Week 44: Tuesday - There Are Also The Realities Of Everyday Life
Four injections left until Week 48. Looking forward to my hospital appointments tomorrow but I can feel my emphasis shifting from a discussion about extending treatment to a concern about my current haemoglobin levels. We are due to fly to Spain in two weeks and I want to be well enough to go!!
On Saturday we had Ben & Sofia visit for the afternoon and evening. I knew that Carol was struggling with a headache as well as cooking and entertaining. By late evening it had become a migraine. In addition to looking after me, Carol is also supporting her mother through the transition of moving into an old people’s home and, as a professional Complementary Therapist in her own right, continues to provide treatments for her clients (several of whom are also living with blood born diseases). On Sunday it felt like we were both in a bit of a ‘collapsed heap’ and I felt so aware of how much Carol supports me and what a cost it is to her too, me being on this treatment. Those of us who are fortunate enough to have carers supporting us through this treatment are very fortunate indeed. I want to acknowledge just how much carers in many ways are also ‘going through treatment’. I know this is the case for Carol. And, in my state, how difficult it was to offer her meaningful support during her ‘bad day’ – it felt awful not to be able to do more to alleviate her pain, as she has done for me on so many occasions over the past months.
While Ben was here on Saturday, we talked about the Forum. Ben upgraded the software to a newer version and we discussed some housekeeping changes to the format to prevent a future problem of readers having difficulty navigating through hundreds or thousands of topics all in an undifferentiated list over many pages. Because I had made a mess earlier in the week manipulating the software and moving posts, I decided to get the changes done while I had the technical expertise in the room with me. Focused on my anxiety about not making technical mistakes, I didn’t consider notifying Forum members of the changes in advance. And some members have reacted angrily, rampaging about the Forum (it seems to me) with accusations of censorship and sarcastic comments. I am upset about this, not least because of my state of mind at this stage of treatment, and because I have invested so much time and worry in hosting the Forum to provide a positive place for people.
So I decided to focus my time and attention elsewhere at the moment. I haven’t been to Forum since Sunday and will leave it till the weekend before I visit again.
In the meantime, Carol is feeling better, and we are both back to a better level of functioning. I have at last managed to sort out my car insurance, due for renewal as well as get the MOT carried out on the car.
While those of us on treatment do feel sensitive and easily-offended by change, life isn’t just about treatment – there are also the realities of everyday life to get on with and devote time to as well.
September 6th, 2005 at 10:16 pm
Ron,
Sorry to hear you were upset. You don’t deserve that or Carol. Sorry if I have caused offence in any way.
I’m good at putting my foot in it!
Hope you feel well enough to enjoy your holiday and I wish you well and good health.
September 6th, 2005 at 10:59 pm
Hi Ron,
I am glad you made the changes. I have felt really bored and excluded recently by all the “boys stuff” and ramblings of some posters on the forum - in fact I have almost stopped visiting.
So thanks from me.
And it’s so easy to shout “victim” and “censorship”. Sometimes I think people are just working through problems about relating to authority figures/parent/doctors - and perhaps they should grow up a little.
You don’t deserve the crap, no-one else has done what you have, by creating the forum and investing the time and effort in it.
Have a great holiday and best wishes for the final haul.
September 7th, 2005 at 1:05 am
Hi Ron,
Hope when you do revisit forum you will see that everyone has calmed down a lot…..sure you have a valid point about tx making everything out of perspective…..the vast majority of us seem to have no problem with the changes, and I am sure that even the few who were upset will now completely understand both the reasoning and the timing of your taking the oppertunity of utilising Ben’s skills!
The forum is a great place and I am absolutely posative that it will continue to function and develop….it is certainly big and tolerant enough a space to encompass all our personalities and opinions…..after all, thats why we keep coming back!
September 7th, 2005 at 1:11 pm
Hi Ron
I am not surprised you have been feeling upset, treatment or no treatment. A couple of days ago I visited the forum and was surprised to see all that stuff going on! It all seemed to have gone a bit mad, and didn’t feel like the same place I used to visit not so long ago. The reason I have avoided other sites is because of all the exclusive banter that can go on - it can feel very unsafe at times. If some people want to do this that’s fine, but just not what I find useful in a forum. I personally am glad you’ve made those changes so that people can have the choice - I haven’t found it at all hard to navigate round, and I think you’re a star for doing any of it in the first place anyway!
Good luck for your hospital appointment, put your foot down about Epo, especially if you are thinking about continuation of treatment. It really really did make a huge difference to me tho you will need decent ferritin reserves. Ron I won’t be in touch for a while but want to wish you really well for the next few weeks. I hope you can make your decision with peace and confidence, and enjoy your holiday in Spain.
Hasta luego amigo
Lu
September 8th, 2005 at 2:04 pm
Hi Ron,
Spoke to Mairead today and mentioned that I hadn’t heard from you for ages and she explained why! Sorry to hear that you are not well and I’m glad to see that you have not lost your sense of humour! I hope that you will be able to go to Spain and get some R & R. I’m off to Cyprus on Saturday so I will be in contact after I come back.
Hope you hospital appointment goes well and your blood count improves.
Best wishes to you, Carol and your family.
Jacqui