Archive for the 'Post Hospital' Category

Wednesday 18th September… blood!

I received my two units of blood yesterday! I was feeling pretty rough when I went into the hospital, but I was soon canulated and the first unit started over a period of two hours. No adverse reactions and my observations improved of the course of the transfusion – increase in blood pressure, reduction in pulse rate and in respiratory rate.

So as soon as the first was done in went the second, again without any drama.

The difference was obvious when I got up to leave! While there may not have been a spring in my step, I certainly found walking easier and o felt more alert! Even my appetite improved!

One thing the nurse said was that many people noted the improvement the next day however I haven’t noticed much change from yesterday. That might be because I didn’t sleep that well last night because of a bit of back pain.

I had a bit of a scare this morning, waking up feeling hot and clammy and a temperature of 37C – a level indicating possible infection. However once up and about, that started falling and is now at my normal of about 36.2C.

So with clinic next Monday at an unspecified time, Onwards and Upwards!

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Saturday 14th September… bearing up! (Grrr)

I had clinic last Monday and took my overnight (or strictly, over week bag) with me as I was expecting to be admitted for mor cytarabine on the ward. However I was told that a better solution was to have more Subcutaneously as the release profile is gentler and the individual doses are lower. The normal course is 5 sessions on consecutive days, but I was to have 2 on Tuesday and Wednesday.

I didn’t get my blood results in the clinic, but they were phoned through and showed an increase in WBC and a slight decrease in Hb. Not brilliant news. I am still lethargic with low energy levels, and a planned trip way had to be postponed 🙁 the third one this year.

I have also been in a bit of back pain which I think is pressure related from my gut as it seems to come on about 6 hours after eating. This gradually go worse as the week progressed until the last two nights when it has been milder and shorted duration! Progress??!!

The chemo itself was a doddle – taking 30 seconds for a sub-cutaneous injection on my abdomen. The hardest part was summoning the energy to walk to the outpatient department!

I have my next clinic on Monday so I hope there will be an improvement in blood chemistry and we can move back to a less aggressive regime.

Once again I am indebted to the supportive friends who have taken me to and from the hospital, and sent me messages of support during the inevitable dark moments!

But I’m feeling chirpier and better in myself, so I’m more than happy to say (go on guess…)

Onwards and Upwards!

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Friday 23rd August…Taking stock – again! :)

It’s been a strange week, but really good having my parents visiting and helping me out.

Yesterday I went back to the hospital to pick up the Ibrutinib and have a blood test. I also took the opportunity to chat with one of the clinical nurse specialists (Amy) abut some of the otherside effects (i have some lymphoedema in my ankles) so it was suggested I wear the compression socks for a while, and confirm my next clinc will be a week on Monday (this Monday being a Bank Holiday)

My blood results camee through and were rung through to me by Amy. No real change apart from my WBC which is still creeping up. However she referred them to Prof Johnson and she rang back later to say that he wasn’t concerned. It could be a temporary side effect of re-starting the Ibrutinib.

However, as its over 10 days until clinic, and I have some blood test forms, I rang Amy this morning asking if it would be a good idea to have a blood test next week, just to keep an eye on things. She agreed tat it would, so I’ll go in next Wednesday. Got to be pro-active! 🙂

My parents have just left, having stocked up my fridge!

Going out is a bit challenging, partly through lack of confidence and I need to develop coping strategies for the loss of peripheral vision. Thee are two problems, one is that anyone overtaking me (on foot) on my left hand side doesn’t appear until they are about three feet ahead when they appear out of nowhere – very disconcerting!.. The other is people who suddenly disappear as the move into my blind spot and I then bump into them. Its all a question of situational awareness! The other thing is to ensure I close cupboard doors as I might not see them open and bump into them. I guess I need to move slowly and do a good scan of an area for potential hazards. All takes time.

But overall, and with cautious optimism, Onwards and Upwards! 🙂

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Wednesday 21st August… Escape!

