Category: Illness’s

Hubbys home – Multiple Myeloma – Stem Cell Transplant

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Hubby came home from hospital just under a couple of weeks ago thank goodness :0 ). As you know hes got Multiple Myeloma which is a cancer of the plasma cells. ( also known as plasma cell myeloma, is a cancer of plasma cells, a type of white blood cell normally responsible for producing antibodies.)

I must admit its very hard, and life is a struggle.  My hubbys just had a major procedure a Stem cell transplant due to his Multiple Myeloma ( Cancer).  After the transplant he managed to contract  mucositis which effects the mouth so no voice, painful to swallow and was hardly able to eat anything.  He also had septis and an infection in his pic line so they have removed it and hes on antibiotics. Hes had lots of plasma and blood cells pumped into him. When he was in hospital I was driving 1 hour and 20 mins to get to see him each trip so that was 2.5 hours at least travel to the hospital each day.

Plus also working full time, maintaining the house and garden and looking after the pup.  Just seeing how poorly hubby was and trying to remain upbeat and smiley for him was very difficult. The drive home from hospital was my quiet reflecting time and that time apart from driving was mostly spent crying about us both and basically feeling sad re our situation and being a complete softy.

Hes out of hospital now but its still difficult as we have the weekly hospital trips initially it was every couple of days. I’m still working full time, doing the house/garden and of course looking after my dear hubby. But I don’t begrudge the situation I’m more thankful to be honest as hes still here with me,

I still have my love my soulmate and I consider myself and us very lucky.

 

Hubby Pauls , recovering well though and I am seeing improvements each day.  Hes loosing his hair bless him hence the funky Buff headwear, but I really hope that soon we’ll know if the SCT worked and if he is in remission or not. 

We got out for a spot of lunch yesterday although it totally exhausted him and he had to go back to bed, at least we got out.  Sometimes a chance of scene is as good as a rest they say and yes I think they are right.  So onwards and upwards for us just moi, my gorgeous man and our super beautiful and loyal pup Suzie Q…….

 

Its Harvest Time – Multiple Myeloma – Stem Cell Transplant

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Wish Paul luck everybody he’s currently having his stem cells harvested at Manchester Royal over the next two days. Hes been sick and dizzy today, but he seems a little better now that hes been given an anti sickness drug.

Well Day 1,& Day 2 done then driving home day 2 and we get a call from the hospital note we’re about 15 minutes from.  Sorry but hes not produced enough Stem Cells they say, so can you drive back to collect more injections and then come back in for 8:30am tomorrow so we can harvest some more. Needless to say we’re exhausted by this point anyway and I was internally pissed off :0).  So we decided to drive home, let Suzie Pup out and had a cuppa before driving back.

Getting back to the hospital was a pain, lots of people around out on the lash ( drinkie poo resulting in drunkness) lol, they seem to forget that roads aren’t pavements.  I got annoyed as we got lost and swore alot ( sorry) but told myself to calm down as I didn’t want Paul upset any further.  So finally we get to the hospital up to Ward 44 we go Manchester Royal collect the injections and I said can I use a room so we can do the injections. Pointed to the relatives room, gave Paul his injections and a nurse turns up saying I’m here to give the injections.  I turned around and said I’ve done them didn’t realise they where going to give them .  She said oh did you know how to do it , I was like yep  no issue I’ve been injecting Paul twice daily for the last 7 months with Clexane anyway.

So its now Friday and hes totally exhausted unsurprisingly,  we have a gig on Saturday at Yewstock ( somehow we will get through it) . Back to hospital Tuesday for consent for the transplant and then the actual transplant and full blast chemo/stay in hospital on the 31st of July.

Oh what a week hey.

I’ve also started a fund raiser here for Paul to help with some time away after the transplant to recover and also help with travel expenses to the hospital and back. It would be great if you can share the link and even greater if you could contribute.  Thankyou in advance. https://www.gofundme.com/holiday-for-cancer-sufferer

Multiple Myeloma – SCT – how’s it going for you!

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So Cycle 8 of the twice weekly intensive Chemotherapy is now complete for hubster.   So glad this is his last cycle hes so fed up and needs a break.  Problem is that on the 3rd of July he starts the prep and consent for the Stem Cell Transplant doh!.

 

 

 

 

 

 

 

 

Unfortunately Paul’s still having his twice daily Clexane injections ( anti-coagulant replacing his Warfarin for the moment) which are leaving unbelievable bruises  – look at this devil.

 

 

 

 

 

3rd July 2018
So rolling forward to the 3rd of July, we met with the Hematologist at Manchester Royal , a really charming and funny chap.  The day was basically taking a measure of Pauls weight, yet more bloods, a run through of the forms, sign your life away and what happens during Stem Cell.  All very straight forward. The first part of the Stem Cell Transplant process is basically checking that you are fit enough. So you’ll have a series of tests to check before proceeding with the SCT and onto the next stage which is the harvesting stage.

https://www.nhs.uk/conditions/stem-cell-transplant/what-happens/#tests

1 – 01/07 – CT Scan

2 – 10/07 – Lung Function Test

3 – 12/07 – Bone Marrow Test

4 – ECG Test

5 – Harvesting prep – 13/07  – GCSF Injections ( note you need to keep them cool in the fridge) are to be given to hubby ( Paul) into his soft skin to encourage/stimulate the stem cells to go into his blood stream from his bone marrow).  So that’s me playing nursey again  – “Sorry Paul , Sharp scratch lol”

https://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/g-csf.html

I wonder if they picked Friday the 13th deliberately?

