Sending you all my very best wishes and will be thinking of you.
Alfieš
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Hope it all goes as well as is can, my best wishes
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Hi Mark, Iāve just been catching up with your post. Hope everything is going as well as it can be. Thinking of you, Joanna
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Hi Mark, I hope the transplant is a success and that you have not had too many bad side effects. It is not an easy procedure to go through. Hopefully you will be able to take a gentle stroll before too long and you will be able to let us know that you are ok
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Hope that you are doing well Mark, our forum community is rooting for you! Wishing you all the best.
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Hi everyone.
Sorry for not posting sooner. I had my transplant on May 24th exactly 13 weeks or 91 days ago,so I am approaching the magical 100 day spot. It ended up being quite a tough journey,everything was going well until about day + 10. My counts were rising nicely and they were talking about me going home when i started to spike temperatures. After about a week of feeling lousy they diagnosed that the CMV virus had been re activated, quite common apparently. This led to my lungs failing and ending up in critical care with complete respiratory failure.Quite a scary time but I somehow managed to survive and ended back on the haematolgy ward after another 8 days.
I recovered my strength quickly thereafter and once I proved I could walk again I was discharged 5 days later.
All in all a total of six weeks in hospital. Going home was harder than expected,very emotional first few days but I slowly but surely felt a little better and stronger each day.
I have felt quite sick off and on and eating has been hard but it is much better now and have managed to gain a couple of pounds.
My blood counts have been very steady and have needed no transfusions,though yesterday my white cells have started to drop for some reason so they have stopped one of my tablets, Septrim which is an immunosupressant. .
No GVHD so far,though I have had a dodgy tummy off and on.
Next week I see my consultant and hopefully get weaned off the cyclosporin ,another scary time as this is when the GVHD can show up.
I have had 3 bone marrow biopsies so far but only the results of the first one which was all good. Hopefully get some more news on Tuesday
Mark
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Hi Mark, so pleased that you are progressing after your SCT, and sorry to hear of your roller coaster ride so far. Living with blood cancer certainly is a rollercoaster. I hope you start to have a smoother ride, and you are able to walk part of your park run course soon. Best wishes
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Hi Mark, thanks for letting us know what you have been up to, gosh, a tough, scary, journey, it is the side effects that nobody speaks off. Thank you for highlighting how emotional you felt. Take it steady and listen to your body, as everyone says it takes time. We await hearing from you after Tuesday and 100days.
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Brilliant to hear from you, welcome back @parkrunmark 
Youāve been through a great deal, I hope youāre able to rest and recover your strength. I can imagine the thought of weaning off medications and possible GvHD is quite anxiety inducing, remember weāre here and so is your treatment team if youāre feeling worried. There is another thread about recovery post transplant you might find reassuring with lots of advice and stories, you can take a read here; When can enjoying life begin
Wishing you all best Mark, and I hope your results on Tuesday are reassuring.
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Hi Mark, glad to see you back on the forum and thanks for the update. It sounds like you have been having a pretty scary time of it. I hope things are beginning to settle down a bit for you though and youāre adjusting to life at home. Post-transplant can feel a tricky time, so remember to get support if you need it, as there is lots to adjust to. .Take care, Joanna x
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Hello everyone,
I finished treatment for HL in May 2019 and got the all clear in Juneā¦
The past maybe 6 weeks or so Iāve been getting neck pains and aches (like I did before I was diagnosed) and sore armpitsā¦ I have no lumps and no real other symptoms aside from the fact when my neck aches it makes me feel unwell (like it used to) and Iām very fatigued some days
I went to see my onco and nurse last week and they said because I have no lumps there is nothing to worry about however they donāt understand that I need some better reassurance than that ! Like a scan ! Itās making me ill with stress as I am only 22 and I really canāt process this all over again
I had bloods done on Tuesday and my nurse said if itās back that a certain thing will be raised (sorry I canāt remember what!) and that she will get me to see my onco again because Iāve now got a sick note off work with the stress of this.
