Ug's away

waiting for surgery

2007-06-21T12:25:00.000-07:00

I have been to see my surgeon at the Brompton Hospital, Amy came with me and Kevin very kindly took us and collected us in the car which was lovely. Mr Ladas was very nice and we saw the evil twins on the scan which was a bit scary, one is sort of hanging on the edge of the lung and the other one is quite near a largish blood vessel. He hopes he can just (just!) cut them out but it might mean that I lose one of the 3 lobes my lung has - no problem as the other 2 lobes eventually expand the fill the space up - clever isn't it this body stuff? He explained that I would hopefully have a more rapid recovery if I didn't have the drain in my pelvis so we have agreed to have the surgery at the end of July when he returns from his holiday.

The good news is that I am told the drain can finally come out after 10 weeks which will leave me a lot more comfortable in the lower regions! I have to arrange that with St. Hell's which as you can imagine is not going smoothly, still, if I haven't heard from them by Monday I will get my GP on the case - I'd like to enjoy some time without the drain in before I have the further 2 inserted after the operation.

So, that's where I am at the moment - on the way but with no actual dates for anything yet.

I have been going through a very depressing few days lately, but am entitled to have days like that, I can't be a happy bunny all the time. My mood was so much lifted by 2 cards that one of the sunday school groups had made me and then sent through the post and also by a beaufiful earrings and necklace set that the church choir bought me. It totally overwhelmed me and I spent a long time crying, but that got a lot out of my system as well so that was good.

love to everyone xxx

lots to tel!

2007-06-06T08:26:00.000-07:00

Since I last posted, I have been a resident at the Marsden for 6 days having IV anti-biotics. The treatment itself was very short just 3 times a day but the rest was good and with my new portable DVD player I watched loads of films which was lovely. The aim was to try to clear this wretched abscess up so that further treatment can proceed.

It seems at last to be working and the amount draining is now very small indeed.

I had an appt yesterday with Mr Bett at St Helier and was very focused and clear about what I wanted as well obviously as what was being suggested. The good news is that surgery for the evil twins can go ahead despite the fact that I still have the drain in place, although I guess this has to be confirmed by my surgeon at the Brompton who I am seeing next week, and this surgery is top priority. I never thought I would say it but I am so looking forward to major surgery!!! I'm not sure what the follow up treatment will be but I just hope that Mr Ladas gets rid of the evil twins and doesn't leave any of their offspring behind. I had a feeling that Mr Bett would say....lets wait and see blah-de-blah.... and I wasn't going to accept that but the consultation went well and I was satisfied with all the answers to the pre-prepared questions I had taken with me (how organised am I?!).

I went to church on Sunday for the first time in ages and it was so lovely to see everyone and to get such a warm welcome; a time of prayer has renewed my spirit and determination to get on with life so when I went into work this week I have got so much done and solved quite a few problems that nobody else appeared to know the answers to. I got a lovely email from a colleague who told me to get the hospital to sort me out quick as they need me back full time.

Not much other news..... we now have a new kitten called Janet who actually belongs to Amy & Kevin. She is very cute but plagues poor Fudge who eventually gives her a big 'wop' with his paw, she goes flying but then bounces back (as if on springs) for more. As he is 11 years old it's a bit like putting a toddler in an old peoples home and he's not impressed!

Mummy is really poorly at the moment and eventually gave in today and I took her the doctors this morning. She got her first ever course of anti-biotics which is not bad when you are over 80 - the doctor wanted to know what her secret was, I commented that she obviously hasn't passed the secret onto me as I almost rattle with the amount of tablets I take per day.

Will post again next week after I have been to the Brompton Hospital. xxxxxx

Still no sign of any chemo

2007-05-22T05:48:00.000-07:00

Went to the Marsden yesterday, it was quite depressing really. The collection of fluid in my pelvis has still not dried up and stopped draining so the drain stays in for a while longer. This not good news as it's beginning to be quite sore and sitting on pipes and plastic connections of pipes is not comfy! I actually met Prof. Cunningham himself yesterday ( I hope that was not an indication of gravity of the situation), he was so nice but basically everything is on hold until this problem is sorted. I now have to see my surgeon Mr Bett to get his view on a way forward (which will not be at St Helier!) but he cannot see me today at his clinic and is away next week, so the thought is that I maybe go to Fulham Marsden to see a surgeon up there. All this is driving me crazy as I can have no chemo to zap the evil twins and I know that the smaller one of the two has already grown. It's all very frightening and whilst I may put on a brave face I can promise you it's an illusion - a bit like the swan that looks so graceful above water abut is paddling like the clappers underneath!!

I feel totally helpless and frustrated that I am going nowhere at the moment - lets hope for some more positive news soon. xx

Finally home

2007-05-05T15:02:00.000-07:00

I can hardly believe that a month has gone by since the last post on my blog, and what a month it has been - I will try to condense it but I am known to waffle!!!

