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Patricia's health

News about Patricia's health

We aim to keep a regularly updated flow of information about the state of Patricia's health. Please feel free to leave us messages (comments) here.

A very busy week

Health bulletins Posted on Mon, November 27, 2017 21:43:31

Last week I had appointments every day. Monday, the nutritionist (see previous blog). Tuesday started with a phone call from my GP to check on how I am. I was amazed; no doctor has ever just rung up like that to check. I really feel well looked after. In the afternoon I went to my second session of cancer yoga, which is at the exactly the right level for my needs just now. In the evening I cycled to a concert in Koncertkirken with a group calling themselves Prima Vista. I haven’t enjoyed a concert so much for a very long time; such talented young players and so full of enthusiasm.

Wednesday I was back for a session with Bjarne the psychologist. We talked mostly about how to cope with events that trigger flash backs. I’ve had a few incidents recently where I have been suddenly and utterly overwhelmed especially by thoughts of the lung collapse and particularly having the drain put in. I just desperately want my body to be left alone. No more intrusions. I’ve never consulted a psychologist before, but am enormously grateful that I do now. After our 90 minute sessions he sends me several emails with notes of what we talked about and suggestions for further reading. This time I also have some very practical exercises to do every day. It’s brought it home to me that becoming reconciled with cancer is a process; knowing is one thing, understanding and internalising is another. So I now try to give myself time each morning to go over the emails, make my own notes, draw mind maps and do my exercises. Like serious study!

I think it was on Wednesday on my way home that I fell off my bike. I was going very slowly and trying to stop at a pedestrian traffic light that I usually ride through. There was no one trying to cross, but somehow I decided to be legal and stop, got confused and ended up slowly and gracefully tilting over. The bike is heavy and I ended up trapped under it. Someone came to lift it off me and I was fine cycling home. Riding an e-bike definitely requires different skills from riding a pedal cycle.

Thursday I was with the physiotherapist who gave the sore spot in my back in between the ribs under my shoulder blade a very deep massage. She sent me home with a long strip of yellow latex to use as resistance for daily shoulder blade and chest exercises. Christina is also very good. I’m so lucky to have such good care!

Friday we were back at the oncologist department for a check up. As expected, everything looks fine and I will not have any more treatment, just three-monthly check-ups. What was not expected was to learn that “my 7th rib is still broken”. What??!! That was certainly news to me. The doctor mentioned it so casually, that I just swallowed the information; my brain was saying, “well you just have to let ribs heal by themselves, so there is nothing to do, just let time heal”. However, on getting home of course many questions came into my head. This morning I contacted my GP through the process called an e-consultation. It turns out she wasn’t at the clinic today, so I will wait to hear, hopefully tomorrow.

Yesterday I managed to do without the oxycotin and hardly needed a sleep in the afternoon. This morning I was in pain again and took a pill and slept 4 hours after lunch. Was this a valid experiment? Am I justified in concluding that if and when I stop the oxycotin, I will be more alert?

Lastly, here you can see my new cycle helmet. I finally decided that my present ones (22 and 18 years old respectively) were probably not safe any more. You can also see the fleece suit and hat that Keith made me to keep me warm.



49 Kg

Health bulletins Posted on Mon, November 20, 2017 22:01:59

Today we went to see the nutritionist to check up on what we could do to help me get stronger. I weighed in at 49 kg (up 1 kg from after the op). I’d prepared for her questions about what and how much I’m eating by taking photos of every meal for the last week. She made notes, calculated and finally concluded that my intake of protein and calories are meeting my needs. So I continue with my present diet, including the daily 500 mls of the special home-made lactose-free egg yolk, banana, yoghurt and cream shake. One thing I can do is to drink more fruit juices instead of water to up the calories a bit. We have a follow-up appointment in a month.

I’ve been in touch with my doctor, who suggests changing the way I take the painkillers: I continue with the 8 panodil daily but now I’m back on the slow release Oxycodon, but just one a day, and then I can take the quick acting ones as and when I need to. I do so very cautiously bearing in mind the current news stories from the US about the ease of addiction to these opioids.

