Posted by: glenswatman | October 20, 2012

20121011-20 The mother of all man flu’s

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THURSDAY 11 OCTOBER – Now I’ve got my bus and trains times sussed I leave my bag full of time tables behind. Walking from the car park to the train station it starts to rain and I realise that my brolly is in the bag I left behind. Today Steve has a “protective isolation” white sign on the door indicating white apron, hand sanitiser use on entering or leaving the room but no gloves. He’s still feeling really sickly although the diarrhoea has settled. He’s losing a kilo a day so I pester him with food but at teatime he brings it all back. Dr Gilleece has told him this “flu like” feeling will last for at least another week and possibly for many weeks as it is an effect of his immune system being down. This is all normal and there is nothing to worry about (other than from my point of view trying to keep Steve hydrated and fed). The white blood cells and neutrofils have risen a little but Luke explains this often happens before they bottom out properly. He’s so weary today that I only manage a back massage and threaten not to return tomorrow unless he will have a shower as well. Leaving just before 6pm I notice the Police have blocked the road in front of the hospital. Turns out there has been a 2 car crash a little further along in front of the hospital, very convenient for the drivers but inconvenient for everyone else as traffic including buses can’t get through. A woman at the bus stop she says it will be quicker to walk into the centre using the short cut to the bus station. Accompanying her at a great pace it begins to rain and gradually I get soaked. At the bus station I find there is no bus to the train station so end up continuing on foot and needless to say miss my train.
KEIGHLEY – ST JAMES 14 (+6)

FRIDAY 12 OCTOBER – I dye my hair then wait for the Postman’s Special Delivery. I’ve signed up to be a mystery shopper and today they are delivering my James Bond style spy camera which will take the place of a button on my top. At the hospital I manage to shower Steve, give him a message and get him to eat a little more. All to no avail as the minute he takes a bite of his evening meal he vomits and completely fills a sick bowl. The nurses give him an anti sickness injection and will back this up with a tablet later, just wish they could get this sorted as he is losing weight fast.
KEIGHLEY – ST JAMES 15 (+7)

SATURDAY 13 OCTOBER – In town there is a fun fair, stalls and entertainment by way of Morris Dancers. I buy some anti freeze for the car; next I will need to figure out where to put it. At Mom & Dad’s I iron and hang their new curtains and they are delighted with the effect. Today Steve is feeling sicker than ever and has lost 2kg since yesterday. The Doctor says his counts are still coming down so the sickness is to be expected and they will try and increase medication to get it under control, he is already on a syringe driver, having medication in his drip, injections and tablets so guess they have to increase the strength. Doctor explains it is due to the pre transplant chemo that has destroyed any fighting parts of the body and basically stripped Steve’s stomach which has left it very delicate. This also explains his sore mouth but unfortunately this will all get worse before he gets better and his flu like feeling will last for a few weeks – not quite what Steve wanted to hear. His platelets are down to 8 today so they give him a bag to top him up. With much coaxing I manage to massage him and give him a shower. Picking up an infection is a big risk with his immunity so low so a daily shower is essential. Claire phones and arranges to pick up some food and she and Natasha will have it ready when I get home. It’s lovely not to return to an empty house and the chicken and chips goes down a treat followed by lots of naughty but nice desserts. Natasha wants to stay the night so Claire heads off alone to pick up Daniel from doing a show in Halifax.
KEIGHLEY – ST JAMES 16 (+8)

SUNDAY 14 OCTOBER – Natasha and I struggle to work the “spy camera” that I have received ready for my mystery shopper job tomorrow. When I drop Natasha off I leave the camera with Daniel for him to figure out. I may have a job getting it back off him as he is well impressed with it. At Sandra & Keith’s we have a good natter and I enjoy her home cooked lunch. Trains are different times on Sundays so I don’t get to hospital until 2.30pm. Steve is really fed up as he now has a swollen sore dry mouth to contend with. Although they haven’t got his sickness under control he is usually OK until the evening and has today regained a little bit of weight. Dr Doom and Gloom visits and tells us that most people make it through the 100 days and then have problems, deep joy. Steve manages to eat some fruit salad and crisps and finds he likes the grapefruit squash. I fail on the attempt to get him to shower but the massage still seems to help. Leaving hospital I miss the bus and have to wait 15 minutes, miss the train and have to wait 30 minutes and begin to wonder if I am going to miss my car as well. I head to Claire’s to pick up my spy camera and end up having a curry, cake and a cry, think it is all getting a bit much.
KEIGHLEY – ST JAMES 17 (+9)