After the drain had been put in at St Helier (Hell-ier more like!) it got progressively more painful and I ended up in St Hell's A&E where believe it or not they just sent me home with liquid morphine for the pain. It sounds silly but it wasn't until we got home that we realised that no-one had actually examined me - not looked at the drain site nor what was discharging into the bag.......unbelievable I hear you say! The upshot of that was that 2 days later I actually couldn't move and we had to call 999 for help. It was a nightmare and it was only with extra morphine that I was able to get downstairs and into the ambulance and guess where to ... St Hell's again, this was because this was where the drain was put in. Moving along a few days...... the drain fell out when the nurse was changing the dressing so guess what - more morphine, this time on a pump which eventually came home with me after 2 weeks. It was awful, I was in over Easter, I had scary Mary opposite me who hadn't a clue where she was and thought the hospital gown was a new lemon dress, Audrey who continually wanted to be taken to the toilet despite having a catheter in , the chineese lady (see previous blog!), a lady who thought she had been stolen from the bathroom and a man who thought he was Jesus (trust me, he wasn't). It was possibly the worst 2 weeks I have ever had, add all this with a row with a consulant and only sandwiches for supper with soup that the person serving it said he " thought it could be asparagus" it made for a pretty miserable time softened only by all my visitors.

Home at last but not feeling great so guess what - 4 days later I'm back in hospital, this time the Marsden; different kettle of fish altogether, but still hospital and away from home. A second drain was inserted and trust me this was even more painful that the last one, this one was done at the Chelsea & Westminster Hosp and I was taken by hosp transport. This was fine going there but after the procedure, and feeling very sore I had to wait nearly 3 hours for an ambulance to take me back to the Marsden; the journey back was in the rush hour so you can imagine, it took ages. By the time we got back it was nearly 8pm and I had missed lunch and supper, I actually think I slept most of the following day. Having had such 'colourful' bed mates in St Hell's I was not to be disappointed at the Marsden - Lynn who was convinced there was an old hag in the doorway each night and who insisted on calling me Belinda, and Joan who was certainly a sandwich short of a picnic and thought the phsychiatrist was round the bend........HELP!!!!!!!!!

I finally came home last Tuesday, the drain is still in and I have a nurse in each day to monitor it. I have a clinic appoitment at the Marsden next Tuesday when they will decide if the drain can come out and the I can finally get going on the chemotherapy. It really has been a very tough time emotionally as well as physically for me and of course for friends and family (especially Amy) who have taken the brunt of my moaning and crying, but enough..... all that is now behind me and I am getting ready for the next chapter. It's lovely to be home and although I don't have much strength back yet, simple things like hanging out the washing give me great pleasure (sad but true!).

I am again very touched by all the emails and cards I have had, my blog seems to be the success I had hoped and saves me repeating things over and over; there is a link to it on our church website which is great as I find going to church a bit too emotional so I know everyone is fairly up to date with what's going on. I actually went into work on Friday and have arranged that I can do certain bits from home and they are giving me a laptop which will enable me to use all the files stored on my work computer - all too technical for me but that will be super as my work is such an integral part of me.

Well, sorry this was such a long posting but I think all is up to date now - Tricia, I'm so sorry I missed you on the 21st; Liz, thank you for keeping everyone at church informed; Janet, glad the move went ok; Carol & Dave, thank you for the flowers. Hope no-one else is offended if I've not named them but just thank you to everyone, lets all think positive so that I can get going with the wretched chemo and get this whole ordeal over with xxxxxxxxxxx

The Chinese lady

2007-03-29T07:35:00.000-07:00

Went into St Helier on Monday where they inserted a drain into my buttock to get to the abscess/pocket of fluid. It was done under a CT scan and was very painful ~ I've really had enough of people looking at my bottom! They have had to leave the drain in so I now have a pipe which is attached to a drainage bag which is strapped to my thigh so it can drain all the fluid away - very attractive!- and I am finding it hard to sit or lie down so am feeling very sorry for myself at the moment. My chemo has again been postponed until 18th April to allow this latest thing to heal, I expect it will stay in for about 10 days to 2 weeks.

There's always a funny and this is a good one....... after I had had the procedure 3 doctors came to check I was ok to be discharged, one of them came back and asked if he could ask me some questions about the procedure, which was fine. Prior to that, a Chinese lady had been admitted and was in the next bed to me, she was a sandwich short of a picnic and was very strange. Anyway, whilst this doctor was having a look at my bum she lifts up the curtain, carefully drawn between her and me and says (you have to imagine the Chinese accent!) "young doctor, when you finished I need word with you" She gets a birds eye view up my bottom and is asked to let go of the curtain; the doctor says "actually I am not a doctor" (he lied!) and told her to let go of the curtain again; she replies " oh, you no doctor? but you velly lovely can I see you anyway!). By this time he and I are almost helpless, but she did let go of the curtain and normality was resumed!!!! I thought you'd like that one.

Poor Amy is off work with bronchitis so we make a poorly pair at the moment, but it's nice for me to have some company other than the cat during the day.

Am going to try to have a lie down and get some zzz's, they seem to have escaped me last night, so bye for now xxx

Oh deary me!

2007-03-22T01:46:00.000-07:00

You remember my last blog mentioned about draining the abccess well.................. I got a phone call at work last Monday at about 10.30am from the Marsden asking if I could make my way to St Helier as they could do the drainage procedure today. It's apparently going to be done under local anaesthetic and takes about ½ hour; so I duely arrived and reported to casualty as instructed. After 1½ hours waiting, I was then called in to see the triage nurse to whom I explained againthat I had a bed waiting for me etc etc. They called up to the day unit who said that was fine so up I went to the 3rd floor. When I got there the sister said she was sorry but they hadn't actually got a bed for me so would I mind waiting in the day room. Whilst inthere they took my bloods and then a 3rd year doctor came and asked me so many questions almost down to how many veruccas I had had as a child! Eventually they found me a bed and I got into the top fashion gown that hospitals provide and sat and waited. (You may see a pattern of waiting emerging here) To cut a long story of waiting short, they told me at about 3.45 that the doctor who would be doing the procedure didn't know I was coming and had no space to see me until Monday of next week!!!!!!!!!!!!!!!!!!!

