Thursday, April 29, 2010

Still here

I feel fine but I am still here. The neutraphils were up to 0.2 yesterday and I have just had another blood test, they have to reach 1.0 and then I can escape except my temperature keeps going up and down even though I have no symptoms and look and feel perfectly OK. I just keep reading the books and doing the crosswords and wont believe I am free until I walk out of the door.

The MRI scan showed up another little leio in my thigh so the score is now about 50 in my lungs, 'a few' in my liver, one in my stomach and one in my leg, I will have to choose which to go for after the chemo is over. The good news is that yesterday I met a woman who had been hosting leio for 14 years, for 10 years she had no treatment at all. So perhaps like a fractious child I should just put him on the naughty step and ignore his attempts to get my attention. At the moment however I would give in and offer him or anyone else a lollipop if they would just let me out of here.

Monday, April 26, 2010

Everything that can go wrong

First it was the DVT, then my PICC line got blocked and I had to come in and get it removed, then on Saturday the full rag doll with no stuffing phenomena occurred and walking 100 yards to the Post Office nearly killed me, the reason became clear on Sunday when I started to shiver, felt like death warmed up and got admitted to hospital with dangerous fever. So here I am with neutrophils of nil (sounds like a garden feed to me) and white blood cells (who needs them, we all know blood is red)of a very low nature. Basically my immune system has gone awol and I need to stay here till it finds its way back.

It did mean I was on site for the MRI, which I just had, what ridiculous things they are, I wonder if all that noise is really necessary or if they just do it to impress. You feel as if you are the street undergoing major repairs, or I started to pick up subliminal messages as the noises changed, mostly it was Baghdad and burkha repeated over and over again interspersed with drilling noises. I have been considering a burkha as appropriate garb for the chemo look so perhaps someone was reinforcing this having seen me hairless overnight. We will see what all the noises showed up: a DVT or a new sarcoma or both but till then its rest, rest and more rest and try not to think that I am spending far too many of my precious days in this bleeding hospital.

Wednesday, April 21, 2010



Despite all this circles stuff I am feeling OK and can't stop the sun putting a spring into my step, or into one of them anyway. I continue to be visted from all quarters; the weekend before last it was California and France and this weekend Michigan and the very exotic, Hull. From Hull came Gloria and Doug, the only friends I have left from University days; Gloria went on to teach with Stewart and they lived a few doors from us when we both moved into the property owning class.

Doug was the first person to ever ask me if I was a historian; he was in the year above me and Gloria and was stewarding people to some sort or freshers event. I almost said no when he asked me; how could I possibly describe myself so grandly, I had a history A level, I had opted to do a History degree in a very off hand sort of way, did that make me a historian? Anyway I have no such compunction now, despite never having picked up a non-fiction history book for 40 years, apart to move them from house to house; I can't throw them away of course; I am happy to claim to be a historian whenever the need arises. It's surprising how often it does; if you don't follow an academic track in life you sometimes need to let people know you once did even for a short while.

History is a good discipline I find for all sorts of walks of life; it means you can read loads of stuff really quickly and weigh up the evidence and the opinions before you state your view or take action; it seems I have been doing that sort of thing all my life; not least since I got cancer.

I didn't make many friends at University because I was an old married lady (all of 19) by then and wasn't a candidate for the chatting up and pairing off that went on; or much of a catch as a friend in a new place as I wasn't going to be hitting the pubs and clubs. I tended to be left to have lunch or sit around campus with the billy no mates types so I often didn't bother and went back to my domestic idyll. My other visitor this weekend from Michigan, Rudy, who came to live in the flat below us in 1968, brought a different perspective on that idyll; he had come to lecture at the University, he was a proper sort of hippy Alan Ginsberg look a like; so I could bye-pass all that undergrad freshers stuff and move in the big boys' (they were all boys!) circle around Rudy and do it with my other half. I had very set views about what University life ought to be like and this was much more like it; a lot of hanging around doing very little if I really recall.

So this weekend my University life came back to me with Rudy and Gloria and Doug sitting round for lunch and it was good; and this morning D and G sent me sunflowers and added to the sunshine that the powers that be just can't keep out of my life, try as they may.

Saturday, April 17, 2010

Going round in circles

Here we go again. I got out of hospital after chemo number 4 on Thursday night not feeling too bad, no sickness and I had had a blood transfusion to up my Haemoglobin so was feeling reasonably energetic on someone else's fuel. After braving the election debate and thinking I could have done a better job myself, I went to bed and looked at my fat leg which was feeling achy, stiff and looked even fatter. Next morning off to GP- could this be a DVT(known side-effect of some chemos)or recurrence of leio in the vein? Yes of course it could so after lots of frustrating calls by him and me I get sent to the DVT assessment service at Selly Oak almost 3 years to the day from my first visit there at the beginning of this sad tale. To say I had a sinking feeling is to put it very mildly.

The DVT assessment service has changed in that time and mostly gone into the community I was told, I cannot tell you whether this is a successful move as I went to the hospital to a funny sort of in-between ward. There I saw a very charming, pleasant young SHO (junior doc) about 25 I'd guess. By this time Jess, my daughter had joined us and turned her full investigative, don't piss me about, skills on the poor lad; so he had me and her going at him. To cut a long story short, I was scanned, they found a blockage from thigh to knee; they said this was unusual but after checking with my oncology team decided to send me home with heparin injections and check me out when I go for next chemo. Poor SHO had to deliver this news and receive all the frustration back from us all. Anyway this was at 5 in the evening so there was no way I was going to get an MRI till Monday or even the chance of booking an appointment for one. Heparin I knew was a good move at this time so off I tottered back home with a very sore leg.

