Hi @Erica I am enjoying my walks, although the weather has been rubbish so only managed to go out twice so far!
@Pisces56 I bought chamomile, vanilla and manuka honey tea, and wow, how brilliantly relaxing it was last night! Thanks for this top tip!!!
I have also stopped drinking coffee this week and moved on to green tea and other herbal teas. Headache was a pretty bad yesterday but hopefully less so to day.
Hope you all have a good day today!
Maria
Glad you enjoyed the tea. I think the vanilla and manuka honey gives the camomile a bit more taste. My 8yr old grandson and I also love liquorice and peppermint
Hi @MoMo how have you been doing? Have you been feeling any better at all? I do hope so.
Alice
@Alice_BloodCancerUK Thanks for asking. I am pretty good. My wbc has risen to a top level (5.6) and result is that the brain fog isn’t as bad. I’m now on reduced injections to see where my wbc stays and whether I need to start the next chemo at all… I was given go ahead from my consultant to integrated more with my husband, which has been great, what a difference it makes to be in the same room and watch telly together!! However, I’ve picked a mild infection from him, which isn’t good and makes me wonder how I might be when I go back to work (physically) in 2 weeks time… really don’t want to pick up any infections or Covid. But I’m on hols at the moment and spirit is up.
Hi MoMo
That’s great news that your WBC has improved to 5.6. I’ve been on filgrastim injections for nearly three years now and the highest Inthink mine has risen to is 4. I was very interested in your comment about brain fog as this is something I have had real issues with since my diagnosis with MDS (I also have an issue with neutrophils) and it has been worse following my bout of sepsis. It’s very frustrating at times.
Good luck when you go back to work. I’m still working from home but managing to be quite productive.
All the best,
Peter
Hi Peter, wow that is a long time to be on filgrastim injections! I’ve only been on them since Feb and injecting myself is so hard at times. My neutrophils is the only problem, I have LGLL.
Yes, I didn’t even realise how bad my brain fog had been until my wbc went up. I got used to living in this state where I was just doing stuff but not really being present, almost 2 years! Now I wake up in the morning and my thinking is much clearer. However, already now that if I get fever or fighting infection, even a mild one, the fog is back.
I’m working from home too, but soon have to do some face to face stuff too and that is worry. Hopefully the injections continue to work for you and the brain fog wouldn’t be too bad for you.
Stay well and safe,
Maria
Hi Maria
I’m getting pretty used to the filgrastim injections now and have managed to overcome my needle phobia. I must admit my “needlework” is pretty good now and I rarely end up bruising myself which happened a lot at the start. The filgrsatim was quite transformational for my as before I started on it I had continual infections.
Hopefully all goes well when you return to work and your employer puts appropriate safeguards in place for you. Mine has been really supportive and are being very careful to ensure I’m not out at risk.
Take care and stay safe.
All the best,
Peter
Hi Peter,
Yes I’m not fan of needles and that’s makes injections hard work. Bruising is less now, so I guess my “needlework” has improved 
I kinda work for myself, so it’s all up to me that my outside work place is Covid safe… I do have supportive people that work with me and don’t want that I put myself in risk. They told me that they don’t want to see me back in office earlier than mid-August which is nice.
You too, take care and let’s stay safe,
Maria
Hi Maria, that is good news that you are not expected in the office earlier than mid Aug, please let us know how you get on.
Hi Maria
That’s good that you don’t have to get back to work for another couple of weeks. Just take care once you get back.
All the best,
Peter
@MoMo @Dyslexicprof I do not envy you the injections. I needed a course into my stomach before harvesting of my stem cells, and because I got terrific pain in my back I had to take a couple of Paracetamol beforehand, then straight to bed. I had some after an operation in March too, and before the operation I had so many blood tests and needles in neck, arm, and hand too, I am dreading a blood test next week. Take care of yourselves, and Maria, I hope your return to the office is not too stressful
This is good to hear @Momo I hope this continues for you. Although sorry to hear you picked up an infection, how are you feeling now, I do hope you’ve recovered.
