[HeathermacParticipant]

What a roller coaster ride this disease is! B…..y unfair too! I really hope, no, I am sure, that this is just another blip on that roller coaster and soon you will be on the up again. Appointments with the consultant are nerve racking, and am due my next one on Monday. So fingers crossed for us all!
Heather x

[HeathermacParticipant]

Am also new to the site, but I understand the battle. It took 15 months to get to SCT, but get there I did in July. Like Bridget I would say that the side effects take some getting over, but after about 14 weeks I began to feel human again, and now feel physicallybetter than I have done for ages. Planning return to work next month – but don't plan to work too hard! It is so worth it. Someone asked me if I would go through it again, and altho I wouldn't relish the thought , I would do it! Hope it all works out for you both and carry on battling!
Heather x

[HeathermacParticipant]

Hi Glenn
Altho all our situations are different, we all face similar problems. I find it hard to believe the difference a year has made to my level of walking and pain. Someone who I met recently didn't recognise me without my stick! Being fit previously will help a lot, as I wish I had been fitter, and am trying to increase my fitness now. I did haveZometa prior to my SCT but they have not re-started it again. Am going to question why not at next appt with consultant, as it seems that the recommendation is for at least two years of it. I must admit I felt ok on it. Also had Velcade prior to ctd, which also seemed to suit me, but the effects on my levels diminished so went back on Ctd. Interestingly, despite ( or perhaps because) of my background, I don't want to know too much about my levels etc. Just enough to know what's happening. We are all different, thank goodness!
My husband has been wonderful. It is so hard for loved ones because I have always been the capable one, and suddenly I felt useless. It is frustrating and can make you quite grumpy at times! I had to reassure him that its me and the illness that I am grumpy with, not always him! We have held together as a team and are closer than ever now. I am back to being capable( or is that bossy?!) again!

. Keep on battling. Let people look after you, and rest when your body tells you! It's a roller coaster ride, but well worth the journey.

[HeathermacParticipant]

Thanks to you all for your messages. It is really good to hear your positive stories, and to know that the way I'm feeling is not just me! I am in discussion with work, and am planning a return doing office work initially, but really don't know whether I will cope with my 'proper' job again. Will have to play it by ear, but i have never done office work and will really miss patient contact. I can retire in2.5 years and part of me is wondering whether to go earlier if it was possible. My husband is not due to retire for 4years however, so am not sure. So many dilemmas! Also want to move house to be mortgage free, but how soon?! Don't worry, I don't expect answers, just thinking out loud! But comments gratefully received. Bridget hopes the NHS looks after it's staff, well, occ health have not been in touch for nearly a year, and my colleagues are going off with stress, so can't imagine it will be an easy ride back! Helen, I will be planning holidays, and it's lovely to hear Tom and David regularly go away. So thanks again to you all.
Heather x

[HeathermacParticipant]

Hi Glen
As someone of similar age and presentation (tumour on spine caused spinal cord compression, and could hardly walk) abou 18 months ago, I thought you might like to know that I am now 6 months post SCT and felling much better. Walking several miles easily and without pain or sticks. Radiotherapy helped no end. Was on ctd for some time, and altho it was no picnic, it did the trick. Hope you continue to improve and, like you say, stay positive(altho not always easy!:-) Look after yourself!
Heather

[HeathermacParticipant]

It sounds as if you are both having a really tough time at the moment. There is not much to say other than to stay strong and that I am thinking of you. Urinary retention is a common side effect of severe constipation as the full sigmoid colon presses on the bladder outlet, hence the need for a catheter. Morphine is notorious for causing constipation, and being constipated can make you feel iller than you could imagine. I wonder if at least some of your dad's symptoms might caused by that constipation, lethargy, pain, nausea, being at least three problems. I hope they are able to resolve it soon – need to keep battling from both top (laxatives such as movicol, if tolerated) and bottom. I speak both from the point of view of patient who has experienced some of this, and a nurse, who has cared for people in similar situations. So I really hope this problem is sorted and that your dad is feeling better soon.
Heather x

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