Aboard Dignity (Lagoon 420) Blog

Health-wise I continue to recover well from the unplanned/unexpected side effects of round 1 chemo. Drugs are still controlling my lung and liver infections but each day I strengthen. Helen and I went out for a longer walk today looking for something different to eat but only ended up in a Subway. The docs continue to need to keep me in and this state of affairs could easily last until the end of next week whereupon who knows what decision will be made as to a furlogh and/or recommencement of full chemo – round 2. I find wanting the latter to happen but my organs must get their rest.

Blood counts improve daily so time out could be extended soon which will allow me time to travel out and see our new home and both of us to go to the movies in London and sight see. For instance we’re keen on visiting the shard. If worst comes to the worst we can always jump in a taxi and get back to the womb of the hospital quickly.

Things to sort of look forward to.

Another look ahead involves son Sam. His Australia visa is up soon and he has taken the big decision to come back to the UK to study complementary therapy. That means coming to stay with us as the commute from Chorleywood and the college we’ve booked in Harrow is excellent and quite frankly, Sam is probably in need of financial support too.

Sam will be flying back via the US where he can meet old friends and go to Ben and Amy’s wedding. We’ve asked him to represent the family in our absence and are amending what we planned to say ourselves so we can say something similar through him. Not as good as being there ourselves but hopefully this means a maturity step for Sam. He loves to perform so this could just be a slam dunk for him.

We wish him all the best on this. The frustration of dealing with a 23 year old on the other side of the planet is communication which is a bit frustrating for us as we have a lot to work out to get him on his feet in the UK.

One of the tasks I have taken on on Sam’s behalf is to research ways to get work experience after his first intensive training period. To do this I have engaged the complementary therapists here at the hospital which is covered by my insurance. I’ve already had reflexology in my room and have a massage planned nearby next week. Not neglecting our responsibilities we talked to the therapist about networking ideas for getting Sam some work experience which I’ll repeat next week with the massage therapist. Life can be tough.

At the high level I am now feeling pretty good. The side effects that span off from the first round of chemo are now under control, my body is finally producing copious amounts of White-Cells. My counts are up and we’ve even been allowed out for a walk outside of the hospital. Day by day I feel stronger and steadier. I look less like a lemon.

At the low level the battle plays out and needs to reach conclusion. More time in bed. I have a series of lung shadows, the large ones obviously fungal, the lesser ones probably the same but with some uncertainty due to their smaller size.

These are the types of fungus that most people have in their lungs but have run amok when my blood counts were flat. These are being beaten down by intravenous drugs. If I could take oral therapy for this we might be able go home for a bit but that is not on yet as we have the parallel fight on with a liver ‘syndrome’ which is limiting the drugs I can take for my lung fungus battles.

Rather than having one nurse (and at one time an ICU) set to my care and monitoring I am back to sharing the nurse with three other patients and the frequency of tests has dropped significantly. I’m missing the attention but this is all an indication that the serious threats are past.

Hovering on the sides of this secondary battle are the docs taking the bigger view on my lymphoma. They are deciding when and how to step back in and step up primary treatment that could send us round this or another circle again.

But each day I feel better, stronger, more stable than the day before. Good.

On other fronts things progress. House survey is set for Monday. Helen and I scheme furniture for our home and other desirable from a high level. We’re not committing to anything just yet but we’ll be ready when it’s time.

There are more admin things settling out from our resettlement back in the UK. All going well. I’ve run out of excuses for finishing my my UK taxes. Dare I?

Steve has asked me to write this blog because he is feeling very worn out and just being able to lie back, relax and take a rest from the internet is just what he needs.
There’s been some challenges with his treatment lately. He’s developed complications with the liver and is a bit yellow at the gills.
This diversion means Steve’s next round of chemo has been delayed and the gap we needed to get to Ben and Amy’s wedding in Connecticut has basically gone. This is the saddest part and we are very disappointed. We are consoled by the fact that another ceremony will be planned in the UK for all the family and friends here.
The care and treatment Steve is receiving here at University College Hospital has been excellent. He has a nice (although very clinical looking) private room with an ensuite. I can stay overnight whenever I want as it’s easy to make up a spare bed in his room. I have taken advantage of this a few times but in general I go home most nights. I do need a break from the hospital.
The journey to and from hospital is not too bad. The train line is direct from Chesham to Euston Square with no changes. The hospital is literally just across the road from Euston Sq. station. If I catch the fast train, the journey is about 50 minutes. If I catch the slow (stops at all stations) train it can take an extra 20 to 30 minutes. I don’t mind as I get time to read and occasional talk to fellow passengers.
These are certainly challenging times and I thank all those who have been sending us good wishes. As always Steve continues to stay positive and faces any new issues with his usual humour and courage.