FEBRUARY 2008 --------------------------From: Bob Date: Fri, 1 Feb 2008 17:55:48 EST (22:55 GMT) Subject: Team Helen A small step for Team Helen .... No time to compose, we did not get to a holiday cottage - but Helen is here for the night instead! not due back into the hospital for 20 hours! Far to complicated to explain the machinations of today but we are a step back towards reality, even if we cannot believe it. bob, and Helen
From: Bob Date: Sat, 2 Feb 2008 05:34:48 EST (10:34 GMT) Subject: Team Helen- Taa raah This is from Helen!! I have spent a night at home. back to hospital for some platelets this afternoon, and then armed with a ton of tablets, I think I can come home for a few more nights. I have to have a heart scan and I believe one more session of chemo, which they are going to dealy. The possibilility of another one as an out patient at a later date and the words "discharged from hospital are being banded about!" If I have any problems, I can ring the ward direct and go straight back in, they say they always find a bed for people in my situation. It was wonderful to be at home last night, first time I have slept in our proper bed since 8th March 2007! Bob have done the most fabulous job on the house, I cannot praise him enough. Love to all Helen xxx
From: Bob Date: Sun, 3 Feb 2008 17:11:08 EST (22:11 GMT) Subject: Team Helen Hello folks, Back to the team secretary today. We have had a full day at home. Helen is worn out and retiring to bed. Just getting upstairs is mammoth task. Two weeks ago it was impossible and she needed carrying, one week ago she ran out of puff half way up, today she has been up them three times - hence worn out! We christened the new cooker. Toad in the hole. Just getting the toads out of the Coop was exiting! We also had a visitor from around the corner, that and the problems of wheelchair access, moving confusion and missing pots and pans made making these toads very testing - but all the more tasty for that. The new dishwasher works as well. A good job really as most of the kitchen things have not seen the light
of day for several months. Dusty months. If anyone can explain step 7 of how to install it please let me know. Not having the diagram might be a help to you, certainly having the diagram hasn't helped at all. Tomorrow the hospital beckons again. At the moment Helen still "belongs" in the hospital, and is out on loan. Her bed is waiting for her there, how far away from being discharged she is we do not know. Still several weeks at least. Bye for now bob
From: Bob Date: Thu, 7 Feb 2008 08:54:10 EST (13:54 GMT) Subject: The Team Leader Here Hello Folks Once again I would like to thank everyone for their support, love and good wishes which have helped beyond measure over the past few months. I know it has been a great help to Bob as well. I still cannot find the words to thanks him enough for what he has done for me - did he really know what "For better, for worse, in sickness and in health" would entail? As Bob has told you, I am now on home leave, and as it is Bob's birthday today the doctor gave me a whole 36 hours at home! What a lovely lie in I had this morning. I can now get around on 2 sticks, but have an assortment of devices from wheel chair to walking frame. I do get very frustrated at times, not being able to do some of the simplest tasks, but try to be patient! I just have to try and remember how I was. There is certainly a lot less of me, no bad thing, new wardrobe required! There is talk of my being discharged from hospital in about a fortnight, but I'm not holding my breath. I have to have an angiogram (a tube put in my groin up to my heart) on 21st Feb to see how my heart is. I have another batch of chemo, due to start on Monday next if all my blood tests, platelets, blooodpressure etc are ok.That will set me back a bit I expect and a few days after that will go nutropenic, which means I won't be able to withstand any infections, so back to my solitary ward. I am currently (when there) in a 4 bed ward. To begin with I wanted my own room, but it's nice to have people to talk to. I was meant to have one final, mega chemo after the next one, but the doctors don't think my heart would take it. I think that will mean that I will have to be closely monitored for longer after my final treatment. Bob has done the most fantastic job on the house (aided by his sisters and brother in law - thank you, Janet, Sandra and Hugh).I have come in and poor chap has been moving furniture at my behest. He is right, I do have a lot of materials in my sewing room! I'm sure it will all fit, best I get on and make some quilts.
