Chapter 11 - In which we take 2 steps forward and one back

Greetings from happier days (as Lord Emsworth in Oh Clarence! May 2014)

It's now four days since my birthday but I'm loathe to take down the balloons and banner, they make the place a little more cheery. The fact that it's four days since I last blogged (is that the correct past tense for blog? Sounds a bit rude) is not coincidental. I have had new challenges to deal with since then.

The Clot, The Infection and the Antibiotics
The clot must be me for thinking I only have to deal with the chemo and its side effects. Seriously though, the blood clot in my arm seems to show no signs of going away anytime soon. Although I'm not sure how they determine when it has since no-one has come near that arm with an ultrasound scanner since they determined I had one. Although it is in a 'superficial' or surface vein, there is always the danger with a blood clot that it can shift into a deep vein and find its way to important places eg the heart. That's not so clever so it's important to keep the anticoagulant injections going; these, along with another injection are administered daily to my already bruised and scarred tummy. And the side effect? Spontaneous nosebleeds, often when I start eating. And because of the anticoagulant it takes ages to stop. I am likely to have to go along to the Ear Nose & Throat people to see if they can 'zap' the offending blood vessel in my nostril, which doesn't sound fun.

The good news on the infection in my arm, around the site of the old PICC line which had to be removed, is that the huge swelling I experienced over the weekend when I could hardly bend my arm or make anything like a fist, has now come down to manageable proportions - still there but now acceptable. So the antibiotics are working but I am now told that, like all antibiotic courses I must stay the distance with this one (involving three long drips every day/night) for ten days. That takes me past the weekend when I was dearly hoping to go home for a couple of days and nights. The days are still possible (as long as the infection doesn't worsen and I don't succumb to any others) but not the nights as I will need to be connected to Horace and he doesn't travel as far as Cheriton. Bummer. Bit of a blow but to be expected, I guess.

The other main side effect of very strong antibiotics like this is the inevitable diarrhoea which you will be pleased to know I won't go into the details of but you can guess for yourself how pleasant that one is.

Another, more minor but rather upsetting side effect is loss of appetite; I don't feel like ordering food because I know there's a good chance I won't be able to eat it. I force myself to eat what the body probably needs (which is not huge at the moment). My body weight seems to have stabilised around 76kg (11st 13lb) - my fighting weight is normally 85kg (13st 5lb). I haven't been this light for 30 years...

My new birthday slippers (thanks, Lizzie!)

The Treatment
Of yes, I nearly forgot that amongst all the side issues going on. We are now on Day 17 or so of 21 and this is the recovery phase before we start again on the R-IVAC (cycle no 2) regime next week. I am reliably informed that it is not as onerous as the first one I've just been through. I hope that's right. My blood levels are all rising again and looking good, my risk of infection decreases every day I improve and they are generally happy with progress on that front. It's a balancing act at the moment with all the other stuff but one minute I'm on fluids to increase potassium levels and rehydrate and the next I'm not. All leads to an exciting life.

The PICC line
Having had the old PICC line removed last week I was relieved yesterday to go and have a new one fitted in my other (right) arm. We (me, the nursing staff and everyone who goes near it) are on pain of death to look after this one and ensure that it carries on working well, doesn't get pulled etc. I have run out of arms to put them in now. And my poor old right arm has had enough of cannulas and blood removal via needles; my veins, which normally pop out of my arm with prominence, have all retreated at the sight of another needle and need time to recover. Needless to say they couldn't touch my left arm at all for this.

The PICC line allows for blood to be removed and up to two different i/v drips to go in. So much easier and more comfortable. So fingers crossed we don't have a repeat performance of the left arm (it is very rare apparently. But then so is Burkitt's and I've got that).

Visits

Me and Kevski from Winchester Today

Last week - certainly up until the weekend, I deliberately kept visitors at arm's length; not because I didn't want to see anyone - although I tire easily - but mainly because the fewer people that come into contact with me the better from an infection risk point of view. Steph and Mike made a brief visit (sorry it wasn't longer, Steph, but it was a bad time), Sally came on my birthday and Saturday (with Lizzie and Matt, up from Devon for the weekend), Zoe and Cassie came on Friday too as reported in last blog post, Lizzie and Matt came again on Sunday en route to Devon, Kevin Gover trained/bussed it from Winchester yesterday (Monday) and today old family friends John & Julia Bryant (John and I once shared a racing mini for a season in the 70s) are due at 1pm, Casie and Dougal (who bred the lovely Rosie) are also coming in, plus designer friends Emma, Martin and Suzy from Winchester are coming in this evening. So a busy day today. I hope I don't get a nosebleed whilst they are here - or worse still get whisked away to ENT and them find me missing.

Tomorrow, my niece Vikki, who lives in Holland and whose husband Chris so tragically died of a brain tumour a couple of years ago, is making her way over to see me and Sally is picking her up from the airport. So I'm a lucky guy on the visitor front. I just have to pace myself: too many people, too much dancing on the tables, and I wear out quickly. My general fitness level is at rock bottom, I'm going to have to join the gym and get cycling/walking once I'm out of here or I shall waste away.

Update on the fundraiser
I am acutely conscious that my long suffering facebook, twitter and other friends and family have already been extremely generous - the running total stands at about £70 shy of £3,000 (plus Gift Aid) - so I reluctant to keep banging away asking for even more. For this reason, Kevin Gover is going to write a piece in his online paper, Winchester Today, as well as it appearing in the November issue in print. Good on you, Kevin.

I have agreed with the Lymphoma Association that the funds will not just go into a general sinking fund but will be used to part fund a specific initiative: GP awareness of Lymphoma symptoms through a series of online e-training programmes available for them to become more acquainted with the specifics of Lymphoma. I gather it has struck a chord with many people - after all, early diagnosis is key to the success of treating successfully nearly every cancer. So anything that can be done to improve that early diagnosis (crucial in my case) has to be good news.

If you have already donated, a huge thank you and you now know where your money will go; if you haven't, then I appeal to you to dig in your pockets to find a tenner and go to the Virgin Giving page and spread the word by whatever means you have available to you. For instance, Sian Tabberer from Cheriton is having a 'dry' November and putting £2 a day into a pot for the month instead. Lizzie's boyfriend Matt and his brother Kyron are intending to raise money by shaving their heads (I know that feeling, guys!) and a couple of people growing 'taches for Movember have agreed to put some of the proceeds towards the Lymphoma Association; after all, it affects men too.

A final reminder of that link and I'll stop pestering - http://uk.virginmoneygiving.com/team/anillblokesteam

See you soon!