Yes, I managed to escape on Monday afternoon and I am now at my home with my parents visiting (and looking after me!).

I think I slept for over 10 hours on Monday night, and felt a lot better for it. I still feel a bit tired, but my Hb is still quite low and my mouth is still quite sore.

We have been out shopping, which has been OK, although the lack of left hand side peripheral vision takes some getting used to – something Im sure I will adapt to eventually. Its a question of situational awareness, and remembering where objects are although I cannot see them. But my conscious brain is already compensating for that, by generating a false image (as it does anyway) but the problem is with objects that move unpredictably (like people!) as there is no peripheral information available on the LHS to update those images. It’s just going to take time.

But it’s good to be home again. I went into the ward yesterday to pick up my “party bag” of which the most important was the ibrutinib. Alas it wasn’t there, and it wasn’t until I got home that I realised it was at the outpatient pharmacy. However Ihave to go in tomorrow for a blood test, so I can pick it up then – I have enough for another four days.

So a pretty grim week – the discharge notes did confirm neutropenic sepsis – and the minor stroke really was not welcome, as it is likely to have a major impact on my life (unless I do get some improvement over time), but I’m still here – and I hope moving Onwards and Uwards! 🙂

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Saturday 3rd August… And home!

Yes, made it! After a day of nothing much yesterday, I finally saw the doctors and was allowed home! My blood pressure is still low, as is my red cell count and platelets (although both improved after the transplants) but as this is about a week after the cytarabine, this is expected to improve. I am borderline neutropenic, but that again is expected to improve spontaneously.

The blood test showed that cortisol levels are very slightly below normal, but not thought to be significantly so.

I did sleep well last night though – good to be back in my own bed!

Clinic on Monday so we’ll see what the blood tests show then!

Onwards and Upeards!

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Thursday 25th July … Blood test and result

As the title says, I went into the hospital yesterday for my blood test. As I was leaving, I bumped into one of the Nurse Specialist (Amy) so we had a brief chat. She did say she would let me know the results if they were available by 5 o’clock, but no call came!

However I did get a call this morning about 5 minutes ago!) and it’s good news!

White cell count is down to 40 (it was peaking at 280 10 days ago) red cell count is up slightly at 111, and platelets are stable at 150. Normal white cell count is around 11.

Next blood test will be on Monday when I go to the clinic.

Onwards and upwards (or downwards is the case of white cells! 🙂 )

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Wednesday 6th February… More frustration, but maybe some progress?

I resolved not to chase things up today, so I was pleasantly surprised to receive a call from the the CNS office apologising for not calling me back yesterday, but saying the Ibrutinib was here and ready for collection (Clinical Nurse Specialist) – but she would check that it was in the outpatient pharmacy before I came out to get it. Great excitement – until I received a call 5 minutes later to say that it wasn’t there and it wouldn’t be here until next week. I don’t know if this is because of the conditions of supply or just a bureaucratic mix up, however I have a clinic appointment next Monday (supposedly to review how I was getting on with it) so I may be able to do some digging then – not that it s likely to speed things up. So somewhat unsatisfactory.

I do have a plentiful supply of the steroids so I’ll keep going on those. I suppose it doesn’t help that I have had a bad cold for the last three days, which is making me feel a bit lethargic and wary, I don’t really want infections at the moment (although I’m not neutropenic) but I hope I will be on the mend by the weekend.

So feeling a bit disgruntled at the moment, although I have some reassurance that the situation is being monitored more closely and I hope my name is near the front of the minds of all those people involved in the procurement!

And on the plus side – more toast and marmalade! 🙂

So, rather slowly, Onwards and Upwards.

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Tuesday 5th February 2019… Frustrated and impatient

As you might guess from the title, still no sign of the Ibrutinib. I waa told on Friday that it would be here on Monday. Yesterday I heard that it was probably at the oncology pharmacy (where it goes to be dispensed and then sent to the hospital pharmacy for me to collect). So today, I rang again and eventually discovered that there was some hold up at the oncology pharmacy who suggested that “I ring the consultant’s secretary to find out what was happening”. Excuse me – who should be doing that?? Still, I can’t fault the outpatient pharmacy who have done their best and kept me informed.