Iām seeing my consultant today however even though my nurse already told me she was going to get my back in to see the doc, my mind is working overtime thinking that something has come up in my blood work
Iām having major anxiety about this and just felt like I needed to vent 
I really donāt want to go see my onco again today as my mind seems to think if o ignore it will go away (didnāt work last time I tried that because I still got diagnosed with 2B)
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Hi @Hannah97 I had HL diagnosed when I was 51. Unfortunately I had multiple relapses but have remained well since SCT in 2009. Fear of relapse is normal and very stressful, so I can understand your fears. Take each stage at a time. Today you are seeing your consultant who, I would hope, will understand your fears. Wait and see what your consultant says and, even if there is something there, there are other things that can be done. Although it is difficult, try to keep calm, and take some deep breaths. Also, whatever happens today, try to get some counselling. Let me know how you get on. I will be thinking about you xx
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Hi Hannah, oh, I really feel for you and I am so glad you have posted what it is really like to be you so we can all support you. I find me and my mind are like a washing machine whizzing round with fears, thoughts and feelings and yes, I have found counselling can help, but it is not an instant fix. Donāt forget if you just want a chat with someone that the Bloodwise support line is free from UK landlines and mobile phones on 0808 2080 888 and they are available to take your call Monday to Friday from 10am to 4pm and on Wednesdays from 10am-1pm, but you can get in touch whenever you want and leave a message and they say they will get back to you within one working day. I find fresh air, gentle exercise and interaction with people helps me slightly. Please do let us know how you get on and take lots of special care of yourself and have the odd treat.
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Hi @Hannah97,
I had AML & went it remission after first set of chemo but all my chromosome chains were in disarray & required a SCT.
All through my recovery I explained my anxiety as a black gremlin sat on my shoulder laughing at me. Strange, I know but thatās the only analogy I could explain to everyone. Gradually over the 11 & 1/2 yrs heās faded to look like a whispy cloud from a summer sky, however, when I have a cold, feel unwell & take longer to bounce back, he goes a little grey, as my anxieties reappear.
Itās natural to be worried about all this uncertainty but they do know what theyāre talking about & have to give you all the information about every little thing/side effect. Itās a scary thing to go through.
We understand to a certain degree & can all sympathise with your emotions.
Good luck
Christine
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You should understand that fear is normalā¦
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Hi @Cassy0110 a welcome to posting on our forum, yes, fear is a normal feeling, but perhaps it is still scary and often quite isolating.
I look forward to hearing more about you on our forum.
Take lots of care of yourself.
Thanks a lot, Erica! 
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Hello everyone
Itās been a long time since I posted on here, I do apologise as I know how much help these threads provide.
I think I was about 3 months post transplant when I last posted. Itās now 3 years and 4 months since my transplant. The first 9 months were definitely the hardest time in my recovery, Graft-versus-host-disease of the tummy which resulted in a week in my local hospital,quite a few skin issues and bloods all over the place. I was anaemic for about 10 months , luckily didnāt need transfusions, and having to empty my bowels around 6 times a day. Then suddenly at about 9 months everything settled down and my HB levels grew to normal levels. I started to feel normal again, unfortunately this coincided with the start of Covid 19 and lockdown so life was far from normal,as was the case for everyone.
I eventually went back to work in July last year after shielding ended, but the anxiety of lack of mask wearing caused me to retire on sickness grounds.
On the whole life has been quite normal, though I did get shingles last year which was rather awful and I had blood tests every couple of weeks for two years. I also have had 3 monthly bone marrow biopsies to monitor my cancer mutations. My last visit to my consultant she told me I was low risk of relapse ,therefore no more biopsies just 3 monthly blood tests.
All in all despite some horrible times I think I have had a smooth journey compared with others and am very grateful to be where I am.
Unfortunately the fear of relapse is always in the back of my mind despite what my doctors say and I think it always will be for most people,however my life is almost as it was 5 years ago.
Thanks everyone for your support along the way x
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Great to hear from you again @parkrunmark gosh you have had a lot going on in between, plus Covid times.
So you have now retired on sickness grounds, how does that feel?
I have had re-occurring shingles since the stress of us moving house in 2013.
Stress and overdoing it brings my shingles on.
Although I think it is better since I had the non-live Shingrix vaccines last January.
I think it is natural that the fear of relapse is always in the back of your mind.
Are you going for park walks or runs now?
Look after yourself
Hi Erica
Iām enjoying retirement, though I actually loved my job and working, but the anxiety of getting covid was too much. Most days I spend cooking or potching around the house, and of course a bit of running, I actually did a half marathon on Sunday which was a big milestone in my recovery as I last done the same event just before diagnosis in 2018 !
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