Category Archives: Recovering

The Festivities

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Christmas Day and Boxing Day . . . . . .

So, here it is, Christmas morning, and Santa’s been! During the night, whilst in a fitful sleep, a small present was left on the table: Friends of RCHT had been super busy, and most thoughtful. A small packet of tissues, notebook and chocolate ~ a lovely gesture!

My son is still being pumped full of chemotherapy, but is quite excited to be escaping later on this morning. The last bag of fluid is due to finish at 11:50am, then we wait for the 4-day pump to be attached to his chest tubes, containing slow release of bleomycine.

As the morning passes, son begins to feel a bit sick, perhaps the combination of the drugs and Christmas! Hopefully this won’t delay our departure.

Just after twelve thirty we are driving home, to swap our hospital bags for those containing presents for the family. A quick wash and brush up, then we head to my sister’s house for Christmas dinner. We didn’t know how much of the days’ festivities could be enjoyed by our son, but as it turned out, he was able to join in for most of the remainder of the day. Dinner, crackers, present opening, board games, television, Skype sessions with my brother in Chicago, afternoon tea and Christmas cake. He kept going strong until nine thirty, then the weariness hit him hard, and we could see that he was totally wiped out. We got him home, and into bed an hour later. Happy-ish, that he had actually been able to enjoy a normal-ish Christmas.

Boxing Day seems a little flat, but we go out for a drive in the car, drop in on my sister for a cup of tea, then visit with my Mum for a chat. Our son is quite perky, and stays awake for the whole time, snacking on small amounts of food; an easy going day, relaxed and trouble-free.

Three nurses’ telephone calls

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Wednesday 18th December

Yesterday we left Exeter and drove to Plymouth where we spent about four hours Christmas shopping. I took it slow, stopping for coffee breaks and lunch, but by the end of the day, my foot, ankle, calf, knee and thigh were incredibly swollen. Up until now, my only exercise has been bursts of about twenty minutes, going from the house, to the car, to the local supermarket, and then sitting in a coffee shop.

So on Wednesday I didn’t get out of bed. The swelling of my left limb was quite scary, and I didn’t want to risk any further problems. I lay there, with my leg elevated, and dozed for most of the day.

The first phone call I received was from one of the Macmillan nurses asking how I was doing, and whether I had made a decision on the Truro trial for Brim8 (vemurafenib). I apologetically declined, stating the very frequent monitoring, increased side effects, and the fact that all I had read made the Exeter trial, Combi-Ad, the more preferable. She was very understanding, and thought that would be my decision anyway. She also made an appointment for me to see the other Macmillan nurse after Christmas.

The second phone call I took was from the trials nurse in Truro; she wanted to know my decision. I felt a little bad declining their offer, but she too was most understanding.

Finally, I was called by the lymphoedema nurse at the local hospital in Hayle. We organised an appointment for later in January, where she would show me lymphatic drainage massage to control the swelling of my leg, and when she would take a lot of measurements of my leg, ready to have garments fitted. ‘Garments’???  Oh, those wonderful support stockings that guard against lymphoedema.

Well, anything that helps me return to some semblance of normality, I suppose I will have to accept. Trials, tests, monitoring, travelling, even support hose ~ if I value my life, I will do as the experts direct me.

A quick dash to the hospital !

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Friday 6th December

Well, I didn’t expect a rushed visit to Treliske today!!

Having seen my plastic surgeon on Monday in Exeter, and told the drainpipe in my leg was not ready to come out (still losing too much fluid), I phoned the Macmillan nurse in Truro today.

The top of my thigh really was beginning to feel very ‘wooden’, hard and bruised. She said to come along straight away!!! At Truro they don’t like drains being in for more than two weeks, mine was there for three and a half weeks.

I saw the nurse immediately, who then brought in a consultant, and a phone call to Exeter made. Yes, the tube could come out!!!