Anyway in the spirit of enlightened self interest, I did ring the medical secretary and got a very helpful and proactive response. It seems that there is still a hold up with the paperwork, and while I don’t know for certain, I suspect that the the delay might be in an already identified non-proactive department. Very frustrating.

Meanwhile, I have been doing a bit more research into Ibrutinib (I will post a page!) and it seems that (like several other drugs) it interacts with grapefruit and seville oranges! So it looks like

for a while. And while I like marmalade, I hope it will be a long while as it will be while I am taking the drug. Still, every cloud has a silver lining, while I’m waiting for the paperwork to be sorted, I shall be enjoying

But this situation is very frustrating. I just hope it arrives before the clinic follow-up next Monday!

Onwards and Upwards (albeit somewhat slowly at the moment)

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Friday 1st February … A slight set back!

I was hoping to have started the Ibrutinib yesterday, but when I rang the pharmacy I was told that the prescription hadn’t been written and there was a delay “with the form”. This was slightly worrying because I was getting to the end of the steroids and I needed new supplies!

However a quick call to the Clinical Nurse Specialist (Amy) established that there had been an error in the application form (this is a learning curve all round I think!) but it had been resubmitted, and a prescription for the steroids had been raised for collection today.

So quick trip to pick up a reduced does of steroids and the pharmacy say the Ibrutinib will be here on Monday.

So slightly frustrating because I really want to get started on this, but there is nothing I can do to influence the course of events, so I just have to be a patient patient and enjoy the weekend! There are still huge positives, the steroids have helped, and while they have been hugely beneficial, there are long term implications, so it’s good that it is being reduced!

I suppose I’m keen to start because there is also a small risk that I might not respond well, and I’d like the reassurance that I will, but again nothing I can do about it! At least I will know as I expect to see the lump shrink, just as I have with the steroids! Nothing like a bit of re-inforcing positive feedback.

So I think a relaxing weekend and fingers crossed for Monday when we will continue…

Onwards and Upwards!

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Tuesday 29th January…Update and good news!

I had a quietish weekend after the ‘excitement’ of the last three weeks – my parents visited which was good, and I spent some time getting the house back together after my lengthy absences.

But in reality this was just marking time for the follow up appointment scheduled for yesterday afternoon, when I was hoping to find out the direction my future treatment would take. Would it be the Ibrutinib or conventional chemo?

So it was with some trepidation that I turned up at the outpatient’s clinic to see what was happening – but prepared for either. So it was with some surprise and relief that I have been accepted for the drug on a named patient basis. I think the team at Southampton were surprised as they have not managed to get the drug on that basis, so it was purely by the efforts of the team at Guys. Maybe this will provide an ‘in’ for the Southampton team – I hope so for the sake of other patients who may be in the same position. (I will write a page about the politics and background of Ibrutinib).

So the drug has been ordered and should be here tomorrow or Thursday. It is a tablet that I take once a day at home, and go into outpatients for periodic monitoring. It is well tolerated with few side effects, so a much less unpleasant treatment plan that the alternative.

It is a drug I will keep taking for as long as it works. In relapsed patients tis is typically 2 to 3 years (but typical is a statistical type term and applies to populations, not individuals)

So this is buying more time – but in effect that is what my treatment over the last 20 years has done. This does not preclude any other chemo or treatment further down the line, and there are new treatments under development. But this gives me back some control and ability to plan things for (I hope!) the next 12 months or more (provided I respond well to it – which will be revealed on the next few weeks)

So I will keep you updated with progress. I have also released this to the wider internet for the time being – I’ll see how that goes!

A view over Southampton Hospital

So very much Onwards and Upwards! 🙂

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