Peter’s Hospital Diary

And there is some good news, but to keep you all in suspense, I just want to say a few things about the blog!

The blog software runs on my own computer under the Linux operating system. Now because I use Linux, this doesn’t support Internet Explorer so I usually use Opera or Mozilla Firefox as the test browser. The blog software is pretty standard, although I do tweak the views and themes to get it as I want it, and I run a couple of blogs (including Elspeth’s) which all use identical code. So I was surprised to get a report saying that the pages on this blog don’t always display correctly, and sure enough, when I checked it on another computer with IE6, it doesn’t - and I’m at a loss to know why!

I’m not a fan of IE - it doesn’t conform to open standards, and has strange quirks - IE7 might be better - but I haven’t tried it. However both Opera and Firefox will run under Windows, and I personally think they are better browsers than IE6. They will work straight off the download, but both can be optionally customised, and Opera can be made to look just like IE6! Both are ‘tabbed’ browsers which means you can have multiple pages open at any one time.

I urge you to try one of them - you can get Opera here or try Firefox here. You have nothing to lose, and they will display “Peter’s Hospital Diary” to best advantage!

Right - on with the news! I had a call from Robert Carr on Monday. Robert is a leukaemia specialist, but has looked after me since I was first diagnosed in 1999, passing me over to specialist teams for specific treatment (such as the transplants) when required. I haven’t seen him much for the last 12 months, while I have been under the care of Dr Kazmi and Linny, but I know he takes an interest, and has been a tower of strength and support over the years.

Anyway, he happened to be in the PET centre on Monday, and mentioned my case to the team there. The upshot was that there looked to be less disease active in this scan than in the previous one (before Christmas), and that my case was going to be discussed at the multi-disciplinary meeting yesterday afternoon, with the possibility of a ‘phone call last night.

Well the call didn’t arrive, but the lovely Linny has just called this morning, confirming the good news, and we have discussed a way ahead. While more chemo might be a good idea under normal circumstances, the reaction I have have had tends to preclude it, especially as the ingredient that it probably the most useful therapeutically (the Doxorubicin) is the one causing the problems. However I am going up to the clinic tomorrow to receive a dose of donor lymphocytes to attempt to trigger the Graft Vs Host Disease, and the wanted Graft Vs Lymphoma effect. As Linny said, “I continue to surprise them!”

Now this is a long shot - no guarantees - the dynamics of the disease has changed, etc etc, but it is an active process, and as I said - I’m not giving in - so this is welcome news indeed! As for myself, I feel so much stronger than I did 10 days ago - and that in itself has strengthened my resolve and will. I have put on about 7 Lbs (still only 10 stone!) but I am now eating well. I’ve even managed a bit of housework! Last night I had lamb casserole, broccoli (vegetables, Liz!) and mashed potato - and some syrup sponge and custard! So my appetite is definitely better. Cheese on toast at lunch time was good too!

Finally, Hilary (friend from primary school!) asked what it is about the fetish for bacon and sausage sandwiches! Sorry Hilary, it’s a boy thing, and if you have to ask, I can’t explain!

So with this news, I think I am justified in a cautious “Onwards and Upwards” - but remember it is a long shot! But to put the icing on today’s cake, the sun is shining, and the birds are flocking round the bird feeder (including some goldfinches!) So yes - Onwards and Upwards!

Sorry no new photos of Olivia this time - maybe next time!

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Ok, I’ll cut straight to the chase as I know that the attraction to the blog is the thought of more pictures of Olivia! Upstaged by my (lovely) grandaughter! These show her with Mum’s Teddy Bear, Sebastian.
There is another one a bit further down the page!
As for me, yesterday (Sunday) was another good day.
My sister came to visit in the afternoon, with her husband and my Neice and Nephew, Charlotte, and William. We had a pleasant afternoon, sitting in the conservatory with the sun streaming in, toasting our feet on the underfloor heating!

Yesterday was also a bit of a food-fest too - breakfast was a couple of rashers of bacon on some bread (I’m not sure I can manage a full sandwich - my saliva supply is still a bit limited) and I also managed a sausage. Mid afternoon I felt a bit peckish (as you do!) and managed another sausage on some bread (in addition to a few ginger biscuits!)

