Oncology Appointment

Full details on my Cancer Diary page.

I had my appointment with the oncologist today, a charming Chinese lady called Dr. Lo, who immediately put us at our ease. I had been told that the surgery was considered curative, but would need some chemotherapy afterwards as "belt and braces" to mop up any rogue cells which might still remain in my system.

I had been hoping for a single cycle of oral chemo, but in view of the fact that my cancer had invaded through all layers of the bowel wall and also into one lymph node, and was the most aggressive kind, I was told that it would be administered intravenously over the next SIX MONTHS!!! I was horrified when she told us that. Also, the oral chemo isn't suitable for someone with heart problems.

I am having Oxaliplatin (eloxatin) intravenously, every three weeks, for six months. This is far more radical than I'd hoped. I shall have a PICC line (peripherally inserted central catheter) installed for the duration of the treatment, and the chemo and any other drugs will be administered through the cannula in the crook of my elbow, from which they will also be able to take blood.

The PICC line will have to be flushed every week by the district nurse. Each treatment will take about four hours. Side effects will be cumulative over the course of the treatment, and which will be most severe immediately after treatment, and may include increased risk of infection, anaemia, bleeding and bruising, peripheral neuropathy (numbness and tingling in the hands and feet), and almost universally, extreme fatigue. Nausea and diarrhoea should not be a problem because drugs are prescribed to counteract these. There may be other side effects too; it all sounds pretty unpleasant.

As we left, my hubby took me into the chapel, which is just near the oncology department. It's absolutely beautiful. All around the altar are lots and lots of little teddies given in memory of babies who had died, and this moved me so much. Thinking of that made me count my blessings, and realise that whatever I've got to face, it's never going to be as bad as that. The chapel is such a beautiful sanctuary and I'm so glad we went in there before coming home.

I will be called in again probably early next week, when they will talk to me about my treatment, and possibly fit the PICC line and do my initial blood test and prepare me for the beginning of the treatment which will follow soon after.

I just hope I stay the course and can put up with it all... I am still finding it quite hard to get my head around the idea that I've had cancer at all, and haven't been able to think about that aspect much until now, because my brain has compartmentalised it all, allowing me to focus first on the surgery, then on managing the stoma.

It's a bit frustrating to think that I shall be made to feel poorly again just when I feel I am picking up after my operation and thinking I would soon get my life back again, but I feel it's still on hold and will be for some time now.

Home at Last!

I came home yesterday afternoon, after waiting 6 hours from being told I was being discharged, to receiving my drugs from the pharmacy. They also had to fix up the district nurse to come in each day to give me my daily Fragmin injections which have to continue for 28 days post surgery.

First of all, I want to say the hugest THANK YOU to dear Lucy for co-authoring my blog for the duration. It has been wonderful to know that all you my lovely friends out there have been kept up to date with news. Lucy has been co-authoring my blog during my absence, and getting updates from my hubby.

I also want to say another huge THANK YOU to everybody who has sent such fabulous comments, emails, cards and gifts. I have been overwhelmed by your love and kindness, and know for a fact how much you have all helped me gain a good outcome for my surgery by your tremendous generosity. I am going to try and reply to every comment and thank each person for their beautiful hand-made gifts and cards but I’m afraid this is going to take me a long time…

It is really lovely to be home. I had hoped that after 4 or 5 days I’d be up to having the laptop in hospital but I’m afraid that was not to be – I have found it very hard to focus on anything at all, and even now after 24 hours at home, am finding it a struggle to type – it is going to take time, but there’s no rush.

I am coping very well with my recovery. Shortly after my hubby brought me home yesterday, he went out to Newton Abbot station to pick up my lovely friend Alison – we first became friends at school 50 years ago! (Goodness that makes me feel old!) She and her sister take turn and turn about, looking after their elderly parents, so she works very hard, but she volunteered to take time out to come down and stay and look after us both! Not only is she seemingly a bundle of energy (she even found time to bake scones this afternoon!) and very practical and helpful, but she is a retired nurse (not many people end up with their own private nurse when they come out of hospital do they lol!!) and just having her around is a tremendous tonic – we have been chatting and laughing and remembering lots of fun things. Even if we don’t see each other for several years, we always just pick up where we left off and the years fall away. I am so, so thrilled to have her with us – more than words can say!

