I’m a little fed up with people assuming that as you’re in remission/recovered from SCT, your completely back to ‘normal’.
I have to rush to the loo whenever I get the urge & obviously take precautions whenever out.
I have to structure my weeks around the activities I want to acheive by pacing myself. I volunteer in a charity shop one day a week & the day previous & after have to be quieter days.
I’ve got my 16 month old, adorable, grandson this weekend, so I’m not doing much today or Monday. I have already arranged for a friend to come up for the day & we’ll go out for lunch on Monday.
I know by then my glands in my neck will be up & my voice will be gravelly & I will be physically tired.
I try to lead a normal life & have always been a busy person. I was a School Business Manager in a local rural primary, which was full on. One day I was at work, struggling on, & then I was in hospital with AML trial treatment! That does your brain in.
I was told that the environment was unsuitable to return to, so was luckily pensioned off.
I miss the social side of my life, so often meet up with friends, they understand, (you identify who your REAL friends are when on this journey) but it’s the people who meet you & just don’t understand.
Someone has mis-informed the DWP that I’m working - yes I manage 6 hours volunteering weekly for my mental health, but they don’t know the real cost to my physical health!
But you have to push yourself otherwise why did we fight to live!
Rant over.
Hope others understand & empathise.
Hi, our blood cancer stories are different, but all your thoughts and feelings and a lot of your experiences I can really relate to. I broke my arm a few years back and everyone was asking how I was and falling over themselves to help me. But blood cancer can be so invisible and I do not think that anyone who has not had fatigue can comprehend what it is like. I know I have to plan to pace myself and have those quieter days. Before diagnosis I also went through life at 100 miles an hour. My job was made redundant so it was a win-win situation. I have also lost friends since my CLL, but I have also gained some priceless ones. I am a lady who lunches and goes to matinees. I also enjoy volunteering work. Isn’t it lovely to have this community forum to have a good rant on and know others will understand.
Oh my goodness, so much of what you write here is similar to how I am…and I am 10 years post SCT. I hate that people make judgements, and you must be so angry that when you try to get out and do something useful somebody took it upon themselves to report you to the DWP.
I try to get things done in the mornings and then rest in the afternoons. Holidays have to be planned with rest periods inbuilt. Next week we are going to see our youngest child for a couple of days. Thankfully he is very thoughtful and makes sure that I am not too exhausted. If we have the grandchildren for a couple of days they recognise that I am not as active as they are. Having also retired through ill health has meant I can be a lady who lunches, and thank heaven for Tena Lady. Best wishes xx
I’m a bit late seeing this post but could have wrote it myself, it is so frustrating isn’t it?. It’s still early days for me almost 5 months post SCT but everyone that isn’t a very close friend will always say it’s great to hear how well your doing. It annoys me so much because I’m worse now than I was when I was going through treatment. Currently dealing with gvhd and the fatigue is unreal. Also back to hardly eating with oral gvhd. I don’t want to say in detail just how bad I’m doing to every person I talk to but it’s getting exhausting talking to anyone because they just don’t understand. It’s good that your doing a day volunteering!
Oh, Goody, I am so sorry to hear that you are going through such a horrible time. My pet hate is people saying to me ‘oh, you do look well’ when I am feeling **** inside. Yes, I often feel I cannot be bothered to tell people how I really feel, and unless they had not felt the same they would not understand anyway. I think that is the benefit of our community forum as you are posting to people who really understand. You also find out who you real friends are. Please keep posting how you are feeling as we are here to support you. Be kind to yourself and take care.
Yip it’s a godsend being able to talk to people who just get it. I’m hopeful that I will be a bit better by Xmas, determined to enjoy the holidays!
@Goody I have spent most of the afternoon sleeping, catching up after a couple of busy days in London, speaking at a Bloodwise induction, then attending the Bloodwise Carols, which was an amazing experience. Now ready for a couple of days with two older grandchildren 
Take each day at a time, and prioritise 
That is a very busy couple of days indeed, sounds fun! Thanks x
Hi @Goody and @Pisces56, I think I have learnt that sometimes I make decisions to do something that I really want to do knowing that it will set my fatigue off and I hope I try to block out a couple of days afterwards to have a rest and re-charge my batteries.
My blood cancer experience is different to yours @goody and it’s my son who had blood cancer, but it frustrates me sometimes that people think everything is ‘back to normal’. There’s no going back to normal is there! It’s tricky because I’m obviously so glad that he is doing reasonably well, but that doesn’t mean that everything is great. More than anything, the mental impact is huge and all that stress and worry doesn’t just go away. Generally people just don’t get it do they - it’s nice that people here do. Rant away anytime!
Exactly, I don’t blame people either for not understanding. It’s not until your going through it that you understand how much of a rollercoaster it really is. Hope your son is doing well and your able to enjoy Xmas! I’m on high dose steroids and immunosuppressants to try get on top of this skin and oral gvhd, hopefuly sort it out enough so I can enjoy Xmas day! 
Xx
Hi, please do let us know how your Christmas goes, we will be thinking of you?
Thanks Erica! Going to clinic on Thurs see what the next plan is! Xx
Morning, Blood cancer is that invisible disease and as mentioned its difficult for people to truly understand how one feels. Its important to recognise that having gone through cancer and treatment people will need to get use to their new normal which in it self can to be struggle to adjust to.
Good Luck with your appointment tomorrow Goody, do let us know how it goes.
Thanks Bav, they tried to keep me in the other night and it was my son’s nativity today…luckily convinced them to let me go and I made it to his show…I’m so happy I got to go! It’s the little things like this that keep me going x
I am so glad you got to your son’s nativity but you know the old story about the mother and young child on a plane, and the oxygen masks come down, and the mother is told to take oxygen firs,t and then to give it to the young child, so the mother is strong enough to do so. Take lots of care of yourself, you sound a very special person and Mum. Does anyone else know this type of dilemma, I am sure I do?
@Goody Hi Goody, I hope your appointment went ok? It is so lovely to hear that you got to go to your son’s nativity! How was it? I can only imagine that it is incredibly special moments like this that can make such a difference. And I echo what Erica said, do take care of yourself Goody.
It’s hard trying to balance what you want to do with what is safe isn’t it! This nativity I wouldn’t of missed for the world. My little Wiseman did a fab job! 
Drs have decided to keep me on the high dose steroids for at least another 1.5 weeks along with the 2 immunosuppressant drugs. Skin looks like it is going in the right direction just very slowly! Muscles in legs starting to feel a bit off with being on the steroids so hopefully able to wean off them safely soon 
thanks everyone hope you all have a great Xmas xx
Hi Goody, thanks so much for updating us. I was impressed that your son was a Wiseman, my son’s only claim to fame was being a tree, however this was many years ago and all I had to provide was a brown jumper, luckily the nativity is in the winter so there were no leaves on the tree. Yes, have a brilliant Xmas with your special family.