To say I was a bit disgruntled would be putting it mildly, but at the end of the day, if they couldn't do it, there was nothing I could do about it, so I came home. The Marsden were spitting feathers when I told them and I seemed to be piggy in the middle. I think the worst bit was when I told the registrar that it meant putting my chem back again, she said the 'in the great scheme of things a delay in chemo wouldn't really matter' I pointed out that it wasn't her that had cancer and a delay meant a great deal to me ( the evil twins {my tumours} have to die!). Anyway, the upshot of all of this is that I am booked in to go back to St Helier on Monday to have the drainage done but this time I have to go at 8.30am and have to have nil by mouth since midnight and I will be in overnight! I really wonder if they know what they are doing, I cetainly had not expected to be kept in overnight but knowing St Helier, I'll probably be home tby lunchtime!

My chemo has now be changed to next Wednesday so hopefully things will then be back on track ~ it's all been quite unsettling and I really don't need the stress of it all.

I collected my wig yesterday and took it to my hairdresser who thought it was fab and will cut it to suit me slightly better. The back is fine but it's a bit puffy on top for my liking, but Robert said it will be no problem to chip chop it so I feel a bit better about it now. He cut my hair and made it look so good yesterday even if I don't have it for maybe much longer, I still need it to look nice and I think he did the best cut ever. I felt so good I had to go and do some retail therapy in M&S in their sale!

Am now just off to work so will post again next week sometime. xxxxx

Another set back

2007-03-14T09:10:00.000-07:00

Well, I wondered how long it would be before I developed another infection and hey presto it was last week! I ended up in the Marsden on Friday with a temp of 104 and finally came out yesterday evening. I am now feeling fine thank goodness. They have finally decided that the infection is caused by a pocket of fluid, like an abcess, which never drains completely and therefore keeps building up and making me feel so poorly - I have to say that is what I have been telling them each time, so it was quite nice to hear the doctor actually voicing my thoughts entirely. The plan now is to drain the abcess surgically which hopefully will then dry up completely and will also have the effect of not leaking through the bowel wall where it hasn't healed together and the end result is that the bowel should then heal itself!......... we shall see. I am unable to resume my chemotherapy until this is done so am expecting to have the procedure at the beginning of next week so that I can have my chemo on Friday of next week. So everything is a bit up in the air at the moment but I am enjoying feeling well, especially with the weather being so nice at present.

Along with everything else, I had an ingrowing toenail removed this afternoon - the local anaesthetic is still working so no pain yet but I am prepared for it this evening. I was a bit surprised as I thought the doctor was just going to look at it but instead he did what was necessary (I didn't look!) and now I have a very attractive white 'dolly' on my big toe, so no chance of getting any shoes on yet, just as well the weather is good.

Spent a lovely morning chatting to my friend Liz and catching up on the news from the church birthday weekend which of course I missed having been in hospital. The services on Sunday appear to have been fantastic with some real 'tingly' hymns, I so wish I could have been part of it all.

Claire came with me last week to chose my wig, which we did; having said that, I was feeling so ill I think she could have put an Alice band with piggy ears on me and I'd have said it looked good! Liz has offered me her daughter's Mickey Mouse ears from Disney if I feel like a laugh - I might even take her up on that offer - bald head with big black mouse ears, what do you think?! Calire assured me the wig looked fine and I know she wouldn't let me get anything that didn't look ok. The lady who fitted me was not the most sympathetic at the Marsden and kept telling what I couldn't do with it like move the parting over and I couldn't cut it - I thought, well it's my wig, bought and paid for I shall do what I want! I shall take it my hairdresser Robert, who has promised to style it etc for me so 'yarboo sucks' to her!!!!! It did feel very funny on, a bit like a swimming hat, so I have a feeling I shall not be wearing it much and I haven't lost any hair yet anyway so it's not an issue but I am living up to my Queens Guide motto - Be Prepared.

Thank you again for all the thoughts, prayers and cards etc. Will write again soon. xxxxx

treatment has started

2007-03-07T06:34:00.000-08:00

Well, this new regime of treatment has started and got off to a flying start - felt fine etc but oh boy has it kicked in now! I feel so fatigued and have a blinding headache all the time and have hardly been able to get out of bed the last 2 days. I get so frustrated as I just want to have my chemo and then be well in between but I know that's not going to happen. Tomorrow I have an appointment with the wig man at the Marsden to choose something, not that I have lost my hair yet but I guess it's only a matter of time - I hope that they have something decent. I know they like to see you with hair first to get something that matches as far as possible but I wish I could take Amy with me to help but she's at work, never mind. Have decided to stick to something more or less as my own hair ~don't think I'm quite ready to be a blonde bombshell just yet!

Have not been able to go to work this week which is getting me down, it's unfortunate that whereas last year I had 3 weeks between chemo's, this year I only have 2 so there's not much time to recover in between. Listen to me - what a misery I sound, still I'm allowed, sorry guys, it's just not been such a godd week this week.