MONDAY 15 OCTOBER – I dress for my mission with the camera taking place of one of my shirt buttons. I test it out in the lounge then drive down to the Peugeot dealer. Other than having to give a false name, address, email and phone number I stick to the truth and it helps that we are actually looking for a car. I do a test drive, gather all the info requested then return home to view the video. Major oops, I must have moved the camera position when I put my seat belt on and have plenty of footage of the showroom ceiling with just small corner clips of other things. Think I am more Johnny English than James Bond. I phone the company and they say to get it back to them by special delivery but it should be OK especially as I have all the dialogue. At St James hospital I visit the Robert Ogden Macmillan cancer centre where they offer support. I don’t know why but the minute I go in to these places and get met by such kindness I always end up blubbing but they expect this and have tissues on hand. I explain my situation as a carer and they say I can have 10 free complimentary therapies and Steve can have the same on the ward. I book in for reiki this week and massages next week. This afternoon someone will call in to give Steve a hand and foot massage if he is up for it. There is a lounge area where you can just relax and have tea and biscuits whenever you want or a chat. On the ward Steve has a temperature but seems a little more animated. It’s much easier to coax him in the shower where we notice that his hair is coming out in chunks. He’s just settled back in bed when the volunteer arrives to give him his massage and tells Steve to tell the nurses whenever he wants another complimentary therapy. A porter arrives with a wheelchair to take Steve for an x-ray. This morning the Doctor thought she heard something amiss on one of his lungs. It’s the first time in 2 weeks that Steve has been out of isolation so I am annoyed to find the nurse in radiology has a cold. I explain Steve’s situation and she says she wasn’t advised but will get someone else to do his x-rays. I take the bus to Wakefield where Auntie Pamela is waiting with her car near the bus stop. She makes a big fuss of me and once Karen arrives we sit down to a salmon dinner then chocolate profiteroles, strawberries and cream. Auntie Pamela insists on clearing up whilst Karen and I chat. After Karen has left I chat to Auntie Pamela then have a relaxing bath before bed.
WAKEFIELD – ST JAMES 18 (+10)

TUESDAY 16 OCTOBER – Mid morning Auntie Pamela and I head back to Leeds. We look around a few shops and have lunch at Marks & Spencer’s before I head to the hospital. Steve’s had a buzz cut and is feeling the cold so I dig out his trusty black beanie hat. The nausea now seems to be under control and as well as taking other medication in liquid form Steve is also keeping drinks and a little food down and the weight loss has stopped. Dr Marketa calls in and tells us the x-rays were normal but checks his temperature in relation to him feeling cold and sees his temperature is going up again so prescribes paracetamol. She also tells us that it could be Steve’s blood counts are starting to climb but it will be a few days before they can be sure that is so which would indicate engraftment taking place.
KEIGHLEY – ST JAMES 19 (+11)

WEDNESDAY 17 OCTOBER – In Leeds I visit the dentist and afraid of all the failed injections in the past I brave the replacement filling with no anaesthetic. The filling feels a bit high but the teacher check and say it is fine and just feels odd having had a shallow temporary one in for so many months. At Yates I use my voucher for free scampi & chips with a drink. Guess this is a popular bar at night as the carpet is disgustingly stained with drinks. I visit the MacMillan centre in the Bexley Wing and meet Val who shows me the top floor hotel. Patients plus a carer can stay here free the night before treatment or outpatient appointment and visitors can stay for £25 per room per night but it often gets full. Val explains she also does foot massage and will call in to Steve later. Today all Steve’s blood counts other than haemoglobin are up so another good sign. He’s not been sick for almost 2 days so all is looking good until his medication arrives. It looks rather like a pub bar with 4 different coloured shots lined up in small cups. One lot is a soluble tablet but when he takes it there are tablet dregs in the bottom. He immediately begins violently vomiting and in seconds has filed the sick bowl. It’s coming out so fast it is also coming down his nose. I call the nurse in who quickly returns with an anti sickness injection for his stomach and more medication to go in his drip as it seems the syringe driver alone is not enough. Dr Marketa arrives shortly after and cannot understand the sickness problem as it should get better as Steve’s counts rise, the only other thing she can think it might be is stomach ulcer but to confirm that they would have to do an endoscopy. Seems like we are back on the roller coaster.
KEIGHLEY – ST JAMES 20 (+12)

