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johnbarry.
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May 24, 2018 at 8:16 am #21080
My wife had her first chemo session yesterday and it generally went well, she is in good shape today. However, one thing that emerged and I suggest will be a theme for the next few weeks is that time estimates will be comfortably exceeded. The three hour treatment yesterday took just about 4.5 hours so it is best to allow 5 hours per session, i.e, nearly 50% more than the headline figure. In two weeks time two sessions on Monday, blood tests in the morning plus the consultant in the afternoon,will in effect take the day. The following real chemo session on Wednesday needs another 5 hours blanked out of the diary.
None of this matters if there are no dependencies. However, if there are other issues such as a disabled dependant person who has problems with change, the stress and physical management issues rise rapidly. None of this is insurmountable but it takes a new level of planning to work out the scheduling requirements and put them in place.
May 24, 2018 at 10:04 am #21081Richard wishing her and you all the best at this difficult time and hope all goes well in the end.
Good luck to her.
The more you meet people the more you understand why Noah took animals instead of humans
May 24, 2018 at 10:16 am #21082Yes Richard all the best to your wife and family.
May 24, 2018 at 10:17 am #21083My best wishes also.
It is a horrendous experience but I can assure you it is worth it in the end.
May 24, 2018 at 10:36 am #21084Thank you.
May 24, 2018 at 12:31 pm #21085I was lucky enough to be able to drive myself in for my sessions, with no ties or dependencies. I can see how it impacts in your situation and you have my sympathy and best wishes.
The long day would start with the second antibody, followed by a 2 hour break between infusions that I used for lunch, then the long drawn out chemo finishing after the nurses’ shift had ended leaving just the one nurse who stayed late and me in the MDU. I would often get home after 8.30 pm after the hour and a half drive.
The reason it was long and drawn out was because they had to slow things down following my dodgy reaction to the first infusion. They started the flow rate slowly and increased it gradually.
Wishing you, your wife and family all the best throughout.
Posted from the Marsden where my latest scan and check up just got a big thumbs up!!
May 24, 2018 at 12:35 pm #21086I can only echo what the rest have said, best of luck to you and yours.
May 24, 2018 at 12:47 pm #21088Good luck to your wife and yourself Richard ?
May 24, 2018 at 3:30 pm #21093Thank you again to all who responded.
JCD, that was a pretty gruelling schedule, perhaps not made worse by having no dependencies but a very long hard day. Glad that the Marsden gave you one reason for a thumbs up. Adverse reactions are not good. We were significantly worried that a repeat of anaphylaxis might ‘liven’ up the proceedings, but happily there was no such problem this time.
I forget who spoke about the steroid effect on talking, but today it is understood a little more clearly, if you catch my drift.
May 24, 2018 at 3:48 pm #21095Words are inadequate – I just wish you all the necessary strength and compassion to carry you through this trial.
May 24, 2018 at 10:28 pm #21106Good luck and god bless
May 25, 2018 at 6:59 am #21117All the best Richard, I know what your going through, she has her sixth and last 04/06/18. The last one (5th) she had problems with her heart (after having an Echo) so she only had 1 bag of chemo out of 2.
She then starts her Radio Therapy.
Cheers
JohnMay 25, 2018 at 9:53 am #21123Ah, Richard the dreaded perils of the steroids. Starts off with the talking and will continue with in my case, biscuits, which was something I never used to eat. Had to have them during the day or 3 in the morning when I would be up on the computer or listening to music. Beware there might be more bizarre things to come.
My visits are into a set routine now. 75 mins before treatment appointment leave home. Park car, walk to main oncology unit get car ticket stamped, all day £2, walk back to heamatology ward, picking up large coffee on way. If all goes well sit down 15 mins before appointment. Always get ticket stamped before treatment because I have been caught out before when treatment has overrun.
Yesterday was good, actually had one of the consultants holding her head in her hands shaking it. Never had that before. Still got away with only one transfusion so got away two hours early.