While I was in hospital, to start with the nurses simply emptied and changed my stoma bag for me, but after a few days, the stoma nurse came daily and showed me how to do it for myself. From the beginning my hubby was fully involved, and after a couple of days we were doing it together – he laying everything out, and helping with each stage, and one day doing the whole thing himself – learning how to do it for those bad M.E. days when I may not feel up to it. He has been soooo supportive and wonderful over it all.

I am surprised how un-freaked-out I feel about the whole thing – it is far less arduous than I ever expected. Now it is settling down and easier to handle in many ways. I shall be writing more fully about this in the coming days on my new blog, The Gutless Bag Lady.

They wouldn’t let me home until the nurses, OT, physio, stoma nurse and doctors were fully satisfied that my blood pressure was sufficiently raised (it had been very low), my mobility was improved, and my independence up to scratch, and that I could manage the bag myself. I was ready to go on Sunday, but because of the bank holiday weekend, there was nobody around until Tuesday to say that I was fit to go. The next hurdle is to wait for the next MDT meeting (which unfortunately couldn’t take place on Good Friday but will be this coming Friday) when the histology results will be discussed and decisions will be made about whether I have to have chemo. More of the waiting game…

I never thought that being in hospital could be FUN! The first half definitely wasn’t fun, but as I started to get better, things definitely improved in that direction! I am too tired now to say more, but in a subsequent post I’ll fill you in and share some of the laughs we had, and also some of the wonderful experiences I had and the lovely people I encountered.

Thank you again, everybody, for all your tremendous support and encouragement throughout my journey this year. Your love and care have meant far more than inadequate words could ever express. God bless you all.

She's coming home!!!

I'm delighted to be able to tell you that Shoshi is due to come home this afternoon! 

I saw N this morning & he had been in and seen her this morning & all going to plan should be picking her up later today. N's face is beginning to look a bit less bruised and he was his usual lovely self. A friend who is an ex-nurse is coming to stay for a little while to help Shoshi adapt to being home again so everything is looking great.

It's a glorious day here so a perfect day to come home.

If I hear any more I'll update you, but hopefully the next 'voice' you'll hear will be Shoshi herself. It may well be a while until she's up to being on the laptop, but I know she'll be on as soon as she can.

Thanks so much everyone for keeping up with her journey. I've sent print outs of your comments in several times & she's loved reading them. I know it means the world that you're all there supporting and thinking of her.

Lucy x

Here it is at last on her way home with her new bear Rupert named after the consultant. He was in a local charity shop with a note saying 'Please take me home' - so I did! Also a pic of our lovely river Dart with paddle steamer Kingswear Castle  heading for Totnes. I long to get my old speedboat Sundancer on the water

N

Update 4th April

I saw N a couple of days ago. To say he looked like he'd taken a beating after his fall is an understatement! Big black eyes and lots and lots of bruising. He was in good spirits and felt fine so it appears to be cosmetic. The lovely man had tried to hide the damage from Shoshi when he went in the day after the trip....... unsurprisingly she wasn't convinced when he wasn't taking his woolly bobble hat off!!! The result was a few tears and worries that he had no one to look after him. The nurses on the ward then saw and gave him a good telling off and marched him off to A&E to be checked out! All assessments passed so he's doing fine. 

Shoshi loved the printed out blog comments. N left them with her to read through at her leisure. She was definitely feeling the love and send love to all of you. 

I spoke to N last night & had this email so here's the latest update.

Have a lovely Easter All of you

Lucy xxx

S cheerful today and at last improving, eating adult but simple food, walking better, showered and hair washed and back in the land of the looking forward to being home. This may happen on Mon/Tuesday. I am a lot happier now, but apprehensive about having her here, but it will work out. We are looking after bagging all on our own, and I just wish it had been me as Shoshi finds it hard,ed but will get into a routine soon.