Last night Tom and Vicki brought Olivia round, and we had a full Family Sunday Dinner, everyone here including Katie, who had come back from Bournemouth for the weekend.. Dinner was probably the biggest meal I have eaten since before Christmas. We started by toasting Olivia (with some bubbly!) and then went on to roast beef with all the trimmings, A lovely piece of corner topside from our local farm shop. I managed 2 helpings, some vegetables, and some horseradish, something I couldn’t have contemplated 4 days ago. (Ok I did have a third helping of beef - but it was cut thinly!) After that we had a syrup sponge. I thought I was a bit full after dinner, but two (small) helpings with lots of custard seemed to disappear quite easily! Sorry that this has turned into a food description, but it seems like a major milestone!

This morning (same breakfast) we had a visit from my local GP. I haven’t been registered with a GP before - my primary health care being the concern of work, but as the GP has access to support services that might become necessary, it seems to be a sensible precaution!

However, enough of me - here is the final photo (this session!) of Olivia!

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First of all, my apologies for the delay in posting - don’t worry, I am OK, we have had a busy couple of days! And thank you all for your posts. For those that haven’t posted comments before, your first comment goes into a moderation queue (which is why it doesn’t appear immediately) but once moderated, subsequent comments should appear straight away.

We went up to St Thomas’s on Friday for my PET scan - number 19 - which the staff think is a definite record! It was great to see Margaret, the unit manager, and Sally, who is one of the radiolgists on the unit, but I was also greeted like a long lost friend by the lovely technicians that administer the tracer, and the receptionist! I was delighted that Viki, the specialist transplant nurse, was able to get over from Guy’s to see me. Viki has been a tower of strength over the last 8 years - really from first diagnosis, and through the various procedures, and it was Viki who gave me the donor stem cells last year. Friday was (sadly for Guy’s) her last day at the hospital - she is moving on to pastures new at King’s College Hospital - a great gain for them, and I wish her all the very best in her new venture - and my heartfelt thanks for all that you have done for me.

The PET scan itself was uneventful - the usual 90 minute or so wait while the tracer is taken up, followed by the scan itself, taking about 30 minutes. The scan seemed quite quick - perhaps I fell asleep! I certainly felt very relaxed! We finally got home at just before 5pm - it seemed a long day!

Yesterday was quite busy too. My friend (Partner-in-Crime) and fellow Blogmaster, Mark, came round for a cup of tea, then we had a boys’ trip out to Currys and PC World. Nothing too exciting (a new vacuum cleaner, a Freeview box and a browse) but it was good to get out of the house for a while. My strength is certainly returning, as is my appetite (I am really enjoying bacon sandwhiches again - and this morning I had bacon and sausage sandwiches!) I need to put on a bit of padding - sitting on a wooden chair is quite painful!

However, enough of the talk about about me - I know you really want to see some more photographs of Olivia! Richard asked if I could put any video up - I am investigating that. One word of warning - one of the photographs shows me just after I had come out of hospital. Let me assure you that I now look a lot less fragile than I did when the photo was taken! (And my hair is starting to grow back!)

So here we are…

I hope you like them!

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I missed the anniversary of the transplant last week as I was in hospital, but it is probably worth remarking on, although this time last year I wouldn’t have expected to be where I am now!

Firstly, can I thank you all for your comments and expressions of support - I have said so before, but it really does make a difference to know that you are are all thinking of me, and I draw great strength from it!

As you might imagine, the last couple of days have been a time of great adjustment. Tears have been shed, and I’m sure there will be more, but we have reached a ’stable’ stage for the moment!

It is ironic that I have been lecturing on bereavement counselling for Leukaemia Care, it takes on a slightly different perspecive when it becomes personal! Certainly knowing about the grieving process, and anticipatory grief gives insight to why my emotions are as they are, although that knowledge doesn’t enable one to short circuit the grieving process! I certainly feel angry at the potential loss of my remaining life, and the retirement that we might have enjoyed. Equally I recognise the arrogance in that statement - none of us has any “right” to an allotted lifespan, and I have had a good and interesting life. Perhaps the saddest thing is that Olivia may have no positive primary memories of me.