The nurse thought the bruising and hardness was due to a blood clot or a haematoma. The tube was unstitched, and came out quite freely. It was blocked!!! Not allowing the blood and lymphatic fluid to drain away as it should. She then massaged, or ‘expressed’ the area, and lots of ‘stuff’ came out, and it really did lessen the hardness of the tissue below the surface of my skin.

I now have a plastic drain bag stuck to the inside of my thigh, carefully placed over the hole/open wound, but no invasive plastic tube!!! Yay, so much more comfortable!

The consultant drew a line in black pen, showing the outline of the hardness below the skin ~ if it spreads any further, I’m to get myself back there as quickly as possible.

I then asked the Macmillan nurse about possible drugs trials at Truro, and she said she would put things in motion for me to see the oncologist here, instead of having to travel all the way to Exeter on a monthly basis. We’ll see.

So, I end my day, minus the invasive plastic tube inside my thigh. The area still remains bruised and swollen, but hopefully now any further fluid can drain out properly, and the wooden feeling will subside.

Another Pyjama Day

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Friday 22nd November

Slowly, slowly, day by day, I try to be a little more active. I know I’m supposed to be a bit more mobile, but it really is an effort to actually get out of my warm and toasty bed!

I come downstairs at midday, potter about a bit, make some phone calls, and then my husband brings me a cappuccino and the Friday papers; I lounge on the sofa for the rest of the afternoon, elevating my leg.

My dinner was cooked for me: wonderful seared tuna, broccoli and grilled tomatoes. I soon decide to go upstairs to lie down, and a lovely cup of tea duly appears at my bedside!!

I’m still feeling very tired, and my left leg/thigh is quite stiff/heavy/numb. I will be sooooooo glad when the tube is removed ~ most uncomfortable and unsociable.

There’s no point in getting dressed because I won’t be going out, not with the plastic drain bag still attached to my inner thigh ~ I’d be hobbling along feeling most self-conscious. So I remain in my pyjamas yet again. Up until this episode I had never owned any kind of nightwear or ‘lounging-around’ gear! No need. And yet now, I have a new selection of ‘outfits’ in which to feel lazy, sloppy and relaxed! As soon as I am able they will all go to the back of the wardrobe allowing me to wear normal clothes again. Almost two weeks in nothing but hospital gowns, nighties or pyjamas is surely enough for anyone!

Time to get out of bed!!

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Thursday 21st November

It really is about time I got out of bed and had a proper clean up!!

This thought was prompted after I’d asked my husband to pull off the tight compression stockings I had been wearing for the last ten days, and I saw his nose screw up. Oh, do my feet smell? Hmmm, only a little bit!!

Right that’s it, make an effort, stand in the bath tub, and have a damp flannel scrub-up. I can’t yet have a proper shower, as the wound hasn’t healed, and the tube sticks out of a hole in my thigh ~ must guard against infections and the like. Still, I think I now smell better than I did!

I then lean over the bath precariously and wash my hair with the shower head ~ it is so, so good to have clean, shiny hair again.

My lovely husband then rubs coconut oil on my feet and legs as they had become very dry beneath those white, nylon stockings!! (I can’t bend down to reach my feet ~ plus it’s so good to have a mini foot massage!!)

I then put on a really loose pair of warm pajamas, and come downstairs; the first time since arriving home on Monday.

I phone my mum to tell her that I’ve cleaned up, am sort of dressed, and ready to accept visitors ~ if she wants to see me she’d better come round soon, or else I may go back to bed!! We have about half an hour chatting, drinking tea and cuddles, then my husband takes her off to the supermarket.

I make some toast, potter about in the kitchen, fold some laundry and do some online banking. As I have been standing for much longer than during the last three days, my drain bag fills up by 75mls in four hours ~ whoops, I do need to rest, and elevate my leg. I spend the rest of the afternoon on the sofa, and am visited by my son, his girlfriend and their lovely little puppy.

They bring me a beautiful silver necklace with a green amethyst, so unusual and so thoughtful.

I need to go to bed soon and stretch out my leg so that it is horizontal. All this getting up and moving about leaves me quite tired. But I am thankful for a great day with spent with family.