The really big news is that I am now the proud owner of an e-bike. It is taking a bit of getting used to, but is huge fun to ride. I just need to improve my stopping technique. The bike has back pedal brakes. These are not used in the UK so let me explain for my British friends. To brake, you pedal half a rotation backwards, which means that as you glide to a halt both feet are “up” parallel to the ground. But now to be able to step off the bike, I need to be able to stand on the left pedal so I can then put my right foot on the ground. However, pushing down on the left pedal a quarter turn in order to stand on it, means that the electrics kick in and the bike lurches forward. Um!



5 weeks on

Health bulletins Posted on Sun, November 12, 2017 17:10:30

Last week I made it as far as the elephants – twice, and twice managed to go for short walks on my own.

Friday I saw the physio at the Frederiksberg Cancer Centre, who was most adamant that my labile emotions are because of “all that I’ve been through” and are very unlikely to be a side effect of the Oxycocon: keep taking the pills! It’s hard to distinguish what are pains from stiff muscles in my back and sides and what are pains from damaged nerves. She assured me that I will do myself no harm doing simple, gentle stretching exercises and rotating my shoulder blades from time to time during the day. Seems pretty OK!

I also signed up to try out yoga on Tuesday afternoons. The nurse last week had thought I was too frail yet, but since I do meet the only criterion which is that you should be able to get up off the floor unaided. I think I’ll give it a shot.

I’m not up to cycling yet. I did give it a try to the end of the road and back. Balancing was OK, but I was completely puffed out. It is amazing how different it is getting around town when you don’t cycle. To take a taxi, you have to have a lot of time and a lot of money, partly because the traffic moves slowly and partly because the one way systems mean you can’t go in a straight line from A to B. Getting around town on the buses is OK, they are pretty good, but there are waits at interchanges and walks to and from the bus stops. I’m investigating the possibility of an electric bicycle.

The next week will be busy: Monday a blood test, Tuesday CT scan and yoga. I also need to make appointments with the psychologist and my own doctor for more pills. Looking forward to Sunday afternoon there is a Concerto Copenhagen concert.



No corset, no stitches!

Health bulletins Posted on Sat, November 04, 2017 13:49:09

Progress happens; is erratic and slow, but happens.

Last Monday I went for a preliminary screening with the nurse at the Frederiksberg Cancer Centre. We were agreed that I need to be stronger before I can sign up for any rehab courses. So I have appointments with a physio and a dietitian in the next two weeks to try to get some very simple excercises for my back and to put on weight. And to reduce the amount of energy that I use in keeping warm, Keith is sewing me a track suit out of double density baby blanket fleece with a high tog and clo rating.

Last Tuesday I had a final appointment with the operating team. It was nice to see Jesper Holst, the surgeon who had operated on me four years ago. My lung is absolutely fine and he advised stopping the Ibuprofen and the “slow release” Oxycodon (opiods). I should continue with the paracetamol and take “fast acting” Oxycodon as and when I need them. I can also stop wearing the corset and the nurse removed the stitches from the third drain. It really feels like good progress.

Yesterday, we went to my own doctor to get our Life Certificates signed for the UK pension service. While there she went very carefully over how I am and was most insistent that I get back in touch in good time for more pills. I fell well looked after.

Luke has been to visit. One day we made it round the block to the Musik Konditori cafe, the next to Lagkagehuset and my favourite Flying Tiger shop. One evening we went to a concert at KoncertKirken. I do sleep at least 12 to 13 hours a day and rest prone for several more. My left ribs are still numb and often feel strangely heavy, and I’m generally in less pain than before, probably because I feel more in control knowing I have the Oxycodon “bombers” to hand.

I think I have to remember that although it is now four weeks since the op, I had the misfortune of the collapsed lung, which has set me back a couple of weeks. I have to smile when I think how two doctors have sympathetically described the incident as “irriterende” literally meaning annoying. The doctor who actually treated me and put the drain in described it as “pisse irriterende” (literally pissing annoying, but bloody unfortunate would be a better translation). I was really quite taken aback, that is not the sort of language I would normally expect from a doctor!