However, that is defeatist (or realist? :)) and there is much to do. Tomorrow I have a PET scan at St Thomas’s - number 19! - so we will see exactly what is happening, and I am still holding out for the donor lymphocytes!

On a positive note, I am eating well, and I think I might have put on a little weight. Certainly my face seems less gaunt, and I think my hair is starting to grow back! I certainly feel a lot stronger than I did at the start of the week, and with that physical strength comes back the mental determination not to give an inch without without a fight!

Finally, I promised you some more photos of Olivia. I have a selection taken during the last week, so I will sort some out and process them to a suitable size for the blog and post them over the weekend!

Is “Onwards and Upwards” still appropriate? I’m not sure, but it is certainly preferable to the alternative!

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Well, maybe not a new me, but certainly new experiences!

It has been an interesting 10 days or so, and this will be a long post, so settle down and I’ll tell you about it!

Mark was quite right when he said that I under-estimated how unwell I was. I suppose it came home to me on Sunday morning (14th) when I was thinking about getting up, and finding the prospect un-appealing, that I realised that in 24 hours I was supposed to be at Guy’s - and I just couldn’t do it. The fact that I had spent the previous two days in bed should also have alerted me to the fact that things weren’t well. There were some slightly surreal moments too - Mark said that he had visited on that Sunday, and that I looked unwell, I also had a visit from a friend, Peter - who is also our Vicar. He did arrive wearing his clerical clothes, and it was a bit of a shock to open my eyes to see this figure in black leaning over me! I did wonder where I was for a moment!

Anyway, having decided that Guy’s on Monday was out of the question, the only other option was to get me to Southampton General for some treatment, and the only realistic way was by ambulance. So an ambulance was called, but on arrival, the crew were distinctly hostile. It didn’t help that they had no knowledge of the effects of chemo, or how unwell I was. It did help that I had a letter of referral to Southampton, written by Guy’s, but we got the distinct impression that they thought we were time wasters. However that changed when they saw I was having difficulty breathing, and at that point they offered oxygen. Meanwhile I decided I needed to wash my hands. Funnily enough, I had difficulty reaching the tap, and the next thing I knew, I was on the floor of the bathroom having blacked out. I think that was the pivotal moment for the crew, and they eventually got me downstairs and into the ambulance for a trip to Southampton. The only disappointment was that we didn’t go with lights and siren!

I was admitted to A&E, and then eventually onto the ooncology ward, where they started immediate re-hydration and anti-biotics. My blood counts were a disaster - haemoglobin about 7.5, platelets 5, neutrophils about 0.1 - low enough to warrant being in isolation, and in fact after about 2 hours on the open ward, I was transferred to a side room, which was where I stayed for the rest of the week.

I was also given some pain relief for my sore mouth and I was given a cocaine mouthwash. I had had that before at Guy’s during one of my transplants, but this seemed stronger, and the relief was immediate - and just being pain free made a big difference. Once that was sorted, and I was moved into my side-room, the rest of the treatment continued - anti fungal drugs as I had a thrush infection in my mouth, loads of saline to get me re-hydrated (I must have had about 14 litres or more during the week) and lots of anti-biotics as my neutrophil count was so low. I also had a bag of platelets and three units of blood to get some semblance of blood normality back.

The week was not without its moments! I mentioned that I had the cocaine mouth wash, and that was the first of many, however I began to notice that after the mouthwash, I was becoming almost garrulous - I couldn’t stop talking and I had a real feeling of euphoria. It wasn’t until about the 5th time it happened that I realised I was on a cocaine high. The stronger solution and my damaged mucous membranes meant that I was absorbing a ‘recreational’ dose - and when I realised that, I found it quite frightening. I did have to apologise to some of the staff who I must have bored, but they found it quite amusing! I decided to stop taking it, but when I discussed it with Dr Katia, we halved the strength, and so it only had the desired effect of pain killing. Was there a little twinge of disappointment? Maybe, but the fact that the drug had such a mind altering effect really was scary. I can see how people become psychologically addicted. While discussing it with Dr Katia, I did say that I have NEVER used drugs recreationally - she smiled at me and said “Well, you have tried it now” It was an experience!