My bruised face and head looks like a ninja panda but is healing well.

All in all a better day and we send our love. 

N & Shoshi

Surgery +3 - an update on yesterday's post

N emailed me last night after I went to sleep so here's yesterday's events in his own words. 

I've spoken to him today and his head is fine. Still a fair bump on it but no ill effects. I'm very glad as it sounded like he fell good and proper last night and I was worried about him. 

I've sent the printed put comments into Shoshi today so hopefully she'll have seen them. I've got more to catch up and send in tomorrow 

Lucy x

Picture of Shoshi in morning after first change of bag which Shoshi I and stoma nurse did together without any accidents or problems. Later in the day there was a problem with her cannula from the syringe driver so no pain relief for about 2 hours till they did it again, a young doctor hurt her hands digging with the needle, .Shoshi hurt and sobbed, not a lot of energy, lot of pain (8 out of 10) and helplessness. glad I was there. Within half an hour the pain was less 3 out of 10.

She is with Nursie bear which I often sent to hospital with patients that understood bears, Horace a new bear given by couple I married to Shoshi, and Mr Humphrey Roberts named after the consultant who did her hysterectomy 20 yrs ago when I got him in London and slipped him under the covers of her ward bed to hold to her tummy He is a Earls Court Aussie platypus.

I was wacked out tonight and fell down in the road and hit my head. Big bump halfway shrunk thanks to Tesco frozen peas. Just having a mug and a rock cake, may have a golden nectar and head to bed soon. All well and no colour. See what tomorrow brings.

Surgery +3

I've just had a chat to the lovely N who's been updating me on Shoshi's Day. 

Poor N has been in the wars himself tonight after tripping while crossing the road this evening!

He's got a big bump in his head but says he's ok. 

Poor man not one thing but another happening this week!

Shoshi is ok and sends her love to everyone.

She's had a varied day.

This morning was good. The Stoma nurse arrived in the morning while N was there and helped change the stoma bag for the first time. The Stoma behaved beautifully and Shoshi was totally unphased by the experience so that's a great step.

This afternoon N's Brother and his wife went to visit. N took in Shoshi's wheelchair for her to sit in and that was a lot more comfortable than the attempt yesterday in the too tall chair. 

Later today wasn't so good as Shoshi's syringe driver got blocked so N thinks she had about 2 hrs without adequate pain killers. A newly qualified Dr came and tried to give pain killers by syringe in her hand but completely failed and ended up stabbing her loads of times until she was in tears (not saying anything negative about newly qualified doctors - just this one for this task). A nurse came along about half an hour later and fixed the syringe driver and Shoshi was comfortable again when N left her this evening 

Apart from that hiccough everything seems to be going well. 

I let you know when I hear more. I've got all of your comments printed out to send into her tomorrow. I know they'll make her smile. 

Lucy x

Two Days Post Surgery - Update

I've just had this email from N. All seems to be going well which is so good to hear.

Lucy x

The medical team were stars and rallied around Shoshi and stayed on and did her op, and she was looked after with personal care over her first night.. She was all woozy with a happy morphine grin when I saw her in the recovery room.

 Yesterday pretty sleepy and full of pain killers and morphine but very happy and relieved whilst   quite at peace with her bag..

Today improved and sends her love to you all. She was sat out for 10 minutes but the chair was awful. Her feet did not reach the floor and her weight was on her tummy. So she was back to bed. She will walk a little. As they have not known her before they will need to realise that if she used a chair and crutches she is not going to be striding corridors in a few days. they are a kind lot so she should be ok.

She is not up to reading and a laptop may be several days yet so I will have to suffice.

Here is a pic of her yesterday with "Nursie Bear" who went to hospital to look after dozens of my old parishioners and now is with Shoshi.

So love from Shoshi, Nursie and N

Surgery Happened!!!

I'm delighted to be able to tell you that Shoshi's surgery finally went ahead!!!

I had a very brief phone call from her husband just now saying that she had just come out of surgery.