Meditations

Health bulletins Posted on Thu, October 26, 2017 17:47:48

I’m not too sure about how to update; the track doesn’t seem to be leading anywhere. I am less able to walk around without getting puffed out than I was when I first left hospital. In fact yesterday I returned to get them to check me out. My lung in fact looks very good, which is enormously reassuring, so why am I so exhausted and puffed? Would it help if I were less scared and felt physically stronger?

I know it was a huge operation and it will take time, but progress does seem to be very slow. I wouldn’t say I feel frustrated, I’m following the psychologist’s advice and accepting that this is where I am at the present. I don’t have much problem with snoozing and daydreaming for most of the 24 hours. However, being a great believer in the power of suggestion, I decided to hone my self hypnosis skills which I learnt years ago from a doctor to overcome the fear of flying. I settled down with a CD “Dawn over the Australian bush” and successfully relived the wonderful feelings of swimming in the warm waters of Arena island off Palawan (the geographical miss-match is immaterial!). My message to myself is: “I am getting better”.

In this context I’ve been wondering about the differences between TM meditation marketed by the Maharishi Mahesh Yogi in the 60s, the current enthusiasms for Mindfullness and hypnosis? I instinctively feel that one should be on one’s guard. Any comments?



Diversion

Health bulletins Posted on Fri, October 20, 2017 16:32:24

Since Tuesday recovery was going backwards not forwards; I was getting increasingly tired and puffed. Thursday I went to my GP to get the stitches taken out from where the drains had been and could hardly make it to the end of the road for the bus. The nurse checked me over and sent me straight back to hospital. An Xray showed a partially collapsed lung. I now have a new drain in to remove the air from around my lung, which was very painful and resulted in 3 doses of morphine, which in turn have made me feel dizzy, tired, shakey and muddled-headed. Hence this tardy update. I have just made it along the corridor and back without panting and am getting 3 treatments with an inhaler to help open out the alveolar. I should be home tomorrow. Why did it happen? The doctor said it was rare. Unlucky. I wonder if it was the coughing fit I had on Monday? At least it’s nice to be getting back on track.



Home again and counting

Health bulletins Posted on Fri, October 13, 2017 21:24:03

Actually, I got home yesterday, but I feel so tired all the time I didn’t have the energy to write.

I had expected to be in for 8-10 days after the operation and, by my fingers, Thursday was only 6. I asked the doctor who then counted the days up: the day of the op -1, and counting on made Thursday 7, which he pointed out was nearly 8!

I have other maths problems in relation to my pills. Below you can see the 2-page scheme for my medication. The box and charts shows morning, midday, evening and night: 8, 12, 17 and 22h. However, I need a supplementary box for pills at 20h and a notepad to record the fungal mouth washes at 6, 10, 14, 17 and 22h. It’s a full-time job keeping track of what I’m to have when, so I have laid everything out on my painting table, which has to double as a control center. The sooner I can begin cutting down the better, but the notes for how to do that span half a page and 8 weeks.

In the meantime, I checked my last hæmoglobin count and it was very low, which explains the tiredness and the opiods make my vision and brain blurred. So please don’t expect frequent updates; I think we can all trust that I will continue to feel stronger each day. Iron rich foods are on the menu and I have an appointment with the Frederiksberg Cancer Centre about physiotherapy on Tuesday 24th October and a check up at the hospital on the 31st.

Thank you everyone for your emails, messages, cards and flowers, I feel very well-loved and supported.



Another helicopter landed

Health bulletins Posted on Tue, October 10, 2017 23:05:20

I’ve been sound asleep all evening and only woke up as another helicopter landed above me and the wind sucked my window shut with a bang. Now I have to tackle both my 20h and 22h pills at the same time. Such are the challenges before me just now. The day started with a shower. Should be relaxing? I had to call for help to dry and dress myself, I was so knackered already. Keith visited. Second drain out. New development: mouth fungus – ugh. Met A. Who is admitted for the first big thymoma op tomorrow. We got in contact through the online Cancer Forum. She has a great attitude, and in the good hands of my first surgeon. Had to assert myself and ask the lady in the next bed and her noisy 4 hour visitors to kindly chat outside; turning my hearing aids off didn’t cut it. I need rest more than anything, so next update in 2 days.



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