And now is the time to give a huge thank you to the medical staff on C6 ward. On the medical staff, there were Drs Katia (Registrar) and Dr Helen, who admitted me from A&E and started the treatment, and Dr Jane, who as the SHO had day to day care of me. They are all part of Professor Johnson’s team, and looked after me really well. I must also thank the nursing team, who yet again showed that it is the people that go to make a good team. I always feel a bit diffident at this stage, because there are many more nurses whose names I didn’t catch - but my thanks goes to them too. However the ones whose names I did catch include: Beatrice (who looked after me on arrival), Kevin (Charge nurse), Terry Clare, Rosie, Allison, Mel, Vicky, Sheryl, Susan and Reena - and many more. Thank you all - yet again it was a demonstration that Oncolgy nurses are a special breed. Susan was on nights during my stay and so did much to look after me at that time.

My stay lasted a lot longer than the Thursday. However I found hospital food to be difficult to eat, partly because it didn’t appeal to my suppressed appetite, and partly because although the mucous membranes started to heal, I still had a painful ulcer on my tongue that made swallowing difficult - even with the mouthwash.

However, by Saturday I was ready to leave, knowing that my nutrition would be better at home. Sadly my platelets were still low, and Dr Katia was reluctant to discharge me, however on Sunday, they had crept up a little, and although not a dramatic improvement (13 to 15) but with some misgivings, I was discharged, again with a small pharmacy stock! It was so good to be home, and to have real food cooked for me!

On Monday I had an appointment at Guy’s for a review, and we were driven up by a friend of ours - trains were banned! I had hoped that I might have some donor lymphocytes, but instead the news was not good. Basically Guy’s feel that there is little more worthwhile treatment that will make a difference, and that the future lies in palliative care. Put baldly, it means that my life expectancy is now measured in months rather than years. They are arranging for a scan to see exactly what is happening, and if the disease has been knocked back, there is the possibility of DLI, but it takes a while to act, and there is the risk that the disease will overtake it, but we shall see. There is also the possibilty of an experimental drug called Velcade, but again it is a slower acting drug, and the disease dynamics again come into play. So not good news, and “Onwards and Upwards” doesn’t seem really appropriate. All I can say is that I will try to fight this every inch of the way! (Tough old bird!) And I will keep the blog going for as long as I can.

However, I don’t want to end this post on a sad note, so I take great pride in introducing Olivia Ellen, who was born at 8 minutes to midnight on 15 January, weighing 7lb 3oz! She is a cutie! The photo was taken when she was less than 24 hours old. And perhaps looking at that photograph, maybe there is room for a little “O&U”! I will post some more photos if you wish!

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Peter asked me to give everyone a quick update……

It was clear that Peter didn’t really appreciate how ill he was until yesterday afternoon (and as I visited him can vouch for the fact he looked very ill) when it was decided he needed some hospital care, consequently he got his first ride in an ambulance to Southampton General. There they have been rehydrating him and attempting to get his neutophil count back up to something approaching normal as well as treating his extremely sore mouth.

He called me this evening and sounded considerably better than yesterday (when I doubt he could even have held a phone) and told me about the cocaine mouthwash (very effective) and the other treatments he is getting. He will provide you the full gory details later in the week when he is discharged - hopefully Thursday.
All being well I will visit him in the next day or two and will take with me any comments posted so he doesn’t suffer too much from Blog withdrawal.

Mark

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I’m sorry I haven’t posted for a while. There was a milestone on Thursday, which was t+51, but also the anniversay of my admission to Guy’s for the procedure. I suppose If I had known what 12 months later would be like, I would have been disappointed, but hey-ho - I have survived another year!

So to this week - I went into work for the first three days of the week, but as the week progressed, my mouth became very sore (imagine eating stinging nettles!) and I took Thursday and Friday off - and spent most of the days in bed. (I am in bed now good old trusty laptop!)

One of the problems with the sore mouth is that it makes eating almost impossible. I do have the high calorie milk shake drinks, so I am getting some nourishment.