Then this email:

"Sue through op. tired and sore. We had a drama today as we got in and it was again cancelled this morning due to no High Dependancy Bed, but there was no phone call before we set off half an hour before set time..So we went and were told, poor Sue burst into sobs and was desperate. The wonderful team then pulled out all stops and made a decision to go ahead, the anaesthetic will be very different and she may have some more pain but she bravely accepted their offer and went ahead. We will get through. she sends her love to you and all bloggers."

I sent all of our love and will print out any comments so Shoshi can read them in hospital while she's waiting to feel better enough to have her laptop. 

I'm Soooooooo pleased to have finally been able to write this post!!!!

WOYWW 303

Here is a picture of one very tidy (and very unproductive!) desk, from someone whose mojo has vanished without trace for the duration.

I am not worried – it will return once I’m on the road to recovery from my surgery, I have no doubt. It is something nice to look forward to. Yesterday I had a bit of a blitz in there and tidied up – it was beginning to look like a neglected dumping ground again. Surprising how quickly that can happen, isn’t it!

I have heard from the hospital that my surgery is definitely confirmed for Friday afternoon – 27th March. After two postponements, we can only hope that it goes ahead as planned this time, because too many more delays and the cancer is going to start to spread…

Both postponements turned out to be blessings in disguise, giving us the extra time we needed to climb down from all the Mum-induced stress, and to enable us to do some more things (mostly nice!) and have some treats. I have also been able to spend a lot of time on the ostomy forum, acquainting myself more fully with this weird and wonderful world I am about to enter, populated by people who cr*p out of the front instead of out of the back. Well, Shoshi’s never been one to be conventional, has she, you have to admit.

During this time, I have created a new blog (see the link at top right on this one) called The Gutless Bag Lady, which will chart my progress into my new life with an ileostomy. I am hoping it will help others on the same journey, and it will also serve to encourage me as I look back and mark the progress I’ve already made, as time goes on. I have started entering stuff on the tabbed pages but have not yet done any posts, but most of the page elements are now in place, so it’s ready to go, once I’m well enough to start. I am glad that I have done all this ground work in advance, because it would have been more difficult after my operation when I shall probably be a lot more foggy than usual, and it’s taken some time.

I am sure that as Friday approaches, the currently sleeping hoard of voracious and ravenous butterflies will awaken and start attacking my stomach lining again – after all this time, I wonder why we don’t just let them get on with it and do the surgeon’s job for him! Much more of that and I don’t think I’d have much left to worry about anyway.

I should be in for about 7-10 days, I think, depending on how well I do. To start with, I am spending 24, or possibly 48, hours in the High Dependency Unit so that they can monitor me a bit more closely, owing to my other medical problems. For the first few days I won’t be up to doing much, but hopefully fairly soon I shall be feeling well enough to get on the laptop, at which point my hubby will bring it in for me, and I hope to get online so that I can regain contact with everyone! In the meantime, my friend Lucy is co-authoring my blog and will post any bulletins she gets from my hubby about my progress. Knowing my hubby, these are likely to be pretty succinct, but I hope informative enough to let you know how I’m getting on! So please keep an eye on my blog. (Do visit Lucy’s blog too – she does amazing colouring with her copics, and I’m sure she’d appreciate a visit. You’ll find a link on my blog.)

I shall be posting up until Thursday night, and then I’ll pack up the laptop ready for my hubby to bring in when it’s required.

Happy WOYWW everyone, and thank you all so much for your messages of love and support, and above all, for your prayers. Hope to have some good news of my progress soon.

Drapes for Half Tester–A Mock-Up

I’ve decided to do a temporary mock-up of my bed drapes. I haven’t done any more embroidery for a while, but when the pieces are finished, they will go around the top.

This is what the frame of the half-tester looks like without the drapes:

You can see, from this photo which I took in the evening some time ago, that there is a light attached inside the frame – you can see the pull cord for it hanging down.

