Hi Chris…looks like you have turned the corner and hopefully be sent home very shortly…soon as my neutrofils hit 0.5 I was gone…although I was still fairly poorly I felt better being in my own environment…I agree with Tom get some anti-sicky tablets for your return to normality…good luck and stay safe…Phil
Hi Helen…don't really know if it was whooping cough or not …my recollection is that none of the consultants or my GP were not too concerned once my scans …tests etc had come back clear…mine was a tickly irritating cough…not a chesty one…hope this helps…stay safe…Phil
Hi all …Ibiza was shut…beaches empty..most of the bars closed..pool shut…my 16 year old son nearly lost his mind with boredom we coped though…in our eyes there is no such thing a bad holiday…stay safe…Phil
Hi Vicky and Colin… sorry to hear that Colin's SCT is going rough…believe me Vicky I can associate…I chose not to allow any of my family to come and see me ( only the wife )as I did not want them coming in to see me as poorly as I was…but…I always recall one particular nurse who on every shift she was on duty came in and said "always remember you WILL get better" over and over again…this has always stuck with me and when I have been admitted since SCT with infections she is still on the ward still as chirpy and positive…this is what dragged me at times from a low place to a positive place…send Colin my best wishes and hope he turns the corner sooner rather than later…He will get better..Phil and Jan
Hi Mary and Charlie…well the wife seemed to cope reasonably well…seemed to rise to the challenge I suppose…looking back it all seems a blur to me as I was at the hospital every day for months for either Mum or me and really as I said in my 1st post we basically had to do it…this is what I meant by coping with stress by adapting our lives to survive and continue the best we can…might sound like a load of poppycock but this was our way of coping…just remember there are holidays and better moments to come…stay focused on them….stay safe…Phil and Jan
Hi Helen…I too like you suffer from infections and it looks like now you seem to be getting on top of the whooping cough…great news…I had a cough for 4 months (damn nuisance) post SCT and had all tests scans etc from the clinic(all clear) and it did eventually ease off and just cleared up on it's own basically…good luck in planning another holiday and staying infection free…well done…Phil
Hi Keith…just to to re-iterate Eva's comment …I started on 25mg Revlimid as part of the X1 trial..but this knocked my Neutrofils for six and was close to if not neutropenic all the time…they have now managed my Revlimid down to 5mg and my Neuts are now 1.73…good luck with finding a solution…Phil
Hi all….just to say that I feel dealing with stress is a very personal matter… at the time of my SCT Jan 2011…my Mum was taken ill with early signs of dementia and suffering from COPD (she was a heavy smoker )…post SCT I had the daunting task of getting her officially diagnosed with dementia and put into care (100% nightmare)whilst still recovering. I can honestly say hand on heart that my wife and I were never away from the hospital during this period…during this time up to her death in Sep 2011 I had to focus on getting everything right for Mum which seemed (looking back ) I suppose a helpful diversionary aid to my own personal problems.I too sought counselling which helped and at one point I was hospitalised with an infection in the same hospital as Mum and I was told that she may not last the night…when I asked if I could go see her I was told no due to the high risk of cross-infection…( lowest point of the whole sorry episode)…but…she pulled through.Even when Mum eventually passed away I felt I was still strong enough to organise all her personal stuff and arrange the funeral…Do we ever cope with stress ??? or do we adapt our lives to survive and continue the best we can…I know that without the love and support of my wife my own personal story may have been a lot different…Mary you are correct when she says it is amazing what people can cope with and not crumble…but crumbling is not an option…hope my ten-penneth helps…stay safe…Phil
Hi Sarah and Henry…I too like Tom unforunately suffer from infections 6 since Jan 2011 5 of them requiring hospitalisation and have been told at ALL times to contact my Haematology team 24/7 with any worries whatsoever as my consultant says it's their job to decide what is wrong me and so far have always been treat by them…just wonder if different hospitals have different procedures …the only time I went to my GP was when I had a cough for 4 months the Haematology team did all the tests…lungs… heart…scan.. etc and when they came back clear just said bob in and see your GP …he will have a better handle on treating coughs…fair enough for me..hope this helps..stay safe…Phil
Hi Vicki and Colin…I had my SCT in Jan 2011…and the wife and I were discussing my Neutrofils prior SCT and we think they were about 2.8 ish and after 5-6 days post SCT they were rock bottom at 0.01…gradually rising until on day 17 they had reached 0.5 and I was allowed home…it's like anything with this damn disease everybody reacts differently to the same treatment so both stay positive and "kick it between the legs"…oh by the way Ibiza was shut…beaches empty..most of the bars closed..pool shut…my 16 year old son nearly lost his mind with boredom 🙂 we coped though…in our eyes there is no such thing a bad holiday…stay safe…Phil
Hi Chris…well done young man…keep up the good work…I suffered badly with Mucositis and vomiting and the trots and had no food or fluid orally for about 11 days…and …tried all the mouthwashes and a gargling solution to alleviate the discomfort to no avail…what worked for me and may be worth a try was flat coca-cola…I used it as a mouthwash and it sure shifted all the "debris" from the mouth ulcers…stay positive and enjoy your extended TV viewing…Phil