THURSDAY 18 OCTOBER – Bobby & Steph are hoping to visit tomorrow so I do a quick house clean then call in at Mom & Dads before heading to Leeds. At the MacMillan centre I get my reiki treatment. Pauline has me laid down comfortably on a coach and begins with a light touch on my head. In the background is soothing music with ocean waves and she suggests I may like to picture myself on a beach. Bad plan as I immediately conjure up memories of the hundreds of times Steve & I have laid side by side on a beach and the tears flow. Unperturbed she says this often happens with people and is a good release. I do calm down and enjoy the relaxing rest although I am not sure I feel anything special from the reiki. Dr Gilleece has been in to see Steve and says that if his counts continue to rise as they are he could be home next week, very scary as we know there are many more things that can happen. Steve admits he is not ready for coming home just yet and I am really not ready for the responsibility. He is feeling extremely tired but it is pleasant watching have a calm sleep during my visit. Arriving home Claire is there cooking us both a nice Chinese and we have a lovely evening chatting. Bobby texts to say he has a cold so we have to call off their visit.
KEIGHLEY – ST JAMES 21 (+13)

FRIDAY 19 OCTOBER – I’m having a day off visiting as Claire has the afternoon off work and is taking my place. Sandra calls round with some homemade ginger cake which goes down well with coffee. We lunch at Wetherby Whalers then do a 2 mile walk at Yeadon Tarn enjoying the warm afternoon with lovely sunshine. Claire reports that Steve’s counts have gone up again and he seems a little better but still feels nauseous. After calling in to Morrisons where Lisa is working we head back and I spend the evening copying more home videos whilst watching “stand up to cancer” on TV where they are having a fund raising evening to fund research to find cancer cures. Many of the stories are of very young people or those with young children and it makes me realise how fortunate we have been to have done as much as we have in our lives.
KEIGHLEY – ST JAMES 22 (+14)

SATURDAY 20 OCTOBER – The workmen finally turn up to do the ridge tiles on the roof so I make them a coffee and leave them to it. Today I visit the Thacray Medical Museum attached to St James, £7 for an annual pass. It’s really interesting going all the way back to the old streets of Leeds with explanations about the diseases that were rife in those days and the treatments that are now available. It’s so big that I only see about half before it is time to visit Steve. Today there is no isolation sign on the door which is progress. He’s still pretty grumpy and sleepy but managing to eat and drink a bit more without being sick. Today he is allowed out to use the bathroom and although he enjoys his wallow in the bath he can’t believe how shattered he is once he gets back to bed. I still manage to coax him out for a walk around the ward corridors. It seems there are a lot of people not eating on the ward so I am offered jacket potato and chicken tikka masala which goes down a treat. Steve’s counts are still going up but haven’t reached 1.0 for white blood cells and this coupled with his dependency on the anti sickness syringe driver are preventing him coming home but with luck should come good next week.
KEIGHLEY – ST JAMES 23 (+15)

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Responses

  1. Pecker up! Steve you are doing really well- and Glen how fantastic are you being!I look forward to your blogs of how Steve is doing, how you are coping and all th positive things inbetween!Well done!
    I went to see Stuart and Marcia the other day and they send BEST WISHES to you both! Marcia was doing really well- but then things went a bit awry- and she is now back in Alicante Hospital with further surveillance- still good treatment though!
    Positive vibes still being sent your way- TAKE CARE- love A and B


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