There is a goblin downstairs in the kitchen who is producing a supply of wonderful veggie juices, usually a lurid green but tasty. And pink or purple smoothies, with several fruits, plain yoghurt, and milk. These also taste lovely.
I am also supplied with whatever food I can eat best, which keeps changing.
Among other things I am reading ‘A Heartbreaking Work of Staggering Genius’ by David Eggars. This zips along and may it continue. Apparently it does sustain interest..
I saw a doctor whom I have seen before, who likes to be called Kam. He also conferred with Dr McDermott, the consultant, whom I see most often.
No chemo after all because today’s blood tests showed my liver function is abnormal. It was OK 2 weeks ago, and GP had also observed recently that I did NOT appear to be jaundiced (e.g. yellow eyes).
So now I have an appointment to see Oncologists again in clinic in 2 weeks if they can get a CT scan within 10 days. I think this scan is a) to see if anything isvisible in the liver and b) to assess effectiveness of the chemo to date.
I have completed 5 of the planned 6 cycles of chemo. A CT scan would have been done in 3-4 weeks time as the last cycle came to an end, and they are bringing it forward.
Please let me know, perhaps by email if any of the above does not make sense.
A quick update concerning the nerve block done on Fri 2nd. Oct
It is still too early to judge the effectiveness or otherwise of the nerve block, but either way I intend to push myself to get up more and use my muscles more as they have become rather weak lately.
Chemo
Tomorrow I go to Ontology clinic, as most Mondays, perhaps for chemo again after an extra week “off”. If so, this will be the first week of my last 3 weeks “on”, very likely to be followed by a longer time “off”, as I will have completed the planned 6 lunar months of chemo. There will be a new CT scan soon to help assess the effectiveness of the chemo so far.
Rachel and Matt have returned to Cambridge and they are coming with me to the clinic tomorrow as may still be a bit weedy. Rob plans to do some cleaning while I am out of the way, and will drop us off and pick us up.
Chat
Is this blog getting boring or what? I am not bored myself though! Plenty to read, emails to read and write, puzzles to do, games to play. And in between I doze off, although this can be averted by getting up and walking about – which I must do more often! I have had welcome visitors at a rate of about one or two a day, and phone calls too, plus emails. Thank you to all.
Meanwhile I have been trying unsuccessfully to make further progress on essential paperwork concerning finances etc., etc,. It has felt as if my energy levels were not up to it, but there may have an element of procrastination too. Today at last I have made a small positive step, which is intended to set the ball rolling after many weeks of no progress. Can’t say more about that in here, but I feel more optimistic about getting it done.
Don’t read next paragraph if needles scare you – or perhaps do!
On Monday I mentioned that I was to start on daily injections into tummy skin of anti-coagulant Clexane to stop DVT in left leg from getting bigger, and perhaps disperse it. Anyway the good news is that this injection is NO BIG DEAL, once over the hurdle of poking in the needle for the first time. It is so fine that you can hardly feel it, and then the injection itself has NOT STUNG, which can happen. I wonder if it is the same for insulin dependent diabetics including children who seem to have no trouble doing their own.
Procedure accomplished. The doctor (Dr Nicholas Carroll) came to see us to ask me questions and to give us lots of clear information, and I signed the consent form. I was then wheeled into the recording room, while Rob waited for half an hour or so.
I can remember having the throat spray in the recording room, lying down on my left hand side, with the thing in my mouth to bite onto and keep mouth open. Sedative was then administered which Dr told me would make me very sleepy, and I remember nothing more until I woke up in the recovery room about 2 hours later, some time after it was all over.
The doctor then told us that he had succeeded in carrying out the procedure as planned.
I may post more information when I am up to it.
This is clarify things as I may have mentioned this, but not clearly enough.
Very briefly, we are off to Addenbrookes hospital now for appointment at 2pm, for a procedure called
Coeliac Plexus Neurolysis (CPN)
using endoscopy with ultra sound probe to visualise the nerve plexus and, if so, to inject something containing alcohol (phenol?) to numb/kill the relevant branch of the nerve. This nerve is often impinged on by my kind of cancer.
This may or may not reduce at least some of pains I get, and over the next couple of weeks, if it appears to have worked, my pain killers will be reassessed and maybe reduced. But do not expect any other immediate news of this.
I will be under mild sedation for the procedure, so I may have rely on rob to take notes of what they tell me, and whether they were able to perform the nerve block or not.
Long day today. Rob came with me, legs are not good, and all muscles rather weak so I had comfy ride in wheelchair for much of the day. Rob spent some time waiting around with me, and a lot of the rest going to and from to deliver prescriptions and pick up meds (twice).