I will contact my oncologist on Monday and demand an MRI before I go back for next chemo. It was all the usual NHS story I am afraid:

* why didn't they check my leg during the chemo I had told them it was playing up a bit?

* why did I have to wait all day and be trailed about half a mile in a very old wheelchair by Stewart and Jess to get an ultrascan?

* why did it then take another three hours to decide what to do with me?

* why did I not see a Consultant just a disempowered junior?

* why wasn't am MRI ordered immediately - they know my history!

* why do I have to fight these battles all the time?

It's the same with my last scan: the doctor did come to talk to me about it but he couldn't tell me much more. The facts are these and again I have to fight to learn more:

* they hadn't scanned me at the start of my chemo even though I kept asking about this

* I haven't really had one scan like any other before it throughout the whole treatment, they have all been different and shown different things- no consistency

* this could all be academic as I now definitely have mets in stomach and liver but I can't tell you much about them, the descriptions are vague

* same for the lungs I can't get a good picture of progress for good or ill there; but he repeats that the Xrays show some small shrinkage.

It's all a terrible mess but along with the MRI request I am sending over a list of specific questions about size and number of mets on Monday. I am trying not to let all of this get me down and so far succeeding against all the odds maybe it's the sunshine.

So our planned trip to France looks very unlikely for next week and anyway we would have had to try to get around the Icelandic volcano! It seems I must be part of the jet set now as this stream of lava has directly affected not only us but loads of close friends and family:

* our friends Celia and Richard from California are marooned in Paris; we at one time were going to be there with them so that would have been fun!

* Graham and Ruth, brother and sister in law are stuck in Spain and we have just heard they are getting a taxi from N Spain to Paris and getting Eurostar back tomorrow - what a trip!

* Our old friend Rudy from Michigan (once married to Celia!) flew on Thursday to come and see us; he got to Frankfurt saw all the flights cancelled, no idea why, but one was going to Heathrow so he ambled over and got it - it must have been the last flight into the UK.

So if my bloodstream is anything like the lava stream and it feels pretty close at the moment, I am hoping that it and the bloody obfuscations of the health professionals clears a little and that all of us can get back to living our normal boring lives again.

Saturday, April 10, 2010

In my prime?

Today is my birthday and I am now 61; I have always hated being a prime number because somehow they feel funny as do those big birthdays plus one. I suppose I should be grateful to have made it to another anniversary especially as my doctor phoned last night with mixed sort of news.

Surprise surprise he noticed that I hadn't had a scan since September, I had mentioned this in January before we started chemo but he said then that xrays would be enough to see what was happening; anyway so now he realises he can't really see how well the chemo is doing from the scan but that the xrays show shrinkage. The scan looks a lot worse than the one in September apparently but then it was a different sort of scan. The significant thing is that stuff is showing up in my liver now - tiny bits and there is something in my stomach, maybe an enlarged lymph node but then I have had those before and they have turned out to be innocent. I reminded him that I had had a scan in Germany in December and he had a copy of that so he is going to look it out and we will discuss all of this in more detail next Wednesday when I am back in hospital.

The important thing is that he thinks we should continue the chemo so we are; and today the sun is out, my family and friends are gathering and I intend to be the prime time birthday girl.

Tuesday, April 6, 2010

Awaiting results

It was scan day today; and just in passing a general election was called. Preparations for the scan started yesterday morning when I had to drink the contents of a small bottle they had sent me. I felt just like Alice in Wonderland but thankfully I neither became very small or very tall. Then this morning I was handed a jug full of the most disgusting thin squashy stuff and I had to drink all of it; you begin to wonder if they are just playing games with you; then in for the jab that makes you think you have wet yourself and after all that squash would you be surprised and 30 seconds flat under the CT machine.

Now like Gordon I have to await the results; my doctor did say he would phone but not when so I just have to sit by the phone. It's not just the blobs I had that I have scanxiety about but others that may have emerged and maybe elsewhere. Unlike Gordon I can do nothing to influence the outcome: although as someone on the radio this morning said he really only has to do better than everyone expects and he will be deemed a success.

When I turned on my computer there was a very sad email awaiting me, Pauline, a fellow sufferer with whom I had lovely long chat before I went off to Dresden died last night. She had been suffering badly but I remember how much she wanted to live when I spoke to her and how she was willing to try anything that might help her. She too ultimately couldn't influence the results; it's just too sad for words and only goes to show that being good and right doesn't necessarily mean you will win in the end.

Sunday, April 4, 2010

At risk

Danny has chicken pox, discovered on Friday afternoon. He stayed with us on Thursday night so as my blood counts and immunity are currently at their lowest in the most recent chemo phase, I am now at risk. As if I wasn't before but there you go.

I called the hospital and they just said look out for symptoms and then let them know. I have of course had Chicken pox and nursed each of my four kids with it but it's a funny old herpes riddled thing and can trigger all sorts apparently. The trouble is Danny is a very hands on sort of chap and he likes to share his body fluids quite liberally. He will hand me a kazoo, an instrument he plays with child prodigy type skill, with spit and snot attached and expect me to try to play as well as him; I fail of course but pick up his leavings as I do.

Anyway the spotty boy is now banned from this afternoon's double celebration of Easter and Luke and Aleks' first wedding anniversary. As Aleks is one of his favourite people (and the feeling is mutual) it's a sad expulsion but his other Nanny will step into the breach, feed him Easter eggs and mop up his pox laden messes. We will do Danny-less chicken related activities like egg hunts and self inflicted stuffing with pea veloute, venison casserole and chocolate cheesecake, all cooked by other people not me. Well I am at risk and need to summon my defences; chocolate eggs and champagne may well feature in the risk management activities so I expect no shingles, cold sores or other unmentionables to invade my shell or burst my bubble.