Hi all @Alice_BloodCancerUK,
My ANC has come down a bit, which was expected since the injections were reduced from 7 days to 5 days a week. It’s still in a good level which is good these times of Covid. However, I just got a text from NHS something about the latest shielding guidelines here in NW, but was missing the link so have to call my GP tomorrow. I’m okay but every little stressful situation takes my temperature up and then I feel absolutely rubbish and needed to postpone my first out of home work meeting until next week 
Hi @MoMo, glad all still at a good level. How are you managing the injections this week? I completely understand how things can increase your anxiety levels - it’s easily done. Do you find anything helps you to relax. It’s so important we look after ourselves!
Hi @MoMo, good news about your ANC.
Since my diagnosis I don’t deal with what personally stresses me well and my emotions have been all over the place since lockdown. However it has given me time to re-assess my life and my aim is to say ‘No’ more, instead of saying ‘yes’ and feeling rubbish about myself. I think it might be something about taking back my control and being aware of what situations do stress me out. However sometimes I need to make that initial leap of faith. Good luck about your first out of home work meeting and let us know how you are keeping.
Hi Erica, yes I absolutely agree with you that this time of crisis has actually given me too chance to re-assess my life, what I want and how I rather live it than not. There has been some harsh truths about my personality that have contributed to my situation e.g. stress levels but at the same time, knowing that I cannot continue as I was before. This latter particularly when my mentor supervisor says that ‘take it easy now and when you get yourself sorted, it’s time to be busy again’. I’m sorry but it’s time to say NO and take back my control of what’s good for me.
@Nichola75 Thank you, I think I have learnt to inject myself without bruising, which is good. And since I’m only doing it 5 days a week, I have 2 days breather from it 
I’m not really anxious about whatever new info the GP has. My stress levels are more to do the hospital appointments. Monday’s was just awful, my blood test were incomplete so needed to have new bloods done. Nurse couldn’t get any blood out of my arms so needed to go to the blood department were I had traumatic experience only last Friday. Survived but came home with raised temperature and felt like I had run a marathon. All I wish for is smooth hospital trips and a doctors who wouldn’t dismiss my illness as if nothing. Those I cannot control.
Hi Everyone,
I still think the latest advice is fuzzy!
I’m lucky to have a direct email address to my consultant.
I have used this 3 times during the pandemic. First, on Tuesday 17th March, when the list of vulnerable people was shown by the government at their afternoon session & it listed anyone without a spleen…I remembered that’s why I take penicillin everyday for the rest of my life. They don’t know if the 10 day chemo Prior to SCT kills your spleen or not.
To my surprise she rang about an hour later & told me to self isolate & start getting my groceries on-line. Well, we all know how tricky that was then! She said to revert to the guidelines from emerging after transplant.
Second, when I didn’t receive an NHS letter. She stated that they had no input to who was listed. (I also found out yesterday, that the GP has no note on my file that I received one either!)
She also said I didn’t need to shield & my husband could go out shopping.
We are hunkered down with my 85yr old father & my husband has allergic asthma, so we’ve not been going out to get anything.
Thirdly was the end of last week, I wondered if I could have my family in my back garden as it was my grandson’s 2nd birthday.
She said yes that’d be ok with social distancing but I still wasn’t to go to the shops.
So at present I’m desperate for a haircut, which my hairdresser, who is a friend anyway, may do for me next Saturday morning, before she starts on the general public, using PPE & I shall wear a mask. There’s no way I could sit in her little salon when I know others have been in there, even though she’s intending to deep clean daily & taking every precaution she can. I’d be on edge, desperate to escape.
I have no intention of going anywhere fast, with others social distancing. However, I will start to have a few friends in the garden for a catch up cuppa when the weather permits.
How do others feel?
Have you been able to speak to your team for personal advice?
Stay healthy & safe
Christine
Hello Christine I’m so sorry your post is only just being picked up, I’m not sure how I missed it!! It’s really good to hear you have a direct email address to your consultant. How have you been doing over the past few months?
It’s sounds like you are so lucky to have a wonderful team around you. My clinical nurse is always at the end if an email which gives me some comfort. I did brave the hairdressers when I needed to return to work and it felt really safe. I’m being careful again about going out to eat etc. If I don’t need to be there it’s not worth the risk. However, not all friends are as understanding as others. Let us know how the hairdressers goes x