I am off to Guy’s again on Monday, blood checks and an echocardiogram. With a bit of luck I might get some oxygen too! I hope the GCSF will start having an effect - certainly once the neutrophils start increasing, the mucositis goes quite quickly/

So - through gritted teeth - onwards and upwards!!

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And with the holiday well and truly over, it was back to work yesterday! However not without its trials and tribulations!

I had a good weekend, appetite back, feeding up a bit (helped no doubt by the steroids that are part of the treatment) but yesterday evening the other side effects of the chemo started kicking in - the tiredness, sore mouth and throat etc, and my sense of taste has taken the expected nose dive. I did go into work again today, but not for too long - enough to read e mails and to prepare for a meeting tomorrow, then it was back home to sleep for about 3 hours!

However, I have started the GCSF injections - earlier than last time - so I hope that the neutropenia nadir will be less deep and shorter lived. I did have a call from Liz at Guy’s yesterday, saying that the echocardiogram has been moved from this Thursday to next Monday, which is when I am due to have the next set of blood tests, so I don’t have to go up to London this week!

Anyway, I know what to expect from the first cycle of chemo, so I guess I shall just have to grin and bear it!

Onwards and upwards!

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It was an early start to get up to the Day Unit for just after 9am, for what promised (and turned out to be) a long day!

I was feeling a bit tired when I got there - to the extent that it was remarked on, and the observations showed that my blood pressure was low, and my oxygen saturation was also a bit low - next thing I was attached to an oxygen cylinder! I must say oxygen does act as a quick pick-you-up - I ought to get a bottle for home! (As an aside, I am a qualified oxygen administrator - but only for diving related conditions)

I then saw Natasha (haematology registrar) who taught me a new medical term - that I was looking “slightly grottier” than last time she saw me - on Monday! (In turn, I am delighted to report that Natasha looked as delightful as ever :)) She also had a listen to my chest, and decided that a chest X-ray was required just to check that there was no infection present, so a porter was summoned to take me down in a wheel chair, and a smaller portable O2 cylinder tracked down, and off we trundled for the X-ray.

All this shenanigan took most of the morning, then it was a quick check with Rob (Specialist Transplant Registrar) to discuss the options. Apart from having a prescription for more antibiotics just in case there is a low level infection - although the chest X-ray was clear) we went ahead with the chemo. There has a been a response, although Rob could still feel a few nodes, so I might yet have a third cycle, although the final decision will rest on the response from this next cycle.

Once we started the chemo, it all went well. No nasties from the Rituximab, and the rest of the chemo (Vincristine, Doxyrubicin and cyclophosphamide) were all administered by Liz - one of the haematology specialist support nurses. I also had a litre of saline to make sure I was hydrated and to bring my blood pressure up.

You may remember that Liz joined the team last year, just before my transplant, and one of her projects has been to work work with other Liz (Ward Manager) to get Samaritan Ward refurbished. That is at last going ahead, starting in May, and will consist of 16 positive pressure, en-suite isolation rooms, and 3 negative pressure en-suite isolation rooms. (The negative pressure rooms are for patients with injections - the negative pressure ensures that the bugs aren’t pumped out into the atmosphere) There will also be a dedicated minor treatment area. The whole set up looks very exciting and will take about 6 months. There is an overall reduction in the number of beds, but coinciding with that, and to complement the trend towards day patient care, the day unit is likely to be expanded too!

I final escaped from the day unit at just after 4 (and thanks to Emma, who looked after me in the morning - during my ‘Grotty’ phase! - and to Louise, who made numerous cups of tea!) then it was a quick call to the pharmacy to pick up another small medicine cabinet of drugs to go with the ones to support the chemo, then home for 6:30, with, if not exactly a spring in my step, certainly feeling better than I had been that morning!

So get to work you toxic little chemicals - onwards and upwards!

(Oh yes - 12th night tomorrow - new theme on the way!)

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A short post today, just to say that I heard from Rob (SPR) this morning, and we are going ahead with the chemo tomorrow. The plan is to get it all done in one day, although if I get a reaction to the Rituximab like last time, it may well be a long day! So I suppose I had better make the most of my returning taste buds (bacon was good this morning - as was Christmas cake!) before the chemo blats them again!

Onwards and Upwards!

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