Will write again when I fell a bit better, xxxxx

good new and bad news

2007-02-25T10:24:00.000-08:00

I expect most of you will already know this, but for those who don't...... my last visit to the Marsden showed that the cancer has gone from the bowel which was good news but unfortunately some cells have decided to take up residence in my right lung - what a bummer! Although it's in my lung, it is still bowel cancer which is quite bizarre, and the 2 nodes are very small - 12 and 9 millimetres. The bottom line is ( pardon the pun) that I start chemo therapy again this coming Tuesday every other week for 3 months, then I have surgery at the Brompton hospital in London followed by a further 3 months of chemo as before. So no holiday in the sun again for me this year which I was so looking forward to, never mind, more time for me to save up for that cruise I fancy.

Amongst all the negatives, like losing my hair, tiredness, diarrhoea and vomiting, there are lots of positives - it's curable, the summer's coming so sun hats will be in, if I don't want to wear a hat sun cream is now made is ridiculously high factors so my head will be protected and I already know the staff on the day unit and am familiar with the surroundings at the Marsden. I have yet to decide whether it's a good thing or not that I am aware of the possible side effects, I'll have to revisit that thought ata later date.

One real negative for me is that they cannot reverse Fred & Hazel until all the treatment is finished, so I am stuck with them for a good few months yet with that surgery still to face at the end of it all. I think I may be mentally able to cope a bit better if that had been sorted, but this is not the case so I'll have to get on with it.

Amy and Kevin have been wonderful - full of positive resolve although poor Amy gets the brunt of my frustrations and tears, but then says she gets her strength from me so we both end up crying - what are we like!!

Will publish a post again later - all prayers welcome and thank you for the various suggestions I've already had re what to wear on my head (http://www.mulletwigs.net/acatalog/index.html is definately worth checking out for a laugh!!!!). love to anyone reading this x x x x x

If you want to know about the firemen..read on!

2007-02-06T23:07:00.000-08:00

I went to see my surgeon yesterday to hopefully talk about getting Freddy reversed. Unfortunately this was not even an issue for him since an x-ray had shown that in fact where he had joined the bowel together in August has not completely healed. This means a 6 week wait to repeat the x-ray and then it will be reveiwed. This was so what I was not expecting to hear that I burst into tears and I'm not sure I actually heard the rest of what he said!

I did have a meeting with the stoma nurse afterwards who warned me that I won't even go on the waiting list for the reversal until my surgeon is happy with the healing process and then it could be another 3-4 months ........NO!!!!!!!! This will bring me up to about August and means I will have had Freddy for 12 months instead of 6, what a bummer ( if you'll pardon the expression). Because of the Hernia (Hazel as I have called it) they have organised some firm elastic knickers that have a high waist and therefore come up almost to my boobs; very unattractive but do the job of holding Fred and Hazel in and so phsychologically will be good. I tell you, Bridget Jones would kill for these pants and they are so not going on the washing line to dry!!!!!!!

Next week I have my scan and will get the results the week after so I hope that that brings slightly better news than yesterday.

One last thing that brought some brightness......I got stuck in the lift at work last week and had to call the fire brigade to let me out. There was never a morde welcome sight that the lift doors opening and seeing 4 firemen in full uniform waiting for me and before you ask, no, they did not have to give me a firemans lift!!

love to everyone who's reading this xxxx

12 months on......

2007-01-28T02:40:00.000-08:00

Can hardly believe that it is now 12 months since I was first diagnosed, in many ways it has flown by and in other ways it seems to have been a lifetime!

Christmas was good and as I had my sense of taste, dinner was especially nice. Kevin's parents and his sister joined us which was lovely and although I did the dinner everyone else cleared away and washed up the things we couldn't fit in the already bulging dishwasher!

I went into hospital on the Thursday after Christmas to have my last chemo and again had an adverse reaction which was not good but as before they did eventually manage to administer it and I finally came home on New Years Eve.

2007 started quite well until I had another very high temp whch necessitated me being admitted once again to the Marsden for a week, the infection finally subsided and the temperature went back to normal. It seems that I maybe have a pocket somewhere in the bowel area that doesn't drain and therefore keeps flaring up - I have now had a x ray with some sort of dye to try to establish where this pocket might be, although quite what they will do I have no idea.

I have also had an MRI scan now that my schedule of treatment is finished, and unfortunately they have found a 'questionable node' which they are not 100% happy about and so I am having a more in depth scan on the 12th Feb to establish whether this node is a pesky bit of cancer that thought it might be nice to stay, or nothing. This has obviously been quite depressing news to digest as I was hoping for a clear scan but now the waiting continues and it means that the reversal of the colostomy is also on hold at present. As well as everything else the stoma (Freddy as it is affectionately called) not only has prolasped but has now developed a hernia underneath it so it looks as though I have a small rugby ball on my side - I make light of it but it is gross and everything I wear, even the patterend tops that used to distract from Freddy, are now unable to hide this nasty lump which from the right side looks as though I am about 8 months pregnant!

So, the waiting continues, until I know the results of the scan I do not have a timescale for the other surgeries. Apparently my surgeon will not do the reversal and the hernia at the same time, so that will mean another stay in hospital. It does seem that my return to anything like 'normal' seems a while away yet; this bloody cancer seems to be moving the goal posts all the time!!!

I have, however, returned to work on a part time basis, I am still too tired to do a full day so I come home mid-afternoon and have a sleep which is lovely and I am being very good and not fitting in shopping, cleaning etc in those hours and waiting until Amy comes home before tackling those sort of jobs together.

will post another blogspot after I've had the scan and hopefully will have some good news to tell everyone. xxxxxxxxx

What a difference a couple of days make!