On a serious note best to you and your wife and watch out for steroid gremlins
May 25, 2018 at 10:42 am #21129Thank you Stevie P, we will just have to keep on trucking.
Yesterday’s ‘bit of fun’ was not connected to the treatment in anyway, but a kitchen mixer tap was very stiff. I sprayed it with silicon spray and all was well once more. Then yesterday, little bits of tap came out so another unwanted job to fix via a new tap. I have shut off one isolator but the other will not, for the moment move. I can isolate the thing but will try again later so that the old can be removed and a new one can be fitted. It was all so much easier about 20 years ago when I fitted the tap.
May 26, 2018 at 5:16 pm #21164Richard, Stevie P and John Barry, all the best to you and yours with your struggles, may they all have a good conclusion.
Having been off the net for some days, I was unable to comment before today. However, I attended my pre assessment on Wednesday and start chemo next Wednesday, having to go up to the path lab for bloods each Monday. Then a cycle of Monday bloods, Wednesday Chemo, for 3 weeks. Take a week off and start again. That will continue for 6 months.
After the first session, if I react OK, I will look at taking a cottage holiday somewhere in Norfolk or Suffolk, after maybe 2 or 3 sessions. I am advised to keep away from lots of people because of immune system issues, so it has to be a fairly isolated place.
When the Thought Police arrive at your door, think -
I'm out.May 26, 2018 at 8:54 pm #21182Adding a postscript here Re: hospital parking: when I attended chemo pre assessment on Wednesday, I was given a form for free parking, completed and handed to the Security window, with my Reg plate on it. The Security guy said that I could just drive out now, as the camera would pick up my plate. No it did not: I was left at the barrier, pressed the intercom, had to wait 15 minutes with cars queued behind me. As there were two gates and I had my hazard flashers on, the cars behind me were driven by Muppets who could not discern the obvious. the more intelligent ones were driving out through the second gate. Eventually we were freed.
When the Thought Police arrive at your door, think -
I'm out.May 27, 2018 at 8:00 am #21190Sorry about the ANPR gate troubles, I cannot claim to be a great fan of those set ups, they always feel as though they are on the edge of failure as you found. The local hospital just gave us a paper, that I then copied and laminated. We just stick that on the dashboard and get on with sorting other things out.
As for the chemo, that appears to have started as one might wish, my wife is taking the different back up tablets, needs the sickness one in the morning and has changed the various other plans as scheduled. She started the injections last night and so far that appears to have gone well.
The plumbing night mare was another story. So Wednesday was chemo day, Thursday was exploding tap day and Friday was try to get a replacement and fit it day. The first stage was not too impossible, we knew we needed a tap ASAP and messing about seeking the ideal item was off the agenda, availability was everything. The original was fitted 20 or so years ago when I was younger and without the wear and tear I have collected. The first issue was getting into the cupboard, the second was sorting out the isolator valve that would not turn. So plan A was to replace the darned thing, one shopping trip later my plan was ready. I stopped the water to the whole house and tried to remove the valve. It was one of the older style two piece valves and, while the top half compression nut easily undid, the second did not, the body came undone instead. So at least I could now work the shut off valve and free it up. Then using a modicum(?) of potable water plumbers mate I rebuilt the valve refitted the thing and checked for leaks. I normally dislike working in cupboards, but the number of pipes and devices made access ‘super challenging’ but Friday’s 5 hour battle was finally won. Saturday was a day of rest and then one day I should be able to move my left arm once more, I now have a saucer sized bruise on the upper left arm as a memento of the work.
OH, and just for a dash of extra flavour, yesterday disabled daughter had a supper scale melt down, really not what anyone wanted or needed.
May 27, 2018 at 8:29 am #21191Good luck to all.
Been stuck at the barrier many after pressing the buzzer, those behind I am sure blame me. It’s not my fault the securitymust be on a T break.
Richard when it rains it pours, sorry to hear the problems poured out.
If going through chemo isn’t enough.
Cheers
John -
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