SCT waiting for pet result

Dear Mike Phew!!!!!!    What a hard time I have had, I went into hospital on 6 November for my transplant and only came out on 12 December.I was very poorly for 2 weeks but managed to improve thankfully. It was the hardest thing I have ever done and now I am at home it is still so difficult. . The Drs were so proud of me but have told me It will be 6 months or more before I begin to feel anything like. The treatment has really battered me ( I think my age doesn't help) I have ben left with the horrible dry mouth which sticks to itself making it very hard to eat, I have quite bad fatigue and I am deaf, this is due to some anti biotics I was given and am awaiting an appointment with a hearing consultant .I have to visit the transplant team every week at Christies for checks but so far my blood counts are ok. Last night I was really sick so that doesn't help. Anyway I am taking one day at a time & praying that things get better.Will keep you posted Gwen xx

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Hi Gwen, great to see your update, though sorry to read its been tough and still is, sending positive vibes that things improve as 2019 progresses and your experience drifts into the dim and distant past, Mike might be able to offer advice on the hearing front and hope you get some relief there too.

best wishes

John 

Hi Gwen,

so sorry it’s been that tough for you, bless you, but from now on it’s baby steps each and every day towards recovery! 

About the dry mouth problems, regular sips of cold water with maybe a drop of lemon may help? Also a dodge I was given by a singing tutor; move the tip of your tongue to the back teeth and push, once each side; it encourages the salivary glands to work. The big choir (associate of the Hallé)  I was in was doing a recording session and this was a way of stopping us all reaching for a water bottle! 

Hugs xxx

Hi Gwen  sorry for the delay in getting back to you but we have just arrived over on the West Coast for a few days R&R in a place called Sheldaig on the shores of Loch Gairloch - and relax.

We were coming over the same days last year but I ended up in hospital for a week in isolation with the RSV Virus and Pneumonia.......SCT can keep on taking.....but it did give me life ;)

So a 6 month target is a good foundation to go foward with and yes 'hard' takes on a completely different concept during post SCT and we have no words that can actually prepare everyone for this part of the rollercoaster but little steps is the way to go.

Little 'actual' steps will help the Fatuge.

Little and often snacking on food helps - but soft foods.

Like regular cups of good home made soups with some double cream, mash with some butter and melted cheese, custard......I went through scrambled egge as though it was going out of fashion. It does improve but can take time.

Try to drink lots of water to get your body hydrated as this will help your mouth but remember to regularly highlight this to your team so they can check you out. I was snacking on fresh pineapple and tins of mandarin oranges, for me it helped.

Some antibiotics can cause temporary hearing loss but make sure your team keeps an eye on you.

One of the cancer drugs I was on for a few years before I had to have my full on chemo and 2 SCTs did kill of my hearing in my left ear by 90% and 60% in my left..... but Fiona says that I use this as a good excuse to get out of things lol.

You are doing great and this period is like walking into a very strong gale, head down, coat up around your ears and keep on going. You know what the destination is so keep pushing towards it xx

Ohmygosh, you've been through a lot. Recovery from SCT is many many itty bitty steps. Hang in there! It will get better.

Dear Mike   It's been so long since I contacted you but I have been really unwell. Recovery for me is so slow 9probably because of my age) My hearing is much better but I'm waiting for some hearing aids as the sound is muffled. My eyes g=have taken a hammering I goy some fresh glasses but they don't help so I have an appoint next week to assess what can be done. The SCT has really wiped me out but I think I am improving. Had the result of PET scan last Friday and was stunned when I was told I am cancer free at the moment. I am now being passed back  from the Transplant people to the Haematology consultant for onward monitoring. I am still feeling so weal , tired and nothing like myself but am assured that I will feel better by June so here';s hoping. I never dreamed the transplant would be so bad  and could never do it again. Anyway I'm still here so I needed to let you know. Hope all is well with you. will update you in June Gwen xx

Hi Gwen, first a high 5 on your clear scan, a great result.

6 months post SCT and your SCT Team referring you back to your Heamatology clinic is great and a good sign of positive progress.

Yes, my hearing and eyes also took a hit during all my treatments so two hearing aids and a few new pairs of glasses were the order of the day.

The recover will take time and at 6 months post SCT I was only a few months out of my wheel chair so you are doing amazing.

Please keep in contact xx

Hey Gwen,

thats good to hear, being transferred back to haematology is a step forward.

as for getting well again, it will come, a wee push in what you demand from yourself each week and that energy and stamina will steadily improve.

hugs xxx

Dear Moomy  I am really trying but everything seems so hard at the moment.I try to go out as much as I  can but depending on where & what time I have to arrange Rind 'n Ride , or get a bus or drive myself ( if it's not too fa0). I also walk about a mile every day except when it rains or is really cold. I have also tried some gardening but this really tires me. I know how lucky I was to get a transplant , just want to believe that I will get stronger and nothing else bad happens. Love Gwen xx