On arrival 11am, with no wheelchair as yet, we were taken straight in to see Doctor McDermott, bypassing blood tests and weighing, because I was not feeling so good. He agrees good idea to go for the nerve block on Friday, but warns me it does not work for everyone. Meanwhile the legs problem has to be lived with; it is usual in conditions like mine.
I said I did not want chemo to start again this week, as I already have enough to contend with, so it is postponed until next week. Apart from anything else, my appetite went down to zero and has only recovered slightly in last 2-3 days. Doc agreed that a delay would be OK.
Rob then drove me to the Wallace Centre, 11.30 to 12 ish, for me to rest there while waiting for ultrasound of legs at 2pm. Rob to and from pharmacy then went for a bit of a walk.
The ultrasound of legs was intended to be a double check that there were no clots. Two radiographers collaborated on this recording. Right leg clear or nothing big enough to show up. Left leg there is a clot high up. So back to Dr McDermott who prescribed daily Clexane, a blood thinner. I will attempt to do this myself in tum- oo er, ouch – it stings a bit.
An aside : The radiographer who did the ultrasound told us to wait in their reception for someone to come and see us and read the report. However after quite a wait Rob went to see how long they might be, and the radiographer said he had made a mistake and we should go back down to the Oncology clinic. On arrival there reception desk said it was a different clinic… no idea what we should do, sending us on a wild goose chase, starting in the chemotherapy day unit. Eventually I caught sight of a nurse in charge, Claire, who sorted us out, and Dr McDermott was actually available to see us fairly soon.
Home now listening to Just a Minute on Badio 4 via computer in bedroom.
There we are boring update out of the way. It’s hard to find anything interesting to say when I have not gone far. I am not about to go on long philosophical ramblings, at least not in this part of my blog.
My current inactivity is a vicious circle of increasing weakness unfortunately, but difficult to reverse it. I must try somehow.
News below.
Update : Activities still restricted; appetite returning slightly as week off progresses; OK in myself but not getting out of bed much (well no one is offering £10,000). The systemic problem causing leg swelling is being monitored, and there is action pending in the pain control investigations.
Weds 23rd we went to see palliative care consultant, Sr Saunders (based in Arthur Rank House up Mill Road), who filled in a few gaps in the information I have been receiving so far, and possibly vice versa as she had learnt of me via my notes and conversations with Macmillan nurses. I think she had thought to save a time delay waiting for an appointment in her pain clinic, she would send me for nerve block asap, not realising that I was not getting enough information to decide whether or not to have the nerve block, not even knowing that the appointment on 2nd Oct was for the nerve block itself. Dr Bakker, my GP, had rung Dr Saunders and this triggered my appointment with Dr S the following day! I was very pleased, but it is another example of doctor not realising that nurses are not in a position to pass to and fro the full story.
The important piece of news is that an unexpected appointment for an Endoscopic Ultrasound is actually an appointment for a radiologist or similar to perform a nerve block., if they can, and if I agree. Dr Saunders gave me a lot of information about this which reassured me that it is worth trying at this stage.
The nerve block will be attempted on Fri 2nd October, ie next week. Sometime over that weekend I will post on here to say whether it has been done or not, but it could take anything from a couple of days to 2-3 weeks to know for sure. During that period Dr Saunders will assess things and at some stage it may be possible to reduce pain killers.
Today I go to Scarlett’s birthday tea – I get into car at the door here, out of car the other end, and short walk into house. I am usually OK in the car after a few minutes for any spasms to settle down.
Rob continues to keep me supplied with lurid vegetable juices, and yesterday a new purple smoothie made from wonderful blackberries picked by Mary, plus grapes, apple, yoghurt, milk.
I did not make it to my book club last night. We have been reading “Midnight in the Garden of Good and Evil” by John Berendt, based on a true story set in Savannah, Georgia, USA. It is a great read. Ideally, I think, you would read it before seeing the film, with John Cusack the narrator, and Kevin Spacey the central character, but the film is good in its own right.
I continue to have visitors, who brave my sick room, and take their chances on Rob’s desk rocking chair which, to the unwarned, feels as if it is about to tip you out backwards.
One visitor was Kate O. who is off to Maine today, managed to drop in yesterday before going. I have not seen Kate for years; seeing people whom I have not seen enough lately has one of the perks of being ill.
My one week (in four) off chemo, so no trek to Oncology – no intravenous, nor any tablets until next Monday, when I start my 6th month, ie it will be the last 3 weeks before a longer break (I think). The chemicals washing around in there no longer clear themselves over a one week break.
I am doing OK at the moment in that, overall, the pain is taking over less often, but this has been at the expense of restricting my activities hugely. It seems that I may be a suitable candidate for a nerve block; I should hear more about this from the pain team in the next couple of weeks. The aim is to reduce pain, remove some pain killers if possible, thus increasing my ability to do live life more fully. That is the hope.
