Archive for the 'Getting My Life Back!' Category

The final onwards and upwards…

To all friends, family and avid readers of ‘Peter’s Hospital Diary’,

At 1am on 18th October, my Dad took his final breath as the National Anthem played on the BBC World Service. Typically, in true Dad-style he went out fighting…

Optimistic and stubborn to the end, he received his last round of radiotherapy just that morning, assuring us we still had Plans D, E and F to go!

It was unexpected how quickly this came about but it was a calm and peaceful end to his battle. As he said in his final hours, ‘no one can say I haven’t gone out fighting’.

We find solace in the fact that he was surrounded by friends, family and wonderful hospital staff; knowing in his last moment just how much he was loved.

We are all so proud of the unwavering fight he gave and his dignified acceptance and tranquility.

Funeral preparations are underway, following his strict instructions, and we will be sharing details with friends and family after the weekend.

In the words of my Dad; ‘Onwards and Upwards!’.

All our love, Peter’s family.

We’d love to hear your thoughts, memories and anecdotes, or if you would like further information please email onwardsandupwards@swanmore.net

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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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Friday 6th September… In, out; In, out….

It is a week since I last updated the blog, as several of my loyal readership has pointed out! 🙂

You will recall that last week I was expecting to be admitted on Monday, after clinic, for some more cytarabine to get my white cell count down, but at a reduced intensity so that I get the benefits without too many adverse side effects.

So I duly turned up clutch my blood form and a large overnight bag at clinic on Mondays, having had a lift in from a friend.

I had the consultation where we discussed treatment options, then to my surprise suggested that I have the cytarabine as an outpatient, and as a sub-cutaneous injection rather than an IV infusion, with a follow up in two weeks. Sub-cutaneous apparently gives a smoother release of the drug, unlike IV that causes a large spike. I did suggest a blood test after a week, but that fell on deaf ears.

So a quick phone call to get a lift home and to arrange a lift in and I went home.

Next day I turned up for the chemo which took under 15 minutes from arrival to departure, giving me time to
Pick up a ready meal and some supporting meds, and it was home again.

My middle daughter popped in on Wednesday to see how I was and to take me shopping. I had been feeling a little wobbly, but we went anyway, however when we got to the supermarket and into the car park, she thought I looked to unsteady (I did feel light headed) so she took me home and then did the shopping for me, so I have more supplies for a while. It is perishable items like milk and veg that are likely to be the problem.

Apart from that, I have been OK this week, still a bit lethargic, and not sleeping to well because of twinges from a couple of enlarged lymph nodes pressing (I think) on a nerve.

I did ask the lymphoma nurses today what the blood results were – generally unchanged apart from the WBC which had gone up again :(. However, to my amusement, she said that it had been suggested that I have an interim blood test next week!! so as I have some spare blood forms, I’ll be doing that!

Meanwhile I have been researchingg any assistance I might be eligible for as a visually impaired person. I think I need a formal eyesight test to quantify the peripheral vision loss, so I’ll be looking into that later today.

I’ll be interested to see next weeks count, so I hope it will be Onwards and Upwards!

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Friday 30th August… Another Strange week

I have just been reminded by one of my readers that it has been a week since my last post!

It’s been a week of adjusting and, to some extent, recuperating.

I went into hospital on Wednesday For the blood test and a chat with one of the Nurse Specialists, particularly a couple of concerns as one of my ‘dodgy’ lymph nodes seemed to be getting bigger. I also assured her that I was free for the rest of the week if any treatment was planned.

The results were rung through later that afternoon: Hadmoglobin was about the same as before, neutrophils were up, platelets were also good, however my WBC is stillcreeping up, although not by as much as I had feared. Professor Johnson had reviewed Thame and had no immediate concerns, but the plan is to admit me for two days for a reduced course of cytarabine, which it is thought will give a good response while reducing g the side effects.

I can’t help thinking that it’s a pity that we had the bank holiday as that has delayed things – I was hoping to have more retuximab, but I suppose a rapid de-bulk (again) May make the rituximab/ibrutinib combination to get to work immediately.

Meanwhile I have been adjusting to the loss of peripheral vision. I managed OK in hospital until I was leaving. I was walking along the left hand side of the corridor. scanning for obstacles when I suddenly stumbled (luckily no fall).

I looked round expecting to see something on the floor I had missed, but actually a porter had pushed a(loaded) wheelchair in from the left, just behind me and I had tripped over one of the front wheels. I just didn’t see him on that side.

However I have had a small triumph today. As trains are likely to feature in my travel and activity plans, it seemed like a good idea to make sure I was IK getting to the station. So I tried it – and the first time I have ventured out for any length of time.

I’m delighted to say that I managed OK, and while taking it gently, it took about the normal time. There weren’t many people about (they are a problem as their movements are unpredictable!!) so if I was getting of a train with crowds, I’d probably wait a few minutes for it to disperse.