From: Bob Date: Fri, 8 Feb 2008 16:18:50 EST (21:18 GMT) Subject: Latest News Hello Everyone I have been discharged from hospital this evening and am now an out patient!!! Provided I don't sucumb to anything nasty, I don't have to go back till next Thursday when I will have some checks. The angiogram and further chemo will probably be done with me as a day patient. Howwever, I am mentally
prepared that I may have to go back in for a few days at some point. I really never thought this day would come, it still feels very surreal! Love to all Helen xxx
From: Bob Date: Mon, 11 Feb 2008 03:13:35 EST (08:13 GMT) Subject: Team Helen Hi, Well here we are, both of us trying to settle into our new house, our new lives. There seem to be rather a lot of similarities. Both have piles of stuff that should have been done before this point, jobs that need doing urgently, tasks that will be done one day and a whole heap of things that we don't even know where to start. Talking about starting: Helen starts the day slowly, gathers momentum gradually, and can normally get going eventually. She is able to be active for an hour or two before starting to tire, the main problem is the effort involved in just getting around. If she uses sticks the batteries run out fast, if she uses the wheelchair the batteries last longer - but everything takes longer and can be more frustrating (e.g. ten min of manoeuvring to discover that the door to the oven needs to be opened from the other side, back those ten, and another then another ten to get to the correct side - to discover she still can't reach.) My folks came yesterday to christen the new kitchen/dining set-up. A success. It took a great deal of sorting out to find out how to organise things: where will the table go, have you seen those chairs, which box are the plates in etc. However, now that is done once it doesn't need doing again! We went to the hospital to collect more pills on Saturday. Now the next appointment is a visit and checkup on Thursday. The Chemo scheduled for today has been delayed until an angiagram has been done but the date for that at the moment is on the 21st, which is too late for Dr Borg's liking. This is needed to rule out any residual heart problems. More development of the story to come there. I go back to work on the 10th March, a full six months since walking out of my original course. With the secondment back to my previous employer last year and the length of the course/s this means that I will have been employed by flybe for 16 months before I do a productive day of work for them. Hopefully I will be six weeks away from home on groundschool and simulator exercises followed by a month or so of supervised flying out of Birmingham - working out of home. Helen will either be in hospital or at home relatively fit. That is the plan anyway. We have a few offers of assistance from Team Helen and this week I need to find out what help comes from the state . . . . In the meantime, another week, hopefully more progress for Helen and the house and the sunshine. See you all some time, bob.
From: Bob Date: Mon, 18 Feb 2008 16:52:27 EST (21:52 GMT) Subject: Team Helen Hi, A very good few days, Helen goes from strength to strength, punctuated by worn out and unable to wake up phases. We have been in to the hospital a of couple times for blood tests and pill collections. Tomorrow she needs a blood transfusion to top up her haemoglobin levels. Wednesday evening she will go in for a day or so for the angiagram. Whilst she is able to do more from the wheelchair, carrying things on her lap for example, and can go further with her sticks, she is now finding it easier to stand up and move short distances without anything. It takes less time, she is unencumbered by sticks when she gets there, and in the chair it is 5050 weather she is facing the right way when she gets there. We have had an outing to Next where the joys of reaching for a size 12 item of clothing were exercised, a smart lunch out, and a tour of Sainsbury's to stock up the new kitchen cupboards - which also included several items of clothing... Our bedroom now looks like a bedroom, the heating is under control (it was more clever than I imagined, it anticipates the amount of time to warm the area from it's current temperature - to the next requested time/temperature - and starts early to get there on time. I thought it was just erratic.) the snug and kitchen have TVs (OK I have to trail the aerial wire through the kitchen each time we change locations) and we have had a bath - been looking forwards to that for months! Shame Helen is not to get the Hickman Line in her chest wet, it means that we cannot switch the Jacuzzi jets on. So, things are settling down to gentle, acceptable, chaos. Yo. Sunshine too. Bob M
