Neutropeanic sepsis

Sorry to hear this Nick, it is a scary time and I actually think more so for the person looking on.

I am 3+ years post my second Allo SCT and my wife comes up with stuff I had no idea actually happened.

Toilet accidents and SCT is normal and we will all have our own embarrassing story's.

At the moment it all about hanging in and trusting her team in every aspects. This is indeed a fight for life itself :( 

I have had a Sepsis a few times and I was out of my skull. No balance, they never trusted me to walk to the loo so had to lean on the nurse team often and did use adult nappies.st times. Totally humiliating but in reality I can remember much about it,

The worst time I had was actually at home. It turned out I had Pneumonia and Sepsis at the same time. My wife went out to the shops, during that time I started the uncontrollable shacking and shivering. Just managed to call her on the mobile but could not hold the thermometer to take my temperature, when she eventually got back and did my temperature it was 40.3........blue light job and a week in hospital.

Trusting that this will pass soon - man ((hugs))

Thanks Mike

Yes the toilet accident did happen bless her. That I can cope with, it was the speech and halucinating that really freaked me out. She is such a strong woman Mike but sadly I am not anywhere near like her. I still cry myself to sleep and when I awake. I am still praying this all goes well and then get ready for the next chapter of the SCT in early June.

Regards

Yes Nick, it is very hard to see a loved one going through such a hard hard time. 

Do you have someone (not your wife) that you can sit and unpack with. During a cancer journey folks in your shoes carry an invisible rucksack on your backs and all the stress and worries get kept in it. 

Men are the worst at not doing this as they think it’s not a ‘man’ thing to ask for support. 

It is important to unpack this rucksack regularly. Please check out any support attached to the hospital like a Maggie’s Centre or a Macmillan Support Centre as this can help a lot.

When I was in a good place in my head I would contact some of my wife’s friends to arrange to take her out away from the hospital.

We had to meet with a Phycologist as part of our Stem Cell Transplant induction as the whole process can be a hard phycological journey so they want to make sure you understand what you are letting yourself in for.

Man ((hugs))

Family and freinds have been very  supportive but as you know, they don't k ow what to say in most cases. I do however have a work colleague who not only went through breast cancer 3 years ago but also lost her husband this time last year. She is still understandably struggling, but I know she understands a lot better than everyone else I speak to  we share experiences and however hard it is to talk, it is very much appreciated and helpful. I help her with trying to get her life back and she listens to me with a massive heart. It really does work 

Hi Nick

So sorry your wife is going through such an ordeal. I had Flag ida mid Feb and it is very powerful stuff. I was back in my local hospital for 10 days with infections after being relaesed from the my Haematology hospital. 

It took exactly a month for my counts to start to recover and a couple of platelet and blood transfusions along the way. 

The most important thing is it did put my NPM1 marker back completely in remission.

I would imagine they will give your wife several weeks of recovery before heading for transplant as she will need it after such a rough time.

They will also need to do a biopsy to see if this treatment has worked which all takes time . 

My chemo ended March 4th and I am going in on May15 for the start of the transplant process so it will be well over 2 months of recovery.

Hope this helps and your wife feels a bit better today

Mark

Hi mark

That's not the case for my wife. We have seen the transplant team in London and the main consultant is going to perform a yet not published procedure. On discharge from worthing hospital inapprox 3 more weeks at least, we have been asked to contact the London team to attend a biopsy within days. Then following that a few days later the pre checks before admission. Then very soon after the SCT conditioning and transplant will happen. It's all a new process apparently to attack the NPN1 marker before it has the chance to rise to high. We have been told that although the marker is very low  this will not be killed off hence the need for SCT. however by striking early with SCT the outcome in his opinion of a better result is hopefully.

Hope that makes send a

Nick

Hi Mike

Meant to add, they are expecting this SCT process to start as soon as first week in June, so there is hardly any break from her current inpatient situation and then to London.

Very very tough regime.

For some it can be very quick to catch the window for the best results - I was 5 weeks between last chemo and the start of my first SCT.

Yes, it is hard going but as I will always say, keep focused on the great good in all this.  

Thanks once again Mike for your continued support.

Nick

Hi Mike

I am really finding this hard to take. I just called my wife and her infection is still unknown, doctors been in trough night, she in  on 2 machines now one foe ECG and another for BP. they are thinking now it may be the picc that could be the source so considering removing and then going to theatre to have Hickman line fitted and then onto ICU. also giving drugs that will make her swell up. I am so really frightened now. Sorry to tell you this news Mike, but with your own experiences I feel you are my best option on this great forum to understand.

Nick