol to try to help make reading easier for her because she's having problems with her eyes. A rather weird sort of pair of glasses with double lenses which had a knurled device on their frame which helps them focus a sort of domed glass magnifying glass that you move across a page of text, another which was a   squarish magnifying glass on a handle. Carol didn't get on with the strange glasses, which made me think of the sort of specs that someone who does close work, like a clock-maker might use. Or the character of Professor Brainstawn from the books I was read when I was at school and later read myself. He had around five pairs of glasses which were perched on the top of his head and he was always loosing.  written by the author Norman Hunter and Illustrated by W. Heath Robinson. In the end Carol chose the magnifying glass with the handle because she found the strange glasses to complicated. She will have an eye test so she can have proper prescription glasses. Then another lady arrived, from the diabetes team. She bought a bloodsugar testing monitor so that Carol can do the necessary blood tests to keep on top of her levels. We were looking into buying a new one, so, with this model, together with the lancets which go in a separate gadget to prick her finger, that's a definite saving. She also gave us a list to take to our doctor so all these bits and pieces which need replacing can be re-ordered on prescription because at the moment we have to pay for all these things. Hopefully, Lloyd's in Sainsbury's will be supplying all of this when the time comes for a repeat prescription.

Around 2.30 Carol eventually went to have the P.I.C.C. line put in. A nurse came to take her down, walking there, not in a wheelchair with a porter. It's not far to the scanning department. I had to wait in the waiting area, as you'd expect. The whole procedure took around an hour. After which we returned to the ward.

Carol had ordered supper (do they call it supper, dinner or tea in hospital? Whatever it's called, her evening meal.) It came around 5 o'clock. I could make myself a meal of some sort when I got home, go and get fish and chips or cook one of the individual meals I'd bought in Morrisons's a couple of days ago. She had a baked potato and baked beans. It would mean that she wouldn't want a meal when we eventually got home.

Someone arrived from the pharmacy department with all the medications that Carol would need when she got home. A couple of large carrier bags full of stuff together with all the bits and pieces needed by the community nurse who would be coming each day to give Carol the antibiotics. That is what P.I.C.C. line is for.

The nurse in charge had done the relevant paperwork, the discharge stuff, the official paperwork which gave a description in clear language of why carol had been in hospital, together with a couple of pages of all the medication she as being sent home with. We had to go through it all and check it off. All I can say is, thank goodness for the N.H.S. and the fact that we don't have to pay for any of this as it would cost us a considerable amount of money.

Nearly 6 o'clock and by this time I'd taken one load of things out to the car. Several carrier bags which would make the final exit a good deal easier. One of the nurse came and pushed Carol in the wheelchair out down in the lift and out through the double doors where the ambulances pick up and drop of patents. This is where we got on the ambulance which took Carol and I to the Churchill Hospital in Oxford all those months ago, before she had her chemotherapy, and was so uncomfortable, basically because the driver drove so fast and it was just plain unpleasant.

The nurse got Carol as far as she could in the wheelchair. The road surface going the rest of the way to the carpark is far too uneven for a wheelchair, so I went to fetch the car and drove it back to the ambulance entrance so that Carol could get in and the rest of the luggage put in the boot of the car. So, she was at last discharged and we drove home. Alfie was excited to greet Carol when we got in the house, having unloaded the car. I think she was glad to be able to sleep in her bed for the night. By the time we got home it was gone 7 o'clock but we knew that it was likely to take several hours for Carol's discharge to be completed.

Two Hospital Appointments

Carol was due to have an appointment with the stoma nurse on Thursday morning at around 10.15. We arrived in good time, deciding to walk as the weather was fine. We got to out-patients in plenty of time and Carol signed in at one of the self-service screens. Well, the one that was actually working as sometimes they don't function. We were sent through to the correct area. You get assigned a place nearest where your appointment is booked. There were two staff members on the reception area and there were very few patients waiting. One man near us, filling in a form. Another man in the next area doing the same. Presumably you have to fill in these forms if you are a new patient. Why don't they send them out in the post, or via email (for those who have access to a computer of some sort.) so that you have the form filled in when you arrived at your appointment? They probably had, but it does seem far more logical if you arrived with the form already completed. Carol attempted to join in the conversation the two staff were having, but one of them, a really cross-looking of woman in her late 40's or early 50's totally ignored her. A lady came in with a child and needed some assistance, but this staff member was somewhat abrasive with her. Well, I thought so. Not exactly the sort of manner you expect from N.H.S. staff. Most are extremely polite and pleasant, but this woman was really rude.

Carol was eventually called in by the nurse. She knows us well, so it was quite an easy appointment. Afterwards we went to have coffee in Costa, which is in the new entrance area of the hospital. Nice to be able to relax after the appointment.

Before we left, Carol walked back towards the main area of the hospital through the long corridor and we ended up at the hairdressers. I've walked past on several occasions and noticed this. She managed to book a hair appointment for 3 o'clock this afternoon. It has been quite difficult to make such an appointment, when she has so many various hospital appointments, along with chemotherapy sessions.

We went back to the hospital for Carol's hair appointment. The lady who did the hair-trim was very efficient and the job was done very quickly. Carol had looked on-line to find a hair style that suited her and eventually found exactly what she wanted and we printed it out to take to the appointment. Unfortunately we didn't have the correct money to pay for the haircut, and they didn't have a chip-and-pin machine to pay and didn't have the cash on us, so I had to go to an A.T.M. machine. The machine at the hospital entrance was 'out of order,' and I realised that there was a machine near the restaurant which was a long walk through those endless corridors, but I managed to get the cash out and walk back to the hairdresser's salon. Done and paid.

On Friday Carol had a further appointment with one of the oncology consultants at the Macmillan Unit at Milton Keynes Hospital. It was another bright and fairly sunny day so it seemed a sensible idea to again walk, avoiding having to park the car.  We got to the Macmillan unit far too early. We saw the colorectal nurse we've seen on many occasions. Infact she was there at the time of Carol's original diagnosis but we haven't seen her that many times over the past year or so. Then we were called in to see the consultant. We had been told that things were going well, that the chemotherapy was successful, that the tumors were shrinking considerably. We had been told that Carol was to have two operations, one in Milton Keynes to deal with the lower bowel tumors and then she would go to Oxford for the liver operation and that some radiotherapy would be used. That was what we were expecting when we went to the Churchill in Oxford a few weeks ago. But when Carol mentioned all this on Friday she was told that they had never promised an use of an operation. We are beginning to get very conflicting responses from both Oxford and Milton Keynes. Carol was told that she needed to have a P.E.T. can in Oxford, and that they had attempted to ring her during the week but couldn't get through, hence the cancer coordinator who rang the other day. She had been told that Oxford wanted the scan done before her next Chemotherapy cycle (which will be the final, twelfth, one, starting this Tuesday.) before they can go ahead with the liver operation. But then the consultant in Milton Keynes said he knew nothing about this. We are going to Oxford on Monday, having got the scan appointment there at about 3.30 in the afternoon. (On Monday morning Carol has to go to the Milton Keynes oncology department as usual to have another blood test to check that she can continue with chemotherapy on Tuesday.) So you can see why we are so confused as to what is actually going on and what the next stage of treatment will be. I would say that both sides need to sort out any communication issues which is what is causing all the confusion. We spoke to a nurse who has now gone out of her way to attempt to find out what is going on and we will have a meeting with the lead consultant who will be able to rectify any confusion which should put our minds at rest. Unfortunately after the consultant's meeting on Friday, we left feeling somewhat negative about things, which didn't exactly help matters.
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