[meganjaneParticipant]

Hi Richard,

I can't help with the HGV licence but my husband Phil drove all the way through his PAD treatment except for a short while after he had operations on both both legs due to bone damage. After Phil's SCT he did not drive for a short while due to fatigue but he is now fine driving again. He was also never told he could not drive.

Megan

[meganjaneParticipant]

Hi Richard,

How frustrating but at least things should be straight forward when you start on Monday. And as they don't work weekends in Germany you will never have to sit there waiting for treatment on a Saturday 🙂

I hope it goes smoothly on Monday.

Megan

[meganjaneParticipant]

Hi Jacquie and Geoff,

Glad to hear that Geoff was able to harvest enough for a transplant.

I hope you have a great holiday Jacquie and come back rested and ready for the next step.

Keep us posted on the transplant when it starts.

Megan

[meganjaneParticipant]

Hello Jean,

You are not being selfish at all. As much as I wanted Phil home it is a big responsibility to take on when suddenly it is just the two of you without all the back up of the nurses and doctors on the ward. Just take it one day at a time and don't worry too much (easier said than done!). Phil came home on a Wednesday so I took the Thursday off work but I had to go back on the Friday, I worried constantly the whole day but he was fine. For the first couple of weeks Phil did a lot of sleeping but then gradually regained his strength. Now, three months on, he has spent quite a few hours today sawing wood in the sunshine. It takes time but Frank will improve and the most important thing for the first month or so is to try and avoid germs while his system is re-booting itself. Also try and look after yourself as well, it is hard work being worried all the time and it does take it out of you, you may not realise it at the time because you are getting through the day on adrenaline but you need to stay well rested so you stay healthy as well.

Welcome home Frank 😀

Megan

[meganjaneParticipant]

Hi Dai,

I am sorry to hear that your neutrophils are not behaving themselves, hopefully by next week they will have recovered enough for cycle four to start.

Megan

[meganjaneParticipant]

Hi Chris,

Phil is 3 months post his SCT and like Tom said, he is very itchy from the hair growing back. Phil doesn't have a rash but the hair growing back is causing a lot of scratching 🙂

Megan

[meganjaneParticipant]

Hi Jean,

I did the same thing just before Phil came home, dettol on every surface, all light switches and door handles cleaned and I carried on doing it daily for the first month but as his blood results got better I was able to ease up on the daily cleaning. It is funny how the new found understanding of germs changes your perspective, I clean my desk at work daily now to avoid other people's germs! 🙂

I hope Frank's calcium levels are quickly sorted, Phil had the same thing when he was in hospital and he just had to take extra adcal daily until the numbers came up.

Megan

[meganjaneParticipant]

Hi Maureen,

That is great news, hopefully it will inspire Ian to do more physio and get home as soon as possible 🙂 The trips to the hospital must be wearing you out, please try and look after yourself as well.

Megan

[meganjaneParticipant]

Hi Val,

That is great news and very encouraging for those of us at the start of the journey, my husband Phil was diagnosed in May 2012. You are right about all the new treatment options that are becoming available.

I hope the house move goes well.

Megan

[meganjaneParticipant]

Hi Babs,

Happy Birthday stem cells :-). Your post is very encouraging for Phil and I, Phil's first stem cell birthday will be December 20th, 2013. Enjoy Australia and your other holidays.

Megan

[meganjaneParticipant]

Oh dear, sickness on top of everything else, how terrible:-(

Phil had his first cycle cut short as they were worried about the lesion on his right leg causing the leg to fracture. He missed his last two Velcade injections of cycle one as he was admitted to hospital to have the right leg pinned (Phil prefers the term nailed as he thinks it sounds better:-) ), after the first op they decided to keep him in to nail the left leg as well. The time in hospital and recovery when he got home meant the start of the second cycle was delayed by 16 days. Phil also missed the last Velcade of cycle three as he was in hospital with pneumonia. The last two doses of cycle six were reduced due to the neuropathy. Despite all of this delay and missed injections the dox-dex-Velcade treatment took Phil's pp numbers down from 32 at the start to 5 before the transplant. In Phil's case they started the treatment again as soon as he was well enough after the ops but they did not make up for any of the missed injections which may actually be a good thing as the missed injections could have made the neuropathy that much worse:-/

Hopefully Peter will be able to start up again as soon as he is over the chicken pox and virus, I think the delay will only be as long as it needs to be for Peter to be well enough for treatment.

I hope this helps,

Megan

[meganjaneParticipant]

Hi Trish,

I am so sorry to hear that it is chicken pox plus a virus, no wonder Peter has felt so poorly. I hope the antibiotics and anti virals help Peter to start feeling better soon and then the 2nd cycle can get started. I know from our own experience that a delay in the cycle starting is not a problem as it is more important to be well than to carry on with the treatment no matter what. Phil had one cycle delayed and two others cut short, it does mean the end of treatment date you have in mind gets extended but you will get there.

I hope Peter feels better and that you avoid getting chicken pox!

Megan

[meganjaneParticipant]

Hi Pat,

Glad I could help. We read about it halfway through Phil's Velcade treatment but Phil does not drink green tea so it did not apply for him but we did wonder what else we had not been told by the hospital?? With the meds you bring home you can read the leaflets in the box but anything administered by the hospital you have to rely on the info they give you. It is hard enough keeping track of what you are told without worrying about what you haven't been told!! I hope you find another nice tea, I drink lemon and ginger herbal tea sometimes and it is quite nice.

Megan

[meganjaneParticipant]

Peter,

That is wonderful news, long may it continue.

Megan and Phil

[meganjaneParticipant]

Hi Jean,

I am so sorry to hear Frank has got a rash on top of everything else. Every time Phil was given platelets the nurse did warn him that a possible side effect of the transfusion might be a rash, luckily Phil avoided this particular side effect but I do think it is normal. It is a long journey while Frank is in the hospital but one day soon he will turn the corner and then the light at the end of the tunnel will become brighter. Phil was still very tired and always sleeping when he got home after the transplant but now, two and a half months since he came home, he is back to gardening, helping with chores and going to the pub:-) so although it takes time it is doable.

Make sure you are looking after yourself as well Jean as Frank will still need a lot of support when he gets home.

Megan

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