6 – 16/07 – Bloods and consultation review

7 – 17/07 – 18/07 – Harvesting the Stem Cells at Manchester Royal

8 – Conditioning ( basically an intensive blast of chemo  – say goodbye to your hair – sorry)

9 – Stem Cell transplant and a few weeks stay in hospital.

 

Lung Function Test – July 10th 2018

This was a strange test , seems they are testing to see how strong you are by making you breath into a bag that’s attached to a machine. Paul had to blow into the blue pipe that has the bag attached to it , short and long spurts of pushing air out of your lungs. The machine then very cleverly works out your lung function capacity.

 

Its Bone Marrow test day – July 12th 2018
Well its been a funny old day today . Hubby Paul my lovely unlucky chappie is the one with the Multiple Myeloma ( Cancer) , he had his bone marrow test today in prep for his Stem Cell transplant. He’s having the cell extraction next Tuesday and Wednesday at Manchester Royal. They tried to get his bone marrow via his hip to extra the bone marrow cells but couldn’t do , it just wouldn’t go in (he must have bones as solid as granite eh?) , so the doc went in via his chest. So here’s what they do they swab the area of where they are going to extract the bone marrow.  In hubbies case his chest, then they inject a local anesthetic.  Then lastly certainly from what I saw they use what looks like a tube with a needle on the end but its a different type of needle to the usual injection ones. They remove a sample of bone marrow cells or an area of bone marrow in one piece. Here’s a link to the procedure if you want to see the graphic details https://www.cancerresearchuk.org/about-cancer/cancer-in-general/tests/bone-marrow-test.

I stayed in the room during the procedure, moral support and all that. Hubby screamed, I’ve never heard him scream before it wasn’t good. I brought him home about 10:30am from hospital and hes been in bed asleep since. Only waking for lunch and drinks. Feeling very sad, lonely and pretty useless today as theres not much I can do for him apart from food, drinks and checking on him.

Pups on guard, well looking at her maybe shes guarding the fan as its super warm who knows.

 

 

 

So thats it, next week we have the pleasure of attending hospital three days in one week and the harvesting starts.  Oh joy bring on the Harvest Festival. !!!!!!

Multiple Myeloma – Whats that Paul?

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10/06 – So I’ve just read whilst searching around that for Manchester Royal if you are having Stem Cell visiting hours seem some what restricted. Hope I’m wrong Ward 44 shows visiting as  Monday, Wednesday, Friday and Sunday 2 – 8pm ( I assume no visiting Tuesday and Saturday) and Thursday is 3 – 8pm eeeek. Not sure how we are going to cope with that one as we’re always together when we’re apart its really horrible , we feel disjointed, lonely and sad as if one of us has died its really weird. But I guess we’ll have to wait and see what the consultant says in July.  ( Quick update 11/06 – Well phew a lovely lady on the UK Myeloma Support Group on FB advised if hubby is in isolation that I can probably visit when ever I need to – thankyou x )

https://www.cmft.nhs.uk/media/844460/ward%2044%20and%20haematology%20day%20unit.pdf

Been out in the garden today as its been so gorgeous, putting in a few new plants doing the raised beds and then we had a lovely barbi.  Still makes me giggle a little when Paul just falls a sleep mid flow.  I know I shouldn’t laugh but he does fall asleep in the funniest places, bless him. Hes so tired these days and sleeps at ever opportunity but I guess thats the intensive chemo and all the pills hes having to take (You can hear him from a mile off I call him shake , rattle and roll lol), I hope having the SCT changes that for him and he can do more of what he wants to do.

We’re now safely inside, managed to get everything in and the table/chairs and barbi covered up literally seconds before the heavens opened.  Goodness did it rain, but the gardens a lot happier. Made Paul a cuppa and hes currently  downstairs watching F1 he loves motor racing.  I got totally soaked oh well, one totally wet babe lol.

Check out my garden pics here I grow my own veg/fruit/herbs, first started in 2016 when Paul first got bowel cancer with the aim to making him healthier by growing my own vegetables. I think the fresh stuff helps keep him as healthy as possible , well I think it does :0) .

https://www.pinterest.co.uk/janiesingermode/my-home-allotment/

At least there’s no hospital tomorrow, as its a week three so no chemo.  I love the staff at Oldham Hospital Ward F11 Day Unit but blimey its super boring just sat there waiting.  Paul’s always last , I don’t know why and he gets so fed up and bored. Still got tablets and his 2nd injection today of Clexane to do ,but overall its not been that bad a day really.  Paul’s feeling okay just tired and a bit head achy.  I have the day off work tomorrow so going to go out for the day depending on how Pauls feeling.