From: Bob Date: Fri, 22 Feb 2008 15:32:43 EST (20:32 GMT) Subject: Team Helen Hi The angiagram took place without incidence, Helen was concerned about the procedure before and at the time; when offered a happy-shot beforehand she readily accepted. Turns out that it didn't do a great deal until after the event, when it made her groggy for hours. It sound like the worst part of the procedure was having to lie flat on a hard mattress for two hours after the event. The result of the angiagram was as predicted by the docs on Charlecote, the haematology ward where she has been treated all this time: Arteries all fine, the early drugs had had a negative effect on the muscles of her heart. Looking at the medical web-sites it seems this is a far from rare event, a 20-30% probability. What this means for the future for Helen is probably a long-term course of drugs. Having said that, before the Non Hodgekins kicked off she did have high blood pressure (a Chase family trait) and had been into Accident and Emergency a couple of times in the past few years as a result. It could be that she now has the opposite: poor heart muscles leading to lower blood pressure - which could actually be about normal . . . What an optimist I am! We now have a few days of rest before the next, and last, chemo, starting on Monday. The Marrow harvest, High Dose chemo, and stem cell replacement, has been abandoned due to the risk on her heart. The significance of that is that she will be watched even more carefully, probably, for virtually ever. Team Helen will need to be active next week. Messages and telephone calls to her mobile please. During the week of the chemo she is normally relatively compos mentis - but bored. Please do a bit to help. bob
From: Bob Date: Mon, 25 Feb 2008 16:53:37 EST (21:53 GMT) Subject: Team Helen Hello there, Waking up today, with Helen back in hospital and me on my tod again, was something of a shock. In several ways back to the bad old days: getting myself going, wondering how Helen is doing, deciding what to do first, etc, and in some ways nothing like the same - heating on and the Coop delivery lorries out of hearing for a start. spooky. It turns out that whilst she had taken her phone in she knew it's battery was flat, and the charger still in the cupboard. No wonder she didn't call until mid morning. I visited this evening and her phone is back up and working again. Herself? Very well. Day one done no problem. She is in a bay with two ladies and a gent and seems to be enjoying the company. In particular the gent seems to be on exactly the same course of drugs, but fifteen minuets ahead. This means that when they change his infusion they then get straight onto Helen's. She has been told that if everything goes as expected she should be OK to spend the weekend at home, returning every other day for blood tests, and being readmitted if, or more likely when, she gets to be nutropenic. That will probably be later next week. Visiting is limited to evenings again - that Norovirus is back. That said, there is not a lot of point of me going in more often, I can get more done during the day that way.
We are hoping that we can get away for a day or so before I go back to work. A break, anything different will do, that both of us need. A couple of nights in a country hotel with a cosy bar and a small library would suit me very well. So, no news is good news today. I did like the thought passed to me today - one which I have amended slightly - we are emerging from the [alpable aura of a thick thick fog, into the brightness outside. While we are still well within the influence of the mist we know that the dense, unfathomable, worst part is behind us, and the brightness increasing with every step. Forwards Bob
From: Bob Date: Thu, 28 Feb 2008 17:04:16 EST (22:04 GMT) Subject: Team Helen Hello there, The light is no longer over the horizon - it has lifted into clear blue the sky ahead. The last session of chemo, is almost done, the last of the "nasty" drugs has been given and Helen's personal internal sunshine is brightening by the moment. Just tomorrow's final "chemo" drug, which is relatively benign, and then Saturday which is lots of little stuff to return the various blood scores somewhere within a range that a body might be able to adjust to on it's own. So, there are only better, easier, things to come! A gentle cruise, down a gentle slope, to a sunlit plain. Florid or what. Anyway Helen had a difficult 24 hours but is getting better. When we think back to previous treatments this difficult period was a mere bagatelle, easy peesie. More a drag than any thing else. We hope that she will be out on Sunday - after a blood test to see if everything did return to somewhere near normal. Then a few days away in a small hotel somewhere to celebrate. Back be Thursday for another blood test, then more frequent blood tests to see if her resistance-to-infection level is dropping below a certain score (it has done so every time thus far) in which case she will go back in again. Sods law says that will probably when I start my course again. 10th March. We will deal with that one if it happens. I think I'm off to the pub to celebrate. (been here 6 months and have not done the pop to the pub bit before, honest) Bob