2006-12-11T04:03:00.000-08:00

Having posted that they send me home from hospitail with anti biotics - I was re-admitted at 1am Monday morning with an even higher temperature that on Friday. What I expected was that would keep me in a couple of days and then send me home again, but that was not to be and I ended up spending 2 whole weeks in the Marsden. I seemed to have developed an abcsess which was the cause of the tempreature and then it was time for me to have my normal chemotherapy but unfortunately that didn't go accoring to plan either. I had the most awful reaction to the drug which I couldn't understand since this was number 7 and I had suffered no reaction to any of the other times and this dose was no different in strangth etc so it was a bit of a mistery. The reaction was so severe that I ended upon oxyegen and with a visit from someone from 'critical care' to see me, but eventualy it passed and by the following morning I was fine. What they then decided to do was to try again but infuse it really slowly so instaed of having it over 2 hours they dripped it in over nearly 7½ hours - this worked fine apart from the movement constratints and I was finally allowed home on Saturday morning. What a marathon it turned out to be. It also means that my last chemo session on the 27th December will be done as an in-patient so that precautions are at the ready if I react again so I have another couple of days in the Marsden before the year is out.

Fortunately all my Christmas shopping was done and cards written so I didn't have all that extra worry whilst I was laid up in hopsital. THe cards are now also posted so I just have the presents to wrap up but as I am not a t work, that should not be too much hassle.

When I got home from hospital Amy and Kevin had put up the tree and all the decorations so the house looked lovely and very Christmassy and looks so cosy and nice when the tree lights go on in the afternoon. Kevin has put them on a timer so I don't have to scrabble around on the floor to turn them on which is great but I don't know how to override the timer so I have to wait until 3.45 before they go on!

Hopefully there will be no further dramas before Christmas and I can relax and enjoy the festive season. We have the carols by candlelight this coming weekend, it will be very strange for me not to be part of the choir but I shall be joining then to sing 2 of the descants which I do each year so that will make me feel part of the service so I am really looking forward to that - I hope I have enough voice left in me by the end of the service to do justice to 'Hark the Hearald Angel Sing' as it is my very favourite descant.

I may post again before CHristmas but if not I hope you all have a very peaceful time and enjoy a healthy 2007. xxxxx

another month gone by

2006-11-25T10:01:00.000-08:00

Since I posted the last blog not too much has happened except I have felt really rough; the chemo seems to have affected me differently this time and the not so good effects have lasted longer. I spent yesterday in hospital with a high temperature but was much releived when they told me I didn't have to stay in and could come home with anti-biotics - I think this brings my daily tablet take to about 25 but I am very organised and have a box with 4 compartments which I fill each morning so that there is no mistake about what I take and when I take it. I am finally having to accept that I can't just have the treatment and carry on as normal because that just so doesn't happen!

Amy and Kevin have been so good - there can't be many young men who would get up early on their day off as Kevin does each Wednesday, to take me to the Marsden. Some weeks I could take myself but the cost of the parking is appalling - with it costing me a minimum of £6 on a 'short treatment' day; for some reason they only have 3 free disabled bays that I can use with my blue badge and it's very rare that I am able to get into one but enough............. the parking issue is for another soapbox time!

Having had 2 chemo sessions and picked up 2 infections, work seems a thing I did a long while ago! I have only managed to go in for a few hours but the hospital have told me to stay in the warm as my imune system is very low - oh well, if I have to!
Fortunately work have not caused a problem for me although I think that the recording system (or lack of it) may have a lot to do with it, but that's not my problem, my timesheet is up to date and accurate so I can fight my corner if need be.

There is one good thing to come out of this ..... only having a short window when I feel able to go out and shop, with Amy's help I have done all my Christmas shopping (not wrapped yet) and the cards are all written and I can tell you it's a very nice feeling.

In order to keep myself busy I have started knitting again and have so far done about 8 scarves with further requests coming in all the time, it's very theraputic and as it's just plain knitting I can do it whilst I am watching TV. I also have a couple of baby cardigans I am going to knit for someone at work but will have to actually follow a pattern for that so will have to concentrate, think I will have to leave that until I do not have chemo-brain!

Eloise has been chosen to play Mary in the school's nativity play so I am also making her outfit, Rebecca is a polar bear (I'm thinking cream tights and jumper?) and Libby is a toy(!)so all in all I am trying very hard to keep relatively busy without wearing myself out as I know I also have to rest - it would appear that I really don't have time to go to work though!!!

The last stretch has begun!

2006-10-24T15:00:00.000-07:00

Yesterday I went into the Marsden to have a portacath device implanted in my chest which carries a tube which is inserted into a central line in my neck, sounds horrific but it will be what they will use each week to take blood out and put the drugs in. I was only in for th eday and have various dressings on it at the moment so am not sure what will be visable once it has all healed. It is quite sore at the moment and I am not looking forward to the dressings being changed tomorrow when I finally start my last 12 weeks of chemotherapy; still after what I've been through with the main surgery, this is nothing really.

Amy and Kevin flew off to Spain last Saturday for a well deserved rest. Despite having the school holidays, Amy worked most of it at her old nursery and then with Kevin's mum at a school holiday scheme, Kevin also has not had a week off so they were both so looking forward to going away especially as it was just the two of them. The house has seemed quiet without them, no doubt it will be back to normal when they are home this Saturday.

Tomorrow sees me back at the Marsden to start this last 12 weeks of chemo, can't believe that I've done almost 9 months already and this is the final bit woo hoo!

Will write something next week when I'm over the initial side effects of my meeting with Mr Chemo!