But the good news is , is that I have a surprise for him that I hope hes going to love :0) , I might tell him tomorrow, mmm might do that as he needs cheering up.

To be continued…………….

 

Multiple Myeloma and my Paul

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Hey all, Lady Jane ( Janie B here)  – so as some of you may or may-not know , my hubby and soulmate Paul  was diagnosed with Multiple Myeloma December 2017.

 

Paul’s already had 7 cycles of intensive chemo which is twice weekly and is due due to start cycle 8 next week and is being treated at Oldham Royal Hospital.  I just wanted to say BTW the staff on Ward F11 are amazing. Special mention to Sue on reception who has an amazing memory,  knows every-bodies name and is super kind.

Medication wise Pauls on Velcade ( Bortezomib) twice a week. Plus stacks of other tablets and morphine for an existing chronic pain condition he had before the Multiple Myeloma that effects his right side and mobility. Plus for good measure he also has twice daily Clexane injections.  He was on Warfarin as a result of  having three Pulmonary embolisms but it was effecting his treatment and blood levels.  Plus, as if that wasn’t enough he also had a Bowel Cancer operation in 2016.

 

 

 

 

So what is Multiple Myeloma?  – well you can catch a definition here  https://www.nhs.uk/conditions/multiple-myeloma/  but its basically un-cureable and is a cancer of the bone marrow. It’s called Multiple Myeloma as the cancer often affects several areas of the body, such as the spine, skull, pelvis and ribs.

Theres also lots of information here – https://www.myeloma.org.uk/ and https://www.facebook.com/myelomauk/?rc=p ( Tel – 0800 980 3332.)

After the official diagnosis we wondered how long Paul had left as there are so many conflicting stories out there , from what I read up to 44 months most live longer and thats just the average.  If you are younger ( Thumbs up to Paul) then you have a better chance of surviving longer and apparently the Stem Cell Transplant helps to lengthen this survival time and some survivors have been around for years.  So we have decided to take whats out there with a pinch of salt and just ignore, try not to worry ( although its hard and I still cry far too much)  and get on to ensure that Paul is in as good a state of health as is possible.

So far with the chemo hes been lucky re his side effects,  having just a few teary eyes ( emotion), dizziness and also extreme fatigue which has effected him completing day to day activities ie sorting out a bag of wires , walking etc and is sleeping most of the day ( so I’m very lonely which I feel very selfish about thinking of myself) and his concentration isn’t great. I must admit when he was first told he may have it and then when it was confirmed , we sort of shut down, closed the curtains and cried a lot ( and when I mean a lot, it was lots and lots and lots) . But we moved through the shock emotion very quickly into fighting and pissed off mode.

 

 

Paul is a lovely chap 6:3 tall , lovely kind eyes with a twinge of naughtiness in them , a daft sense of humour and the thickest head of hair which causes hair envy with our Hairdresser lol.  Paul’s a very musical chap , he loves playing guitar, writing songs and poetry and is part of my band Skyeladder www.skyeladder.net

https://www.facebook.com/skyeladdermusic/

He’s the best, kindest person, super laid back chilled and most solid person I know and I still struggle with understanding why hes going through Cancer again.

Seems God or somebody feels that we need to be challenged constantly and I describe Paul’s illness’s to my friends as small bumps in the road or little project challenges!.

 

 

 

 

 

 

 

 

 

You know though ,  even after all of this illness and stress in our lives we are both still very positive.  Mentally we try to see ahead and plan little trips and have future plans to push our music and visit places/try things that we’ve talked about.  We even have an EP called “Life is for Living” that we are recording/mixing currently that will be out this year.  Check out our funding project here https://rocketfuelhq.com/skyeladder   Paul also practices meditation as he says it helps him to not only deal with the pain the CRPS and Cancer causes but also helps him to manage his illness and mental health.

 

 

 

 

 

 

 

 

 

 

 

Paul’s treatment so the consultant says, is going well and I guess we have to be thankful in that we still have each other and his numbers are going in the correct direction after 7 cycles of Chemo his Paraprotein‘s are currently 21 previously 51 ( Thank Goodness).

 

He has his second appointment with Manchester Royal first week in July to start the prep for Stem Cell Transplant and I must admit I’m super worried. Having a SCT is a really big deal , I know the consultant had to say it ,but he warned us that there is a small chance of Paul dying during this procedure ! and I must admit though its a really small chance, its very scary and  its been preying on my mind ever since.

 

Lastly a quote from Paul that had me in tears. ” The worst part of this from a selfish point of view is not being able to do as much as I did and not being able to pick up the guitar as much as I did.  The biggest thing that really frustrates the life out of me and annoys me is how it effects you Janie.  I hate the fact that you feel lonely and that you have to do more it makes me feel so angry. I don’t care about the Myeloma, its  how it effects you Janie. There is nothing I can do about it apart from fight and keep on keeping on .”

More soon……….