A few nights ago Viv and Claire came round to watch “Mamma Mia” with me in the smallest cinema in the world – my bedroom. Rob set up his computer for us, then made himself scarce – he does not like musicals or Abba. Thank you my other Viv, and Sasha for the present.
Later this week is Scarlett’s birthday, so I shall conserve all my energies to get to her birthday tea, after school on the day! Yes, she has just started school.
Sunday Viv came over and we went to visit my mother for the afternoon. She is doing well. Someone had asked after me so she had rung Rob in the morning to ask how I was. I reminded her that I have a tumour, which is being treated. She said I suppose you are coming to terms with it, or something like that.
This week has been relatively pain free, although it was aggravated during the pottering about at the hospital on Monday morning.
Thanks to the Oramorph I kept paint controlled during Monday night, leading to great sleepiness yesterday, which anyway I always leave free for recovering from IV etc, and today Wednesday I have not done much.
Other things are getting harder now. Taste and appetite is very low, so eating is a bit of a chore – very odd for me! Ankles and feet are swelling – an indication that some protein or other is low, whether because it is not being produced, or because it is destroyed by the chemicals produced by the cancer itself. The GP mentioned albumen, and memory from O’level biology said “white of egg”” and it occurred to me that this could be related to eating habits changing lately, so I must get back to the egg a day, and the meringue.
One reason for not writing in here so often is that there is no consistent progress to relate. Pain there – unhappy; pain gome, happier. In the next couple of days I should get a further phone call from the pain control team via the Macmillan nurses, to tell me what options may be available, depending whether a nerve block is possible or not. Today I do not feel too bad because pain is at bay! On the other had, I am not doing much.
Tried to ring district nurses today regarding avoiding a bed sore, as all my resting and sleeping is pressing on same area, and our GP surgery answer machine has been saying “surgery is closed” since lunch time. I think they have a meeting sometimes, but it seems surprising that it is just “closed” meaning you have top go to out of hours numbers. Too late I realised that we do have another number which may have reached our own district nurses. But by then it was after 4pm.
Ah well. Rob has gone to Boots to see what he can see, and to fetch me some Complan on prescription. I now have to accept that I am an invalid, OK it has taken a while, and still hope that things may improve a bit, but am no longer so sure that they will significantly. Rob is continuing to produce juices for me. This is no fun for him.
All the above is a bit tedious, but just so you know.
First the update on my wellbeing. The pain I was experiencing is now at bay, or so it seems, although I have not pushed things very hard lately. I have no idea whether it has responded to the low dose Amitryptiline (NOT in my case an anti depressant) or for any other reason, such as taking it easy, eating differently or whatever. It is apparently common for this sort of pain to vary for no discernable reason.
Possibly because of being less active lately I have slightly puffy ankles, and combined side effects of chemo plus Amitryptiline has given me a sore mouth, which I am hoping will not get worse.
During this week I have had a few visits, and an evening at book club. On Saturday afternoon Rob and I visited John and Rhonda at their herb farm in Chatteris, which we were visiting for the first time. They moved there more than 18 months to two years ago, but they have been super busy renovating the house as well as getting the polytunnels going and the garden tended etc., etc.. We too had hardly any time to spare when I was working and later running out of steam since last September. Well, I was very impressed with what they have achieved out there so far, and the business is well established. Here is their web site
http://www.nicholsonsherbfarm.co.uk/
One of my visitors was a medical student currently doing her GP experience, and I am one of her projects. She will visit again once or twice, and write me up! Serious Illness from the patient’s perspective. She may eventually become a surgeon, so it must be good for to learn in this way.
Yesterday I got on bike, to try to build myself up a bit. It was tiring but good. I went along our side of the river, from Midsummer Common, past the gas works, oops I mean Tesco and flats, on to Stourbridge common, under the railway bridge and on to Fen Ditton, continuing along the river meadow when the tarmac path turns right. There is an awkward kissing gate not easy to get through with a bike, especially when you feel a bit weedy, to get on to the road up to the village. I did not go on into the village this time, but turned on to the tarmac path opposite the church which goes back towards the Ditton Fields area of Cambridge, then skirting the houses, along the side of the meadows, I came back back to river side near the railway bridge, and thence home. It is a treat to have all those paths so near to home. It was a lovely evening with plenty of singles and doubles skulling, and 8s rowing. Along the bank all the way to Midsummer Common there were joggers, walkers, with and without push chairs and/or dogs. It is amazing how many are also on their mobile phones. It would be a challenge for some people to go somewhere without their phone – so much does everyone want to feel reassured they are not alone, or something like that. Of course I did have my phone on me! There seem to be more boats than ever moored along the Cam here, many lived in. There is a large community there, they even have their own web site.
It was nice to see the cows on Midsummer Common, which have been back for a while after various fairs etc. plus a period of rather dry looking grass.
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