There are still 3 banana boxes remaining from when we moved house, which I still haven’t unpacked (!) and one of these is in the bedroom, and marked “Bed Drapes.” I opened it up today and got them out, and put up what I could onto the half-tester frame. It’s a mock-up and looks a bit messy but it gives me an idea of what needs to be done to make the drapes fit properly.

The curtains with the dark red patterned outsides and green linings were designed to go at the four corners of the four poster and are unfortunately too narrow to extend the full length of the half-tester, but I have put two curtains on each side. Eventually I shall probably sew them together to make one. Also, each curtain is made so that the lining is attached along the long sides, apart from a short distance at the top, to allow the curtain to go on the outside of the frame, and the lining on the inside, sandwiching the frame in between. Because of the diagonal struts supporting the top of the half-tester, I had to unpick the seam a bit further down the length of the curtain, to enable it to go past this piece of wood.

The red woven strip with the wool tassels on it (can’t remember where I got that – probably from some ethnic shop or other) was also in the box, and I’ve pressed that onto the single line of Velcro on the frame as a temporary top edge until I can complete the embroidered pieces – it sticks OK for now, because the fabric is fairly soft and fluffy. It is not long enough to extend the full length of the sides of the half-tester frame, so I have just pressed the ends down onto the Velcro that goes along the top edge of the frame for now. (That Velcro will eventually hold the top canopy.)

The dark blue piece hanging at the head of the bed is supposed to overlay another length of fabric, but I can’t use this until I’ve altered it. The soft Velcro is on the front, because originally it was stuck onto the outside of the four-poster frame, against the wall at the head of the bed, and the half-tester frame is up against the wall and I can’t get at the back of it. It used to hang flat (ungathered) but it is too wide now, so I may cut off the excess, or I might put it up gathered – I haven’t decided about that yet. The dark blue piece is also too wide, and is gathered at the edges at the moment, so that it fits the half-tester frame, but it’s a bit wrinkled and doesn’t hang quite right. This piece was originally going to be covered with shi-sha embroidery but I never got round to it! Probably a good thing, if the piece doesn’t fit properly! I’ve got more of that material and I may cut another piece to fit, but I’ll live with it as it is for a while and see how I feel about it.

Because the half-tester is screwed to the wall, the knobs on top at the head end are very close to the wall, and I cannot hang the big tassels over them because their cords are too thick. I’ve just laid them on top of the frame and stuffed the excess down behind, and it seems to work! The tassels at the foot end aren’t a problem, of course, as I can just hang them on the knobs as I did with the four-poster. These tassels are actually curtain tie-backs that I bought to hang over the knobs of the four-poster, as they looked so rich, and co-ordinated so well with the drapes.

Also in the box of bed drapes I found the two long pelmet pieces I made for the bedroom in our old house. They have rufflette tape on them, and I pulled all the gathers out when I washed them, and folded them away in the box. There were two windows in that room, and I think the pelmet piece from the smaller window may be just enough to go round the inside of the half-tester frame, to cover up the wood and provide a backdrop for the front pieces once I’ve made them – I might not be able to gather it very much. The green bobble trim on the pelmet pieces matches that on the bed curtains. The longer pelmet piece I may use as a pelmet to go over the window which at present doesn’t have a pelmet at all – a wooden one would have to be made, or perhaps a purchased pelmet rail? Not sure about that yet. Anyway, if I do it, it will all co-ordinate.

I need to attach more Velcro onto the frame, so that the top pieces as well as the curtains can be attached. I have been using the self-adhesive hooks and the sew-on loops, but after a while the glue on the self-adhesive hooks tends to fail, so when I redid the first lot of Velcro, I stuck it on with extra-sticky double sided tape as well, just to make sure. I’ve also got to adapt the pleated canopy I made for the four-poster as it is much too large at present.

I think my temporary mock-up looks quite cool, but it’s going to be soooo much better when it’s all done properly! I’m not going to be able to do anything more about this until I am well and truly over my operation, but I wanted to get something up over the bed as I was getting a bit fed up with looking at the bare wooden frame! The mock-up will do for a while, and may give me the impetus I need to get the job finished eventually.