Scan results

2006-10-10T03:14:00.000-07:00

The scan showed, as expected, that there is NO tumour which was obviously great news. THe next bout of chemo will be to zap any cancer cells left that might be thinking of doing anything but they are too tiny to even show on the MRI so I'm thinking that the chemo will have no problem in eating them! Apparently the tumour was attached to a blood vessel so they need to make sure that they get every last cell regardless of where it may be in my body - clever stuff huh?

Am planning to go back to work next week, just ½ time and that of course will be interupted many times for the treatment but I managed it well at the beginning of the year so I'm sure it will be fine this time around.

xxxxxxx

2006-10-08T13:39:00.000-07:00

Cannot believe it's the 8th of October already, I am making really good progress which seems to have been acknowledged by everyone. It seems amazing that when I came home from hospital I could hardly manage ½hour out of bed and now I am preparing to go back to work - albeit only halftime.

I had an MRI scan last week and get the results from that tomorrow afternoon at the Marsden. The hope is that it will show nothing at all as the sugeon said he removed all of UG, I hope that it the case. The schedule after that is that I go into the Marsden (possibly overnight) on 23rd October to have a portacath fitted which is a small implant that goes under the skin in my chest and tunnels under the skin up to a central vein in my neck and this is what they will use to take blood out and put the chemo and antibodies in because, as a doctor said last week 'I have crap veins'. It has to be done under general but should only take about 45 mins so it's small fry in comparison to the 5 hours of the last operation! I have seen and spoken to someone who has one and it is barely noticable under the skin, but even if it is, it's not for long - the next, no LAST, chemo treatment is another 12 weeks which means that I will take my last tablet on January 10th - woo hoo!!!

When that is finished, I have the portacath removed and then it's back to St Helier to have the colostomy reversed. Providing all goes smoothly I should be feeling ok over Christmas; have my last big chemo on 27th Dec (which means it's this year not next year - a big psychological thing for me) and clear of everything and back to something resembling normality by Easter. After that it will be some big fat holiday!

Will try to do another posting tomorrow after the scan results. xx

Goodbye UG!

2006-09-11T05:53:00.000-07:00

Well I am home at last having spent 17 nights in hospital and the great news is that my surgeon tells me he got all of UG out. I still am finding it a bit hard to take it in, especially as I know I have 12 more weeks of chemo to endure a bit later on. The operation was way bigger than I had ever imagined and I was not allowed to eat anything for 8 days afterwards - starting off with a suck on a sponge lolly I then progressed to being allowed 30ml (about 1 tablespoon)of water per hour! Gradually though that increased and then I was actually allowed some food and let me tell you that hospital food never tasted so good!

There was such a lot to cope with at first, not only did I have tubes and pipes out of almost everywhere possible I was also on oxygen which meant that which ever way I turned in bed I seemed to get tangled up with something; having said that there was not too much moving around as I was quite sore - picture the scene...... you're lying in bed and want to shift up a bit, you muster every bit of energy that you can and heave yourself up towards the pillow only to find that no you haven't run a marathon, although it feels like it, but you have moved about 1 inch up the bed only to find when you relax that you are exactly back where you started!!!!!!!!!!!!! I am glad to say that is no longer the case.

I had so many vistors and cards whilst in hospital it was quite overwhelming, never before have I greeted so many people wearing so few clothes! The cards and gifts all came home and are now all up in the living room for me to read properly and enjoy.

So, I am now at home recovering and watching far too much television but do not yet have the concentration for a book. I am currently signed off work until mid October it's nice that the weather is good rather than raining as this also helps the healing process and makes you feel better and not so gloomy.

Thank you everyone for all your good wishes and prayers, believe you me, they have certainly kept me going these last few weeks. xxx

PS I am not suggesting this as a diet, but I have lost 10 kilos since I entered hospital ( the trick will be to keep it off now!)

Nearly Ugless

2006-08-12T12:22:00.000-07:00

This last week has not been so good in so much as my computer decided to crash on Tuesday and the engineer couldn't come out until Friday, I felt totally at a loss as I use my computer every day. Anyway, as you can see, it's back and working fine - phew!

I also managed to pick up an infection which knocked me for six this week and resulted in the glands in the back of my neck and head swelling so that they were like enormous gobstoppers. They were very sore and I couldn't rest my head flat back on a pillow so sleeping and resting was difficult, however, that has also now subsided thanks to antibiotics which were very large and bright orange - I had to read to instructions twice but yes, I did swallow them!

On Monday I saw my radiotherapy consultant who had the results of my CT and MRI scans done the previous Thursday. They were extremely pleased and UG seems to have responded well to the treatment, having shrunk by 30% which was great news. They were also delighted in that it seems to have pulled away from where it was embedded which makes the surgery less invasive, so good news all round and made me forget the lumps in my head for a little while.

Tuesday I saw my surgeon who was also delighted with the scan results and is convinced he can get UG out 'in one' and since I don't have any secondary tumours, it looks as though once UGless, that will be it. Thank the Lord for that.

The rest of the week was spent resting and trying to get on top of the infection so that I would feel better when I go into hospital on Monday morning. I will spend most of Monday having various blood tests etc and am then first on the list for Tuesday morning which means I will be going down at about 8.30am. The operation is scheduled to last about 5 hours which is very scary and I then have to go to the high dependency unit for at least 24 hours, after that it is back on the ward. They think I will be in about 2 weeks so I hope to be home in time for the Bank Holiday (and also Amy's birthday).

