First week after hospital

Sunday 11th February 2007

Legs had come down a bit by morning, but they would, wouldn’t they? 8.30am Mass down the road and went by car. Felt a little “wibbly wobbly” en route. Food and drink experiments continued: London-brewed Guinness – too weak; Fuller’s Golden Harvest – too strong! Peter and Sue called in for an afternoon visit, which was nice. Mr Blobby is back this evening. By my bedtime (still crazily 1am!!) my feet, legs, knees and thighs are up like balloons.

Lunch: Soup and avocado pear.
Dinner: Chilli con Carne – meat tasted like cardboard – unfortunately.

It is getting very frustrating for Tina and I am looking very thin, particularly my chest and shoulders. I am in urgent need of a more substantial diet and nutritional advice.

Saturday 10th February 2007

Some more food experimenting: Kiwi fruit – just about ok; yoghurt – yes! Did my own GCSF injection. Slept from 8.30pm to 10.30pm and 12.30am to 4.30am. Went to bed with fat legs, thighs and behind the knees.

Breakfast: Yoghurt, kiwi fruit, banana and a vitamin C tablet.
Lunch: Lentil and ham soup with toast croutons; avocado pear.
Dinner: panfried salmon (good), hollandaise sauce (good), garlic potatoes (no taste), beans (good); vanilla, chocolate chip and ginger ice cream (lovely).

Friday 9th February 2007

I am obviously getting a lot of fluid retention and I am somewhat embarrassingly at home to Mr Blobby!! Matthew does the run to Kings with me today, which is good for us both. My weight check today has me at 78.5 kgs – I have lost weight as I have not been eating much. My blood counts are- Wbc: 0.25; Hbn: 8.9; Plt: 41; Neuts: 0.22. As my neutrophils are so low I am not able to have any Campath today. I am told that I am also already neutropenic and what this means, including being given a “clean diet” sheet, strictly avoiding possible contact with infections, awareness of feeling unwell, temperature of 38c, etc. Steve Devereux underlines, this reminding me that I should get myself into the local A & E if I feel unwell or have a temperature and call their on duty doctor. I check out Mr Blobby(!!) with Dr Lara and am told to keep an eye on it and any other similar symptoms or reactions. I am shown how to self inject with GCSF and do it – in front of Matthew who is most impressed. I am given two doses to use over the weekend, plus being told what possible achy side effects I might get in my pelvis, thighs or sternum. I am also prescribed a pot of E45 for my hands and flaky skin. Matthew experiences the horrors of the pharmacy – i.e. the interminable wait! – with predictable reaction! Checked out an off-licence in Tulse Hill and found a Guinness brewed in Nigeria at 7.6% strength!!

Thursday 8th February 2007

I have sore hands from washing up without gloves on. I have flaky skin on my legs and my feet are beginning to swell. A day after the Campath and in the evening I have a rash come up on my chest and shoulder. I have a piriton tablet, given to me in case this should occur, however, the rashes are still up during the night, albeit they are not a problem.

Some food experiments: avocado pear; mango; and pineapple – all great!

Dinner: Smoked haddock (unfortunately no taste), sliced tomatoes (moist and ok but no real taste) peas – quite good.

Wednesday 7th February 2007

My blood counts today are- Wbc: 2.0; Hbn: 7.6; Neutrophils: 0.6. The nurses are having difficulty finding a half decent vein, so I will probably have a PICC line fitted on Friday. What is involved in this is explained to me and I am given a leaflet on it as well. I get Campath given over 2 hours this time as I had apparently done so well before. However, no sooner do I finish my post Campath flush and have my canula removed, than I get an allergic reaction come up with rashes on my back, shoulders, arms and head! We have to stay for ages. I am injected with more piriton and hydrocortisone – I already get it as pre-medication. I am seen by doctors on two separate occasions and, when the reaction shows signs of reversing, we are eventually able to leave at 8pm, over an hour and a half later than expected. We get home at 9.20pm. We do, however, get some good news today. We are paying a fortune for parking and Lisa tells us where to park for free just a little way back up Denmark Hill from the hospital. This is very timely as the hospital car parking is also chaotic – Tina ended up parking across the road in the Maudsley today and we had to get a security guard to let us out as their car park attendants finished at 6pm!!

I am still not eating anything worthy of the name of food. Carlsberg Special Brew doesn’t help this time either!

Monday 5th February 2007

Back up to Kings for the start of the 4 week’s of Campath. Not a very good journey despite leaving at 9am – we seemed to be in permanent rush hour mode until we reached the Thornton Heath roundabout, when suddenly everything became easier and we were ahead of ourselves by the time we reached Herne Hill. I was feeling decidedly low key so we stopped in Brockwell Park for a 10 minute break, sitting in some pale winter sunshine. That is until we were politely moved on by a couple of park rangers, who kindly pointed out the nicer aspects of Dulwich Park. Apparently Lambeth’s parks attract a lot of dodgy people, hence the vigilant rangers, whereas Southwark’s are somehow better and don’t!! As it happens we were never to have the time or the opportunity to visit Dulwich Park to check if this was correct!

I check into the bloods unit, while Tina parks the car, but my wait is not long. It is just long enough for Tina to get a coffee from the adjacent café – Starbucks would you believe it!? “what does that taste like?” I wonder. It is black filter coffee, which is wouldn’t normally go for at all. “Hmm – I can drink that.” Another discovery and I get a cup to take with me the chemotherapy room. The chemotherapy room is of course another new world, only seen obliquely previously from the outpatients’ waiting room. This is to be my thrice weekly “home” for the next 4 weeks and which was to become somewhat of a friend as well. As with everything about Kings, the team here are great and made us feel very welcome – starting with nurse Lisa this morning and going on in the same fashion every day – I cannot speak more highly of them, they were brilliant. I am also looked after by snr. charge nurse Joy and seen by Dr Lara Roberts, one of the registrars. My blood counts are- Wbc: 14.9; Hbn: 8.5; Plts: 40; Neutrophils 1.3. Meanwhile having discovered Starbucks black filter coffee. I next discover the pleasures of Knorr tomato and herb soup, as dispensed from the machine in the chemotherapy room – free! I decide to pass on the tea, coffee and chocolate which the machine also does and have 4 cups of tomato soup through the day, bearing in mind that I am still not really eating anything other than bananas, ginger and so on. I eventually start my Campath, which runs for 3 hours. This finishes up with my getting an injection of granulocyte cell stimulating factor (GCSF) as my neutrophils are low enough already and will probably go even lower so as to require some help in their recovery. My sleep patterns are up the creek. I am still sleeping far fewer hours than usual and sit up reading and doing sudoku until I eventually dose off.

Sunday 4th February 2007

I am in no fit state to go to Mass this morning and breakfast is a disaster. I cannot find anything tasting or feeling remotely good to eat!!! I just about drink a mug of lemon and ginger tea. Matthew comes up for a visit and to check how his old man is – or isn’t!! I find I can taste crystallized ginger, but neither lemon barley water nor lime juice cordial is any good as the taste of water is so foul! Didn’t feel up to doing much, so sat around watching rugby and football. The dryness of my mouth is becoming intolerable and in an inspired moment I try a can of ginger beer. It was both thirst quenching and tasty – quite amazing!! I drank 3 cans today – leftovers from Christmas as it happens.

Lunch – Covent Garden lentil and ham soup (Yes!); ham sandwich (No!)
Nothing else to eat – just couldn’t face it!!