Argh! Easier to type than to yell, as yelling takes energy I don't have quite yet. Although I made it through the hospital portion of the SCT, I am finding the home recovery a bit harder. I didn't realise how much I relied on the staff in the hospital, not just for care, but for my own reassurance. Everything was monitored, press a button and someone is there. Now I am back to being the single mum of a disabled teen, trying to do as was done in the hospital. Checking levels has been a bit of a nightmare as when in I had consistently low blood pressure and blood sugars, but also temperature spikes. It's all still going on, along with the side effects, even though I am home. I think the most frustrating thing though, and I am sure there are others that will agree, is that everything tastes disgusting! I have had bad mucositis and my salivary glands aren't working yet. Bombay mix and things like savoury mince seem to be the least reactive, meaning, taste more like they should. Water? more like I'd imagine tangy sewage to be. Hopefully my sense of taste will come back soon, it'll make trying to keep my calories up a lot easier. That's my grumblings done for now :)
Hi GroguLove first well done getting through the hospital part of the SCT…… most certainly leaving the security of the SCT unit is like your favourite childhood blanket has been taken away but with time this will improve.
As an encouragement at 3+ weeks post my second Allo SCT I could not walk and I was in a wheelchair and needed help to do simple talks like go to toilet…. It took about 4 months to get back in my feet.
I was very fortunate that I had no mucositis (I put this down to the amount of ice lollies I had during my conditioning and the excellent mouth care products my SCT unit insisted I used.
But eating post SCT was still a problem as I was so sick just after I got my cells that I developed a massive Hiatus Hernia that completely enclosed my stomach……. So I lived on homemade soups for about 3 months.
I did lose my taste during my main chemo and my do to thing that helped was we blended fresh pineapple, put it in ice cube trays, frozen and I would chain suck on them.
I don’t know if you have seen this mentioned on the group threads but my consultant gave me this basic scale for classifying where I was on the recover journey.
50% = when in the hospital going through the transplant process.
60% = significant medical/physical issues that do not allow any physical activity apart from a shower and short walk and not able to prepaid food. Reliant of others for preparation of food.
70% = Significant medical/physical issues that do not allow any specific physical activity (not including a shower) but short walks and making a pot of soup. Will nap after the task.
80% = Physical issues that limits you to one activity per day. (not including shower) Able to prepare some food for a couple of people but most likely still taking a nap after activities.
90% = Some physical issues remaining (weak legs etc) but able to do a few tasks and may not be fully fit for permanent work but could do part time work. May have to .take a nap after doing tasks or work.
100% = No physical after effects and able to do multiple tasks including being back to work.
She also said on average recovery time-line is about 6 months with your recovery improving about 10% per month post SCT
This is an average time-line….. with general acceptance that when in the hospital going through the SCT process we are physically at about 50%…… any less would indicated some comorbidity issues like pre-existing health conditions that may reduce the 50% starting point and possibly add a month or so onto the recovery end…..
For example I have Asbestosis so this was looked at very closely and due to my prognosis was seen as an accepted comorbidity…… so I went back a good 10%…… other issues could be blood cancer type specifics, genetics…..
You will get there ((hugs))
SCT and Impatience unfortunately just don't go hand in hand....... your body and indeed your mind have been through a considerable life changing and saving process.
My Consultant also told me that going through SCT was like doing a boxing match and a marathon every day over the weeks of treatments and this was done without any training.
Think doing the London Marathon without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality
There are sign everywhere in my local Heamatology ward and clinic saying a week in bed is like ageing physically by 10 years.......
I was a month from my 60th when I got home after my second Allo SCT but I had the physical body of a 90 year old...... it was a long recovery...... but we get there......... my story was made more complicated mainly due to me developing a second more aggressive type of T-Cell Lymphoma in late 2013……….. but I am 3 months away from 9 years out from SCT, I turn 69 this Nov and I doing great.