I really need to thank everyone for their good wishes and words of encouragement, I have to say I am very nervous about the operation but more so about the days following it even though I shall be on self administered morphine so will probably be out of it but it is still worrying me big time. I think it's because I've never had such major surgery before but this time next week it will be over and hopefully most of the drips and drains will be out. As Monday draws ever closer it's a big reallity check!

I don't think I've anything else to add and tomorrow will be spent packing and making sure that everything is ship shape as well as putting some new tunes onto my iPod - I need to be singing along to Billy Joel and the soundtrack from Grease! Next time I shall be able to post news will be when I am home, so it's over and out from me and UG, with the next news coming just from me xxxxxxxxxxxx love you all

reality check part 3

2006-08-04T10:00:00.000-07:00

Went to see the stoma-care nurse today who was lovely and has partially restored my faith in St Helier!

She explained all the in's and outs(sorry about that expression) and it appears that my surgeon likes to err on the side of caution and fit a stoma rather than risk infection which can be quite nasty. So I am preparing myself for that. What I hadn't realised is that they are unable to do the reversal until I have finished my chemotherapy which means I could have it for 6 months which was way longer that I had ever thought. There are, of course, some funnier sides to it, one of which is that it has a 'wind filter'which deodorises as it releases.........I'm wondering if I could rig up my iPod to be run by my own wind power thus saving on batteries!!!

So, with one week to go to 'bye bye UG day' I must get myself into gear to pace myself and get all the necessary bits done, rather than leave it to the last minute which is what I normally do. I have the last three hospital appts next week including the important one with my surgeon on Tuesday after which I shall definately be in a go situation.

I am so looking forward to Emma's wedding tomorrow and expect it will take all of Sunday to get over that so the time is certainly whizzing by. Keep the comments coming, it's nice for me to know that you are reading and enjoying this.

reality check part 2

2006-08-03T13:14:00.000-07:00

Was at the Marsden today for CT and MRI scans which went well despite the fact that they were running over an hour behind for the MRI scan which meant a very long wait, but it doesn't happen very often there so it really was no problem.

I had a long chat with my asigned specialist nurse, Jan, about what had gone on and been said at St Helier yesterday and felt so much better afterwards. She agreed that it seemed that they hadn't fully read my notes which might have meant for a few less of the silly comments they came out with..but enough....I feel slightly less troubled by it all today. It's not as though I can just opt out of playing the game now, can I?!

Tomorrow I see the stoma-care nurse who will talk me through what happens if I need a bag after the operation; if it's needed, this will only be temporary but is still freaking me out a bit...it's just not natural is it? Again this is at St Helier and I will need to muster up all my reserves to listen and perhaps to be polite, not having very much faith in them at present.

Thank you for all the comments, it seems that it's a good way of communicating and I love reading the comments I hope as much as you all enjoy the postings. Perhaps if I can get a laptop whilst in hospital you could have the news at 10 ...this is Radioactive Ro for news at 10, live from St Helier Hospital!.... what a giggle that would be. love you all xxxx

Reality check

2006-08-03T00:40:00.000-07:00

Yesterday I went to St Helier for my pre-op assessment, Amy came with me which I was so grateful for as the whole experience was a big reality check. I think all along I had just been treating the surgery as just another step in my treatment schedule but boy oh boy it is the biggy!

They explained everything to me , how the operation could be about 4-5 hours long and then I have to go to the high depenency unit; explaining to Amy not to be distressed at the sight of me with tubes, pipes and drains out of almost every orifice plus an oxygen mask - it's obviously not scheduled to be one of most glamerous days and you just know I'm going to have 'bed hair'!! It appears I will be like that for about 4-5 days before they start taking everything out and I will feel something resembling 'normal' again. I will not be allowed anything to eat so will have fluids via a drip and the occassional 15ml of water to 'wet my mouth', this is a far cry from the 2-3 litres that I drink each day at the moment. I apparently should get lose about a stone whilst I'm in there (what is it they say about always being a silver lining!).

The other thing which I hadn't even realised, was that I am not allowed to lift anything for about 6 weeks afterwards or do the housework (there's that silver lining again!)but also no driving for possibly 4 weeks. Don't get me wrong, I knew it was major surgery but not this big - maybe I was just in denial, but I must say I am dreading it now and it seems to be coming up so fast.

Today I am at the Marsden for CT and MRI scans. It is such a shame that they cannot do the surgery there, their whole attitude is so different and since the whole hospital is for treating cancer they seem to have such compassion with your situation depite the fact that they have seen and heard it all before. It was a bit of a worry when the nurse doing my assessment said that if they find a problem with the lymph nodes it would just mean 6 months of chemotherapy after the operation - I asked her if that was on top of the 3 months that I have already got scheduled in and she said "probably not then, I don't know much about chemotherapy". Needless to say I will be discussing it with my nurse at the Marsden today as they have not indicated there is a problem with my lymph nodes, I do wish people would read the notes fully before making such comments, it really winds me up!

Am now on the Rescue Remedy to try to calm me down!

Counting down!

2006-08-01T23:32:00.000-07:00

I cannot believe that in 2 weeks time I wil lhave had my surgery - how scary is that! I have got a total of 8 hospital appointments before I go into St Helier on the 14th so plenty to keep me busy and keep my mind off the operation; some appts are better than others like the massage and relaxation therapy, so they make up for the not so nice ones. Today I have my pre-op assessment and Amy is coming with me to that, hopefully it won't take too long as we then want to do a bit of shopping which is something I find quite tiring on my own and Amy is working all this week except for today.

