Sorry didn’t see this msg. Yes I’m on growth factor had a Few days of it then just got told today my WCC has shot up to 4.2 and my neuts 3.8 I can’t believe it. They say it will go down a bit now growth factor had stopped. To hear the words your going home soon was the best feeling in the world I miss my boys so much …
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Hi Goody, I am glad to hear you are going in the right direction. I bet you miss your boys, how old are they and who has been looking after them? The only thing I have found is as soon as I have come out of hospital everyone thinks that normal services are resumed and I am ‘cured’. I expect it will be very weird for you all re-adjusting to an everchanging ‘new normal’.
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Hey Erica, my boys are 10,4,3. My husband, my mum, my in-laws, my family everyone has helped out, I’ve been very lucky! My middle one is not happy and just wants me back…good news is tomorrow might be the day! Having a little trouble keeping my oral meds down now I’ve switched from IV so they tried the buccal antisickness and that seems to have done the trick. They want to make sure I can keep my meds down tonight and tomorrow morning and then they will let me know if I am definitely going home. Hick line is coming out tomorrow morning so I will feel a little more human again. Coming off the pain meds has been tough though I’ve had really bad withdrawals, I’ve slept for 3 days and nights apart from showering. Hope I can go home tomorrow and just be surrounded by my family and the food I enjoy although everything tastes like sour cardboard at the moment! Haha
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Hi Goody, It sounds as if you are still feeling quite rough. However I bet you are looking forward to seeing your boys (I am including your husband in that). It sounds as if all your family have really rallied round. I am useless at asking for help, but perhaps you might need to and to be honest with everyone about how you are feeling and what you might need. Look after yourself and take it very steady and perhaps honest, open communication might be the key for you all. When you feel up to it please do let us know how things are going and how you are feeling. Sour cardboard………ugh.
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Thanks Erica I’ll be back once I’ve enjoyed some time with my family! I really hated asking for help before all this but I couldn’t have done it without everyone.
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Fantastic news to hear @Goody fingers crossed you hear today about going home, I imagine being in your own environment and with your family will help so much with recovery. Don’t be afraid to ask for a plan for managing pain etc at home, comfort and ease of movement is key!
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Good morning. I hope you get the good news that you can go home in the next day or two. I spent a lot of time asleep after my SCT. I’m pleased that the mucositis is easing…the nastiest side effect I had to deal with from operations, chemo, SCT and RT! When you go home make sure you have a good doorkeeper. Keep visitors and visiting times to a minimum, and if anyone has the slightest sniff, cough, etc ask them to stay away as your immune system will be weak. Take things easy, and rest as much as you need (your boys are of an age that they will enjoy cuddling up with you in bed looking at books, or watching a family film). Recovery takes time, and you will have bad days, but gradually you will have more and more good days. If you have a garden try and have a little stroll or sit for a little while. Do remember your sunhat and cover up if it is bright. My skin remains sensitive to sunlight even now.
The most important thing is BE KIND TO YOURSELF. Recovery may take weeks, and you will never feel the same as before your diagnosis. I wish you all the best in your recovery and hope you continue to improve in leaps and bounds. My love to you and your beautiful family xx
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Thank you! I am home, it was an emotional day. I have alot of bone pain so I will talk to my doc at my first clinic apt on Monday. Warm baths seem to do the trick for a couple of hours but it’s really getting me down not knowing when I’ll feel better …it’s always been the unknown in this whole thing that has effected me the most. We have indeed snuggled in bed with a movie and bedtime story was always my favourite so it’s great to be back doing that atleast. We used to always go for big walks, tomorrow we are going to try a wee walk round the block. Need to see if maybe a walking aid with seat might be worth looking into for the short term…see how I go. Thanks for everyone’s advice. Will keep you all posted.
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Hi Goody, home, I think you are doing brilliantly, just think what you have achieved in a couple of days. I think home, family, snuggling, reading bedtime stories and a bit of fresh air and gentle exercise are the best medicine. Take it steady.
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I remember 6 weeks after SCT my husband left me at hospital door while he parked car. I managed to go up in the lift and was walking very slowly holding onto the wall. It was my consultant’s first sight of me as I had SCT in a different hospital. He remarked how well I looked, as did his registrar. I felt dreadful, very emotional and tired, but obviously their expectations were more realistic than mine. Start with little steps, and don’t feel discouraged when you are unable to do something. Just spend more time catching up with your boys xx
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Hi Louise and @Goody, I don’t get irate at many things but when someone says ‘oh, you do look well’ and I am feeling absolutely dreadful and often very emotional those words really finish me off. Be gentle and kind to yourselves both of you.
My lovely Dr M was comparing how well I looked from before my SCT and as I say was trying to stop me from being discouraged as I had very unrealistic expectations and wanted to run before I could walk. Considering I had had 3 major infections and been extremely ill it was a surprise to see me alive, let alone on my feet
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Hi Goody, just wanted to wish you well on being home again, and just be very gentle and kind to yourself. I’m sure your children will just be glad to have you back, regardless of your level of activity. My youngest was 6 when I got home, right near Christmas too, I was only too aware of my limitations with energy and strength, whereas he was just so pleased I was home. Your recovery might take time, just go at the pace that is right for you. Jx
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This is what everyone has said to me throughout my whole treatment and inside I cry because I feel like death warmed up. A picture of me smiling even doesn’t show what has actually been going on but people see that as your coping well.
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Thanks Joanna, having a rough day today nothing touching my achey bones. My mum has done everything including trying to find me things I can eat and keep down. I feel like a bad mum. I just want to be better
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Hi Goody. You have the perfect excuse to eat anything you fancy, so make the most of it. I nibbled on ginger and pineapple, and ate jellies and soups. Don’t stick to mealtimes, but just have little bits when you feel able to. If the nausea and pain continues ask your CSN or consultant if they can prescribe anything. I find a V pillow helps the backache (available from Mothercare, Argos…)
You are not a bad Mum. Your children will be overjoyed that you are there with them, and you must not expect to be all singing, all dancing, for a while. Your body has gone through so much and needs time to heal. Think of how long it took to recover from childbirth, the highs and lows, baby brain, some days being so tired that you just worked on autopilot… You may not be able to take them to the park, or dance around with them, but the big plus is that you have more time to just sit and listen and talk to them. The special relationship I built with my youngest, who was a teenager when I was diagnosed, has stayed into his 20s. We used to spend time chatting and playing board games (when I was up to it)
Take care, and love and virtual hugs to you and your family. Louise xx
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Thanks Louise, slightly better day today. Doc said there isn’t much pain med wise they can do as she feel ibruofen would woke but my kidneys aren’t ready for it. She thinks because the hot baths are helping I maybe need to start wrapping up like it’s winter and stay as warm as I can. Managing to find some things to eat but constantly trying to find more so I don’t get bored. Boys are away to inlaws tonight, my mum has been here though sometimes just good to have the company and to have someone to encourage you to eat. Wish I could fast forward a few months though! X
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Aw Goody, you will get there, and as Louise has said, your children will just be glad you are home with them. It will take time to find your new normal so just be patient and gentle with yourself in the meantime. Glad your mum is there to support you too. Remember - baby steps. I know that feels frustrating now, but that will be better in the long term. Jxx
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I so sympathize with your situation, but we just have hope.