But it was a useful test, hugely reassuring and confidence building, and it was good to get some gentle physical exercise.

I have been very grateful to friends who have been to see me and take me out for lunch. It has been very much appreciated and made a big difference. Thank you.

So I have coped this week and I feel better in myself and a bit more optimistic about travel. I am still thinking about an electrically assisted bike, but I still have some visual disturbances (false images) which should subside, so I may wait a while!

But overall, I am more optimistic so… 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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Tuesday 8 July… Clinic!

It has been quite a rollercoaster of a week, from last Mondays decision to start more conventional chemotherapy, to the change on Tuesday to continue with the rituximab, followed by the admission and administration. I had a bit of an anxious weekend – not exactly feeling unwell, but not exactly feeling on top form – I suspect partly by the electrolyte imbalance. I had occasional heart pain, which is probably due to potassium deficiency. I did go home with potassium supplements which seems to have solved that issue!

Im also slightly down on magnesium and calcium, but it is though that they will resolve naturally.

So it was with some anxiety that I attended clinic yesterday, hoping that the reduction in white cell count would have continued. It was with a sinking heart that I heard that they had gone up, quickly followed by an explanation that it was possibly because that the drugs were flushing the white cells out of the lymph nodes into the blood stream, where hopefully they die off. The good news is that my other blood counts and parameters are returning to normal ranges. This explanation accounts for the spike in white cells when I stated the ibrutinib.

So the plan is to have more rituximab this week, but this time as an outpatient (as I didn’t have an adverse reaction) and another CT scan to see what is happening with the lymph nodes.

Time for a quick thank you to middle daughter Katie who took me to, and collected me from hospital last week, and all my other very special friends who have supported me through one or two dark moments, and accompanied me to the clinic yesterday. It means a lot and I am very grateful.

So with the current plan in place (and others in the background, I am continuing Onwards and Upwards!

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Monday 17 June… A few days away in France!

I have returned from a few days away in France, helping Mark doing some work on his house. You may remember that I was there a few weeks ago, this was a trip to complete one job and carry out a couple more. The first one was putting up more insulated plasterboard on the sloping roof (this room will eventually be the main bedroom.)
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That was followed by some work to run central heating pipes from the cellar to the new room…  Drilling te holes through the tiles, concrete and wood into the cellar was reasonably straightforward and quick.  “Ah” we thought, “this is going well!” Alas it was not to be as the next photo shows

Where drilling through the ceiling was not straightforward, not helped by the failure of two power tools! And that was just the start as we drilled into a waste pipe in the up stairs bathroom  –  which  slowed  us  down  a  bit! However we did get the pipes run in – they just need to be boxed in.

We did a bit of slab laying on the last day, and some work in the garden with the ride on lawnmower and the grass cutter on the tractor.

Healthwise, all seems to be going well, I have an eye appointment at Southampton (my eyes have been better recently – which could be the Ibrutinib as it can be used to control GVHD, or I might be being a bit more careful in applying the various eyedrops etc. Next week I have my CT scan, and I should get the results at my next check up in July. I haven’t heard anything about my recent blood test, so I am taking that as good news!

Onwards and upwards!

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Sunday 9th June… some sun at last!

It was certainly wet wet wet for the last couple of days, and before that it was quite windy, which was a pity as I was supposed to be diving on an old Mulberry Harbour as part of the D-Day activities. Sadly it was too windy to launch the boat.

Other than that, little else to report. It is a month since my last check up, but the team don’t need to see me, but just require a blood test. I’m quite busy this week (more later!) so I had the blood test last Wednesday and picked up my next month’s supply of Ibrutinib. No comments from the hospital, so I assume that the results are all OK. 🙂

And that’s it for this post! Off the enjoy the sun – Onwards and Upwards!

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Friday 31st May… Wet wet wet!

No, not the weather, but me yesterday as I got back in the water for some diving. My medical certificate came through this week, so it was the first opportunity to get back into the water since my relapse. I did do a bit last year, but tis was a chance to do some drills and get used to a couple of new bits of kit. Im also doing a boat dive next week as part of the 75th D-day celebrations.

So it was off to Vobster Quay at a reasonably civilised hour with a dive buddy for a couple of 30 minute dives.

Vobster Quay

It doesn’t seem much time under water, but part of the fun is being out with like-minded individuals with a common purpose.

Me in my wet suit!

We did some drills which highlighted a (fixable) problem with a new mask, so it was good to find that out in the more benign environment of a sheltered water site!

I was quite tired when I got back – a combination of physical exertion, and fresh air, but a sense of satisfaction! The only downside is getting all the kit dry when I got home, but it was fairly sunny in the evening, and it got reasonably dry – Ill be hanging it on the line this morning to finish the process.

And for those that are interested, this is one of the dive profiles!

So while yesterday, diving might have been onward and downward, overall definitely onwards and upwards!

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