I have just spent a few days with Sue & Mike (my sister & brother in law) in Knaresborough, North Yorkshire which was great. I travelled with Carol who did most of the driving (5 hours driving is way too much for me at the moment). We had such a good time, taking an open top sightseeing bus around York and fitting in a lot of retail therapy including a factory outlet near York which was bad news for the plastic! Sue & Mike took us for a wonderful drive all around the Dales as Carol hadn't been to Yorkshire before and the evening sun meant that she saw it at it's best. Unfortunately I think the trip as a whole tired me out more than I thought it would and I spent all of my first day back in bed; thankfully I feel much better now but am taking things nice and slowly.

There is till quite a lot to do before I go into hospital, various things to buy like toiletries and squash and a new set of headphones as well as updating my ipod with some new music ~ will have to get Kevin to help me with that one, perhaps I'm not so IT able as I thought!!

This Saturday I am going to a wedding of a work colleague, it's at my parish church so as well as being a guest, I am also singing in the choir. The reception is being held at the Queens stand at Epsom Downs so I am really looking forward to that and was so glad that my treatment schedule meant that I was able to go; it's something I have been looking forward to for months. I must take it easy over the next few days so that I have plenty of energy to keep going all day ( I can fall in a heap on Sunday!).

Feeling very cross today

2006-07-19T23:14:00.000-07:00

Am feeling very cross today. I am so fed up with hearing about breast cancer….it’s as if women only get cancer there. I was watching the Kylie interview on Sunday and got really cross with her as well! She looked wonderful but then so could we all given the team of make up etc she no doubt has; she chose to have her chemotherapy in Paris and looked out of her window to see the Eifel Tower sparking and she said she thought it was sparking just for her ( oh perwease….if I look out of my window at 9.30pm I can see the street light sparkling but I think in reality it is merely flickering as the bulb tries to kick into action!). She was saying that she took a year out as soon as she was diagnosed and that made me cross as well (!) she obviously had no worries about being put on half pay after a certain length of time………..gosh I do sound like a crotchety old bag don’t I?

I just thought about all the ‘ordinary people’ who have to carry on working and coping with daily family life as normally as they can whilst coping with all the treatment and the vile side effects, and that the options open to her are actually so far removed from most of us, I found it very hard to even relate to what she was saying.

Sorry about that….I needed to vent my anger and I feel better now!!!!!

I am so not liking the excessive heat this week although I have managed to go to work just for the mornings and then I am coming home and lying on my bed with the fan on and having a sleep – lovely. Hope you are all coping with these high temperatures and I expect, like me, looking forward to the weather breaking soon.

Today I've had my summer holiday!

2006-07-17T14:39:00.000-07:00

I promise this won't be a daily diary because that would be so boring....but Ihad to chuckle today. One of the treatments I am having is relaxation therapy and I went for a session this afternooon. Well........ I have already been told that I wasn't to go abroard this year for a holiday to anywhere hot because of the effects of the chemotherapy, although I'm sure they hadn't bargained on such high temperatures on the Costa del Morden. My therapist was doing ' guided visualisation' with me today and I was in a reclining chair with my eyes shut listening to a CD of the sea, all very relaxing ( which was the whole point so it works!). She guided me to imagine I was in a cottage by the sea and then I went down some steps and felt the sand in my toes, I then dipped my feet in the water (no 'bloody hell that was cold' so obviously a dream!)and then I slowly came back to the cottage. And that, was the nearest I will come this year to a summer holiday!!!!!!!!! The best thing about that holiday was that there were no flights, I just closed my eyes and I was there and I never spent any money!

Ug's away

2006-07-16T14:25:00.000-07:00

Welcome to my new venture. I thought this would be easier to update everyone and hopefully I may have some fun doing it as well.

For those who are confused about my blog addy, I have named my tumour Ug which stands for 'Uninvited Guest' since I certainly did not give it permission to lodge itself in my body. A friend of mine, on hearing it's name thought that Ug should be as in 'ly bastard' and I have to say I rather like that one!

The year so far has been such a roller coaster and most of you will have read my updates as I've gone along but to re-cap I've had:~

1st 12 weeks - daily injections to thin the blood (most given by Amy, she was a star to do that for me); weekly intravenous anti- body drips; every 3rd week a chemotherapy drip as well; a cocktail of tablets (sometimes up to 20 a day) and as for the side effects of all this..... they were vile.

Next 6weeks after the above - daily radiotherapy; weekly anti body drip + tablets again.

Where I am at the moment - not drips, no radiotherapy, no tablets.....hoorah!!!! This is to give my body a chance to settle down before the surgery to remove Ug (hence "Ug's away") which is scheduled for 15th August. I do have a variety of hospital appointments with my surgeon etc in between now and then but am enjoying the break from my daily visits to the Royal Marsden Hospital { known with affection as my country residence}.

I have had the last 2 weeks off work as the radiotherapy made me very tired but am back now just for the mornings, there really is only so much daytime television I can take! Prior to that I have managed to work for part of the days that I have not been attending appointments. After this week I have taken a weeks leave and am going to spend a few days with my sister Sue in north Yorkshire, travelling with my best friend Carol and am so looking forward to that, I am hoping to recharge the batteries before going into hospital.

Will close for now, feeling very proud of myself for setting up this site, with grateful thanks to Liz (xxx)